Friday, 2 October 2009

This is not how I thought things would turn out

At 14 I was diagnosed by a hospital consultant with having chronic fatigue syndrome/M.E it was a relief at the time as I knew there was something wrong but did not know what. However at that age I had no conception of how much it would impact my life, despite the fact that shortly after the official diagnosis I had to leave mainstream education. I attended a pupil referral unit which was able to successfully guide me through taking my GCSEs and achieving the grades I knew I was capable of. My mainstream school had given up on me when my illness caused me to miss, or not be able to concentrate in lessons and had predicted that I would fail. Later I struggled with my A-levels through college yet despite taking an extra year I passed with good grades and was able to go to the university I had chosen. By now I was receiving no guidance on how to manage or cope with my chronic fatigue and I had come up against so many negative reactions from doctors that I decided to try and put it to the back of my mind and get along on my own as best I could, I tended to hide my illness as much as I could.

I had good months and bad months and was plagued by the low immunity side of the illness, often getting minor infections and health problems as well as the other symptoms. However for the first year and a half at university I was able to cope well and was still hesitant to ask for advice from doctors due to the sceptical reaction I usually received. I took a turn for the worse toward the end of my second year at university and was forced to ask for help from the doctor. However the only thing to come from this is that I was prescribed anti-depressants. I had become depressed but not for no reason. Struggling to cope with the constant tiredness and aches and pains had got me down but I did not feel I was clinically depressed. However this was all the doctor would offer me so eventually I agreed to try. Over the next 4 years I was prescribed ever increasing doses of anti-depressants with no real positive effect, it was masking the real issue that I could not function as a normal person and was unable to do the things I wished to do. My grades dropped dramatically in my final year of my BA degree as I began to lose the battle against the fatigue and my ability to cope with the stress of living with ME was at rock bottom. I was not sleeping well and was not able to sleep at nights despite all efforts such as denying myself any sleep in the day eventually my sleep pattern became hugely erratic and I became almost nocturnal. I would not make it to seminars that were in the mornings and many months were spent not eating or sleeping properly due to the illness, I awoke so tired that I wouldn’t manage to make my own breakfast.

After my BA I realised that I was not living normally yet had no clue how to help myself and the only advice I received was to stay on or try new anti-depressants I tried to press my belief that I was not clinically depressed and that I was concerned that it was the chronic fatigue causing my problems. This was usually met with no reaction or dismissed. I was recommended that cognitive behavioural therapy would help yet when I was eager to pursue this I was told by the GP that there was not even any point in being put on the waiting list as it was over a 2 year wait. This was very disheartening at the time as I was getting desperate yet could not afford private treatment as I was a student and my illness had already caused me to rely heavily on money from my parents as I could not work and study full time. I knew that I could not work full time after my BA so decided to stay on at university to study for a Masters degree. This is not an ideal reason for continuing study but I enjoyed studying and knew I had no chance of holding down a full time job. I stayed at the same university for my Masters degree and was accepted onto the course. Shortly into the course I switched to studying part time partly as I was getting worse and was not coping with the work. However I told most people who asked why I switched that I was intending to work part time whilst I studied. This was true I was eager to earn my own money I had had many brief part time jobs previously and thought I would get some basic office experience, although looking back I think I was still struggling to admit to myself and others that the ME was getting the better of me.

I got a job working as an admin assistant in one of the university offices, I worked part time 2-3 days a week yet after 3 or 4 months I began to run out of all energy and become ill more often so eventually I had to leave this job as I was often ringing in sick and not attending work. Things became steadily worse and eventually I burnt out completely both physically and mentally. I had to intermit from my degree for a year and move home to North Yorkshire with my parents. I was extremely blessed to have supportive parents and to find a good GP who immediately started me on an ME treatment programme and took my illness very seriously. It has been nearly 2 years since my return home and I have been making very very slow yet steady progress. However I am still not yet at a level where I can support myself or hold down a full time job. Things are improving but it is a slow process which if rushed could send me back to square one. My own doctors and physio therapists have advised me not to think about full time work as I am not yet healthy enough and I have also completed my dissertation for my Masters degree whilst here. However now I am an adult living with this illness I have come up against a plethora of new issues one of the main ones being financial assistance. I applied for incapacity benefit as recommended to do so by my GP however this was made incredibly difficult and caused me a great deal of stress. After three months of delay I finally was told I would be receiving a small amount of benefit which I was extremely grateful for as I worried constantly about my lack of independence and reliance on my parents for aid. I am 26 years old and do not enjoy being reliant on my parents still for money, and everything else!

However a few weeks after receiving my confirmed benefit I was sent for a very interrogatory assessment by a doctor working for the benefit department, as I expected I immediately got the impression that M.E/chronic fatigue syndrome was not taken seriously by this assessor and after a few weeks I received a letter saying I had not qualified for the benefits and that they were to be stopped. This was devastating to me as it left me feeling helpless and powerless to do anything about it. I defy anyone to believe that a 26 year old would enjoy living the life I am now living with no independence and being isolated from any social life due to the remote location of my parent’s home and having left the area in which all my friends live. The questions put to me in the assessment had no bearing at all on the illness I am suffering from. For example I was asked if I could clench my fists and bend my knees, which I can certainly do yet this has no effect on my ability to keep going for a whole day or be able to physically cope with a full working day. I was also asked if I could dress myself or prepare a meal for myself, again I am able to do this but this has no effect on my ability to maintain enough energy and mental concentration to hold down a job. I am not a lazy person and I do not enjoy my current situation I would love to be living an independent life and starting a career but I am just not able to at present. I am hopeful that in another twelve months I will be able to and am working hard to achieve this through regular doctor check ups and physio-therapy to improve my strength and stamina.

I think it is a disgrace that my benefits were stopped at a time when I was completely unable to work a full day. The assessment I received was completely dismissive of my type of illness. It has been a major set-back to me and I had to make the decision whether or not to face a lengthy and stressful appeal process. I ended up in tears many times during the initial application so I was not looking forward to going through the whole process again. People in my situation are made to feel pathetic and not taken seriously by the benefit process or the government. It may currently be a policy to get one million people off incapacity benefit but when this targets those genuinely in need who have an illness that is particularly hard to define and often displays no obvious outer signs it is disgusting. ME is debilitating and incredibly hard to live with and is made all the more difficult when met with scorn and dismissal by those who are supposed to help. My benefits were only a small amount anyway but gave me that hint of independence that I needed to feel a part of society. If it wasn’t for the kindness of my parents I fully believe I would be homeless at this point. I find it extremely disturbing that people with this illness are not offered any help in coping or managing the disease. It took years for people to acknowledge the existence of it yet it has still not been accepted as the serious and life-altering illness that it is. I feel I am lucky as some people struggle to leave their beds or homes, with the help of my current GP I am improving and am on the road to recovery after ten years of struggle yet at every turn the 'powers that be' in society seem to belittle my illness and be openly hostile to giving me any support at all. I have lost years of my life to this illness and just need a small amount of support to get my life back on track yet I am denied this. I also know I am far from being the only one in this position!

I hope that making people aware of this situation may have some effect on the way people are treated. I am desperate to achieve a normal life and support myself one day as my friends and siblings are able to. I am also desperate for some help to achieve this. Thank you for taking the time to read this and please let me know if you have any response or advice to give me.

1 comment:

  1. Thank you for being so open and honest about how you are feeling. It has helped me to read your blog - your story is very similar to mine. I was diagnosed at 14 with cfs/me and had to leave full time education. I struggled on at home, with the help of my mum and got my gcses. I tried to go back to school to get my a levels but it was too much. I am now on my way to getting better but am at that stage where rushing anything could set me back. I'm nearly 19 and have just completed a fiction writing course. A lot more positive now but I know exactly how it feels to be dependant on your parents and feel useless, especially at this stage. Have a look at my blog and get in touch if you would like :) I don't write about cfs on there, as I didn’t want to think about my illness but today has been an amazing day, I have found a lot of blogs from people feeling exactly the same as me and I might write just so I can help people. I'm so sorry if I have rambled on - my story is a lot to put in one little comment box. I hope things work out for you - stay positive hun :) Amy xx