But I would also consider myself lucky. A dear friend of mine has ME and she has been a great support to me. She got ME earlier than me and was able to join a group called AYME (Association of Young People with ME)- a UK charity that supports children and young people who have ME. Unfortunately I was past the cut off age of 26 when I got ill, so I could not join this group. However my friend was really kind and put me in touch with some of her friends from AYME and I have been able to make some great friends. I hope one day we will all be well enough to meet face to face.
So with AYME not an option I joined Facebook groups for ME sufferers and again I have made some lovely friends. Some of the groups are "open" groups which means any posts can be seen on your Facebook newsfeed, while others are "closed" which means everything remains private within the group.
I understand the benefits of both types of groups- open groups allow awareness to be spread wider due to the fact anyone can see the posts, while sometimes the closed groups allow people to vent or be a bit more personal without everyone knowing your feelings. The confusion with open and closed groups has led to people (not me) posting private things and having it appear on others newsfeeds which has caused embarrassment and upset so if you are unsure which groups to join it really is key to check the privacy setting so you know who can see what.
After my diagnosis my doctor referred me for an ME support group run in my county. I went to an information session at a local health centre first and then had to wait to attend the actual sessions.
I had to wait a while for the actual groups to start- my introduction session was in June 2013 and the groups didn't start until January 2014 after being delayed from September 2013. I was so relieved when I got a letter saying when my sessions were- I thought I had been forgotten!
The group sessions were at the same health centre I had gone to for the introduction session and took place fortnightly. I was pleased to see it was only a small group- I can get overwhelmed in larger groups. Everyone was so lovely and ranged in ages and circumstances. There were 8 sessions in total, each one with a focus.
Our first session was similar to the introduction session- a kind of What is ME? What are the sessions about? kind of session. We were given homework to do- an activity diary over a few weeks to monitor sleep, rest and activity. I quite enjoyed the colouring in!
Session 2 was about stress and therapeutic rest. The aim was to try and reduce our stress levels and to rest but not sleep in the afternoons - something we all said could be a challenge! Zzzz
Session 3 was about the importance of a good night sleep. ME is a strange illness, we can feel so exhausted and drained and fall asleep in the daytime yet our night time sleep patterns can be so erratic we can suffer from insomnia! I try to avoid sleep in the day if I can, but there have been nights where I am awake because the pain in my body is so intense. Just goes to show ME isn't just about "feeling a bit tired". We have a LOT more to deal with!
Session 4 was about Activity Management. This involved pacing, prioritizing activities and delegating where able. I found this session really useful. I can be quite stubborn and want to do everything yet my body reminds me that I'm ill and that if I do too much (or even somedays the bare minimum) it is going to give me serious payback. When I can I do a little bit of laundry but hang it up the next day. That way I'm am not pushing myself to do too much. The only thing i make sure of is that my fiance's shirts are washed for work and I'm pleased to report as yet he has never run out :-) Some days I'm pretty much sofa bound so I don't punish myself if I can't get things done. I'm also so lucky to have the support of my fiancé, our families and friends. It is so sad knowing there are people far worse off than me- I wish I could help.
Session 5 was about thoughts and trying to avoid unhelpful thought patterns - Cognative Behavioural Therapy (CBT). If you have ME it is easy to slip into these negative thoughts- it is such an isolating illness, one that totally drains and changes our life, stops us from being "us", with the added stigma of it allegedly being "all in our heads". No-one has ever said this to me personally and I'm not sure how I would actually react. I'd like to think the humorous side of me would reply "oh it's not just in my head, it's in my back, arms, legs, neck, hands, toes and even fingers." But I can't help that think I would be much more upset!
Session 6 was Graded Exercise Therapy (GET). I must admit I was slightly skeptical about this, having read lots of negative comments about it online. In my opinion if I can I will, if I can't I won't. It is all well and good being told that exercise will make me better, but in fact it actually won't. It could make me worse, much worse. I'm not really sure if this GET targets everyone with ME- I know people who are bed bound and cannot stand or sit up, let alone be expected to go for a walk etc. All I know is I have to listen to MY body and do what feels right for me.
Session 7 was a 1:1 session which felt quite strange without the comfort of the rest of the group there. It was basically a chance to chat with one of our course leaders about the course, what we had gained from it and what the next steps were. It was only a short meeting, mine was about 15 minutes. The most stressful part of it being the fact I nearly had my car smashed into on the way there. Luckily I was ok and I got to have a nice lunch with two of my friends from my old work afterwards.
And so to session 8- the last session. I felt quite sad in the lead up to this. I had really enjoyed going to the sessions and making new friends. This session was basically about looking forward to our goals and looking at how to deal with setbacks. One of my friends bought in cake which went down a treat during the break!
I was pleased I had managed to attend all the sessions, and had lots of reading material to take away with me and share with family. I am sad my group is over, but I am pleased I can keep in touch with the friends I have made. I also feel really sad that I have reached the end of the line for help. I can be re-referred but it would be the same 8 sessions. I wish there was more that could be done after these sessions, especially for the sufferers who are unable to get to these sessions in the first place.
Let's hope things can change soon.