My Invisible illnesses

My most recent assessment the nurses report seemed far different to what I experienced with no regard for my mental or physical health and missed a lot out of what was discussed. Every time my esa or pip has come under review I have suffered hardship beyond my belief. In 2012 I lost a private rented home resulting in homelessness and again in 2013 & 2016 due to cuts and delays in payments resulting in landlords having to evict me for rent shortfalls
this has all escalated and barrel rolled since an accident I had on the 1/3/08 where I worked in horse racing as a jockey/ stable lad.

I was training a horse at a very well established horse trainers farm when this horse decided to run blind and leave the track with me on board at gallop 30-35 mph and collided into a tree which resulted in the horse dying and myself suffering concussion and shoulder injuries which in turn needed half a dozen surgeries to reconstruct my right shoulder and disconnection of my collarbone to the joint  which I still suffer to this day with pain and reduce movement and feeling.
I had been probed for years with x-rays, MRI’s, blood tests, HIV tests.  I guess this is why it took about 6-8 years to get a helpful diagnosis. I have tried acupuncture, massage, chiropractic, osteopathy, hydrotherapy, homeopathy and goodness knows what else, in trying to manage it. But the plain fact is nothing has worked And if anything  my condition  had been worsening.
So when I finally got diagnosed with fibromyalgia , despite not being a fan of ‘labels’, it was a relief to get an explanation. I had never heard of this, but it made sense to me. All the symptoms fit in with how I was feeling, and the foggy brain I now have. I don’t know what it’s like to have more than four hours of continuous sleep any more. My body is very sore to touch and bruises very easily. I have more bad days than good days, but I try to keep on top. I have sensitive days to light or sound, my emotions are sometimes uncontrollable where I can either cry and sob or just plain short fused. I have to rely on help to do my grocery shopping or heavier duties and use aids/ utensils that make this more bearable and less testing along with alarms and reminder as I get forgetful with the brain fog and pain medication.
every day I have some level of pain or other though it is still predominantly in my neck back and shoulders, I also get pain in my face from time-to-time and my collarbones often really hurts including some crepitus in the joints and numbness in my right hand and left leg.
I have also had to battle with really bad fibro fog– a lack of clarity in thought processes, chronic fatigue (coupled with an inability to sleep well). And over the last few years I have had an increase in back and hand pain which substantially affects my ability to work or even hold down a job. Since my accident in 2008 I have been in and out of employment 30+ times some of which I returned on several occasions by employers who gave my injuries/ disabilities consideration to no avail. these employers I was very grateful for all adjustments they made and opportunity’s they had provided and I wish things had turned better.
My mental health has also suffered and my social life is non existent in turn I have lost all of my friends due to me not being around and too embarrassed to explain why I just can’t come or not up to being out in social situations, these social situations make me uptight and this can also increase my pain thanks to the anxiety. Living on benefits is not how I have seen my life, with lack of luxuries and being  under constant scrutiny from a DWP department and a medical assessment process which in turn leaves me with a lack of income to attend doctors/ hospital appointments dependent on emergency payments and food banks.
Public transport is a bone rattling journey on a bus so I refrain from public transport but with cuts and sanctions to the income I received from the DWP my car is no longer affordable thus taking away what little mobility I had along with the tiny social life. the car which is automatic is now just gonna rot since the latest cuts as I cannot keep up with the insurance payments.
This in turn leaves me with suicidal thoughts
As I mentioned earlier I have had over 30 jobs since my accident in 2008. In 2013 I was arrested for failing to declare multiple  employments and some unpaid trial jobs that didn’t last more than a day or 3 which I accept was my mistake. I did not declare at the time as I knew my benefits would be delayed by what was then 6 weeks of hardship and cuts. I was a very hard working man , I do not drink nor do I take drugs and now have a criminal record albeit my mistake I now how to live with the fact I was punished for trying so hard to take back the reins of my illnesses and return to work,
It is extremely frustrating that injuries and illness can take someone who is educated, ambitious, hardworking, tireless and rob them of their ability to work, exercise, think clearly, and ever feel awake or healthy
It’s NOT psychological burn
It’s NOT laziness
It’s NOT whining or malingering, I so desperately want to work but my inability to hold down a job due to the relentless pain, illness, well being and mental health has a big say in how I live right now.
I have suffered and will probably continue to suffer through the system in place. (constant assessments) and how they score your health with points and disregard  my doctors advise.
on top of all this in 2015 I was diagnosed with lung disease abroad and this took another 2 yrs to be confirmed by doctors in the UK. The specialist I seen was very fast at dismissing this due to my age and took some convincing for me to persuade him to look at my MRI discs from Portugal which took months before I got a reply confirming I was in fact suffering with disease at the top of my lungs which in turn delayed any treatment going forward which is now being managed by my doctor and nurse with regular spirometry tests and medication reviews.

now days I just don’t know where to turn and lock myself away from having to explain my injuries and illnesses as nobody can see my lungs, scars or feel my pain saving me the constant questioning or rude comments.( “you look fine to me”)

John

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