Introduction:

Many of you are aware that changes have been taking place in the management of ME – particularly over the last year.Adele like many of you, has embraced these changes and made some difficult choices in the process. Her story is not unique as I am sure many of you will see…

Adele's Story:

As I sat down to write this article I began to look back through my life over the last couple of years. The more I thought about it, the more I realise how much I have changed, how much I have learnt about, not only ME but myself as well, and how much better I am feeling now. I couldn’t have done any of this without the help of ME North East. This article is about my experience suffering with ME, but I hope you can gain motivation, confidence and belief that things will get better at the worst of times. This is my story....

I used to be a very active person, working hard at school, playing sport at any given opportunity and having a very busy social life as well. So as you can imagine being told I had ME was devastating for me. Returning to school as a part time student (very reluctantly) in Year 11 and unable to play any sport was so upsetting for me. Not being at school full time I began to realise that close friends I had made were drifting away from me. No one would ask me how I was feeing, or ring me up at home when I wasn’t in school for weeks at a time. I felt like my life was at a complete standstill and everyone else around me was moving on with their lives leaving me behind. As the months passed and my mock exams drew closer I was getting worse and worse. I found talking about my illness to close family so hard to do, as I knew I would upset them having to tell them how awful I felt. I used to hate to cry in front of anyone (especially my mam) and would force myself to just ‘get on with things’. I refused to drop any of my 11 GCSE subjects at school, or even contemplate getting a wheelchair as I just wanted things to be ‘normal’ again. I was in a huge battle against myself all the time and I would constantly refuse help when I needed it most. At this time I always believed I had accepted my ME, but looking back now I realise I was in denial for a long, long time about having the illness and didn’t realise how ill I actually was.

In January 2008 our whole family went on a cruise ship to the Caribbean and I can speak for all of us when I say that this couldn’t have come at a better time. The routine I had been in at home for so long now was broken and I had no school stress to worry about. I couldn’t believe how good I felt, the ‘old Adele’ was back. I believe it was this moment that made me realise that I could feel good again and not to give up! After the holiday I returned to school but slowly began to deteriorate again. This time however my attitude had changed. Realising that I could feel a little bit better like I did on holiday, made me begin to accept and fully appreciate the help of ME North East.

Through the help of Sheila and my mam I dropped two of my GCSE subjects and further reduced my timetable. I began to start the pacing recovery program which I am sure many of you have heard about. I also began to understand that I couldn’t keep bottling my emotions up, and asked Sheila if I could make an appointment with ME North East’s counsellor Lisa. By just being told its ‘okay to cry’ and ‘everything is going to be alright’ was an indescribable feeling. Lisa helped me to understand the connections between feelings, thoughts and actions and how one triggers the other one off. By knowing that I had someone to talk to who was completely separate from my family was elating. I knew I could tell her exactly how I felt, and talking about my feelings I began to understand why I felt them as well. Over a few months I went from the highest high, to the lowest low but with Lisa’s help I managed to find a happy medium. I sat my GCSE exams in the summer of 08. Sheila changed all of my exam times to an afternoon, some exams being sat at home, and even one on a Saturday! I passed them all with 5 A’s, 3 B’s and 1 C.

Through the summer ME North East ran a Relaxation session and Stress Management course over 6 weeks which my mam and I attended. Having an open mind and now accepting help with open arms paid off. I learnt so much, and was able to bring away so much useful information that I now use on a day to day basis which helps me to control my stress levels. Leaving school behind I started college in September to do my Alevels. Sheila set up a meeting with the Student Support and organised my timetable so I am in college only one full day and the rest half days, which is great for my pacing, because of this I haven’t (fingers crossed) missed one lesson yet because of my ME. I have met so many new people and have now got my social life back. I am so much happier now and feel like a much stronger person.

My advice for anyone who is struggling to cope with ME is this, welcome the help of ME North East with open arms. I would highly recommend the pacing recovery program, regulating sleep and counselling. Flicking through Somebody Help ME by Jill Moss the other day I fell upon chapter 9, DRAGS. This stands for denial, return, anger, guilt and shock. I can remember and even pin point the days I felt all of these emotions, so don’t be scared when you are feeling like this, and please, never lose hope. Self help is the first step to take. I promise, everything will be alright and things will get better in time. Stay positive and smile.

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Thanks very much Adele, I know how hard it was for you to write this account, but I know you were keen to share your experience with others and give hope..