Yesterday, after months of waiting, I went with The Dave to the adult M.E. Clinic held at our local hospital. My GP had provisionally diagnosed me with M.E. a few months back and filled in the referral forms for the M.E. clinic to gain official diagnosis.
To be honest I was pretty apprehensive because of some less than helpful past appointments with the girls at the Children’s M.E. Clinic. Thankfully I was more than pleasantly surprised. The appointment was pretty intense, many, many questions were asked and also a long detailed history. Physical examination was given and results of past blood tests scrutinized. What impressed me was the thoroughness of the history taking and checking that no stone had been left unturned regarding diagnosis. My medical practitioner will from now on in be my M.E. therapy & support contact ~ my “go to” person. She didn’t push any “psychological illness rubbish” but clearly stated it is a multi system illness affecting the whole body, nervous system and brain. She diagnosed me using the approved Canadian Diagnostic Criteria and also knew about the research work being carried out by Invest in ME. How cool is that? So far she is the first medical practitioner I have come across who follow Invest in ME and their work, let alone follow their diagnostic criteria too.
I was given the option of attending one to one meetings or group support meetings, I chose the group one (as I don’t get out much). The Dave and my therapist were pleased with my choice. It means I get to talk to people who have the illness and “get it” ~ who knows I may even make a friend or two! The group consists of 10 ME sufferers and two therapists. The sessions are from 9am to midday and are held out of the hospital environment in a local church hall, with tea and biscuits given at “break time” half way through each session. The group runs for 9 weeks and then we are on our own for 6 months before they bring us back for a reunion to discuss how we are and any improvements or decline we have experienced. However, throughout I have access to my therapist and can also have one to one in addition to group at any time. To say I am impressed is an understatement. Apparently the group is not for therapy as such but for support, sharing of information and discussions on how we can help each other and ourselves in certain situations.
I hadn’t realized quite how much I had been dreading this appointment until it was over. The immense relief that I wasn’t mad (The Dave had wondered whether I had dementia due to severe brain fog moments) and that I had understanding and support. No GET, or CBT was pushed at me, just advice regarding pacing and not overdoing it.
My “goals” are to be able to read again ~ I have books taunting me waiting to be read but not the concentration to do it, I am SO desperate to read The Shepherds Crown, Terry’s last discworld novel ~ so that is high on my list! Also, to be able to get out and have a few short walks without being cream crackered. That’s it, bloomin’ marvellous understanding of Post Exertion Malaise and having to stop before tired is so refreshing to have.
To top it all off my therapist is writing to my GP to request further testing into arthritis as she feels I am showing signs of early arthritis in my joints ~ this woman is a gem!
So, now I am pacing as best I can and resting up ready for my much anticipated short mid~week break to Dublin ~ eeek, so excited!!
So until next time (with details and photos of the Dublin trip) I bid you a great rest of the week and hope you can all do something to treat yourself each day, no matter how small that treat may be.
I saw this quote and want to share it with you, it is something I aim to achieve at some point before I die!