My Top 10 tips for Managing Chronic Fatigue Syndrome and My Story

My CFS story officially started in July 2015 however I suspect it was a long time in the making. It floored me at first however after a lot of reading up on the condition and much trial and error I have found some tips that help me manage the condition better.

After a very stressful and emotional year I found myself in the summer of 2015 feeling completely worn out. I went away for a week to a cottage in Norfolk with my husband, children and in laws. I remember thinking ‘this is exactly what I need, I’ll come back feeling all better.’  The week wasn’t great weather wise so we only ventured out for half days and that left a lot of time to relax in the cottage. I had many afternoon naps and lots of early nights. However, when we got home on the Friday I didn’t feel at all refreshed. I spent the whole weekend in bed, sleeping for 18 out the 24 hours each day. By Tuesday I was due to go to work but knew I wouldn’t even manage the drive. I found myself at the doctors being issued with a two-week sick note for stress. I’d never been signed off in my life but knew I had no choice. I was sure two weeks of rest would be all it took to get me back on track. Sadly, it wasn’t.

I won’t bore you with the whole story. Basically, I ended up back at work after a few weeks and managed to struggle on until April 2016 by which point I knew something had to give so reluctantly accepted I needed more time off. I had been diagnosed by my GP with CFS In October 2015 and this was confirmed by an occupational physician in February 2016. After the diagnosis, I read a lot on the internet about the condition.

I realised CFS affected some people more severely than others, my case was mild compared to those confined to bed or a wheelchair. My greatest fear in this was and is getting worse.

So, when I took the time off in April 2016 I wanted to use it effectively. I decided to overhaul my diet and embarked on the Candida diet, I will do a separate post on this.

By July I was back at work and noticing some improvements in my health. Sadly, August and September were very emotionally challenging months for me and extremely stressful and I lost all my progress. By October I needed more time off work and I remain off now. I feel marginally better being off but I haven’t yet made back the progress I had made last year.

I intend to do the diet again, it’s just hard to imagine going through that again as it was the hardest thing I ever did. I am also having gym based physio to start to improve my fitness. Exercise is a contentious subject when it comes to CFS with some believing it helps and others believing it worsens your symptoms. I’m yet to know how it will affect me as it’s early days. But I’m too young to let my physical fitness go complexly so I must try and common sense suggests a basic level of fitness must be a good thing.

Managing my sleep helps. I try to avoid daytime naps (sometimes they are unavoidable but I fight the urge wherever possible) and I stick to a set bed time of 8.30 – 9.00 and sleep until 6.30 – 7.00 (child dependant!) Avoiding late nights isn’t always possible but I probably only have one a month at most and even then, I’m in bed usually by 10.

My main CFS symptoms include fatigue, aches and pains (mainly in my legs and arms, my hips ache the worst usually), IBS, fluctuations in temperature and a foggy head. The foggy head is hard to explain, it’s just fuzzy. Dizzy almost I guess. I also get forgetful and struggle to concentrate. Before my diagnosis and the reading I subsequently did I thought I had something wrong with my brain. I hadn’t confided in anyone but I was worried as I have never been a forgetful person, far from it in fact.

The symptoms are there to some degree every day. They are usually worst in the evening and early morning. If I overdo it, I can suffer all day for a few days after. If I follow my tips I can manage activities in the middle part of the day so long as I take breaks.

My top ten tips for managing Chronic Fatigue Syndrome (CFS):

1. Manage your sleep: Avoid day time naps and have a set bedtime.

    2. Eat well: Avoid processed food, sugar and gluten. (A work in progress for me)

    3. Exercise Lightly (a work in progress for me)

    4. Manage your activity: Don’t do heaps one day and nothing the next, equally don’t do everything in the morning. I find doing activity for say half an hour to an hour followed by a break helps me best.

    5. Don’t beat yourself up that you don’t achieve as much in life as you used to.

    6. Avoid stress and find relaxation methods that work for you.                                                           

    7. Cuddle a pillow in bed. (This one has helped my aches and   pains especially during the night)

    8. Don’t feel the need to apologise or explain yourself. Yes, you appear ok to others but you’re not and you don’t need to justify that.

    9. If you do need to have a late night or overdo it then make it for something worthwhile and keep your calendar free where possible for a few days after.

    10. Try taking a daily dose of Aloe Vera juice. Whilst this hasn’t cured me I do notice a difference when I stop taking it.

I hope you found my top ten tips for managing Chronic Fatigue Syndrome (CFS) and my story helpful. Let me know if you have any other tips?

Kelly x

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