Today is ME awareness day so I thought it would be the perfect time to share my ME story.
I became ill at the age of 11, when I had a virus that was suspected Glandular Fever. I don't remember much about that time but I do know that I just never got better again. My mum and I would traipse back down to the doctors many times over the next few years trying to find an answer, but it was always in vain. I was asked several times "Why don't you want to go to school, are you being bullied?", to which I would always respond "No, I wish I could go to school, but I'm not well enough to". I was sent to see counsellors who would ask me why I was there and I wouldn't really know how to answer, because I saw no reason for me to be there. They then referred me to a group therapy for "troubled teens", that was even more of a waste of time - the people in that group had real mental health problems and I had no place being there. I knew I had something physically wrong with me even if noone would admit it! I believe my school attendance was around 50%, yet I managed to leave with 8 GCSEs under my belt. It was around the time that I took my GCSEs that I met a doctor who was willing to suggest that there actually was something wrong with me!
So, at the age of 16, after 5 long years of having no idea what was wrong with me, I finally had an answer! CFS/ME. I was so pleased to have a name for what was wrong with me. I didn't realise at that point what a difficult diagnosis it is! I was given no medications to try and ease my symptoms, just told to go on the internet and look up "pacing".
So for years I just struggled on. I managed to go to Sixth Form College, although had many meetings with my personal tutor about my attendance, because it had dropped even lower than the 50% of High School. I scraped through with 3 A Levels and 1 AS Level. I had applied to go to University and had managed to get the grades I needed. I had intended to go to Uni after a year off, however, a problem with the name on my results caused me to be put into clearing as it looked like I only had one A Level. That led me to look at the places available on clearing where I saw a course that I really wanted to do - Criminology with Forensic Science (I was originally signed up for Criminology with Psychology). So I called them and managed to blag my way onto the course (I was supposed to have Science A Levels, but I just had GCSEs) and ended up going that year instead of the one after. That was a BIG mistake! I barely made it to any classes, and because I had changed my mind so late about when I was going, I hadn't applied in time for my student loan, so I had no money for the first 6 weeks! The stress of that, and having moved away from home and trying to look after myself on very little energy caused me to have quite a severe flare up and I spent pretty much all of my time in bed, but unable to sleep. I saw the doctor who gave me sleeping pills, which turned me into a zombie. After 8 weeks of not attending classes, I decided I needed to drop out, as there was no way I would be able to catch up on everything I had missed.
I came back home and attempted to apply for benefits. I was told I was not ill enough to get Incapacity Benefit but I was too ill to get Jobseeker's Allowance...so I got nothing. I still can't really believe that this happened, and if it happened now, I would be sure to appeal this decision, but I was 18 years old and believed what the DWP told me! Luckily my parents looked after me until I was well enough to get a job. I started work in the Science Lab of the School my Dad worked at. They were aware of my condition and because I was helping them out until they got someone permanent, they allowed me to come in on my good days and stay home on my bad days. I managed 3 or 4 days a week most of the time.
After that job came to an end I got myself a job at Sainsbury's, where I was contracted for 13 hours a week. That sounds like a very small amount, but I really struggled at first. I was working on the rotisserie chicken counter, so the job involved being on my feet for the whole shift, and lugging crates of chickens around the place. It took me a long time to be able to do those 13 hours without too much pain and suffering after each shift! Eventually, I worked my way up until I was working full time, by doing a lot of overtime shifts.
I also moved out to live with my boyfriend at the time. Then came a very stressful year, and as stress is a trigger for this illness, it all came tumbling down again. After the break up I moved back home with my parents and struggled to look after myself. After my previous experience with DWP I signed on for JSA rather than trying to get Incapacity Benefit, as I thought it wasn't worth the fight!
After about 6 months I finally got myself a job with an agency as a temp. I did the job for 6 months, full time and didn't take any holiday - my first big mistake! - and was then taken on as permanent staff. Almost as soon as I was made permanent, I went off sick, because I was completely burnt out. I managed to last 18 months, with various days off sick before I burnt out completely and had the biggest crash of my life.
I am still off sick, it has been nearly 2 years since I first went off sick with a migraine, with new symptoms arriving on a weekly or monthly basis. I have spent the last 2 years mostly in bed, in a lot of pain, with severe problems with concentration, memory and headaches. I fought to be referred to the local CFS/ME clinic, which I didn't know even existed until it was mentioned to my Dad when they thought he had ME as well. Eventually I was referred and had a course of CBT. This left me able to do a lot less than I could do before I was referred, because the first thing I was told to do was to reduce my activity completely. I have not managed to increase my activity from that point. After the CBT I saw the consultant for a whopping 7 minutes in which she asked me if I wanted to go back to work. I responded "That's my main aim". A few weeks after this I received a copy of a letter sent to my GP stating that I was ready to go back to work. I still have no idea how she came to the conclusion that a person who is unable to shower because of the amount of time spent standing up is able to go back to work! I sent a letter back and got no response.
I then got an appointment through to see the "occupational therapist". I have never in my life met such a rude person. She was very negative towards me, and would make snippy comments about every question I answered. Even if I was doing something right, her response was negative: "That's not too bad!". In the first session she said to me "I think we need to work out why you won't make changes so you can get better, are you just enjoying throwing a sickie?" - I still can't believe that someone who is supposed to help you get better would say something like that! I saw her three times and cried during two of them. The last session made me snap, and I yelled at her...something I'm not proud of, but it did make me feel a lot better! We agreed that there was nothing the clinic could do for me as I needed to get my pain levels under control to be able to do any of the things they were recommending.
So back to the GP, and after 14 years of this illness, I have finally found a GP who is willing to try and get my symptoms under control! He has also suggested that pain I am suffering sounds a lot like Fibro, and having read up on it a bit, I think I agree with him! We have been trying since November to improve my symptoms using medications, and have not been very successful so far, as most medications cause some nasty side effects! I am currently taking Amitriptyline and Pregabalin to try and help with the pain. The problem is that they both cause sleepiness, so I feel a bit like a zombie at the moment.
I am currently in the process of being assessed for Employment and Support Allowance. You are supposed to be assessed within 13 weeks of your initial claim...I applied in January 2013, and have just had my medical assessment on 7th May 2014. Apparently the decision could take weeks or it could take months. Judging by how they've dealt with my claim so far, I'm going with months! Also, judging by other ME sufferers experiences, I'm fully expecting to have to appeal the decision, which is stress that this body just doesn't need!
I have recently had to make the decision to get a mobility scooter at the age of 25 because without it, I just don't leave the house. Having the scooter means I can walk my dog again, something I have been unable to do for a while now, without causing another huge crash. Having the scooter also means I get to deal with the comments of judgmental people. I have no idea why they think they have a right to call me lazy, when I have never met them before, and they know nothing about me. Perhaps they think it's a really funny joke, but I just wish they would think for two seconds before they open their mouths. What 25 year old in their right mind would use a mobility scooter unless it was actually necessary!?!?! It takes me a lot of guts to get on that scooter and go out into the judgmental world, and I have to work myself up to be able to do it each time.
I am just so glad that I have found quilting, as it is a hobby that I can do in tiny bits, and end up with something lovely at the end! Some days, the thought of sewing is just too much, but I can sit with a notepad and create plans for future quilts.
So, there's a little insight into what life is like right now, and how it has led up to this point.
If you want to donate to help fund the UK Rituximab Trial for CFS/ME sufferers the information is here:
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