ME Forms

My name is Sue and I live in the south-east of England.

Before ME/CFS

I had a great job working in IT for a large company. I enjoyed sport and regularly played netball, squash and enjoyed cycling.

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). 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 chair bound/housebound for the next few years, then suffered from an additional mild chronic illness which impacted on the ME catastrophically. In 2008, I became bed bound for several months. I gradually improved with very careful pacing of activity and sticking very strictly to an 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 continuing to stick to a strict routine, making increases and adjustments when my body felt ready - which could be days, weeks or even months later.

Gettings things sorted in 2009

After seeing a specialist to help with a medical condition I suspected was impacting on the ME/CFS (although not related) I was gradually able to improve my lifestyle. I was extremely strict with myself in creating and sticking to a routine of careful pacing and activity. After a while I was able to drive short distances (something I hadn't done for years).

My Daily Routine in 2018

I can drive myself to the local supermarket to go shopping and on another day meet a friend for coffee and cake (some people eat carrot cake when they could have chocolate!), both in the same week. Most of my time is spent at home where I 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. I have not settled for this daily/weekly routine - I plan (hope) to be able to do more.

Improved routine in 2024

I can do more than in 2018! My resting timetable is now two 20-minute rests a day. (I did have a severe relapse in 2020, but gradually worked my way back up to where I am now.) I try not to go more than 5 hours without a formal rest period during the day, as I do notice the difference if I let this slip. I also make sure I have complete rest days every week. I still have a few weeks or a couple of months every now and then when this level of activity cannot be maintained, and I become mostly housebound for a while, but with careful planning, I do improve.

Treatments Tried Since 1998

Some of these may, or may not, work for you - this is my experience only.

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, sometimes only increasing by 15 seconds a week. At one point I could walk for 30 minutes for several consective days, but could do nothing else, and then relapsed anyway. Every combination I tried ended in a relapse. It was only when I stopped Graded Excercise in 2008 and focused more on pacing, that I began to improve.

Pacing - made a big difference, along with categorising High, Medium and Low levels of activity, and implementing a manageable routine.

Dietician – Received some very helpful advice in 2020 – it may have contributed to my recovery from a relapse.

Consultants – 2 different Neurologists (2008, 2020) – both helped me tremendously.

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/Tablets - they may have helped, certainly didn't harm.

Acupuncture (at Home) - I tried this for 5 years and then looked back over my Daily Diary Grid and realised that any gains I'd made during that time were probably not due to the treatment. I stopped.