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...
GP
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!
Thursday, 28 November 2013
Tuesday, 19 November 2013
Lost
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!
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 :)
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 :)
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UPDATE:
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 :)
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."
(source: http://www.nhs.uk/Conditions/Depression/Pages/Diagnosis.aspx)
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:
http://www.samaritans.org/ - 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.
http://www.mind.org.uk/ - 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.
http://www.rethink.org/ - Another brilliant mental health charity. This charity does a lot of campaigning and fundraising.
And finally Healthy Minds http://www.bcpft.nhs.uk/services/for-adults/83-community-services/247-wolverhampton-healthy-minds?eprivacy=1 - 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 "" 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 :)
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."
(source: http://www.nhs.uk/Conditions/Depression/Pages/Diagnosis.aspx)
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:
http://www.samaritans.org/ - 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.
http://www.mind.org.uk/ - 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.
http://www.rethink.org/ - Another brilliant mental health charity. This charity does a lot of campaigning and fundraising.
And finally Healthy Minds http://www.bcpft.nhs.uk/services/for-adults/83-community-services/247-wolverhampton-healthy-minds?eprivacy=1 - 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 "" 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)
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:
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.
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:
- Get a psychology degree
- Get a masters degree in Clinical Psychology
- Get a job in an office, build up experience
- Get into an NHS job
- Get mental health, clinical experience
- Get a Clinical Psychology Doctorate
- Do my Psychology training
- Become a Clinical Psychologist
- Get married
- Own a house
- Have children
- 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:
- Walk to a shop by myself
- Meet up with friends more often (maybe once a week even?)
- Take a longer journey by myself
- Get onto medication which helps my symptoms
- Take more control of my mental health
- Be well enough to cope with a relationship again
- 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.
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