Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.

It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.

I’ve had to make even more changes in the aftermath of dropping my ESA claim.

  • My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
  • Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
  • I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
  • When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
  • The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
  • It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
  • I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
  • I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
  • I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.

Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.

So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.



8 thoughts on “Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

  1. Hi Lisa, so saddened to hear of all the setbacks. 😦 Sending you positive vibes and warm fuzzies.

  2. The “fake it til it’s real” phrase is, I suspect, used by those who have NO idea what it’s like to deal with chronic pain or depression. I don’t have chronic pain, just depression (not to mention deafness), and it’s no easy feat to try to overcome that and get some semblance of normalcy in your life. I so hope you get some relief soon, Lisa, because what you’ve gone through is absolutely horrible. I’m not saying you should return to the US (nevermind that, because that’d be another costly move!), but I feel like our disability laws are much better here. I’ve actually considered moving to London for a period but I don’t know how deaf friendly it is.

  3. I am glad to get an update on how you are doing, even though your news is full of so many difficulties. I agree with the previous commenter that you should do whatever it takes to get your meds, painful as it may be. It’s not just the meds. It seems like overcoming that difficulty might break or loosen or redirect a tenacious spell that will only take you to new depths. I hold you in my thoughts and look forward to future updates.

    I took the Simon Baron Cohen online test recently and scored 32. I was surprised, but then I took the test because I was suspicious. I read ‘Aspergirls’ and she doesn’t sound like me, although I have almost all of the traits she lists in a table at the end of the book. Who’s to say what’s ‘normal.’ It’s a continuum.

    Have you been following the Massachusetts Senate race, with Scott Brown saying anyone can tell Elizabeth Warren is not Native American by looking at her? It’s getting a look of outraged coverage here by people like Rachel Maddow.

  4. I suffer from depression myself and I’m going to let rip at the next person who says to me:

    “Pull your socks up” or “You’re grumpy today” or “It’ll soon pass” or “You’ve only got the blues” or any other such nonsense.

    I hope your situation starts to improve soon.

  5. Anyone says fake it til it’s real has never had to deal with depression. You CAN’T fake it because you’ve not got the energy or inclination to try. You know as well as I do that the very first thing you have to do is get to a GP as all things spring from there. You can’t change anything else without first having a GP, so you have just do it. I know it’s hard, and the very thought of having to go into a surgery makes you feel sick with dread, but you HAVE to do it. I know it’s not easy, in fact it is terrifying you, which is why you haven’t done it yet, but you have to take a deep breath and find the number and ring, do it before you can think too hard about it. Then once you have contacted them you can start on the path to getting medicated again and then once medicated you might be able to think about everything else.

    I’m so sorry you are going through this right now, not that my sympathy has any tangible effect on how things are for you, but I wanted to say it anyway.

    Take care of yourself.

    • Thank you, I do appreciate the sympathy nonetheless. You’d be surprised at how many people claim to live with Clinical Depression, suicide attempts and the like who jump on the “fake it until it’s real” bandwagon… or the latest nugget, “Depression doesn’t kill you, you do…”. To me it’s a load of patronising nonsense… if snapping out of this mess was that simple then my meds to stay alive wouldn’t be so desperately needed. You’re right… I know what I need to do and the longer I put it off the worse things get. I have to find the courage somehow and get this of finding a new GP over with… the house move was partly for that very reason. xx

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