Desperate

Sparkys6887
Sparkys6887 Member Posts: 58
edited 27. Jan 2016, 10:50 in Living with Arthritis archive
Hi all,

Been a while since I've been on the site.

Last year I had Whooping Cough for four months. Amazingly my arthritis went into complete remision and for the first time in fifteen years I didn't take prednisilone. I was also off my ANTI-TNF Tomoxilab (excuse spelling).

Ever since I've recovered from whooping cough I've been in flare up. I'm now back on ANTI-TNF and taking Hydoxycholorquine, naproxen, paracetamol and dihydrocodine. I'm in a lot of pain which is effecting my sleep and also triggering my neuro condition (syringomyelia). When I inject into my stomach my skin bruises really badly and a large round lump appears which takes a couple of weeks to fade.

With a lot of support from my wife I'm still able to work, I'm a psychotherapist and supervisor and would like to run my own clinic. I work a lot of hours in order to support my family and fitting appointments around work is a nightmare. My local council is also chaning and restricting all the disabled bays to a maximum stay of three hours which leaves it near on impossible for me to park near work.

My DLA is also being assessed for PIP which is stressful. I'm a wheelchair user for any distance over twenty metres. The rent for our terraced house is £1,500 per month which is cheap for our area and when we moved in there was raw sewage running down the outside steps, there was a serious damp problem in the loft, the glass was falling out the backdoor window and we had a flea infestation. The house was in very poor repair and the letting agents didn't want to do any work. Thankfully my wife is very resourceful and managed to get the landlords email address and we've been in contact with her. Together we have got the work done but in spite of us wanting a direct contract we are still tied into the agents paying them £200.00 a month for doing nothing.

I'm really struggling. I need/want more housing security and need. a house that better supports me. I often fall down one of the many flights of steps we have. I'm working a minimum 40 hours a week to just about stay afloat financially and can't save for a deposit. I'm aware this isn't sustainable and aware of the destruction of my body and yet I'm trapped.

I really love my work but could do with working twenty rather than forty + hours. I would love to own my own home which would support me and my family better but the maths don't work. I want to be free from pain :( I feel like giving up. I'm doing all that the government says it wants disabled people to do but I'm being sabotaged

Comments

  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    You are in a truly horrible situation, if not several, and I have read and re-read your post.

    1. You are on a shed load of meds including 15 yrs of pred yet still in a great deal of pain.
    2. You are working over 40 hours per week with ambitions to start your own clinic.
    3. Your home is unsuited to your needs and causing falls. (Am I right in remembering you also have osteoporosis? Yet still taking pred?)
    4. You have the additional stress of a PIP appraisal.

    I am amazed at your grit and determination to support your family but clearly your own health is suffering enormously in the process and will continue to do so. Something has to give – something other than your own body.

    You are a psychotherapist so you understand the value of honest communication. I think you need to talk to others about this (your wife, an occupational therapist, the council re being re-homed somewhere more suitable, maybe to our own helpline people for starters just to give your feelings a good airing). Maybe you have to think outside the box. Think the unthinkable. Forget your current priorities about what can be changed and what must stay the same. Assume that everything can be changed and work out, with your wife, what might improve matters. Rushing headlong into an early grave won't. Assess your family finances and spending, maybe with an expert. How much is really essential? Do you really need to work so hard? You are not solely responsible for your family's welfare and you are in no way responsible for having arthritis.

    Make a start with sorting this awful mess. Chat to our helpline people. And please, take care of yourself.
  • Sparkys6887
    Sparkys6887 Member Posts: 58
    edited 30. Nov -1, 00:00
    Thanks Stickywicket.

    Yes have osteoporosis too. Thanks for the straight talking. Arranged to have the morning off work tomorrow so will catch up on sleep and actually found time and space for a blood test too. Hope I will be in a better position to make decisions soon.
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    I hope so too and I like the plan of a morning off coupled with a blood test. It's so important that we keep up with the bloods as they tell the docs of stuff that could be going wrong long before we're aware of a problem. Let's know if the lie-in helps.

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