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!