Help, I can't do this!

Help, I can’t do this!

I am laid in bed after a tiring and painful Christmas day, my pain levels were high and I had been dosing up on morphine and fatigue was hitting hard, it was then that I had a panic attack!

One of the biggest struggles of being chronically unwell is acceptance, we become unwell and doctors diagnose you or as is the case with my pain, they just say they don’t know and they tell us that there isn’t much they can do except prescribe pain meds. We then seek a second opinion because we can’t accept the diagnosis or we are convinced it can be diagnosed. We fight the doctors but we also fight within ourselves, its not uncommon for patients to wonder if there is really something wrong, but we could never admit that, but then a flare up hits and we know that it we really are unwell.

Finally we accept our new life, we accept the daily battle with symptoms and coping with a body that doesn’t work like it once did, we accept that the old us has gone and that chronic illness is our new life. Its not easy but we have to accept it because battling doctors to try and find a solution is damn hard work and it actually makes our symptoms worse. Many of us have to accept that we can no longer work, that by trying to hold on to what we have left is dragging us further into what we dread, a life lost, a life changed forever!

I had accepted my new life and I realised that the harder I tried to keep going, the harder my symptoms kicked back. Over the last three to four years I have slowly deteriorated and now I am at the point where my life is in bed or on the settee and if I’m lucky, I have a hospital or doctors appointment and I get to leave the confines of our home,  but it means that I will have a flare up of pain and fatigue for daring to venture out.

This Christmas just sitting at the dinner table for over an hour was an ordeal, it hurt, in fact it was f’ing painful. So that night as I lay in bed with my body feeling like it did back when I was seventeen, when I stepped out into the road without looking and an Austin Marina doing thirty miles (?) an hour hit me and flung me over its bonnet (hood for you Americans) and under a lorry, I had a panic attack and I had it because I suddenly felt like my life was over and that I couldn’t handle being like this anymore.

I have asked the consultant at the pain management clinic and the psychologist, if they can get me some help? I want some rehab, I want the chance to be able to try once more to try and fight. I need some help and guidance to see if it’s possible to even wind the clocks back five years, back to a time when I was still in pain but when I could sit in my wheelchair for a prolonged time, when I could push from my house to the hospital in my wheelchair and feel like I still had some control. I have told them that I need to be able to get into a swimming pool a couple of times a week, not to do lengths but to just get some gentle exercise by plodding about in the water. I have said that I know that massage therapy would be a massive help, I had massage a few months back and it was incredible how much it helped, but I have been told that they can’t help me with either of these things. This is probably about £60 per month for something that would help me to be more mobile and yet I am prescribed a large amount of different medication every month that must run into a small fortune per year.

Last night I spoke with my wife about my fears of slowly declining health, I have decided that I need to attempt some form of rehab myself and I have to do this without spending any money. I have a PDF of yoga for wheelchair users and we still have an old Wii console that I can play tennis on whilst sat in my wheelchair, that should get my heart beat raised and is light exercise and my wife is going to regularly massage my legs.

I am surprised that the NHS don’t offer people who are in my position things like swimming, massage etc, but they don’t and so I have to somehow try and sort it myself. I have been to trusting of the pain management service and hoping they would help but just pain meds isn’t a care plan. So hello 2016 and let’s see if we can’t sort this knackered body out!

7 thoughts on “Help, I can’t do this!”

  1. Hi, Which area are you in? Some areas now offer personal health budgets for long term conditions for services such as massage, swimming, gym membership etc. We do in part of East Kent. Look on your local Clinical Commissioning Group website.
    Tamar

  2. Nice to meet you, Zec. I did forget to say that the pain patch the doctor put me on was the Butrans patch and the reason I had the stroke-like symptoms was because the idiot overdosed me, again. He started me on the highest dose, instead of starting on the lowest and increasing as needed. I wanted off the Fentanyl patch because other’s said I was no longer me. They said it was making me crazy!!!!! So, it went from Fentanyl, up a few notches to this Butran’s patch, when what I was wanting was to get off the opiates, all together! I hope to talk with you some more. Have a good night. Peace xx 🙂 I sure hope you have gotten off the Fentanyl patch because the higher the dose, the more unlike yourself, you’ll be. 🙂

  3. I’m so sorry that you, too, are having to live life this way. Most of my time is spent in bed. I call ALL of my doctor’s appointments, field trips! That’s about the only time I really get out of bed and out of the house. My body is about 30 years older than my actual age. So, I hear you loud and clear, and I do understand, as my life is pretty similar. Be careful with those pain clinics. I’ve been to 3 and I’ll never go to another one as long as I live. The first 2 did nothing, but give me some Celebrex, and told me to come back in a month. I went back. They asked how the medication was working. I told them it wasn’t working at all. I was then told, “sorry, there’s nothing else we can do for you.” Pain clinic number 3 almost killed me, as it was one of those drug mill, pain clinics…………..After my first visit, I left with 3 new meds and was told to get started right away. I started with one medication at a time so if I had any kind of reaction, I would know which medication was causing it. The first dose of the first medication, overdosed me. Not my words, the doctor’s exact words. I went back in a month and he said, “honey, I’m sorry I overdosed you.” He said this as he patted me on the knee. He then asked how the other 2 medications were working and I told him that I was scared to take them because I’d never heard of them before and after what happened with the first medication. He told me to go ahead and when I get home, put the pain patch on and start using the other medication. I, once again, was only introducing one new med at a time, for obvious reasons. On day 2 or 3 of having the patch on, I began to slur my words to the point you couldn’t even understand a word I was saying. I would get a few slurred words, that no one could understand, out and I’d forget what I was trying to say. I would get really frustrated because I couldn’t find the words I needed. I had stroke-like symptoms, but no stroke. My son heard me trying to talk to the pharmacist, on the phone, and of course, I was making no sense, and no one could understand what I was trying to say. So, anyway, my son heard and came into my room and asked me if I was okay, and it then became very obvious that I was not okay, and my daughter rushed me to the ER. Long story…………….I was hospitalized. My blood pressure bottomed out at 64/29, 67/24, somewhere right in that range, can’t remember the exact numbers. I was rushed to the ICU and told that if they couldn’t get my BP back up and under control that my organs would start shutting down. It was horrible……….Luckily, my primary care doctor deals with any pain medications I may need from time to time. I feel your pain. I understand. It sucks. I wish you didn’t have to be living like this. It’s a very lonely existence because as I’m sure you already know, that people I once called friends, good friends, friends that I just knew I would be friends with forever, suddenly forgot that I even exist. No phone calls, no visits, nothing………………………..I guess, that would have been too much trouble for their so called great friend……..Luckily, I’ve gained 10 friends for every friend I lost. These are true friends. Unfortunately, they live a similar life, but they get it and we know we’re not alone. I wish you the best in this New Year. I hope you can get your knackered body, as you put it, sorted out. Just know you’re not alone and there are many of us out here that get it, truly get it, because we live it, too. I hope 2016 is a “better” year for you. Hang in there. Take care. xx 🙂

    1. Wow, they certainly messed up properly then! I was overdosed once when he prescribed twice the dose of a Fentanyl patch than he should, I ended up at the hospital struggling to breath. I also fully understand the loss of friends but connecting with people who are also chronically unwell and finding comfort in having people who fully understand.
      I’m Zec by the way, I hope 2016 is kind to you 🙂

  4. Sorry to hear you’re suffering so. But please know you’re not alone – I too am pretty much confined to my bed or settee and this life is no joy in the slightest. In fact it’s hell but we have to keep looking. Hopefully that Yoga will do at least a little something. Take care, mate, best…

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