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 :)