This blog is going to address how newly diagnosed M.E sufferers will not have a clue about what is about to hit them like a freight train. I was diagnosed after 3 years of tests and being given the run around by doctors. The life altering diagnosis was given to me by a locum doctor. He said ‘ You have chronic fatigue syndrome, don’t worry about it. At least you haven’t got M.E…that is sooo much worse’. I was offered no treatment or advice at that point and just sent away to deal with it myself. It didn’t occur to me that there would be support groups/charities available to offer help and advice. I simply struggled on for a few years until a GP I was seeing for another issue recommended Pacing therapy. As I keep saying over and over again, M.E/CFS has a varying degree of severity of symptoms. I am a mild sufferer.
The NICE guideline for M.E. outlines three levels of severity – mild, moderate and severe – This is the definition of mild:
People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
The definitions of moderate and severe are as follows:
People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.
Last year, on International ME Awareness day I gave a talk at the University of Portsmouth. I met a number of people I hadn’t met before. One of these people was Gill. She was a newly diagnosed sufferer who was, at that point, still able to work. We have since built a relationship through M.E. Initially, we met for coffee and Gill was picking my brains for information about M.E. Like me, she hadn’t been given much advice or guidance by her GP. She didn’t know about Pacing etc. I gave her a few bits of information that I hope she found useful. I know from that point she started to ‘learn’ stuff by following Foggy – that makes me very happy.
One activity that has been severely restricted for Gill has been watching her beloved Portsmouth FC. She goes to home games and before each game she meets up with other fans socially. On our first meeting, I told her that those football days must be incredibly draining for her. She said it was fine because her husband made sure she wasn’t stood up for long periods of time. I explained that simply being in a noisy room, talking, using your brain to hold conversations is using a lot of energy. I suggested that she might have to sacrifice the before the match socialising and just head straight to the match to save energy. I know it was something she didn’t like to hear but, if it was me in that situation, I would be wiped out throughout the game and unable to enjoy what was going on around me. I believe that, as I did years before, Gill believed she could push herself through any discomfort and just deal with the consequences later. She has an incredibly supportive husband and I’m sure they have now worked out a way for Gill to enjoy her football and take care of herself at the same time.
I regularly email Foggy Followers that have had a connection with my campaigning. When I emailed Gill recently to check on her wellbeing this is the reply I got.
Thanks for email. Sorry to hear you’re stilling fighting the Labyrinthitis. I do think of you, and catch some of your Facebook entries but unfortunately I’ve continued to go downhill somewhat. I’ve not got back to work (since Oct 15) and now it looks like retirement on ill health grounds. I’ve gone down to half pay so hoping it can be sorted before wage stops altogether……I can’t believe it was a year ago that I attended your ME talk at the University. I could never have envisioned how I would deteriorate. I think that’s happened because it took so long to diagnose and I fought to keep going for so long.
I feel her email demonstrates how M.E ebbs and flows. It is impossible to know how your body is going to feel from one day, month, year to the next. Gill is now receiving guidance from a M.E/CFS support service so hopefully will be able to try new ways to ‘manage’ her symptoms.
Other Followers that I have built relationships with have improved dramatically since Foggy began. I am always thrilled when I hear from previously housebound sufferers that have started to occasionally meet friends for coffee or *gasp* gone shopping to buy…shoes! Let me stress, this isn’t because of treatment they have received from doctors. This is because they have managed their symptoms, rested, done mindfulness and restricted their lives in such a way that their body had time to recharge and slightly recover. They have not taken a magic pill that has made their symptoms better. That pill does not exist.