Friday 20 December 2013

Appointment Updates and Christmas Plans

It's been nearly a month since I last posted, where has the time gone?! The days all seem to blur into one right now.

I've had the odd things I've wanted to write down, but nothing I could put (fluently) into a blog post. It's mainly little updates, my thoughts etc. Usually what I write about haha! This probably won't be a very long post and I'll subtitle each bit again. It seems to look a lot more organised that way!


I received a letter, the other day, from the physio department of my local hospital. This is for the bladder training (see the I Still Need to Talk post). They had me down for a date I couldn't make. My dad always brings me to appointments because of my anxiety with travelling alone, and this was the day he had to have a normal day shift instead of afternoon shift. I surprised myself with how confident I sounded when I finally phoned to ask to rearrange the appointment. I do have a lot of anxiety with phoning. It's more answering calls than making them, due to the fact that I can't plan a conversation when answering the phone. The odd time I'll do it without really thinking though. It's so strange. I mean, I'm pleased I can answer the phone confidently sometimes but I don't get why other times I'm terrified of it? Could this be to do with when my depression gets bad or something? Anyway, the appointment was changed no problem, and it's not much of a wait luckily. I'm curious to see if there's much they can do for me.

Christmas is such a busy time of year, I wasn't able to pre-book an appointment to discuss my bladder diary with the GP. I've just decided to wait until after the Christmas period. I'm still doing my bladder diary every day and if I show the days that were worst, then the doc is more likely to do something.

Brainfog (Trigger Warning: Body Image)

Last week my brainfog royally let me down when it came to sorting out my medication. I'm on 300mg Gabapentin; to be taken 3 times a day. Last week, I'd noticed I was a bit low but my damn brainfog made me very confused about how many were actually left and whether I still had another full box in my room. I thought I'd be able to last the weekend, but realised on the Friday that I only had one left! My mum rang up the doctors for me, to ask for an emergency prescription. They said they'd do it (after slightly telling me off for not being "more careful"). My dad went to pick it up after work, just before the surgery closed. They'd forgotten to do it!!! And it was too late to quickly get a doctor because they'd all left. You'd think an urgent prescription would take priority... For anyone who doesn't know much about Gabapentin, it's one of those meds that you have to wean yourself off as it can cause withdrawal symptoms. I think this can be fairly dangerous for some people. It can make you feel very very ill anyway. I did get withdrawal symptoms over the weekend. I felt boiling hot, then freezing cold. I would get cold sweats then normal sweats (yum!), shaking, generally feeling very out of it. I also felt very sick all the time. I had other symptoms but I wasn't sure if this was just part of the Fibromyalgia. I was worried it would be a lot worse though. Maybe if I'd been on a higher dose, then I would've been, but I'm glad I wasn't. I do eventually want to get off the Gabapentin anyway. They do absolutely nothing for me and I've been nothing but miserable on them. They are supposed to help with nerve pain, but mine is just as bad as it's always been. All they do is make me put on weight. Others say I look fine but I do hate the way my body looks. I want to exercise lots, do some intense workout, but I'd make my fibro even worse. It just wouldn't be worth it. So after Christmas, I'm going to really try and eat healthily. I hear yoga can be quite good for spoonies (google The Spoon Theory) too, so I'll ease myself into that and see how I go.


I'm still waiting on more contact from the disability advocacy service. I'm sending as much evidence as I can, so the tribunal are fully aware of where I'm at with mental health, hospital appointments etc. Which reminds me, I have another two letters to copy and send! It annoys me that my condition is taken less seriously because I'm not seeing a specialist. I've seen a Rheumatologist once, and because he was happy with the meds I was on, and there was nothing he could do to sort of 'fix' me, then all he could do was discharge me after confirming the diagnosis. Maybe they'll take my bladder condition more seriously now I'm seeing a physio for it? Or maybe I'm being too optimistic... I really need to chase up this advocacy service anyway.

Mental Health (Trigger Warning: Suicidal Thoughts)

I feel a bit abandoned and cynical about the whole thing at the moment. I have a referral/review letter from my Psychologist due to the things we talked about in the last appointment with her (see I Still Need to Talk post for more details). As I said before, the GP had referred me to the Mental Health Team and RAS had discharged me with absolutely no contact, as I hadn't actually attempted self harm or suicide, even though I regularly had thoughts. The only reason I haven't carried anything out is because of family and friends, and the fact that I live with my parents. If I lost any of them, I fear that would be the tipping point. This is why I get so so upset when I do lose the friends I thought I had. I know I should just think "screw 'em" but when you think you know someone, you think they are understanding and supportive, and they just decide they are done with you, it's like a slap across the face. It is hard to move on from that. You want to know what you've done. Did you say something insensitive? Or are they just bored of you not getting better yet? Whatever it is, I'd rather know. But I probably never will. The friends who stick by me are my support network, the people I can turn to without fear of judgement. They can even distract me from my darkest thoughts and I am extremely grateful to them for that. I feel guilty that I burden them with these thoughts (which is why I tend to be the most honest in this blog) but I'm glad they are there when I need them, and vice versa.  I include my Twitter friends alongside my IRL ones in this of course.

I did digress a bit there! Anyway, back to the mental health stuff. So, I was very honest with my Psychologist and she sent me a copy of this review letter. It states that I was at a step 2 intervention level with her, doing guided self help; based upon a Cognitive Behavioural Therapy program. She now wants me to be seen by a High Intensity Therapist at a step 3 intervention level. I've googled these to see what is different between the two. Correct me if I'm wrong, but step 2 is for mild to moderate mental illness and step 3 is for moderate to severe right? Step 3 sounds like the right level for me; as I have been diagnosed with moderate to severe Depression and (I think) moderate Anxiety. In the letter she talks about complexities of my mental health too. This may be to do with my thoughts about the abortion and also my anxieties with bladder stuff. It looks like she's upped my 'risk' bit as well.

I've not had any contact from the Mental Health/RAS team yet and I think that's why I'm feeling a little cynical. I wonder whether they will refer me back to my GP, without contacting me (and actually assessing me!). What do I do in the meantime? Do I bug the hell out of Mind/Rethink? The emergency numbers are there, and the Psychologist has insisted I ring them but if I'm completely broke down and in a mess, the last thing I'll want to do is pick up the phone. I guess all I can do is wait and cope in the meantime.


I am kind of looking forward to Christmas this year; although I'd like a bit more time to actually prepare. How is it the 20th already??!! My mum and I decided to make presents this year. We both love baking so we're giving out little boxes of handmade treats to close family. The last of the cards need to be sent out today as well. I forgot how bloody expensive stamps can be. Can't we all just live on the same street? :)

We're going to try and plan out the Christmas dinner so that it is as stress free as possible, and we won't have too much to do on the day (precooking the day before etc).

I'm going to leave it here and actually get something to eat now! My next post will most likely be after my Physio appointment. I hope everyone has a lovely Christmas and New Year :) <3

Thursday 28 November 2013

I Still Need to Talk

My head feels like it has about a million thoughts buzzing round it right now. Isn't it funny how things like to happen in one big batch instead of one or two things to cope with at a time?

I may have to start using that relaxation CD my psychologist gave me a while back. It might even help with sleep; something I miss! Ok, let's try and get these things written down in some coherent way...


I've been bugging her a bit recently, wanting to sort out things before they get even worse. I went to see her on the Thursday (last week) to talk through the overactive bladder stuff and the mental health stuff. There was a medical student in the room with us. Normally I wouldn't have minded, but I was talking through some pretty personal stuff. I would have felt a bit rude, asking her to leave though, so I just tried to forget that she was there. I've been doing well, having water every day and cutting right back on caffeine. My bladder symptoms are exactly the same though. I believe it is partly physical, partly psychological. I had cystitis quite a few times during 6th form back in 2007/2008 and it's never really been the same since. I have learned some behaviours though; which I think makes it partly psychological. She gave me a bladder diary to fill in (which reminds me, I still need to do it!) and has said to see her in the next week or so to go through it with her. She has also referred me to a physio for bladder training exercises. I'm waiting on the appointment for that now but hoping it'll help a bit.

As I said in my previous post "Lost", my next session with my psychologist would be my last. It did worry me a lot because I know I'm not ready to just do the self help stuff and there's still a heck of a lot I need to talk through (e.g. the abortion). I explained as much as I could to the GP and she referred me onto the mental health team to see what else they could do for me. She was really good as usual :) I feel like she always tries to do something, lets me have some say in my treatment but doesn't leave it completely up to me. I don't have all the answers, I wish I did!

Work Programme

I felt so so ill on the day. I've been sleeping really badly recently; not getting to sleep until at least 4am. I think there'd been a bit of a miscommunication the last time I'd been there though, or I might've read those horrible sanction-y bits of the appointment letters wrong. I was under the impression that if you even missed one appointment, even if you let them know beforehand that you were too ill to attend, then you'd lose half your money? So naturally I've been getting dad to drag me along no matter how ill I felt (every. single. bloody. time) and trying to concentrate on what the adviser says. Thanks to an extremely painful stomach I ended up nearly 15 mins late for my appointment. I had a bit of a telling off for that. I did try and explain but in the end I just ended up apologising. These appointments seem a bit pointless at the moment. I feel as if I'm wasting their time and, being an ESA claimant, there's hardly any staff there that are trained to deal with sick and disabled people with a variety of needs. Trying to get the lift each time is an absolute nightmare. I get that they don't want people abusing facilities for people who need them most but the damn thing is key operated and I don't have a key. Whenever I press the buzzer, I'm not given a chance to say I need the lift, so they just buzz me straight in. It is literally pot luck that so far, there has always been a member of staff who happens to be walking by, who can operate the lift for me. What if there's that one time that I'm not able to get hold of anyone? Will I have to miss my appointment or be so late that I get sanctioned? All because the building is so bad for access?

Anyway, after a bit, the woman was a bit nicer. I think she was just miffed that I was late. The whole thing was a bit of a blur, I just remember her going through my next appointments then getting me to sign a form. I didn't like how one of the things on there said "Mandatory Activity" though... I couldn't wait to get out of there.

Psychologist- Trigger Warning: Suicidal Thoughts

I had this appointment pretty much straight after my work programme one, so I was exhausted, mentally drained and constantly on the edge of tearing up. Oh and just so little miss atos nurse knows (if she is reading this, probably not :P), yes I was rocking back and forth in my chair! Does that confirm the Anxiety diagnosis enough for ya? Damn you're good at mental health, have a medal!

I'd written down everything I needed to say and tried to explain it as best I could, considering. I said how I was nervous about this being the last session, how I agreed the focus should be on pain management but there's also a lot I need to talk through on a one to one basis and I feel I still need some support from the mental health team. I told her I'd been to my GP and she'd referred me to them though.

Ooh also another thing. I'm not sure if I've spoken about it in previous posts as it's a fairly recent thing but I came across a CBT online training diploma course! The price had been knocked right down to £40 and luckily I'd saved some money, so jumped at the chance to buy it! So that's one good thing, I've just got to try and concentrate enough to complete it. There's no time constraints or deadlines luckily. So I told the psychologist about this, and she was really pleased that I was doing something to help myself career-wise.

She asked me whether I'd had a phonecall from RAS (sp?). I said I hadn't had any phonecalls from them and didn't know who they were? Apparently the GP had referred me to the mental health team, but they'd referred me back? Really strange. There's always this thing about how much of a 'risk' I am though. I have suicidal thoughts but it seems these RAS people think I don't need their help because I haven't planned or attempted anything. Hmm well I'd rather not get to that point so the 'risk' is that I might do if I don't get proper support. Some self help guides are not going to change that. If I just needed self help, then I never would've been to the GP in the first place. I had to then admit some pretty messed up thoughts about suicide and stuff. I could barely get my words out but I was saying that this was also why I felt I needed to have more sessions. I've lost quite a few friends recently. Well, people I thought were my friends anyway. I had times where I felt completely useless and unwanted. Also all this ESA stuff. I have been thinking about suicide more and this is why I can't just be abandoned by mental health team. The psychologist was really good, she said she'd refer me again because she thinks I need continued support. She's also given me her email even though she's actually leaving on Friday. How nice is that? I've felt so lost recently but at least now I know I can contact her even when I can't use the phone due to anxiety. She also said she was upping me to a 3, is that something to do with priority when it comes to psychology? I might have to research that. I'm going to miss her. I know that I haven't really progressed but she has tried so hard with me.

I'll keep you updated with these referrals. At least I'm feeling a little less lost though!

Tuesday 19 November 2013


I'm feeling a bit all over the place recently. Too many questions in my head and I'm worrying about various things.

Well one thing I can be certain of, I'm definitely hypermobile! Can't believe I didn't realise it before. My thumb is very bendy but I thought that was it! After my doctor's appointment, I admit I googled hypermobility and what hypermobile joints actually look like and found that my legs definitely bend back on themselves, I can do the bendy thumb thing, can touch my thumb to my wrist, my elbows bend back on themselves. There's probably more but I've not noticed it. But yeah, the only thing the GP has suggested is strengthening exercises; which I have to try and do every day. If I can at least strengthen my legs then that's something!

Ok onto the not-so-sure stuff. Last week I had a phone call from my psychologist to see if I could get an appointment soon. Unfortunately, because of my struggling/generally being unsafe on stairs, I can only get a downstairs room (the building doesn't have a lift) and her appointment slots seem to be filling up ridiculously fast. She said she'd call me back again to sort it out but I haven't heard anything back and might have to try and catch her tomorrow. One good thing, she's sent me a couple of supporting letters for my appeal, free of charge! I consider myself extremely lucky with that. She's put in one of them that I'd benefit more from pain management; which is true BUT I definitely need more psychological support because not all my mental health stuff is related to the fibromyalgia. The thing that made me panic though, was that she told me my next session with her will be my last. Part of this is the fact she leaves next month, but you only get 6 sessions apparently. It's Cognitive Behavioural Therapy; which is intended to be short term.

I just feel like we've barely skimmed the surface of the things I need to either control better, face properly and/or accept for what they are. The suicidal thoughts, still there. The guilty and trigger-y feelings from the abortion, still there. The guilt and burden-y feelings from relying on my parents, still there. The terrified feelings and avoidance of group situations and situations where there isn't a toilet, still there. Also I still have the wasp phobia to sort out and need to have my phone anxiety properly dealt with. We've only just started some of the behaviour therapies and help with sleep problems also. There's just so much that I'm not able to deal with on my own. I've had the odd positive time. Once in a while I can answer a phone but I usually find this will only happen (and VERY rarely will it happen) when I'm feeling a bit detached from reality. Once in a while I'll be excited about something. I had a brief moment of excitement when I got my new laptop (Yay! It has all its own buttons and doesn't beep loudly when I switch it on!) and another one when I could afford an online CBT diploma course but I still feel very negative about the future. I want to start seeing improvements already.

I have an appointment to see my GP again on Thursday. I've decided my overactive bladder needs to be taken seriously. It's affecting people around me now because I panic when I need to travel anywhere. It could be as short a journey as 10 minutes but the feeling makes me panic. It takes me a while to be ready and sometimes that makes us late. I sent a panicky email to MIND and they sent me one back; giving me links to all the emergency lines, what to do if I need to attend A&E because of certain things and they even said that if I send them my postcode, they'll see if there's any of their counselling services near me. I'm waiting on their next reply but I definitely need to talk about this to the doctor and make her realise how I'm not just suffering from a bit of a bad mood. It's much much more than that and has been going on a while.

Weeks ago I had a visit from a disability advocate and the mention of a possible representative for the appeal. I've heard nothing since. I need to phone them but the damn phone anxiety holds me back.

I also have a group therapy thing I've been referred for and a graded exercise programme. Both of these include groups of up to 20 people, and this makes me feel very nervous. I know that everyone will be ill like me so it's not going to be extremely formal, but that doesn't reassure me. I'll be thinking about needing the loo all the time and that's assuming I'll even turn up! I want to be ok in groups but I don't deal well with being thrown in the deep end. I'd happily take part in the graded exercise IF it wasn't in a group situation.

Blah, too much to sort out!

Friday 8 November 2013

My Weird Knee/Leg

Ok, I'm hoping these upload properly. I recently got a new laptop with Windows 8 and I'm still getting the hang of it. (I saved up for ages and needed a new laptop so, to the people who have a problem with what us claimants spend money on, swivel on this!)

Since the end of school, even before I started feeling ill, I've had a weird thing with my knees/knee joints. Nearly every time I kneel down, it feels like it's popped out of place. It happens mainly with my left knee but it sometimes happens with my right. It's VERY PAINFUL. I don't think it's the kneecap that pops out of place, more the actual joint? I'm terrible on knowing proper names of joints etc but I hope you understand where I mean anyway. I don't know whether to call it dislocation or whether it's like a very slight dislocation but, because it's happened more and more over time, I did get a bit worried about it. I can pop it back into place if I move my leg around a bit and/or massage the joint with both hands. It feels like it's completely locked and any attempt to stretch my leg out is extremely painful and impossible to do without manipulating it with my hands.

I've tried explaining this to GPs and a Rheumatologist but they really didn't seem that worried? I have weakness in my legs so the rheumy seems to think I just need to strengthen them a bit. I'm waiting to be put on a Graded Exercise programme, it's just about finding sessions that are at times when I can actually attend. I'm willing to give anything a go really. But I do wonder whether I should get it scanned just to see what on earth is going on!

Ok anyway, today I decided to take a couple of pictures and a video just to show what happens. It really doesn't look that interesting though. You can't see anything pop out of place (unless there's something I just haven't spotted) but in the video it's very clear that I'm in pain and not able to stretch my leg out. It's been about 4 or 5 hours since I made that video and I'm still getting pain in my left knee and it just feels weird! In the picture (after popping it back into place) you can see a bit of redness and it kind of looks like a bruise? I'm hoping this picture comes out clearly. It's annoying that it's not more obvious as I'm worried the doctors just don't believe me because they can't see it for themselves. I will show the video and pic to my GP when I  next see her though. I just wanted to know people's thoughts really! Any advice would be brilliant :)

It's a little bit faint (looks darker in real life and there's some redness) but here's the bruise where I feel the most pain.

I may need to edit the post as I'm not sure if the video has uploaded properly. I probably need to compress it or something. But if you can see it, I apologise for the amount of times I cry out in pain. It was very painful! I wish it was more obvious; what's going on. It looks like nothing is happening with the knee, you can just tell that I can't stretch it out. This is why I'm reluctant to call it a dislocation.

Ok, so that's my weird knee! Any advice would be very much appreciated :)


66 views on this post, thank you! :D It's so nice to know that people are actually reading my blog and sharing their views via Facebook or Twitter. Again, if there's any suggestions, please let me know! I've been told that some people are having problems posting comments on my blog posts. No idea what's going on there but I'll have a look or Google or something and see what's going on. 

Ok, so I went to see my GP today to explain about my knee/s and show her the video and picture. The bruise and redness is a lot clearer on my phone so she could see straightaway thankfully. Luckily the brainfog wasn't too bad either so I could actually explain properly and didn't need to write it down. She examined my knee (much more thoroughly than the Rheumatologist might I add!) and didn't find anything wrong with it (grrr) so she reckons I don't need a scan. She diagnosed my knee problem as Hypermobility and gave me some strengthening exercises. I did mention EDS and said "it's not that is it?" and she reassured me it wasn't. I'm still learning about the condition but I do know there's a difference between being hypermobile/double jointed and having Ehler Danlos Syndrome. I just wish there was more of an answer. I was hoping this would be something that could be scanned and hopefully fixed. I get a bit fed up of having illnesses/conditions etc that can be 'managed' (using the term very lightly!) but are essentially incurable. 

These kinds of things make me worry about the future I guess because I want to know that there's some hope that I will get my symptoms under control enough that they don't severely limit my life. I'm not expecting to go back to that capoeira-ing, cheerleading, clubbing, going on long walks student again (although that would be friggin awesome), just to be well enough to hold down a job without calling in sick every other week, having a bit of a social life, meeting new people, being happy and positive again. Maybe it'll happen sooner than I think? I just wish I knew when. I'm impatient, could you guess? ;)

TRIGGER WARNING: Mentions of diet, body image and weight loss

I've also decided I'm going to really try to eat healthily. I'm a real emotional eater. Cheesy pasta, crisps, chocolate, fried chicken, these are the things I crave so much when I'm feeling stressed or upset. I'd like to take control of that. I don't feel better after eating those things really. I enjoy healthy food of course, but I give in to my cravings far too easily. The meds I take have the side effect of making you put on weight and I hate it. People used to always say "Amy, you're so skinny!", not anymore lol! To look at me now I don't think people would say I look overweight. It shouldn't bother me even if they did think that but the point is that I want to take steps to be healthier and feel happy with my body again :)

Ok, I'll leave it there. That was a longer update than I thought it'd be! Thanks again for reading :)

Friday 1 November 2013

Don't lose faith

I've been a bit quiet since my last post. I don't even know if talking about it openly would affect my claim, but I've been a bit worried about mentioning things to do with ESA appeals on here. I won't go into a massive rant about it all but I will keep you updated.

Ok so I'm appealing to go from the Work related activity group to the Support group. I'd been to an initial meeting to be told I had been placed on the Work programme, and would be in the Work related activity group for 6 months. The dwp apparently had said that they believed my Fibromyalgia was a short term illness. I've probably mentioned this in previous posts, but I just want to be clearer here (as much as my foggy brain lets me anyway!). I wasn't happy about the 6 month thing but I wanted to give this group a go; challenge myself I guess. It turned out to be completely unsuitable. Most of the staff seem lovely and the two advisers I've seen so far are very nice and appear to want to help. Most of the 'customers' (I hate that term) are jsa claimants and most of them have very different needs, but the requirements and treatment are pretty much the same as for esa claimants. There's only a couple of advisers for esa claimants too. It's just the fact that it's believed I could be looking for work by March, can go to group sessions etc. It's making me flare up every time and there is no way that I'd want to make my illness worse. I was 10 minutes late for my last session as I'd got really panicky before I went out the door. It wasn't quite a panic attack but I was having the breathlessness, dizziness, sickness thing and felt like my heart was beating ridiculously fast. I've heard of people becoming bedridden and if I can avoid that, I will. Also, my mental health was pretty much ignored in my assessment as I wasn't rocking back and forth in my chair and I kept eye contact (their words, not mine). Do they not realise it is possible to look fine, whilst having horrible anxiety and suicidal thoughts? I may cry fairly easily, but I'm pretty damn good at acting fine. Clearly that's gone against me now.

Ok, so I put my appeal form in, said I'd be sending a gp letter as evidence etc. I went to the gp and was told that dwp would send a form to them if more evidence was needed. They didn't, so I failed that part. So I'm carrying on and am in the middle of collecting the evidence I need. I've had a visit from a lovely disability advocacy service too and they'll be helping me. All the paperwork I have to try and go through makes me flare up too. I'm trying to concentrate for longer (not working!) but it is taking me a while to get through it all. I went to see my psychologist yesterday as well. I think this was my 4th or 5th appointment?

I felt really on edge yesterday. I don't know why, just couldn't keep still. If anything, it helped me talk about pretty much everything I wanted to in that session, even if I did feel exhausted after! I think I forget that even having a conversation costs spoons. I also felt weirdly numb and detached. I don't know if it was just the brain fog or something, but I felt like I was watching myself say the words. When the Psychologist asked me how I've been recently, all I could say was "I really don't know". Maybe I haven't really let myself stop to think about how I felt? Anyway, we covered the appeal stuff and how I was getting on with asking for help. I've been doing ok with that, although my mum usually has to ring for me. I do get phone anxiety most of the time. Making calls isn't too bad as long as I know what to say and have a bit of an idea of what to expect as a response. I tend to note down the things I need to say so I don't go completely blank. Answering phones, I'm not so good with. If I don't recognise the number or it's a withheld number, I'll ignore it and hope that if it's important, the caller will leave a voicemail. Mum has had to answer any work programme calls because I've been getting seriously panicky. I don't even know why! It'll only be about an appointment or something. It's not like they'll be bombarding me with awkward personal questions. When I was working, I used to absolutely hate answering phones. It's something you have to do in practically every job though, so some colleagues/employers didn't like it when I clammed up or let them answer the call. I hope I can work again in the future. I don't know when I'll be able to because I'm struggling so much, but I hope that one day I will be on medication that works. Not cures (unless a miracle happens lol), just works enough to make working a possibility. So of course if/when I can work, I will need to be much more confident with phoning/answering calls.

So we addressed the phone anxiety. I have to try and answer the landline at least 3 or 4 times a week. A bit of exposure therapy I suppose. I don't think I've ever been great with phoning so it's about time I sorted it out. We also discussed my future. When I think about how I am now, and how the future might be, that tends to trigger the depression. It's made me extremely pessimistic. Ever since I was 13 years old, I wanted to be a Clinical Psychologist. It is my absolute dream. But I need to be healthy enough to train, get lots of experience, do lots of courses. I also need to be stable enough mentally that I can deal with the kinds of things that clients will talk to me about. I need to be prepared to hear some pretty tough, upsetting things. I can't show my emotions too strongly when I need to be strong for them. I can't burst into tears because I really feel for the client. Of course I need to be caring and compassionate, but I also need to be professional. We spoke about this in length and how I felt like I was never going to get where I wanted to be because of my health constantly letting me down. The psychologist didn't think it was out of my reach though. It will just take some time. She said I should look at courses now and it will surprise me how accommodating lecturers etc can be. I hope that's true. I've been looking at online courses but I don't know how to find the funding, and I suppose I've lost a lot of faith in myself.

We covered a couple of other things but I think the main points were that I needed to plan things out and not be afraid to ask for help and be assertive about my needs. I need to have a little bit of faith in myself.

Other than that, I suppose I've been trying to act a little more positive. I don't feel more positive, I'm just trying not to sound constantly moody on social networking sites, even in real life (a bit). I don't want to push people away. It does feel a bit fake though.

Ok, I'll leave it there and keep you updated :)

Friday 11 October 2013

World Mental Health Day and the Importance of Support

Yesterday was World Mental Health Day. To commemorate it, I thought I'd talk a bit about how I got the support I needed, why I'm so glad I did take that step and to speak a bit about attitudes towards mental illness even today.

I've probably had symptoms of Depression and Anxiety for much longer than I realised. I just figured I was more of a 'worrier' than others. I still use that term but, when it gets to a point where it does affect certain things in life, that's the time to see someone about it.

I didn't actually talk to a professional about how I'd been feeling until earlier this year. I almost didn't bother; thinking I could just deal with it myself. But I'm very glad I did. I took a deep breath and opened up to my GP; talking about how I wasn't even sure what it was, but I have ok days and very bad days. The ok days are when I'm busy and distracted. When I think about things, especially at night, I have these sudden 'crashes' where my moods are so low it's hard to cope. Like I don't feel comfortable in my own skin. I also feel irritable, can't cope with conversation and, although I feel very lonely, I can't bring myself to talk to anyone. I just want to curl up in a ball basically. I hadn't said everything to the GP at that point but she listened, and told me about my options. I could try anti-depressants if I want and/or could use the self referral service Healthy Minds. I decided against the pills (I take enough already) and said I would give counselling a try first.

It took a good couple of weeks before I got up the courage to phone the self referral service. I had written notes, thought about when I'd be free for appointments etc. It was a lot easier than I thought. The initial phonecall was just to take down details and make a phone triage appointment. I would also be sent some mental health questionnaires to fill in. I had those ready for my triage appointment and the psychologist I spoke to was brilliant. After this, she told me she'd send me an appointment soon.

I saw the same person I spoke to on the phone. I only realised it was her when she said. That's what is important about appointments I think; consistency. When you're opening up, speaking about your most personal feelings and experiences, you want to know that it won't be a different person hearing it every time. There's an element of trust to be built up and it encourages you to be open and honest; which altogether helps with gaining the right treatment and support. I've now been diagnosed with Anxiety (I think mild/moderate?) and Depression (moderate/severe). I've had 2 sessions so far, 4 left and think it is going fairly well. There's a few interventions she wants to try as well so I have bits of 'homework' to do.

Before I finally went to see my GP about this, I wasn't even sure if I was ill enough to deserve the help, or even if it was Depression that I had. The NHS website had said this: "If you experience symptoms of depression for most of the day, every day for more than two weeks, you should seek help from your GP."

I saw my symptoms of Depression more as 'crashes'. So it wasn't like a continuous feeling, although the crashes would last a while; up to days, and they would keep coming back. It was only when I realised how much it affected the way I spoke to people, my likelihood to answer the phone, whether I even wanted to speak to anyone, that I realised I needed help. It's all well and good to look after my physical health, but mental health is just as important. The state of your mental health can affect your physical health and vice versa.

I began to open up about my mental health on this blog. I want to branch out and talk more about mental as well as physical health/illness as both are subjects of interest to me; as well as relevant subjects. I wasn't sure about the response I'd get, but it's mainly been a very positive one. I've found that people are more likely to open up to me now and it's surprised me, how many people have been feeling exactly the same, and I didn't even know! As well as helping raise awareness and break down misconceptions, I hope this blog can help me to understand my own friends more and create important connections. I do hope that I am able to give out as much support as I receive as well, I am very grateful.

Stigma- TRIGGER WARNING: Mentions of disablist language.

Stigma can be one of the reasons someone might not seek help about their mental health; whether it be from loved ones or medical professionals. Recently, tabloids have been a major factor in exacerbating stigma. The infamous headline from The Sun for example: "1200 Killed by Mental Patients". The careless sale of "Mental Patient" Halloween costumes by Tesco and Asda also. They have apologised since (too little too late?)

The fact is that more education is needed about mental illnesses; in order to help break down stigma, abolish misconceptions and altogether create better understanding. We also need to look at the language we use. Words such as 'mental', 'psycho' and 'schizo' are extremely offensive and stigmatising. Using this type of language should be seen as just as offensive as using racist language.

Trivialisation of mental illnesses must be stopped also. I have personally heard conditions, such as Bipolar Disorder and Obsessive Compulsive Disorder used in careless ways. Someone may describe themselves as feeling a little Bipolar on a particular day, or may say they are "a bit OCD" because they like things to be neat. Attitudes like this, frankly, are disgusting. You wouldn't say you were feeling "a bit Cancer-y" or "having a bit of Parkinsons" would you? It's completely out of order! Also, remember with illnesses, such as Depression, it isn't a case of "cheering up" or "pulling yourself together". Would you tell someone with a broken leg to walk it off or use "positive thinking" to cure themselves? No you wouldn't. My advice would be to listen to the person, take a bit of time to learn about the illness they have (be it mental or physical) and be understanding and supportive. Don't ask why they feel the way they do. Sometimes that's just the way it is. You don't need a particular reason to have a mental illness.

I am so glad I sought the help I did. I see this as only the start of my journey to get the support and treatment/therapy I need but it is a positive step in the right direction. If you feel that your emotions are getting hard to cope with, I would say talk to someone first of all. Speak to a trusted friend or family member and go to your GP if you feel you need more help. If your GP is unwilling to help then see a different one and remember that it is 'your' mind, 'your' body, 'your' health. Everyone deserves support when things get tough.

Here are some useful links: - I think this is the first place we think of when in crisis. You can contact them by phone, email, post or you can drop in for a chat. - This mental health charity is brilliant, and I would love to volunteer for them some day. You can get information and advice as well as reading up on the experiences of others. - Another brilliant mental health charity. This charity does a lot of campaigning and fundraising.

And finally Healthy Minds - This is the self referral service I used; in order to access counselling. It is worth looking to see if there's a similar service in your area. They will assess your needs and, from what I've experienced so far, this does not seem to be a "One size fits all" service.

My post "The day I opened up about my Mental Health" will give a bit more information about my own experiences.

I hope this post has been some sort of help but please comment with any suggestions/corrections :)

Thursday 10 October 2013

My lovely GP is back!

I'm just updating you all, so this will probably just be a short post. Please see my latest one about World Mental Health Day as well :)

Ok, so my GP has returned from her long holiday! I was so glad, really needed to see her and keep her updated on things. I also needed to explain about esa to her and see if she could give me anymore letters etc.

I got there just in time but surgery was running late. I'd been rushing around, getting everything I needed to bring, so didn't realise just how bad my pains were. The waiting room was busy and as I waited I realised just how much pain I was in. It was a mixture of dull achy pains, 'heaviness', weakness in my legs, a tightness around my back and front (almost like an invisible 'belt' of pain?) and sharp pains all over. Now up to a certain degree, you can hide your pain, put on a poker face and get on with whatever you're doing. Mine was so bad that I was covering my mouth to keep from crying out too loud whenever I got the sharp pains. I was really at a point where I honestly didn't care how I looked to other people. I just wanted my appointment to come soon so I could go home to bed soon.

I really do love how my gp is with me. She recognises me, actually reads my notes (which seems to be a rarity with some places!) and I don't have to explain everything over and over again (massive relief when brain fog is bad). Ok so I'd noted down what I wanted to talk about: the Lyrica doing naff all, possibility of a supporting letter for my appeal and needing a new box of the pill.

This is such an understatement but fibromyalgia is such a bloody awkward illness to have. No cure, lifelong, fluctuating and you're lucky if you find medication that actually helps with the symptoms. Before my diagnosis, when doctors were saying it was probably chronic fatigue syndrome, I was prescribed 30mg Citalopram per day. That was increased to 40mg when I said it wasn't working with anything. They didn't even say what it would help with apart from maybe 'calming down' symptoms. All the increase did was make my dizziness and nausea worse as well as making me feel like I wasn't even on this planet. I was like a zombie so stopped that fairly quickly. I was told to give it at least 4 weeks but I was working at the time and didn't want to feel like that whilst at work! After ages of no treatment, and doctors not really bothering, then I got the suggestion of Fibromyalgia and was given Amitriptyline, 30mg per day. That helped a bit with sleep, but did nothing for pain. After that I was prescribed Pregabalin; starting at 50mg per day, went up to 150mg per day. At the higher dose, all it did was make my brain fog worse. So now I have been prescribed Gabapentin, 300mg per day. I've heard mixed reviews about this one but I will power through and hope that it helps a bit. The doctor said that if this one doesn't help, she'll refer me to the pain clinic. So there's options at least.

I just want to start feeling a bit better. All I've had so far are symptoms getting worse. I've gone from managing (but struggling) with full time jobs, to barely leaving the house and daily things (like cooking meals, washing up, showering) being a struggle. I'm young and don't want to spend years and years out of work.

Next one, appeal. I'd brought my copy of my atos report along for the gp to read and she agrees that, with my physical and mental health being so bad, I definitely should be in the support group. What she did say was that rather than me requesting a supporting letter, the dwp will send her a form to fill in if they need extra information from her? Is this right? If I'm honest, I've found the whole thing very confusing. In my esa pack, when I was given the decision, the appeal information was for jsa claimants, which is obviously very wrong...Ah well, it's been acknowledged that I'm appealing now so all I can do is wait and see and take it from there I suppose! I did actually have a missed call from the work programme people today, and when mum called for me (I was pretty much hyperventilating from anxiety), they said that the last interview had been cancelled and to attend on 30th of this month. I have no idea how I'll cope! It's a very busy office and I'll have to remember to let them know about the lift so I'm not struggling up stairs again. Also I'll be with someone different so that's another nerve wracking thing. Oh and what if I'm made to go into a group meeting again? Can I refuse? Ugh it's too confusing...

I was in bed all day after that appointment. Couldn't believe how bad the pain was that day. I know certain things can set off fibro symptoms but sometimes you just get a flare straight out of the blue! Also frustrating.

Ok, leaving it there and moving onto a much more purposeful blog post (hopefully)

Wednesday 2 October 2013

How do you measure your Worth?

I had my second psychology appointment today. It was supposed to be last week but taxis let me down. My parents are on holiday so I couldn't rely on lifts, had to make it there myself. I've not travelled alone in a while, so it was a chance to test my capabilities both physically and mentally. I want to know how much independence is within my control, I want to take control of my life. I don't want my physical or mental illnesses to control my life.

I had to take a taxi for this appointment, and luckily went with a company who actually sent the taxi on time! And the driver wasn't rude (a rarity round here). Again, I didn't have a clue what I wanted to say in the appointment, but I know the psychologist is lovely and she makes me feel at ease. I'd been given some 'homework' to do during the 10 days I would have the house to myself. I had to make sure I was doing 'something' each day; including something I enjoy. During the 2 week gap between appointments, I also had a work related activity group (esa) meeting. I may go into this in more detail.

We talked through how I'd been coping, how I was feeling, what I'd been up to. She seemed pleased that I'd been trying to keep myself busy, although it was established that I've been pushing myself too far again. Pacing is so hard to do when you just want to walk that bit further, do that bit more, last that bit longer. I have a habit of pushing that bit too much and going from suitably tired to absolutely done in and in need of days of rest.

We spoke about my depression, having the suicidal thoughts etc. I've been trying not to think about it to be honest. Again, I'm constantly looking for distractions. I have a VERY hard time relaxing because my mind seems to constantly be 'on'. Always drifting to thoughts; not necessarily healthy ones either. I said that one of my goals was being able to relax and not be worried about having these thoughts, and to not feel guilty for taking time out for 'me'. I always feel like I have to be 'doing' something (unless I should be sleeping at night of course).

I then mentioned about how I'd noticed my anxiety more, but it didn't seem to be irrational anxiety because it was because of something. My work related activity meetings. I'm still reluctant to talk about anything to do with benefits on a public blog but it's relevant to both my physical and mental health (which is of course, what this blog is 99.999% about!). It's just that every letter comes with threats of sanctioning if you do this, that and the other or don't do this, that or the other. It's like you're on probation or something. You feel as if all eyes are on you, watching your every move (making sure you're not doing more than you say you can do), judging everything, spotting any opportunity to give you the big 'S' (sanction). My last work related meeting was a work programme thingy. The guy on the phone (when booking that appointment) had spoken so quickly, expecting my every answer to be 'no problem', that I hadn't heard his question about extra provisions, disability access etc etc etc. I mean, you assume that any programmes an esa claimant would be put on, is only for an esa claimant. And in the majority of cases (if I'm not mistaken), there will be access issues. You expect the place to be on the ground (or at least 1st) floor of a building. When I got the appointment letter through, I had such a shock. It was to be an 'induction' and was on the 3rd floor of the building. My mum rang the place for me (Have I spoken about this in the last post? Not sure) and they said there was a lift. What they failed to say was that the lift was key operated and I'd have to let a member of staff know when I was buzzed in. So dad took me to the appointment, we were buzzed in and then faced with the lift. I was wondering why the button looked so strange and didn't work! There were no phones or anything so we were stuck. Either go home and get sanctioned for not turning up, or risk my own health by struggling up the stairs.

I'm sure you can guess which option I took and it took a long time to recover from it. 3 flights of stairs to me is probably like climbing a huge mountain for an able bodied person. Every step set off my painful hip, my feet burned, my back hurt like hell, I fell a few times, I was sweating profusely (yum), anxiety was ridiculous, but I managed it. Now let me make this PERFECTLY CLEAR to anyone judging me for climbing 3 flights of stairs when I say I usually can only make 1. This DOES NOT MEAN that I can manage 3 flights of stairs safely, reliably, repeatedly and within a reasonable amount of time. This is the kind of thing that drains my spoons, sets off major flares, is very risky to my physical health and is only something I could do once in a blue moon when there is absolutely no other option. Anyway, I got through the doors and signed in. Had a few funny looks from people (who I later found out were jsa claimants, not esa ones????) but this was probably because of the effect taking these stairs had on me. Straight after this, we were whisked into a meeting room and given a group presentation. I wasn't entirely sure what was going on but what I did know was that the presenter was talking about jobs and we were in a group situation. This was a very very high stress situation for me. My overactive bladder means group situations are a no go and I am in no way ready for working yet, so of course I am not thinking about the kind of work I want to do. My physical health is the main reason, but my mental health also plays a big part. Things which shouldn't be stressful generally, are extremely stress inducing for me. And what job is stress free? Long story short, I ended up breaking down, being taken out the room, meeting my personal advisor, filling in lots of paperwork (my hands were KILLING ME), talking about all my lovely little symptoms within earshot of everyone around me. I also had to set job goals, I mean wtf? I'm here to be supported, not to be pushed into work when I should be focusing on my health? It's not that I don't know HOW to look for work, it's that I'm TOO ILL for work. It was HORRIBLE. After that I decided I should really appeal. So that's where I'm at now.

I explained all this to the psychologist and she said she completely understood why I was so anxious, I was even showing my anxiety right there and then (and usually I hide all my illnesses extremely well). She was furious that I was forced to walk up stairs and even said that if she'd known, she would've rang up the office manager and insisted I was allowed to go home. How nice of her! :) It's so great to have someone (in a medical profession) on my side. She understands that I can't work yet and it'll probably be a while before I'm in a situation where it's a realistic goal. It's so great to have a professional whose main focus isn't trying to get me back into work ASAP. It surprises me as well. I won't go into detail with the rest of the appointment, but her (wonderful :) ) attitude towards this got me thinking about how important the concept of being in employment seems to be in our country (in our culture even)?

I'm not going to go off into some sort of capitalism rant. I won't even go that political but I will mention the Conservative slogan which seems to be everywhere: "For Hardworking People".

Are we only 'hardworking' when we are in employment? Are we not worth having human rights otherwise? You see, in this country, it seems that our 'worth' is measured by the things we achieve. And valid 'achievements' are always career oriented whether it be directly or indirectly. It seems (and isn't my view at all, let me just say), that you only have real 'worth' if you are working or studying. Your level of success seems to be measured by what degree/s you've done, what subject they were in, the grades you achieved, what work experience you've done, your employment history, how much you earn, how far up the career ladder you are. It seems to be socially unacceptable that you may not be working or studying (for whatever reason). I have had to really think about achievements. Beforehand, I did have this view about myself. That my only valid achievements would be education or work based. My goals would be:

  1. Get a psychology degree
  2. Get a masters degree in Clinical Psychology
  3. Get a job in an office, build up experience
  4. Get into an NHS job
  5. Get mental health, clinical experience
  6. Get a Clinical Psychology Doctorate
  7. Do my Psychology training
  8. Become a Clinical Psychologist
  9. Get married
  10. Own a house
  11. Have children
  12. Build up a respectable pension
Pretty ambitious huh? And only 2 or 3 of them aren't to do with studying or working. Since becoming chronically ill, my achievements have to be smaller but still something I can feel proud I achieved. I had to adjust my whole perception of 'achievement'. My goals are more about health and independence:

  1. Walk to a shop by myself
  2. Meet up with friends more often (maybe once a week even?)
  3. Take a longer journey by myself
  4. Get onto medication which helps my symptoms
  5. Take more control of my mental health
  6. Be well enough to cope with a relationship again
  7. Strengthen my leg muscles enough that I don't have to walk with a stick anymore (not sure how this one will pan out as my fibro is so unpredictable)

When it comes to illness and/or disability, the focus doesn't appear to be on your health and making sure you're getting the support you can. It's about 'supporting' you into getting into work as soon as possible. There is so much pressure to get well that it makes you feel guilty that you're not getting well (or is it just me?). I certainly felt that way at the wrag meeting. I suppose the clue is in the name but still, the pressure is very high.

Tuesday 24 September 2013

I can do this

My parents set off for their holiday this morning and the house is so quiet now! I'm rather jealous of them, could do with some sun, sand and sea but I couldn't afford it. Ah well, maybe next year! Frankly, I'd be happy even with just a weekend in Llandudno or something. My city isn't exactly the most cheerful place to be.

I haven't had a house to myself since uni, and my health was a bit better round that time, so obviously I'm quite nervous. My brainfog's been awful so the house is full of lists of things to do, to remember when certain people are turning up, appointments etc. Good job I've kept all my letters :)

Argh I'm glad of a bit of peace and quiet. I love my parents to bits but my dad in particular can make a stressful situation ten times worse. I know he doesn't mean it and he does eventually calm down if you have a word with him, but he's a real stress head (more so than me!!) and he likes to pace, and huff and puff, and sigh, and swear and generally get angry at the smallest things. When I'm in the middle of a flare, or generally having a bad fibro day, it does. not. help. I don't think he gets the concept of sensitivity to sound either...

I am nervous though, for many reasons. I worry about having to take myself to my next psych appointment, haven't travelled alone in a while. I hope I don't get all anxious when I sign in at reception. I get all disorientated on my own anyway. Need to learn how to be calmer and feel more in control. I also worry about the horrible thoughts going into my head when I'm alone. I will try to distract myself but sometimes it's impossible and I end up curled up in a ball crying at nothing in particular. Also, I have a phone WRAG appointment. I hate phones but getting to the place is so stressful and exhausting even with dad driving me and coming in with me. I barely coped the last time! I also worry about housework and shopping; whether I'll cope with that on my own. There's no one to take over if I can't do it so I'm gonna have to pace myself very very strictly; hence the lists. I have one thing to do a day, housework-wise. Two if it's a good day. If I can manage to run a hoover round it is gonna have to be literally the ONLY thing I do that day. It puts strain on my shoulder, arms, legs, hips and back. Not fun but it does have to be done.

The friends who still talk to me are being amazing :) They've offered to help if needs be. I'm the kind of person who is always too polite (or stubborn!) to ask for help but I will listen to my body and ask if needs be :)

The psychologist has told me that I have to make sure I'm doing one thing each day that I enjoy. I plan to get the musical instruments out and see just how rusty I am hehe! My flute teacher in particular said to never give up playing flute. Back in 6th form, she said I'd got to a point where I was able to play pretty much anything. I'm thinking of having a crack at the Pride and Prejudice soundtrack :)

Ok, I think I'll leave it here. I'm pretty sleep deprived and knackered so should listen to the advice my parents gave, after my hectic few days, and REST.

Wednesday 18 September 2013


I think this is probably going to end up another rambling of things that pop into my head, but recently I've been reading up, watching videos etc on brain fog and dissociation and it just feels weird how much I can relate to it.

This video has nothing to do with Fibromyalgia, but is about a man talking through how it feels to have Depersonalization Disorder and the symptom of dissociation associated with it.

(I'm not sure if I need to put any kind of reference here, but I don't want to take the credit for it or anything. I came across the video on a support group for invisible illnesses)

I guess brain fog can differ for each person who experiences it. It affects how easily someone functions. at differing levels for everyone. I think I've had the dissociation side of things for much longer than I had fibromyalgia symptoms; right back to when I was in secondary school. I wasn't diagnosed with any anxiety disorder but I suppose these symptoms could have been caused by the anxiety I experienced from bullying. Let's go back to those feelings.

I used to feel very self conscious at school. It was all about image, how you dressed, what your hair was like, how loud you spoke, your body language and mostly about fitting in. I'd have times where I experienced what I suppose now would be a mild form of dissociation. It was like I was watching myself walking through the corridors, sitting in the classroom, reading whatever exercise book we'd been given etc. I don't think my concentration was that bad unless my mood was low. But yes, everything used to feel so surreal and it was more often the case when I was in classes with the bullies. They may not have been saying anything to me at the time, it may have been afterwards, when I was just left on my own with no one to talk to. Maybe it was my way of protecting myself? It was a strange time in my life anyway. It did sometimes feel like I was watching myself saying words to another person when I was talking. Like it wasn't really me speaking.

I get these feelings now, especially when I'm at medical appointments etc. I don't know if that's separate to the brain fog or a part of it but I will explain the other part below.

Imagine a really simple sentence. Something about your day maybe, e.g. "Today I ate some pasta". Now imagine you can't think of the word "pasta". You either say a completely different word or your mind draws a complete blank. This happens as quickly as flicking a light switch. One minute you know exactly what you want to say, the next, it's like you can't mentally access what you want to say next. I guess it's hard to imagine if you've not experienced it yourself. It's not particularly easy explaining brain fog and showing that it's more than just your mind going blank once in a blue moon, because it happens on a very regular basis. I have times where I don't even realise I've said the wrong word/s. I may have said something to someone and in my head, what I thought I said was completely different to (and a lot more sensical than) what I actually said. No wonder this person is giving me weird looks!! In my experience, it's happened when filling in paperwork as well. I've put a word twice without realising, I've put 'ing' at the end of a word about 3 times, I've missed out the main word in a sentence. "I felt 5 times this week" (missing out the word "dizzy" when it's the most important point to make). I also have had times where I get my S's and my C's mixed up. Like I'm asking how to spell something someone asked me to write down for them and they say something like "It's spelled *something something* S" I keep writing down C. Does this make any sense? lol.

Ok so, I'm not speaking for everyone who has brain fog of course. I'm sure it affects everyone (who suffers from it) in different ways. This is just me explaining what it feels like to me in particular.

Friday 13 September 2013

Eye emergency, WRAG appointment and first Healthy Minds counselling session

Heyy, I think this is a bit of an updating blog post again. I'm absolutely exhausted from all these appointments and I have more to make! Blah.

Ok, first one,

Eye Emergency:

I wear monthly contact lenses about 2 or 3 times a week. When I first got them, I was told eye drops weren't needed unless my eyes got too dry. I didn't have any problems up until Saturday night. A couple of hours after I took out my contacts (carefully and very hygienically might I add) I had some irritation in my right eye. It only felt like a little scratch and, when I checked in the mirror, I couldn't find anything. I went to bed and slept soon after that.
I woke up at around 4am on the Sunday in absolute agony. My vision was very blurry, I felt like my right eye had been wrapped in barbed wire and it burned like it was on fire. I also could barely open it because it was all red and swollen. I woke my parents up to tell them and they said it might be severe conjunctivitis and to try and sleep, then we'll see what it's like in the morning. I spent the rest of that night, tossing and turning with a cold wet flannel on my eye, trying to soothe the pain as much as possible. Needless to say, the pain hadn't subsided and I was screaming out in pain. Dad took me to A&E.
Because it was an eye emergency, they got me seen to as quickly as possible and I was told I had a lot of severe abrasions on my eye (my left was fine though) and that it was probably due to my contact lenses damaging them. I had to take 2 types of eye drops hourly and 1 type 3 times a day. It would make my vision blurry as the one type of eye drop was designed to dilate the pupil of the affected eye. It's still quite blurry now but not as bad as before. I had to wait until today to write this post because of the blurry vision. Having it constantly made me feel really disorientated, dizzy, nauseated and generally feeling ill. Luckily the damage isn't permanent and the scratches are pretty much all gone.
When I went for my follow up appointment yesterday, the Opthalmologist told me I had permanent white marks on my cornea as well. This was due to a virus I'd had (no idea what virus it is, but there you go!) I could've been prescribed steroids to get rid of them, but I'd be on them for life. I decided against this as the marks were purely cosmetic. They don't hurt or affect my vision so I don't want to be on even more medication; especially not steroids!

WRAG Appointment: 

On Tuesday I had my first Work Related Activity Group appointment. It took a while to walk from my dads car to that appointment; as there is no parking nearby. I had to keep stopping as my leg was getting weaker (my right one seems quite weak at the moment) I was getting dizzy, tired and couldn't catch my breath. I think there's some disabled spaces nearby but I'm on the fence as to whether it's worth all the stress and possible rejection to get a blue badge. I know I need one but all these appointments wear me out so much, I just don't know if I have the energy for another assessment.

Anyway, I got there just in time and was taken straight to the advisor. She asked me about my condition, limitations etc then told me straight off that the DWP saw Fibromyalgia as a short term condition so I would not see her again. Short term? Friggin short term? I've had this over 3 years and it has got worse! I don't see that as short term, do you? So she said I had been placed on the Work Programme and was to be dealt with by another organisation. I told the advisor that Fibromyalgia is a long term condition. Once you have it, it's for life as it's incurable. She actually knew this, as her auntie has it, but unfortunately she doesn't have the power to argue the DWP's decision.

I hate having this condition. If I'm going to be this ill for this long, I'd rather have something that is a lot easier to prove through blood tests, scans etc. Why do I have to feel like I'm on trial all the time? If one of the decision makers could step inside my body for a week, they'd know full well what my limitations are, how I never really have a 'good' day, why I don't make regular plans because I can't predict how things will be on a particular day and I hate letting people down.

Ok, so I was sent away after all the admin-y things were sorted. Paperwork given out, being put on the phone to this organisation (with Pertemps would you believe. i.e. a recruitment agency?). I'm on the work programme for 2 years but I think the advisor mentioned I might be reassessed in 6 months as my condition is 'apparently' "likely to improve" in 6 months. Well it hasn't improved within 3 years, so, unless the doctors come up with some miracle treatment, I'm not too optimistic :/.

I had a letter come the other day, called the Invitation to Work Programme. I had a real panic when I read the details! It talked about an induction that would last between 2 and 3 hours. Now when I read the word "induction", I thought I'd be expected to do lots of work-related tasks (office work, filing etc). I was imagining being plonked at a computer and having to do 2-3 hours worth of work! No wonder I panicked. I may be able to sit at a computer for a bit, but I'm writing this sat on the sofa, moving my legs so they don't stiffen, part-dislocate or cramp up and cause extreme pain. I have 2 cushions and a pillow behind me so my back doesn't hurt too much. Even though I have all this, my neck, shoulders, back, hips and legs still hurt and my hands cramp up easily so I have to rest every 10 minutes or so. And this is at home. What office would provide me a very cushioned chair with space to move my legs constantly and no targets so I can rest my hands/arms without severely disrupting productivity? This is part of the reason why I can't even consider basic office work at the moment.

Well after my panic, my mum kindly rang this place for me. It turns out, this induction is more like an interview with an advisor there. The timescale was also an average time because of how busy the building gets. I can now expect to wait up to an hour. This means my dad can come in with me thank god. This is also the limitation I have. I have to have someone with me for appointments, interviews etc. I don't get anxious talking to a person I don't recognise, but I find it hard explaining everything because of my brainfog. I already forgot to tell the original adviser about my leg stiffness and I really hope this new adviser has the atos report. I will bring along my copy just in case. I just really hope I'm not forced to do things like work experience etc. When I feel I can cope with work situations, I will be doing everything I can, but doing too much causes major flares for me at the moment. It's just not worth the risk!
I will keep you updated on these appointments.

First Healthy Minds Counselling Appointment
TRIGGER WARNING: Mentions of suicidal thoughts and abortion. 

On Wednesday I had my first counselling appointment with Healthy Minds. I had no idea what to expect to be honest. I'd been feeling pretty numb recently, trying to distract myself so I didn't think for too long, so I wasn't sure how to explain everything to the therapist. I thought about writing notes, but didn't know what to put, so I just went along and hoped my mind wouldn't let me down.

The therapist was really good. She asked me lots of questions but didn't rush me. It felt more like a chat I guess, although some things were hard to talk about. We covered so much and she kept me informed of everything.

We talked about my suicidal thoughts. I feel so bad talking about this because I end up doing it in such a matter of fact and calm way. I don't want people thinking I'm sick in the head or something. I know it's not healthy feeling this way and thinking about suicide as often as I do. I may not be planning to do anything (although, admittedly, I do come close sometimes) but it's always at the back of my mind. I don't really know how I'd do it. I told the therapist about the methods I've thought of but I was scared about being unsuccessful and ending up in agony in hospital getting my stomach pumped or something. It's something I think of as this option if things ever went absolutely tits up i.e. if I alienated more friends, family and/or realised just how hopeless my love-life was. I feel like I've lost so much already, but I know that I would hurt and upset and anger people even more if I went through with it. As much as I feel like a burden and a shit friend, I'd feel even guiltier if I ended it all. The feelings always get stronger when my symptoms are worse. Feeling sick to my stomach, weak, in pain all over, can't think straight, can't concentrate on a thing, have to cancel plans. When I feel that way, I can't do anything but think and then I have the horrible 'crashes'. It's just that option I think of when I just want everything to stop. If my life will never get better, I don't want that life. My parents go on holiday near the end of this month. Because of the thoughts and crashes and self loathing I have, I worry about being in the house on my own for this long (10 days). I had to just stop hiding it and tell the therapist that I worry about these thoughts and that I worry about getting so low I do plan out ending it all (I'm so so sorry guys, I know this is horrible but I have to be honest here!). I think that worried her to be honest. I don't think I'd do it. I'm not in the frame of mind right now where I would do it. But what if I get to a stage where I don't think about my friends, family, the future etc. What if this 'thought' is all I can think of? She said she wants to see me for an appointment during these 10 days. I think she wants to make sure I keep my moods up as much as I can so I can cope with being alone. She also said I need to try and make plans, have friends over etc. I will definitely try. Believe me, I don't want to have these horrible thoughts. It's just hard to control sometimes. I told the therapist how I rely on distractions.

We then talked about the abortion. I actually shudder when I say or read that word. It just sounds so abrupt and it drips with stigma. I couldn't think straight when I was explaining it to her. I was trying to explain how I needed to get closure and to stop feeling guilty. I feel so guilty and selfish for doing it because I wasn't so ill that carrying a child to full term would be too difficult to cope with. I know people who have had children at young ages and they are brilliant mothers. Maybe I felt like I'd taken the coward's way out? I made the decision so so quickly. I was young, irresponsible (I drank a lot and very often), all I wanted to do at the time was be young, but finish my education and stick to my plans. I wanted to do everything for 'me' I guess. This is why I felt selfish. It wasn't this baby's fault that I wasn't ready for him/her. But I was only 5 weeks pregnant at the time. The therapist asked me "What if you had had the baby?". When I talked through what my plans would be, I felt even worse because I felt that maybe I had made the wrong decision. I've always wanted to be a mother. Hindsight is a real bitch isn't it? It's bringing me to tears pouring my heart out here. All my deepest darkest thoughts out there. Keeping them bottled up just eats me up inside though.

The therapist said that she would refer me to a bereavement counsellor. That set me off again. The word bereavement. She said she felt that I'd never had time to grieve. I suppose I haven't really. I went through all this literally days before my first year exams and I never even told my university about it. I went to my appointments, took the pills that made everything happen and took the strong codeine to help with the pain. I brought my little box of codeine to my exams, sat at the back, held my stomach, grit my teeth and got on with it. I had to throw myself into my studies as much as possible so I couldn't think about this. I had to push every single emotion right down so it couldn't break me.

We then turned to the computer to do all the depression, anxiety and phobia questions again. To see how things had changed since my triage appointment. Beforehand, my depression score was so high that the therapist said antidepressants would have been needed alongside the counselling. Now I am in the moderate/severe depression category. I told her I didn't want anti-depressants because they didn't suit me before. They made it even harder to think clearly and not being able to access my thoughts scared me. So talking therapy it is. We had a look at my anxiety score and I think that one had gone down a bit as well. The anxiety is mainly due to my overactive bladder. I worry so much about situations that do not make it easy to access a toilet. We need to work on this, and I need to be more assertive in those situations. I told her about the lack of a toilet in the jobcentre, and how this made me have panic attacks. It caused me to be sanctioned, as I would get very ill just before my jobcentre appointments and would have panic attacks so bad I couldn't got to any group sessions. And this was back when I thought I was well enough to work!

The phobia section hadn't really changed. I have had a phobia of wasps for a long time. I'm not sure how I got it. I used to be a bit scared of wasps but it didn't affect going outside or eating/drinking outside when it's sunny. Nowadays I will avoid anywhere I can see even just one little wasp. My blood runs cold if one goes near me and I feel really faint for a while afterwards.

Ok so, at the end of this appointment she gave me some 'homework' to complete over the next fortnight. I have to keep a 7 day diary of what I did and how I felt on a scale of 0-8. I also have to write down what I do/plan in those 10 days. She seems really lovely and supportive. She's also sending me some breathing exercises and a relaxation CD as the nights tend to be the worst for me and I want to sleep better/earlier.

I will keep you all updated :)

Friday 6 September 2013

Appointments, appointments, appointments

Sorry! I've been a bit naff with my blog again. I hope everyone got a chance to see my last post about the Very Important Petition! There's only around 5180 (I think) signatures and at least 95'000 more needed. I really believe in this cause. We don't want more horror stories.

Ok so I've had my atos assessment now, it was what I expected. Lots and lots of questions, my every move watched and scrutinised and me going out of the room convinced they'd find me fit for work because of the nurse's behaviour. I requested the report, just in case. I was all geared up to appeal and found many discrepancies, contradictions and downright lies on the report. One thing I was happy about, was that she wrote down exactly what I said. So that was the one honest thing. Thing was she put that I'd walked (with a stick) 150 yards from my dad's car to the assessment centre. What she failed to put down was that I was hobbling and had to stop a few times and lean on a wall because I was breathless and felt like my legs were going to go from under me. It was exhausting. She also lied on the physical; saying I was able to bend more than halfway when she asked me to try and touch my toes. What actually happened was that I bent very very slightly then cried out in pain (neck and back were killing) and had to refuse to continue. The contradiction on the report was that she said, in one section, that I had to get up 3 times during the assessment (truth) and in another section, she put that I sat still for the whole hour (couldn't be further from the truth!).

Well clearly the decision maker spotted the errors as I was put in the Work Related Activity Group and put as not fit for work. I was wondering about appealing to go in the support group but I'm really not sure. I guess I'll see how I go with these work focused interviews (first one is next week). Ok so I'm pretty happy about that. I'm getting the money I need and I'm not being forced into work before I'm ready.

Ooh also, I've had my first Healthy Minds assessment appointment come through. It didn't say CBT or anything, just that I'd be assessed to see if this service is right for me? Well, it'll be interesting to see how that goes anyway. That's also next week (busy week!) so I'll let you guys know what happens.

Lastly, I had my Rheumatology appointment yesterday. I spent the other night very awake, looking in support groups, forums etc, to find out what the first rheumy appointment is like for people with suspected Fibromyalgia. There were mixed reviews and the main advice was to keep a symptom diary; which I did.

I got there just on time and the nurse called me through to do height, weight, blood pressure (140/60 I think it said, that's the most abnormal my bp's ever been lol) give a urine sample etc. I swear it is SO hard to 'go' when a) you have to do it in a tube and b) there's two nurses gossiping outside the cubicle grr!

Straight after that, the doctor called me in (I know right! No huge wait!). The nurse popped in and I overheard her saying there was protein in my urine. Anyone know what that means? Is it a bad thing or pretty normal? I'd only had a cuppa that day lol.

Anyway, he asked me about my symptoms and my brain fog decided to kick in big time then haha. So frustrating! I'm glad I had everything written down though. I explained everything (maybe not in a fluent way but still) and he got me to pop onto the couch. He did all the neuro tests and muscle strength tests. Aw there was a funny moment though. He gestured to me "do this" *does chicken impression, with the elbows out and turned up* (can't explain it better than that sorry!), so I did that. Then he pressed down on my elbows so I naturally but my arms down a bit. Then he did the gesture again. This happened about 3 times before I had it explained to me that I had to push against his hands lmao! Good job he was a nice doctor with an actual sense of humour!

He did the tender point test as well. Basically, with fibromyalgia, you're supposed to have between 11 and 18 tender points on certain parts of your body (hips, shoulders, neck, back etc). By 'tender' I mean it hurts more than usual to touch. I don't know how many I had but it was a lot more than I expected. The most tender points were my neck and shoulders. It felt like they were permanently bruised. Ugh he got that reflex hammer thingy out as well! Started tapping my knees and elbows with it. Felt like I was being beaten up lol!

He asked me a few more questions about medical history, to which I answered that my dad has arthritis. After that he told me he thinks it has to be Fibromyalgia but he also wanted to order blood tests to check for autoimmune conditions, arthritis, thyroid problems etc. I think he even wanted to check for diabetes? Bit random. He said to stay on the tablets my GP prescribes as he thinks it's correct. I know the pregabalin is doing naff all for me and I'm getting side effects now, so I'm going to see her soon and see if I can try a different med. He also noted my Vitamin D dosage down and said I'm on a very high dose and, looking at my last Vitamin D blood results, I should be on a much lower dose now. I wouldn't mind at all with that!

Apart from that, he said he wouldn't do a follow up appointment as there's not much that can be done for fibro (meh, I hate having this illness!!) but he is referring me for Graded Exercise Therapy. I'm not sure what to think about this. I mean, I've heard it makes some M.E/Fibro patients worse? But the thing is, I'm at a point where I'm happy to try anything so who knows? If it does work for me then I'll be over the moon! And if not, well, I can always stop. He also handed me a little fibromyalgia booklet. It's pretty disheartening; seeing all the pictures of the elderly people in the booklet. I'm not a pensioner! Many many young people have fibromyalgia. It's a booklet created by Arthritis Research UK. Is this illness seen as related to Arthritis? I suppose some of the symptoms are very similar (stiffness etc).

Ok so, I had my bloods done (at least 4 tubes I think, possibly 5) and now I've 'officially' had my diagnosis. It seems that diagnoses are only taken seriously when done by a specialist.

It's been a day since my appointment and I still feel all bruised and sore. I'm absolutely exhausted as well. Having a huge energy drink again. I shouldn't really but I didn't want to sleep all day. Want to at least try and be productive even if that productivity just involves replying to messages. I've still got things to catch up on!

I cannot wait to start seeing the counsellor. I feel like I need to see them straightaway sometimes. The nights are always the worst for me. It's that time when I'm by myself, most people are in bed so I'm not really messaging anyone, so I end up thinking about everything. I have a very cruel mind. I can be so self loathing sometimes. Especially when it comes to things I've achieved in my life time and the way I look. Up until this year, I never really had a problem with my weight. I didn't think too much about calories or trans fats or carbs. I'm still pretty crap at watching what I eat but now I feel incredibly guilty if I eat something fatty or sugary. I don't like how my body looks, even though people say I look fine. I just see the extra wobbly bits. Not that I'd start to think that about anyone else. I believe your ideal weight is the weight you feel happiest and most comfortable at. Unfortunately I can't feel happy at this weight. Maybe this Graded Exercise Therapy will help a bit? We're trying to get in more fruit and veg and I'm eating less bread and cheesy pasta.

Sorry, I went off on a bit of a tangent then! Anyway, so I'll be glad when I can talk to the counsellor, get things off my chest and find ways of being more accepting and happy with myself. I used to be an optimist I swear!

Ok, so I'll leave this here and I WILL finish that damn review when I'm feeling more with it. Thanks again for reading :)

Tuesday 20 August 2013

A Very Important Petition: Please Sign!!

I want to start off by telling you a little bit about the benefits this petition refers to, and the process you would go through in order to claim and be assessed for them.

Employment and Support Allowance (ESA)

This is an out-of-work benefit for people with illnesses and/or disabilities which prevent them from working. If you were originally on Incapacity Benefit, this is what you would usually be transitioned onto and reassessed for. In order to claim, you will need to fill in an initial form to give information about your illness/disability, your circumstances at home, personal details etc. This is the ESA1. Your information is then assessed and you will initially be told if you qualify for the assessment rate of the benefit (usually the equivalent amount to Jobseekers' Allowance). After this, you will receive a questionnaire to see how your illness/disability affects your daily living, ability to work, care for yourself etc. Most claimants will be called for a face to face assessment and a very small amount will qualify for a home visit. It all depends on how ill/disabled you are. It tends to be very rare (more so than it should be), but in some cases, you may not need an assessment. Soon after this, you are told whether you are Fit For Work, in the Work Related Activity Group or in the Support Group.
This link gives more information:

Disability Living Allowance (Soon to become Personal Independence Payment)

If you need to apply for this then I think you can only apply for Personal Independence Payment. Check this link for more details:
DLA/PIP can be in or out of work benefits. They are designed to try and help with costs related to your illness/disability. You may also qualify for a car on the Motability scheme, if your mobility is poor enough. A lot of people rely on this as, without it, they may not be able to access work. Similarly to ESA, you need to send information to the DWP about your illness/disability and how it affects different parts of your life. You may also need to have a face to face assessment.


Although these benefits do call for medical evidence about your illness/disability, in order to assess you, the outcome of the assessment is mostly based upon what you or your carer tells them. The assessments can be terrifying for some people and fully explaining the impact of your illness/disability can be practically impossible.

I want to introduce you to a petition that absolutely NEEDS more signatures. It calls for the DWP to send out a form to all claimants deemed "Vulnerable". This could be due to severe physical illness, mental illness, learning disabilities etc. This form would be provided for the claimant to send to their GP or consultant; asking them to fill in to provide information if the DWP rules 29 and 35 apply to their patient. (I will explain these rules at the end of this post)*.
The point of this form is to safeguard the claimant and protect them against needless stressful face to face assessments if these would, in fact, be detrimental to their health. The evidence given by GPs and consultants should be enough to fully assess them.

This is the link: **

Please please please sign. It is extremely important!

* -Regulation 29 applies to Limited Capability for Work and Exceptional Circumstances related to this:

  -Regulation 35 applies to Limited Capability for Work Related Activity and Exceptional Circumstances related to this:

**Special mention to Lynn; who created this fantastic petition. If you would like to learn more about Lynn, her son's story and how the petition came about, then you can find her on twitter ()

Thanks in advance!

Wednesday 31 July 2013

My Healthy Minds Triage Appointment/Opening up

Slowly, I feel like this metaphorical weight is being lifted from my shoulders.

I had my telephone triage appointment today with Healthy Minds, this was to address my mental health. I was so nervous about it. I found it really difficult opening up to my gp, so I thought it'd be even worse with this person I didn't know. It actually wasn't.

When my appointment letter came through, it was accompanied by a questionnaire to address things such as Daily Living, Anxiety, Phobias and Low Mood. By each question, I had to score either how severely, or how often this issue affects me/is affected by my mental health. Obviously some of the points (like work, sleep problems, being able to socialise, lack of energy) I had to annotate as they are partly (or severely) affected by my physical illness too. I had to get this ready for today; when I was due to have my triage appointment.

The phonecall came dead on time and I spoke to a really friendly sounding Psychological Therapist. She explained things such as confidentiality, health and safety etc then we went onto the scores. I explained about my Fibromyalgia and Overactive Bladder and she was very understanding; knowing to take this into consideration with some of my responses.

I took a deep breath when discussing my score for the last question: "Thoughts that you would be better off dead or of hurting yourself in some way". I'd scored that a 3, i.e. "Nearly every day". Obviously we had to talk about that in greater detail but she was very understanding and we had a really good chat about that. I'd not attempted suicide or actively planned to. I'd been close on really bad days though.

It's great that I can talk to some friends and family about this but I know I worry them too. If a friend or family member of mine was talking about this with me, I'd be as supportive as possible but it is so hard to be impartial as it would affect me and I'd be very upset that I couldn't help much. The therapist doesn't know me so we were able to talk about this in a matter of fact way and really get to grips with what makes me feel that extremely. She asked me what my strongest feeling was, and I said "Guilt". It's the guilt from my physical health declining so much and making me feel as if I am a burden to my family and friends. Those around me have to make a lot more effort to see me. Some understand, some never will and I have to accept that I can't always change that. Also, I can't help around the house as much as I'd like to. We could probably really benefit from having extra help round the house, but I doubt our needs would be seen as urgent or serious enough so we just have to carry on as best as possible.

We then went on to things I do in order to cheer me up. I talked about this blog, talking to loved ones and music. I guess sometimes this blog is like a journal to me. It's out there for everyone to see but the point is that I want to be more open about my physical and mental illnesses. There's no shame in it and if anyone has a problem with me being this open, frankly they can go swivel lol! It helps. I have got to know people more, through this. I have become closer to people as well so I would never regret writing this blog. The music is a great way to get creative. Sometimes (very rarely!) I can write lyrics. They usually end up as half finished songs but I always feel better after getting them down. I play flute, keyboard and guitar as well. I haven't got them out in a while but I'm working on it. I'd like to write a full song incorporating at least some of these instruments. Lastly, I enjoy singing. Apparently I sound good, although I'm very critical of my own voice. I didn't mention the baking but I enjoy that too! A lot of the time I will need help but to create something tasty is a real mood booster sometimes. I call it Baking Therapy.

*After this, she asked if there was anything else that I feel was having an impact on my mental health. Now this one was difficult. I've really been umming and ahhing about even mentioning it in this blog. I'm not sure who reads it and I certainly don't want to end up a topic of gossip but the whole point of this blog was to open up. Maybe I should just say? Ok, well I guess this has had an impact on my mental health to a certain degree because it's something I never really got closure from, it happened very quickly and I just had to 'get on with it'. When I was 19, and nearing the end of my first year at university, I found out I was pregnant. I'd not long broken up with the father and definitely didn't feel old enough to have children. Let me just say that I didn't feel that way about other people I knew who had children young! This is a personal thing. So I was close to my exams, felt really panicked and rushed so made the hasty decision to have a medical abortion. God this is so hard to talk about!! I can probably count on one hand the amount of people who actually knew about this. It was a really traumatic experience and I felt like I had to keep it private and just get on with my degree. I didn't talk to anyone in great detail about it. I had an amazing, AMAZING friend who took me to the appointments, was always there when I needed her and kept my secret. She really is a friend for life, I owe her so much. The nurses were honestly horrible. No support, just acting like I was a stupid teenager who got herself pregnant. It was protected for god's sake. Anyway, I wasn't offered any counselling, even though it was pretty obvious that I needed it. The whole time I was in tears, shaking. Anyway, so I went, had this done, didn't even tell my personal tutor about it and got on with my exams. It was pretty clear that this had an impact on my grades as I suffered a good couple of weeks of agonising pain. I had to just take my codeine, turn up and grit my teeth. I got through it though! And managed to pass my degree even though it was very difficult with all this going round my head. To this day I feel like I never got closure from this experience. I always wondered whether I made the decision too quickly, was I selfish for doing this? I also hope that this wasn't my only chance to have children. These are the things I need to address and get closure from.

Back to the phonecall. It was an amazing chat, she was so patient and understanding. We even spoke about my degree and how I'd like a similar job to her in the future! Although I was crying after, I did feel a bit better for getting this out. We then discussed the therapy options for me.

There's actually a therapy program for people like me, who have an ongoing physical illness that is now having an impact on my mental health. It's called the Expert Patient Programme. It'll be group sessions but I guess they'll be understanding of my physical needs (like being able to go to the toilet whenever I need to). Plus I want to push myself to be more comfortable in group situations. If I can do this, then I consider it a big personal achievement. Also, I'm being referred for one to one Cognitive Behavioural Therapy sessions. Although I've been open about it on my blog (and very nervous about what response I'll get now!) it's still something I need to discuss privately, alongside other feelings etc.

So that's the next step! I thought it'd be a lot more difficult to access the help but I actually feel supported in all this. I'm not miraculously cured and this is only the beginning of the journey, but it's a big step to take. And it wasn't as scary as I thought :)

Right, I need to eat now so must go! Thanks again to all my readers :)

*I'm really tempted to delete this part. I just don't know. It was such a private thing in my past but I suppose I have to be open about it so I will try and leave it here. Feeling so anxious right now!