Rose's story #spartacusreport #spartacusstories

I don’t have a blog, in fact truth be told I’m only now really taking part in Social Networking and finding it amazing. So bare with me for my part in #spartacusstories.
I am a Polio Survivor, I was 18mths at the time. There are more Polio Survivor’s than there are people suffering with Parkinson’s Disease. During our rehabilitation we were given Physio to strengthen weakend muscles, with the aim of discarding crutches/sticks/calliper’s and wheelchairs wherever possible. We all worked hard, many like myself at age 16yrs were discharged from NHS with no ‘aids’ and told to go out and get on with it, forget your ever had Polio.
I did this, joined the workforce age 16, got married in my 20’s, had 3 children, continued to work throughout.
I applied for DLA the first time about 12yrs ago, I was refused the first application. Despite knowing myself that my condition was deteriorating, it was another 2yrs before I re-applied, this time with the help of a friend who was also a WRO, she also had an aunt who was a Polio Survivor so fully understood that things were getting worse. I have now been in receipt of DLA for 10yrs, this is used to pay for a car, which I was dependant on then but am even more dependent on now. I was given it ‘indefinitely’ which I believe replaced the ‘for life’ award.
If I lose my DLA I will lose my independence, something I have fought for everyday for the past 50yrs. I will be trapped at home as walking any distance will bring on fatigue,brain fog, pain; public transport is also pretty useless because by the time I get where I need to go I am totally exhausted. Hospital appointments would take a 2 bus trip, but I can get there in 20mins by car avoiding much of the exhaustion and pain.
Polio has always been recognised as a neurological disease, but what many of us with polio know and many in the medical profession still have trouble knowing, is that many years after getting polio, something can trigger a condition very similar to ME or Chronic Fatigue Syndrome or even Fibromyalgia and includes the worst of those conditions including general fatigue, brain fog, memory problems etc.

It is known as Post Polio Sequelae or Syndrome. (PPS) On top of that, parts of the body that were apparently unaffected by the original polio, in my case your arms and other parts of your body, are now much weaker and attracting osteo-arthritis and getting worse every year

Can I just state, for the record, I am 52yrs old, I contracted Polio 1961, unusual but not unheard of, I was not fully immunised at the time. There are a few of us who are of ‘working age’ some will be migrating from IB to ESA. Me, I had to give up work 18mths ago as I could no longer cope, even though Access to Work had implemented all the aids they could for me. My ESA(CB) has run out and I have just been through WCA to see if I am ‘fit for work’ I am awaiting the results at this time.
As a community Polio’s have kept themselves pretty ‘closed off’, only speaking to other survivors for fear of ridicule and bullying which, sadly, happened a lot, especially to those of us in wheelchairs, using callipers/sticks etc. I feel that I have to speak out now, no-one else seems to be. As I have already said there are more than a few of us of ‘working age’, we have worked, we are now reaching a point when it is the body that is ‘giving up’ due to the overuse/misuse during our time we had our ‘normal’ lives. We are now having to accept the fact that we are disabled, the fact that was ‘drummed’ out of us as children that we were not and in fact ‘lucky’ we survived. It’s very hard to watch myself slip away like this, it’s the same for other’s. Myself and a couple of other’s have joined this campaign because we thought it was right, a real effort was made on our part to encourage other members of our community, did we succeed ? I have no idea as there was no response to our posting on forums/facebook/twitter.
So there you have it, it has taken me 3 days to write this down, it’s been an emotional rollercoaster, I am still coming to terms with what I am discovering is going wrong with me.