Wednesday, 13 July 2011

Three years of CFS.

This was sent to me by Ian and I thought it would be great to share his experience of his life with CFS/M.E. If you want to read more about pacing visit our forum

It is just over three years since I first became ill and in that time my life has changed greatly. During the first year or so I was unaware of the impact that ME/CFS would have on my life. I had assumed that I would just get better and then life would go on as it did before.

After the immediate illness (bad Flu) had subsided and feeling so much better, my blood tests were back to normal (ESR, CRP, FBC and LF), I was advised by my doctor that I should try and get back to full fitness via a graduated exercise programme. Now, I used to be a very active person and used to running a couple of miles a day plus some weights and stretches and bends, and so that is where I was expecting to get back to. So off I set on this GET programme or my interpretation of it. I was going great guns and even said to my wife that I would now enter the London Marathon! I even managed a holiday with my grandchildren and only needed to rest once in a whole week. Well, it lasted all of a couple of months before I realised that something was not right. The distances became shorter and shorter and frequency became less and less. On returning to work in September 2008 it was clear I could no longer do the things I once did, though it was not for the lack of trying (a lot). Over the next 12 to 15 months my health and energy levels yo-yoed: Many afternoons were spent trying to recover from previous exertions and many weekends spoilt because of chronic fatigue. My mental health was suffering too and there were many times when I was really down in the dumps. The frustration of not being able to do what I used to do was dragging me down. There were huge pressures from work and family. The ‘brain fog’ associated with ME/CFS was causing me problems at work (maths teacher). I even felt pressured for not having a ‘proper illness’. Something had to give.

In May 2010 my doctor referred to a ME/CFS clinic and this is when my life turned a positive corner. I was asked to record my activity for week and return the week after that. Both the Psychologist and Occupational Therapist were shocked how much I crammed in to a week. The plan of attack was to start doing less with built in rest periods and then start a CBT course six weeks down the line. All exercising was to stop. The rest periods were 15 minutes once a day to start with and then building up to three times a day. After three weeks there was an obvious improvement. By the end of September 2010 I was resting 2 to 3 times a day for 15 minutes. The CBT helped me put a lot of things in to perspective. I can honestly say that by early October I felt positive and cured. No GET just lost of rest and PACING. Yes PACING! The hardest thing you will ever do.

For two years I felt like I was walking a tight rope that was wobbling all over the place, but now it felt steady and I had found my balance.
Getting to the end of the first term (December 2010) is always a struggle and this one was no different. From October to December there were a few ups and downs. And so it continued through the first half of 2011.

I was (am) doing so much less than I used to, but it was (is) becoming increasingly obvious that my health was (is) in decline again. The demands of my job meant that I was (am) using huge amounts of physical and mental energy. There were (are) not enough hours in the day and enough days in the week to work at the rate I was (am) working, rest and still have a happy and restful social life. Then BAM! I pick up a virus just after half-term. So where are we now?

I have been off work for the best part of six weeks. I am concerned how my absence will be viewed at work, but I guess I will have to wait until I get back to work to find out.

I think it is fair to say that I have had quite a big relapse. I have improved and continue to improve, but not at the rate I would hope. PACING has been replaced with RESTING and lots of it. Why no pacing? I have felt too weak and ill to do anything much.

There have been positives to acquiring ME/CFS. It has been liberating in some ways. It has been liberating for my wife because she has started driving again after not doing so for 20 years. It has been liberating for me too. I tend not to worry about things so much as I used to. My depression has all but gone. It is amusing (it feels a bit odd too) watching my wife digging up hard ground with a garden fork because I dare not. As from September 2011 I will be working just two days week and I will be treating it as semi-retirement.

Acquiring ME/CFS has been an education too. I have learnt that I am a human being and not a machine. I am not indestructible, and that I am replaceable as far as work is concerned. I have learnt not to fight it and accept that I may not ever back to normal. I have learnt that some peoples caring persona is in fact a very thin veneer.

Oh, and one last thing. PACING really works. Now where did I read that?


  1. Great post, Ian, but I find the fact that you differentiate between 'resting' and 'pacing' interesting. Certainly in the early stages, they're the same thing. Unless you rest to the point of no symptoms, pacing just doesn't work because activity to the point of symptoms defeats it.

  2. Fair point roger. I really have been feeling too ill in recent weeks to think that I am pacing, but in reality I suppose I must be. By resting I must be pacing perhaps. I'm just doing more of the former rather than the latter. LOL