I’m a 44 year old lady, living in Gloucester. Here’s my M.E. story:
I was “officially” diagnosed with M.E. in March 2005 at the M.E/CFS Clinic at Frenchay Hospital in Bristol. It was a huge relief. I honestly thought I was going mad, that I was just a fat, lazy, good for nothing. From that time looking back though, it all started to make sense, why I had found it hard to hold down a full time job, feeling completely exhausted all the time and unable to sleep with no relief from sleep when it eventually came. Then I looked for a trigger, the event which started it all. I hadn’t had glandular fever or a bad dose of flu. It was suggested to me that it could have been the traumatic premature birth of my twins, when they were very ill and I had to go into surgery for gall stones.
However, I believe it was when I’d been in Bristol Royal Infirmary for the removal of an infected coil. I was very ill and had masses of antibiotics. I think it bleached out my system and knocked my immune system so badly that that was when the M.E. took hold. This was about 12 years ago. By then I’d had one failed marriage, having left my husband and my 4 year old twins who stayed with their dad and was trying to build a new relationship in a new city, with a new job as well. As you can imagine everything started to go downhill for me from this time but it happened so slowly that I didn’t notice. I started having a number of small amounts of time off sick from work and it was becoming a problem.
I changed jobs, to one I thought would be easier because I had more experience at it. It didn’t make any difference though. I’d work as hard as I ever did, then find I’d pick up a bug, or just feel completely exhausted, I’d have some time off and then the circle would start again. It also started to reflect in my home life too. Although happy and married again, I just found I couldn’t manage the household tasks like I used to, everything was such an effort. I was travelling every Friday night 30 miles to Gloucester on a Friday night to stay at my parent’s house so that I could collect my twins to have contact at weekends and return to Bristol on Sunday evenings, so my housework had to be fitted in during the week.
I used to push myself so hard that I’d pick up any little bug or cold going, try to pick myself up again with rest and start all over again. This went on, over and over for five years, job after job. Even moving to a new City (Oxford), I was gradually, slowly, getting worse and worse but not realising what was wrong. I lost my dad to lung cancer in 2001 which really knocked me down, I was so low. My husband at this time started to abuse me. Because I wasn’t keeping up with the housework and struggling with work he used to shout at me a lot, started pushing me about and laying into me about being fat and lazy. I pushed so very hard to keep on top of things but in the end I gave in. I was so very demoralised and depressed. I left my second husband and went back to my parent’s house - again.
I went through another stressful divorce, met another chap and moved in with him in Weston-Super-Mare. Huge mistake! I started yet another job which I couldn’t keep up with and another relationship that was doomed to failure. It was at this time that I was diagnosed with M.E. I tried working part time for a while in a job that supported me with my M.E. but by this time I was so run down that I had to give up. My chap soon got fed up with the fact that I was unemployed and therefore not bringing any money in and not able to help him look after his son at weekends. So that relationship was over and, once again, I went back home to live with my mum, vowing that my life with men was over once and for all and that from now on I was going to look after number one.
I guess I’ve just always yearned for the love and attention of a companion but it’s taken a huge toll on me, not only emotionally and physically but also financially too. I’m practically penniless and if it wasn’t for my mum I don’t know where I’d be now. Soon after moving back with my mum my M.E. did improve a little. I was attending regular clinics with my M.E. Occupational Therapist in Bristol and seemed to be on the way up. Unfortunately in April 2008 I had to undergo bowel surgery which was successful but attacked my M.E. with a vengeance. Since then I’ve really gone downhill. I’m now practically bedbound and I’m now having seizures and paralysis attacks (all apparently due to the M.E. my doctors have told me).
So this brings us up to present day. As I feel very strongly about this I need to mention the appalling treatment I’ve received from the Department of Work & Pensions, yes the fabulous DWP – the benefits people. It has been such a big part of my life and I cannot express in words the loathing I have come to have for this institution but I guess this isn’t the place to go into it in detail. I have had to go through I don’t know how many appeals for DLA (Disability Living Allowance) and in May 2009 I even had to go to Tribunal – which I won. When I actually got to talk to real, non-DWP independent people, they completely agreed with me and I won my case. Fortunately, I managed to get Legal Aid help and was put in touch with a company called Eaga plc.
They were so very helpful and supportive and were also disgusted about how the DWP were going about handling my case. As you can imagine, the stress and emotional anguish of having to go through all this nonsense hasn’t help my health at all. In fact, I am sure it has aided in my deterioration. I truly believe these people know this and don’t care because they know that in the end we’ll all just give up trying and they won’t have to pay us anything. I’m not going to give up though. My thought is that the more they treat me like this, the worse my health will get and they’ll end up having to pay me more in the end because I will be so ill that I will need the highest rate for everything!
There is a light though, the fabulous Gloucester Social Services. I have to say they have been absolutely brilliant. I was worried when I made that first phone call to say that mum was struggling to cope and that we needed help but I don’t know why because they’ve been fabulous. I now have a lady who comes to help us for 12 hours a week. They also arranged for a stair lift for me and I’m soon to have a wet room bathroom fitted. My social worker is just lovely and my Occupational Therapist has got me a walking sticks and rails on the walls etc. They have been so very helpful, just at the time when I really needed support. At the beginning of May 2009 BBC Radio Gloucestershire had a show about M.E. because it was “M.E. month” and I phoned in.
I got my pennies worth in about the DWP and that I’d had to go to Tribunal but I also said that I’d found that as my M.E. had got worse, that the support I’d been receiving from the M.E. community had lessened. I wasn’t able to attend my M.E. clinic anymore because I couldn’t travel the distance to get there and I felt let down. There was a lady on the programme from Action for M.E. (an M.E. organisation) and she recommended that I contact fellow M.E. sufferers on forums such as Foggy Friends. So, here I am, that’s how I got here and I’m now looking forward to making new friends and who knows maybe helping a few people on the way. Even if I can’t use my legs and if I’m never able to leave this bedroom again, at least I can keep in touch with people on the World Wide Web!
Thank you Foggy Friends, you’ve opened up my world.
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