Life with ME/CFS

I haven’t written much about what ME/CFS has been like for me.  I meant to write it as one of my first posts.  I described My crash and what life was like before the crash, but I  then got straight into writing about food and haven’t written about what life was like after the crash.

I’ve thought about writing this post for a long time, but I know I’ve been avoiding it. Hopefully it is a sign of my confidence in my recovery that I am writing this now.  I am sharing this information because I know there are people who will say that because I’ve recovered I didn’t really have ME/CFS.  Let me tell you – I did.  Not only do I have an official diagnosis.; meeting the CDC criteria (scoring on 7 of the 8 symptoms), but also meeting the more stringent Canada Working Case Definition, but my life was turned upside down and it has taken a lot of effort and time to recover.

Here’s a snapshot of what daily life was like for months and months and months:

  • brushing my hair made my arm ache and fatigued me.  On bad days I had to get someone else to do it for me.
  • Washing my hair, even lying down in the bath would leave me drained for the rest of the day
  • I have done the school run in my PJs on numerous occasions (I bought black PJs so they would look like trousers) because I did not have the energy to get dressed and get my kids to school.  My husband used to get them ready for school, get my electric bike out of the garage and near the front door and I would ride (under electric power) to school, home again and then rest.
  • There were also plenty of days when I couldn’t manage the school run at all and had to rely on my husband or friends to take/fetch the kids.
  • I couldn’t dress myself all in one go.  I had to put on a garment then lie down and recover before I put the next one on.
  • I needed at least 4 rests of 30-60 minutes each day just to have energy to be in the same room and speak to my family.
  • I couldn’t stand up long enough to have a shower for 18 months.
  • I used a wheelchair, mobility scooter or electric bike to get around outside the house.
  • I couldn’t follow a recipe due to my brain fog.
  • I found socialising exhausting, even with close friends and family.
  • I would often lie on my sofa feeling hungry or thirsty, but not have the energy to get up and get myself food or drink.
  • I couldn’t read a book for over 9 months, and then gradually I started to be able to read for short periods.
  • I couldn’t watch a film in one sitting, I would need a rest (or sometimes 2) in the middle.
  • I couldn’t take in information – e.g. trying to read the instructions and apply for a school bus pass for my son was impossible.
  • Sitting or standing made me feel dizzy and lightheaded.  I had to spend most of my time lying down.
  • Hours would pass in my cloud of brain fog.  I can remember someone telling me they would be bored sitting at home all day.  My response: “I’m too ill to be bored.”
  • My sleep was disrupted.  Sometimes I would get to sleep OK, but wake up really early, sometimes I wouldn’t get to sleep until the early hours, and sometimes I would wake up in the middle of the night.

Hopefully these bullet points give you a snap shot of how I was affected.  It’s so hard to describe this illness, because it affects all your bodily systems and the symptoms are so varied.  But if you’re going through it yourself at the moment then you will probably see some similarities.

Today my life is very different to this.  If you are reading this and identifying with it, then please know that it doesn’t have to be like this forever.  Things can improve, and every small improvement in your physical and mental stamina brings about massive improvements in the quality of your life, as you are able to spend more time with the people you care about and get out and about doing what you love.

Remember: “Things Get Better” Katie Piper



8 responses to “Life with ME/CFS

  1. Having lived just a little of it with you, I can vouch that you definitely had ME.

    This post made me shudder at the memory of it all. I vividly remember a shower being a cause for huge celebration.

    • Thanks Louise. It was great to see pictures of you walking in the mountains. Well done you, because I know what a long way you’ve come too.

  2. Did you do anything special to resolve your sleep. I’ve dealt with ME with many of these symptoms some November of ‘1991. I really feel there are micro arousals that disturb my sleep. I wake up early nearly every day.

    If I could solve that my life would change.

  3. Thanks! I’ve been researching the adrenal fatigue angle. I have a real feeling that that is the issue. Though my doctor poo-poos it. I really don’t have any issue falling asleep. I weened myself off clonazapam earlier in the year and feel like I’m more in touch with the cause. I feel this sort of weird shaking when I feel awful. Not pronounced enough to call it a tremor. So fine that I can refer to it as a vibration. I can imagine that this would impair and interfere with restful sleep. I’m in Canada. I hope to find a doctor to help out with this angle. There HAS to be a solution. I don’t want to leave this earth never having solved this or know what the issue was.

  4. Sarah, we are fellow SANE travellers. I am Jonathan’s feet on the ground in the UK. We regularly have contact. I have even more contact with Carrie Brown. SANE eating saved me on a number of levels, I had amazing success, almost 3 1/2 stone and TV/Webcast with JB, after which he co-opted me onto his team.

    • Hi Dr Mike, I knew you were a SANE fan, but I didn’t realise you were an official team member. I’ve not followed a 100% SANE diet (my post on sugar gives the game away on that), but it is a really helpful way to look at food and make informed decisions, and I thought it would be helpful for people trying to lose weight and improve health. It’s a shame that the SANE brand focuses on weight loss – I understand that’s what gets most people’s attention, but people like Dr Terry Wahls, Dr Myhill and others make similar dietary recommendations to improve health.

      • We don’t really focus on weight loss, it is a by product of SANE eating. Jonathan’s emphasis is on ‘hormonal healing’ rather than on the quest to lose weight which, usually is associated with yoyo dieting. SANEity is relative, to what aims and goals are. What suits one person is untenable for another, some SANEity is better than none. Overall health is the raison d’étre, the rest tends to follow. One of my Samaritan colleagues, after my telling him about SANE eating , has lost 30 kg and says he has never eaten as much in his life……horses for courses. If it works long term, doesn’t involve pills, lotions and potions or huge financial outlay…’s all good. Your blog is good…..keep blogging!

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