Posts Tagged ‘Fibromyalgia’

For most of my life I have been very fortunate in the fact that I have been healthy, hardly ever requiring the need of a Doctor aside from back problems caused by a fall down a flight of concrete stairs when I was in my teens. I took my health for granted as so many of us do, stretching myself to the limits and thinking myself indestructible. I didn’t take particular care of myself, no dieting, healthy eating or regular exercise although I was a pretty active woman anyway. I worked all hours running my own busy little pub, I travelled and I loved to hike out in the countryside. These were my passions and they were the first things to go when I became sick. I lived in Australia for a while and it was there that I first started noticing all was not quite right. Pain where before there had been none and struggling to do an all day shift at work. I struggled on for a while before coming back home to the UK and that is when the real problems started.

I managed to find myself somewhere temporary to live and part time bar work to tide me over until I could find something more permanent and get my own Photography Business off the ground. However I started to struggle to keep up with everyone else, a long days shoot would put me flat on my back for two days and I was starting to have problems walking as well due to the chronic pain in my knees but still I pushed it to the back of my mind, after all I was no spring chicken, I was pushing fifty!

Then I had a bad fall, I slipped on ice and landed right on the base of my spine, at the time I didn’t think too much of it, I was sore but thought it was just bruising and would heal soon enough. But the pain didn’t go away, I couldn’t sit properly as it was excruciatingly painful and my original spine problems were made worse by the awkward posture created by having keep the weight from my coccyx. This carried on for a few months, I was too scared to go and see my Doctor in case she told me it was Cancer or something else equally as frightening, my stress levels went through the roof because each day the pain all over my body just seemed to get worse. I had to give up work and claim Disability, I didn’t have a clue about Work Capability Assessments or ESA at the time (I had been out of the country for two years don‘t forget), I thought a note from my Doctor would suffice. So the much delayed appointment for my Doctor could no longer wait and I found myself sitting in her surgery crying my eyes out and spilling out everything that I had been going through, the pain the fear and everything else that had seemed to be ‘going wrong‘ in my life. I hadn’t realised quite so much how all of this was impacting on me, how could I go from a globe trotting explorer to this pathetic woman snivelling in my Doctors office in the space of months? I couldn’t understand it and I’m sure you’ll understand if I say I was absolutely terrified. I was in a relationship at the time and was constantly getting nagged at for not doing enough around the house, or going out and getting a full time job, even though I had tried to explain that I was in so much pain. I was made to feel as if I was making it all up and indeed on more than one occasion they even hurled that accusation at me. It got to the stage where I would sit at home in silence, trapped in my own nightmare little world I stopped going out and then got accused of being anti-social, the list is endless, I felt like I could do nothing right, accusations at every turn. At one point I got so desperate that I got a razor blade out and started slashing at my thigh, the blood running in rivulets down my leg, if asked to explain why, even to this day I can’t give you an answer except to say it felt real and it stopped me thinking. I had so much going round in my head, I was so frightened that I had the C word or if not it was Multiple Sclerosis like my Father, my home life was diabolical, there was no love just resentment turning to hatred. My partner was also a heavy drinker, I would say alcoholic although they denied that and still do to this day as far as I know, nearly every night they would come home and the rows would begin, I just couldn‘t bear it anymore yet I was stuck there, I had no job and no money to get my own place and felt so alone and desperate. Towards the end the arguments turned to violence and that was when I snapped and decided I couldn’t take any more, I had to get out.

I was diagnosed with depression. I was also sent to three different Specialists, one for my spine, one for my legs and to the Asthma Clinic as I had also been having trouble with my breathing. I was diagnosed with Chronic Obstructive Pulmonary Disease (COPD) Arthritis in my knees Coccydynia and Chronic Degenerative Disc Disease. I was put on the waiting list for a partial knee replacement and injections in my coccyx and spine for the pain. At last I felt like I was getting somewhere, x-rays and MRIs proved unequivocally that I did have physical problems and that helped me emotionally to a certain extent. Feeling grateful to a Surgeon or a GP is not something we should ever have to feel yet here I was thanking mine, eyes brimming for believing me. I also managed with help to get out of the house I was living with my ex and found a place of my own so things were looking up…..or so I thought anyway.

I was about to find out exactly how difficult it was to get financial help when you are disabled. I applied for Employment and Support Allowance (ESA) and was awarded minimum rate until I had an Assessment. After a few months I was sent for my first Work Capability Assessment which I failed and I was no longer entitled to ESA. I was living in Nottingham at the time and as soon as I got the letter stating my benefits had stopped I went to the Nottingham Job Centre and attempted to get help, I say attempted because it was akin to banging your head against a brick wall, by this time I was in floods of tears and I literally begged to talk to a member of staff, anyone who could help me, I must have looked a right mess but I couldn‘t help it and cared even less. I was refused and told to ring their office. I did so, I was NOT told I could appeal but instead had to sign on for Job Seekers despite having Medical Certificates to back up my claim that I was unfit to work. So I signed on for three months and every signing day I told the Advisor that I was unfit for work but they let me sign anyway (I am assuming this was illegal although I didn‘t know that at the time either). During this period I found from a Health Care Worker that I was entitled to appeal but not that I could still receive ESA whilst the appeal process was going through. I was still signing on despite this and they were letting me! My ESA eventually got reinstated after I looked up an advice line on the internet and then I waited ten months for my Tribunal which immediately overturned the Assessors decision. It then took them ten months after that to give me my backdated benefit and I have never received the money from the three months that they forced me, illegally in my opinion to sign on. They actually told me I wasn’t entitled because I had declared myself fit to work even though I pointed out to them that each signing on day I had refuted that fact, but, I had my money and the result I deserved so I decided to be content with that.

Six months after my first Tribunal though I was called for another Assessment which I passed with no problems, my pain levels were increasing quite dramatically and this must have shown on the day which had been a particularly bad one, naively I thought this would be the end of it, I had had two assessments and they had irrefutable proof that my conditions were deteriorating rapidly. However six months later I was called for yet another Assessment, by this time my condition had worsened to the point where I rarely left the house and actually getting to the assessment on its own was an agonizing ordeal. I was now seeing a different Spine Specialist who was discussing the possibility of major Spine Surgery and I was also still on the Hospital waiting list for the Knee Replacement Surgery of which Atos were informed and given all the paperwork, once again backing up my claim. I failed again, getting the letter informing me that my benefit had been withdrawn two days after coming out of hospital from having said surgery. I could not believe it, I sat in the chair totally stunned, unable to take in what I was reading, how on earth can they find me fit to work six months after finding me unfit when my condition was considerably worse? I had twenty staples holding my knee together, just what was I supposed to do, I wasn’t well enough to go chasing around everywhere to try and get it all sorted out I was supposed to be recuperating from major surgery, I was devastated. I was left with no choice, I was broke and my rent was due, if I had lost my home I am sure I wouldn’t be sitting here now, I felt that desperate so I hobbled over to the Job Centre on crutches which was now thankfully just across the road from where I was living. I demanded to see an Advisor, refusing to go until I had, angrily waving the letter under the receptionists nose, I am sure I was so very close to being thrown out but I didn’t care, I wanted it sorted out and I wanted it done there and then. They did give me an appointment and I lifted my leg up onto a chair, pulled up my trouser leg and practically screamed at her “Does this look like I am b***** fit for work?” Yes, I’m afraid I did swear, I’m not proud of it but I had already been through this scenario a year previously, I was determined I wasn’t going through the same again. I had one thing on my side this time…..Information. I had done an awful lot of research and I had also joined an online Support Group, Atos Miracles. Just feeling that I wasn’t going through it all alone helped me more than words can say.
I demanded an immediate appeal and that my benefit be reinstated, the advisor looked quite astonishingly at me as I laid out everything I wanted done, including a letter for the council as my Housing Benefit would have been stopped immediately also, although luckily I now had an understanding Landlord. The letter for the Council and the appeal form were sorted out there and then and my benefits were re-instated within the week but at the lower rate. Thanking whoever for small mercies and the fact that I live in a tiny town I hobbled out of the Job Centre and across the road to the Council Offices and also got my HB re-instated the same day. After getting a taxi home I spent the rest of the day and following night in tears because I was in so much pain from having to exert myself so much and couldn’t walk at all the next day.

It took thirteen long months for my Tribunal to be held this time, during which I suffered severe hardship and amassed considerable debts to the point at one stage of having an arrest warrant issued. I had to borrow the money from my family to stay out of prison which was humiliating in itself, I ate very little and I spent one of the coldest winters I had had for a very long time because I couldn‘t afford to put the heating on, instead sat there wrapped in blankets clutching a hot water bottle. I got so depressed I went for days not getting dressed or even opening the curtains. I cut myself off from friends and eventually even they stopped calling. My condition kept deteriorating, some days I didn’t even have the energy to get off the sofa to cook myself something to eat or even make a cup of tea. I went back to see my Doctor after I practically lost the use of my right arm due to pain and was so low at one point I seriously wondered whether it was worth living. I was in hell and I couldn’t see a way out of it. I had no diagnosis and felt that no one believed me when I told them I was literally in pain from head to toe. Another Specialist and once again the fear of what he was going to tell me. I was in for a surprise though, no stuffy Specialist looking down and talking at me, this guy actually listened to what I had to say and talked to me, it was like a breath of fresh air. I have never known any Doctor to be so open and honest and although I had bad news I still came out of there feeling as if he actually understood what I was trying to tell him. I had written everything down, pages and pages of notes of everything I wanted to say to him as my memory no longer works properly, but in the end I didn‘t need them, it was probably the best conversation I have had with one person in a very long time..He diagnosed my Frozen Shoulder and prescribed a course of injections which I am pleased to say have helped tremendously. He gave me a leaflet to read as I was leaving and told me to read it and we would discuss it next time I saw him. The leaflet? Living with Fibromyalgia, my heart missed a beat when I read that, I had considered it, of course I had, but the growing certainty inside me was a different matter entirely. Was this me? Is this my life now? As soon as I got home I read the whole booklet from cover to cover, twice over, crying as every page described exactly each day of my life and the problems even the smallest thing can incur. I could have written it myself it was that precise. I had a week before I saw my Specialist again, seven long days where emotionally I felt like I was on the worlds largest roller coaster. One minute I felt relief, because I had a name for what was happening to me, relief would turn to anger because there are still so many unanswered questions and so to fear, is this my life now, do I have to live every day for the rest of my life forgetting what it feels like to not have any pain. It was one of the longest weeks of my life and it was with trepidation that I went to the clinic seven day later. But there it is, I have Fibromyalgia and I am still struggling to come to terms with it, I have a good support network and for that I am very thankful but it is difficult. I still have days where I don’t want to open the curtains and face the world, especially when I have officialdom to contend with also.

During all this I was still waiting for my second Tribunal and in November last year I once again successfully overturned the Atos decision. Armed with resources and fully supported this time I ensured I got my backdated benefits paid a lot sooner and was able to pay off a large quantity of my debts although not all. I thought once again that would be that and after two successful Tribunals surely they wouldn’t ask me for another assessment but ’lo and behold in May this year what should fall onto my doormat? Yes, another assessment form. Unbelievable, I know I shouldn’t have been surprised but I seriously thought they would leave me alone now. I duly filled in the form, sent off all my evidence, even going as far to tell them that I could no longer use public transport and asked for a home visit they still asked me to go for an assessment. This time I fought back, I sent countless emails demanding to know why they hadn’t taken my form into consideration or contacted my Doctor for more evidence, I wrote to the newspapers and to my local MP, whom I still waiting for a reply from by the way. I also told Atos I was going to make a referral against the Nurse who decided despite the evidence that I was fit enough to travel to Nottingham, which I did. After a couple of months of continuous letter writing (or should I say emailing) I finally got my way and the assessment was cancelled and I have been placed in the Support Group for a year. Twelve months of peace so I can now take the time to try and come to terms with what is left of my life and attempt to forge a newer brighter future