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4 February 2016

A Dip and a Flare

My Twitter followers will know that I've been having another CFS flare this week {CFS for those of you who don't know stands for chronic fatigue syndrome - I wrote a post all about it here}. As usual, it's flippin' annoying.

The last time I had a dip like this was back in the summer, and I spent a week lying on my sofa watching boxsets and feeling sorry for myself. Doesn't sound so bad, does it? Well no, but add to that the muscle aches, the overwhelming sense of exhaustion like you've just run four marathons back to back, and the low mood which tends to accompany these symptoms, and you end up feeling quite rubbish.

This time around, I've tried to look after myself a bit better. Self-care, I think they call it. I realised at the end of last week that I was starting to feel unwell, so I have tried to take it a bit easier than normal - hard to do when you're constantly on the go!

When you search Google for ways to manage a CFS flare, I feel like you hit a dead end pretty quickly. There's advice about resting, as you'd expect, and, oddly, specific advice about avoiding supermarket queues (errrr, OK, thanks for that) - but for a young woman in her twenties, who wants to be up and about again as soon as possible, and let this nasty condition affect her life to a minimum, there are not that many helpful words.

Over the last few days, I have thought carefully about how I think a flare should be managed. By sharing this on my blog, I hope I can help other like-minded individuals to deal with their CFS flare ups and get back on track - but I'm also doing this for me! I find writing to be very therapeutic, and I hope my own words will be useful to me in the future.

{Disclaimer - This post involves me being brutally honest about how I feel with my CFS. I am not in any way suggesting that other people with this condition should feel the same way. We're all different!}

1. Tell your friends. This was a hard one for me. If you read my previous post about CFS, you'll know already that I don't like telling people about my condition as, ashamedly, I am too embarrassed to talk about it. But this week I had to be honest with my friends; I had to cancel plans with a couple of them at the last minute, telling them that I was simply too tired and would be having an early night instead. But you know what? They were amazing. Whilst one offered to do my food shopping and cook me dinner, the other set about rescheduling commitments that I haven't been able to make this week. Being honest with them has left me feeling so much more supported. 

2. Take regular rest breaks. I have been working at this for the last few days, experimenting with the best ways in which to improve my fatigue symptoms. Whilst I started the week taking long breaks of about three hours, and then trying to do work for a few after, I think taking more regular, shorter breaks is a better way of tackling it. But it's important to see what works for you personally.

3. Don't eat too much junk food... I am so guilty of this. If I'm lying in bed watching my Desperate Housewives boxsets, of course I'm going to devour a pack of chocolate digestives like there's no tomorrow. But then afterwards, not only do I feel queasy, but I find it adds to my feelings of guilt that I already have from lying in bed all day. 

4. Don't sleep too much! So you're tired... Have a sleep then? NO. This is one of the things I often explain early on to people who don't know much about CFS; the point of this condition is that your sleep is unrefreshing. I could sleep for seven hours, ten hours or fifteen hours during a dip, and it would make no difference to my fatigue. Last night I slept from 11.30pm until 12pm today. I know, I know, quite an impressive amount of sleep - and it didn't help. I felt dreadful afterwards, guilty, and had a headache from being in bed so long. Keep your sleeps to eight/nine hours max, and avoid napping in the day if you can.

5. Get some good books and DVDs.  If you're going to be taking regular rest breaks {which you should be during these flares}, make sure you have some nice stuff to fill them with! As well as reading and watching TV, I enjoy updating my Pinterest boards, catching up on messages from friends and having bubble baths. Every cloud has a silver lining - this is chronic fatigue's!

6. Share with your family. If I could, I would write my mum's mobile number right here for you, so you can all give her a ring next time you're in a pickle. Seriously, she is the best at giving advice. She's incredible; not only is she my go-to agony aunt (or agony mum, I suppose), but her friends often visit with their problems and dilemmas for her to help with. I think she's sort of known for giving good advice. Anyway - unfortunately you can't all flock to my mum when you have a problem (sorry, really I am), but I'm sure you have parents, siblings and partners who are just as awesome at listening and working through issues with you. And even if they're not, they can help in other ways - Mr Maggie May won't mind me saying that advice isn't so much his thing, but he is the most amazing person in the world at looking after me. Running a bath, making me a hot drink, doing all the housework, making sure I have enough episodes of Friends to keep me occupied - whatever it is, he's already done it before I've thought to ask. Get your loved ones on board with looking after you. I promise you, they won't mind.

7. Things will get better. Having said he's not good at giving advice, this was actually something Mr MM said to me once during a particularly bad flare. Things will get better. You won't feel like this for the rest of your life. Your symptoms will improve with time, and you'll be back to your old self soon. I find these words so comforting; they really remind me to keep my chin up, and to focus on the positives. CFS may be crappy, but it is not going to take over my life!
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