Today I want to share with you my ridiculous experience with Atos. In May, I was called for a work capability assessment (WCA) to assess my eligibility for Employment Support Allowance (ESA). Obviously I was worried, there's been a lot of horror stories about people who are far more disabled than me being judged fit to work. Anyway, the DWP decided after the assessment that I was eligible for ESA and put me in the Work Related Activity Group (WRAG). This basically means that they don't expect me to apply for jobs right away, but they expect to move into paid employment in the future. I was happy with this decision. I do think I will be able to do some work in the future - but I do need support and time to get ready for work. I was also relieved because I knew I wouldn't be eligible for Job Seeker's Allowance - unless I flat out lie about the way my disability affects me.
Anyway, all was fine and dandy, I attended my first work focussed interview with a lady from the job centre, and it was very positive. We both agreed that applying for voluntary work would be a good place to start with - it'd build up my self esteem, and allow me to test out my work capabilities. I've never worked (I couldn't manage studying for my degree and working so I have no idea what my kind of work is suitable or how many hours I can work. I do know that I will need support to work, I've needed support throughout my life - both in personal care and education- so it's totally unrealistic to expect myself to enter employment without needing support.
About a week ago I received another esa50 form in the post, to reassess my eligibility for ESA. I initially thought it was a mistake, so I rang the DWP to ask if it was a mistake - and the lady said 'no it's not a mistake, your condition has a six month prognosis'. Flabbergast, I requested a copy of my WCA assessment to see what had been written.
Anyway, a copy of the report arrived this morning, and in black and white it says 'I advise that work could be considered in six months' the reason given for this was 'The client's level of disability would be expected to improve'. (For some reason I can't upload the picture of the letter, but it's on my twitter @thisisamy_)
The person who assessed me was a qualified doctor. I'm unbelievably shocked that they have written that they expect my level of disability to improve. The first rule of cerebral palsy is that it doesn't improve. If you're lucky it stays the same. For me, it is a constant battle of surgery, splints, botox injections and physio to remain as mobile as I am now. My function won't improve because my brain has permanent damage that means my affected limbs are paralysed. Even non medically qualified people are able to understand that my condition won't improve. Indeed, my cerebral palsy is worsening, my body is struggling to cope with this disability. At the moment, if I have one 'busy' day my body takes a full two days to recover. This isn't meant to be a sob story, this is just my reality. This doctor seems to think my disability will improve within six months. There's no chance. I'll be lucky if my pain and fatigue that I get from my CP hasn't increased. I know full time work will never be an option, I'm not sure how many hours I could cope with at work before pain and fatigue becomes unbearable. That's why I need to do my voluntary work so I can see what my limitations are. In the meantime, I'm going to be reassessed every 6 months to see if my CP has improved - the stress this causes me is ridiculous. It's heightened even further because I know if my ESA is removed I won't be able to apply for JSA, so it's an all or nothing scenario.
Thursday, 5 September 2013
This is a post I've wanted to write for a long time, but I haven't really felt strong or settled enough to sit down and think about my mental illnesses in depth. I really feel like since having CBT (and perhaps due to my medication) I've turned a corner and made real progress in how I manage my anxiety and depression. I'd really like to share with you things I've realised about these conditions and how I've developed ways to deal with the symptoms. I'm by no means cured of these illnesses, they still affect me, but I feel like I've got a bigger grip on them than previously.
- Avoidance - One of the biggest lessons I've learnt about anxiety/depression is that avoidance is the lifeblood of these illnesses. It allows them to thrive and creates a vicious circle. In CBT I was taught, that although you may engage in avoidance behaviours because they give you short term relief from your anxiety symptoms, long term avoidance is negative and a problem. I'll give you an example: when my anxiety was at its worse my avoidance behaviours got so out of control that I couldn't answer the buzzer to my flat. At first, my avoidance was relatively mild - I wouldn't go out the flat on my own because it made me too anxious, but then it just escalated to not being able to answer the buzzer. I have no idea why my anxiety got so bad, but I've realised that avoidance behaviours fuel anxiety and just worsen it. So by being aware of this I'm able to challenge my avoidance behaviours (easier said than done) and give myself small challenges to tackle the avoidance gradually.
- It's important to be kind to yourself. I find with depression and anxiety, I'm just in the habit of being absolutely horrible to myself. I used to tell myself I was a failure and that I would never amount to anything, and that I was a disappointment to everyone I knew. I remember being really ill with depression, I used to spend hours a day thinking incredibly negative nasty thoughts about myself. I've since learnt that this is not a healthy way to think, and that for every bad thing I think about myself, there will be a piece of evidence to counteract these negative thoughts, something objective. I find that when I'm thinking overly negative things I stop and think 'would I say these things to someone I loved?' if the answer is no, then I try to challenge these thoughts.
- Control. Oh this is a big one, one of my biggest anxiety triggers is not being in control. I hate it, it always makes me dwell on the worst case scenario, because naturally I expect everything to go wrong, and if you're not in control of a situation, then to me that just means something will go wrong. However, I've come to realise (how I don't know) that sometimes in life somethings are out of your control, it's just part of life. I think part of my acceptance of this fact is realising it's not your fault if things do go wrong when you're out of control, indeed, it's not always your fault if you are in control when things go wrong. I find that anxiety can give you a sense of not being in control anyway - so on days when these feelings are really strong, I do something that is in my control. This might be something as simple as doing the washing up or a load of laundry - I just find it helps, it's probably because it acts as a distraction, I don't know.
- Stop comparing yourself to everyone else. This is something we all tend to do and is generally quite hard to stop. I have to make a real effort to stop myself doing it, I have found that I have a tendency to compare myself to my peers so much and this was damaging my self esteem and making me incredibly low. I mean I'm 24 now, and seeing people I went to school with having good jobs, getting married and having babies, driving cars etc, just made me feel like an utter failure. However, I now realise, my life is not the same as their's, since I graduated with my first degree in 2010, everything just gradually fell to pieces and it ended up in a full on nervous breakdown. I've had to rebuild my life from scratch near enough - and as such that takes time. I'm learning to give myself credit for things I have done - I didn't quit my Masters degree even though I feared that going back would make my depression worse, I've managed to balance university whilst having four big surgeries in the space of two years. I haven't given up, I've not given up my recovery from these mental illnesses. All I'm trying to say is that, no two people's lives are the same, and my life is by no means a failure if I don't have things certain things other people have. I think part of the reason I compare myself to others so much is rooted in depression, people with depression often have incredibly high standards of themselves, and if they don't meet these standards they give themselves a hard time.
- You can't rush recovery. I cannot emphasise this enough. When I was first diagnosed with depression, I was asking my GP and crisis team everyday 'well when will I be better'. I literally thought depression recovery was : take these antidepressants and bam, you'll feel better tomorrow. I honestly thought it was as simple as that. I now realise the best thing for recovery is time and patience. I reckon I was ill with depression for about two years prior to my diagnosis. It was only since I've started feeling better from depression that I've realised how long I was ill for, in fact, I'd just assumed my depression was my personality, I now know it was all the illness. So in theory, if I've been ill from depression for such a long time, then it will take a long time to recover from. I was repeatedly told by the mental health professionals that a slow and steady recovery is best. I now realise that is true. I view my recovery as unlearning all those negative ways of thinking, relearning how to think more positively, trying to quell avoidance behaviours and to lead a more balanced life. That's a lot of aims, and so logically, they'll take time. I'm in no rush to come off my medication because it's working and I'm keen to continue the progress.
- Be realistic about recovery. I've found talking to other people on twitter invaluable for this. I don't believe my recovery has an end point - I think my depression and anxiety will always need management to avoid relapse. I've accepted the anxiety is for life- I've always had it, so I think it's unrealistic to expect it to ever be cured. I get accused of being defeatist over this, but I've spent so many hours of my life wishing my anxiety away that it becomes exhausting and just fuels the anxiety. I think it's incredibly positive to say 'Yeah I'll always have anxiety, so I'm going to do all I can to self manage it'. It's not defeatist, it's realistic. With respect to my depression, I view it slightly differently, - I believe my depression is the result of incredibly stressful life circumstances that pushed me until breaking point. I don't want to discuss the personal circumstances here, but I believe they were a major contributory factor to developing depression. So as such, I think it will be possible for me to not be ill with depression. It will take time and effort, but I don't think it's impossible to think one day my depression might not be present. At the same time, I'm realistic, if it doesn't ever go away, fine, I'll accept that, and do what I can to manage. I do think my nervous breakdown has changed me in some ways. I look at it as scar tissue, I don't believe that I can be so ill with depression that you can ever be completely the same person you were before it. I think the nervous breakdown has left scarring on me, it's changed me. I think it's ultimately positive, because the nervous breakdown made me take depression seriously, so it's a lesson for the future.
I could go on writing forever about the things I've learnt about managing anxiety and depression, but maybe I'll save it for a second post. Writing this was actually quite therapeutic, it's good to reflect on how far my recovery has come. This will be good to read when I'm having a bad day.
Thanks for reading, and feel free to ask any questions.