Neurological conditions
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Is it worth it?

TopkittenTopkitten Member Posts: 1,263 Pioneering
Apologies if this is in the wrong section but there isn't a Chronic Pain section that I could find easily, though admittedly my major problem these is the Neurological Pain caused by continuous Chronic Pain damage over a long period.

Today is yet another bad day, I get them quite a lot but today is a day I should ask for help.... except that, whenever I have asked for help (a lot of times) I have never gotten any.

I am crippled by excessive pain and, it turns out, surgery could have prevented it. I didn't push for any because the head of the Pain Clinic told me 10 years ago that the surgery was too dangerous. After discussing things with a friend I found out it's the same surgery done for Scoliosis. Too dangerous? Then why is it mostly done on children without life threatening conditions? Obviously I was lied too.

Things would be easier if I could use 2 sticks, 2 crutches or a walking frame but all of them cause my upper body Chronic Pain to flare badly. On one occasion in the past I completely lost the use of my arms for over an hour trying to use such helps. I was supposed to have surgery and waited a long time but complications meant it was cancelled and I had to go on the list again. At this point the senior Orthopedic surgeon made a mistake and now not only am I not allowed the surgery that department now refuse to even see me.

I sit in a recliner chair for roughly 23 hours a day to keep the pain down to a 5/10 mark. If I walk about then it rises instantly to 8/10. For the pain I take 600 tablets a month. I used to be on the maximum regulation dose of Fentanyl (125 microgrammes per hour) but had problems and had to come off it due to blackouts and memory loss. The GP didn't have a clue so I had to tell him not to prescribe it any more. My skin allows me to overcome the extraction limitations and I was exhausting the patches in 20 hours instead of 3 days (an over dose rate of roughly 600 microgrammes per hour). Fortunately my body suffers no damage from lethal amounts of opiates of any type even when I have heard of people having died from much lower doses than I have taken over the years. I should be in a wheelchair accessible property (council) but when I requested an Occupation Therapy Assessment through my GP they referred me for therapy 3 different times and I only finally got one when the hospital referred me when I took too much medication for the pain and went to A&E. The hospital department of Social Care did the referral.

Having finally got my assessment they first sent me just the covering letter with no report and only got it right when I complained (it took 6 weeks instead of 6 days). I was concerned about the assessment because the person they sent had very limited English skills and no experience of wheelchairs what so ever. However, the report conclusion did agree that I should be moved but the description of my condition reduced 1/3 damage to my spinal cord down to back pain and a disc problem between C7 & C8. Interestingly there isn't a person in the world that has a C8 disc, lol! The description of my care made it sound like I had carers 3 days a week and looked after myself fine. In fact, I shower every month or two, I never wash, I eat maybe 2 or 3 hot meals a week and never more than 1 meal a day. Some days I get by on coffee, sweets & biscuits. Some days without the coffee and days like today I've eaten nothing at all. I haven't slept in my bed for over 2 years (despite it being electric) and I also only remove my dentures when they create a mouth ulcer (roughly every 2 weeks or so instead of every night).

I am not allowed car nor even a care assessment because over 2 years ago a junior Social Worker made some unforgivable mistakes and it was either I lose me care or she loses her job. Guess which option they chose.

Without the support of GP's, Orthopedics and Social Care I see little point in trying to keep going. I now know roughly how many days it takes to starve so that seems a good option as I've tried every medication option I have at some time or another without success.

Suicidal? Ofc I am! I have been classed as suicidal for 5 years and have OD'ed a couple of dozen times and yet I have never received any help at all from Mental Health.

Today is one of the worst of days and it's all down to receiving such excellent care and support.

TK
"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.

Replies

  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    Hi @Topkitten. I'm sorry you've had such a frankly awful time.
    I'm aware that we've signposted you towards MIND, Samaritans and likely a few other resources in the past and you've found them unhelpful. With that in mind, would you like us to attempt to find you some additional support? If so, please just send us an email to [email protected] If you're willing to share some extra information there, we'll be able to put the wheels in motion.

    Please let us know and I hope you feel a bit better this morning,

    Adrian
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Ok, I'll see if I can actually manage to send an email but I must be careful. Too often have I been given hope back (having lost all of it) with someone promising to help only to have had them disappear on me as though they never existed.

    Today is no better than yesterday. Haven't eaten for over 40 hours now.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
    Hello @Topkitten. We can't promise it'll be successful, but we'll do our best to try and help.

    Do you think you might feel up to getting something to eat today?
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    Hello @Topkitten. Sorry to hear you're having such a hard time of it. I know this may be a long shot, but in the town/village where I live there are local volunteers and independent charities who provide services such as free counselling (with home visits possible) and a home visiting service for people who are housebound. I was wondering if there might be any support available where you live? It may be worth trying to find out. Living in a small place the parish church and parish council are good places to ask, as is the doctor's surgery. Do you have any friends/family who can help or provide moral support? I hope things start to look up for you very soon.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @underdiagnosed, ty for your comments. It is difficult for me to arrange anything much as I have been house bound since April 2018 and that makes life difficult. An example of how unhelpful the GP's are is that they have referred me to the Pain Clinic 3 times since I became house bound and because they do not do home visits it was just a waste of everyone's time. Someone suggested Hospital Transport but that was not available for GP referrals, only hospital referrals.

    I much regret moving into this area 3 years or so ago but I did it to be near my children and to take pressure off my mum who was my only help. Unfortunately I hardly ever see 2 of the kids and get no help at all, my third child hasn't even spoken to me for 4 years and only seen me once in that time when I came out of a coma. Mum did still try to help a little but she died 18 months ago and that, along with my other problems, was why I ended up in a coma. The previous area gave me much more support and I tried to move back but the incompetence of the Occupational Therapist has destroyed that idea. I think that, if I could use my wheelchair full time, I might have a chance of being a little mobile again but it's unlikely now due to mistakes and lack of support in general.

    Sorry @Adrian_Scope , I still have no interest at all in eating anything.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    I'm sorry to hear that @Topkitten. Family relationships can be very complicated. It may be worth trying patient transport again if the appointment is at the hospital. I am largely housebound, use a wheelchair and use it for all my hospital appointments. Its basically a tick box criteria, if you are unable to go to the shop by yourself and are housebound you would defo qualify in NW England, I'd have thought you should elsewhere too. You may have just been unlucky with the call handler. I was refused once when I phoned, but I tried again and spoke to someone else and there was no problem. You could consider emailing your local MP, he/she may be able to help. Is there another GP surgery in your area who can provide better support? The surgery I use now is so much better and far more accommodating than what I'd experienced before. Have you tried googling for any services in your area? I'm very lucky there's such a supportive community where I live but I know its not like that everywhere. Having said that, council services are not good, and my experiences with hospital treatment have varied tremendously (from the very good to the very bad). I have to pay privately for care now having previously being entitled to free care from the local council. You are not alone in experiencing these kind of problems. Thinking of you.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @underdiagnosed, the Pain Clinic here has been moved from the hospital into Community Services and isn't at the hospital, nor are any of their seminars or courses. That's why Hospital Transport is not available from a GP referral but is from a Hospital referral.

    Having suffered for many years and had few problems with a village surgery I moved into a local town 3 years or so ago, to be nearer my kids and hopefully get help. Not only did I not get the help, I have had nothing but problems with GP surgeries. The problem is that I have a unique and unnamed condition for which there is no cure and no treatment. Doctors (even specialists) don't really understand it and I have had to find out about it myself. I was kicked out of 2 surgeries of the 6 I have been with and left 3 others due to problems with my assigned GP's who simply have no idea how to treat me or even deal with me. Doctor's in general do not like someone knowing more about it than they do especially if they aren't qualified as a doctor. 50% of the doctor's I see (including hospital specialists) incorrectly diagnose me and I always have to argue them into checking the MRI's before they back down, then I get punished for arguing in the first place no matter whether I was right or not. GP's could, but don't, have access to MRI results presumably because it isn't cost effective. Only 1 GP has ever treated me properly for a few months but she moved away. A&E is especially bad for this issue and, like my last visit I often get asked to do something impossible or get lied to. There are no other surgeries in the area that I haven't already left. Being housebound would make it difficult to transfer anyway.

    I still haven't eaten since last Tuesday even though I had a problem at the weekend. Turned out it was an odd issue with an interaction I wasn't aware of (do not mix Tramadol and Grapefruit, not even in juice form). I refused 2 ambulance crews when they wanted to take me to the local hospital and explained why. Evidently they were concerned because my BP was 213/115 and I was Tachycardic, as usual it did me no harm at all. They did arrange for a special crew to assess me because it was a Paramedic and an Occupational Therapist but they didn't even assess me after asking why they had been sent. I was also promised a GP escalation and a call from the GP. That never happened either.

    I am never hungry and have no intention of starting to eat again.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    Hi @Topkitten. Don't give up. Also, doctor's don't know everything, not even the ones who think they do. I get lied to sometimes as well, I think because the truth is they can't figure out exactly what's wrong with me either. Even being housebound doesn't have to mean you have to be miserable. I follow sport on TV and radio, which works as a distraction. When nothing's on I put on a DVD. If I need cheering up I watch something funny. I learned to knit, which relieves boredom and is inexpensive. Now I make things for various charities which makes me feel that I'm making my own small contribution to society. The things you can enjoy or find gives you some purpose to life may be different to what works for me, you've just got to find out what that is. And keep using Scope for support, sometimes it helps to talk.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Hahaha! Please don't mention DVD's. I have a surround system in which both the Blu-ray and DVD crystals have died. I added an external unit which also plays Blu-ray no longer and only some DVD's. I have a new system in a box which I cannot set up now either but would work if only......

    The biggest problem is that I am pretty much chair bound in a recliner which is as flat as I can get and still watch TV. I would be in a bed permanently here if only the bedroom was usable and I had a TV fitted. I would be ok in a wheelchair accessible property but 15 months after I asked for an assessment the arriving document was factually incorrect despite supporting my case and I will never use anything that isn't accurate. Especially as the guy who wrote it was telling lies to cover up Social Care's mistakes.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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