My name is Sue and I live in the south-east of England. I can currently drive myself to the local supermarket to go shopping and on another day meet a friend for coffee and cake, both in the same week. I can attend all medical appointments, dentist, doctor etc. Most of my time is spent at home where I can use my laptop (and try my hand at building websites!), chat, watch TV and do some pottering about.
Some weeks I can do a bit more, some weeks I need to do less. My current routine includes four rests spaced throughout the day, 3 for 20 minutes and one for 10 minutes. Resting involves laying down in a quiet room being supported by several pillows. I do not fall asleep when I rest. I have not settled for this daily/weekly routine - I plan (hope) to be able to do more.
I had a great job working in IT for a large company. I was also very sporty and regularly played netball, squash and enjoyed cycling. I loved driving and would often go away for weekends.
ME/CFS - day one and what followed (if you are newly diagnosed, don't panic, this is my story, not yours)
On 12 February 1998 I woke up and could barely move due to overwhelming muscle weakness and heaviness, like an invisible elephant sitting on top of me. My glands (everywhere) were swollen, my throat sore and every time I moved my head I felt as though someone was kicking it. Initially I was diagnosed with a virus (later confirmed by a specialist as glandular fever-type illness). I had 6 weeks off work and then struggled back part-time, relapsed, returned to work, relapsed... (I had a very understanding employer). During this time my diagnosis moved to Post Viral Fatigue Syndrome and then some time later, ME/CFS. I finally had to stop working, or rather my body finally stopped working, in late 1999.
I remained chairbound/housebound for the next few years, then suffered from an additional mild chronic illness which impacted on the ME catastrophically. In 2008 I became bedbound for several months. I gradually improved with very careful pacing of activity and sticking very strictly to a hourly/daily/weekly routine until I was finally well enough to attend an appointment with a specialist to deal with my secondary medical condition. Once this was controlled, I began to make further improvements by still sticking to a strict routine, making increases and adjustments when I felt ready - which could be days, weeks or even months later.
Treatments tried since 1998 - some of these may work for you, this is my experience only
Homeopathy - no difference, except the effort of getting to the appointments made me worse.
Nutritional supplements - (through a qualified Nutritionist) - no obvious improvements. When I eventually stopped them, I didn't feel any worse. I still take fish oil as advised by a Neurologist.
Tai Chi - enjoyable, but no benefit. Had to stop after a few weeks as it became too much for me.
Cranial Osteopathy - exhausting, no improvement.
Physiotherapy - exhausting, any benefits were cancelled out by the effort of going to the appointment.
Vitamin B injections - no obvious benefit.
Acupuncture (at home) - I tried this for 5 years and then looked back over my Daily Diary Grid and realised that any gains I made during that time were probably not due to the treatment. I stopped.
Graded Exercise - I tried this for years (following constant medical advice) and suffered relapse after relapse. I started by walking for 1 minute every other day and tried to build it up over the weeks and months. At one point I could walk for 30 minutes for several days, but could do nothing else, but then relapsed anyway. Every combination I tried ended in a relapse. It was only when I stopped in 2008 and focused more and more on pacing, that I began to improve.
Since 2008 the most beneficial "treatment" for me, has been pacing and careful planning. The forms/charts and diaries on this website continue to help me with my management of the illness, I hope they will help you too.
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