Living with Chronic Fatigue Syndrome is pretty rubbish. I haven’t talked about it much on my blog for a while, because in all honestly I was over it. As long as I managed my time well and avoided germs – we were all good. There’s always moments when I’ve been fighting off a bug where I get caught off guard, but probably since December when I began to have some issues with reflux, the symptoms of CFS have been slowly creeping back.
Last month I had planned to go down to Dunbar to watch a friend from Christian Surfers perform at a gig with Harbottle & Jonas. I had my tickets weeks before, was all ready to go down, my friend even invited me round for tea before the gig. But as the afternoon wore on I got more and more fatigued, to the point where my joints seized up and I couldn’t keep my eyes open. I ended up having to bail, knowing that it wouldn’t be safe for me to drive and just had to give in to sleep.
I was so grateful last weekend that my friends understood when I said I didn’t want to celebrate my birthday. They gave me the best gift ever – a place to come and chill. We had dinner, chatted, had a (for me) early night, a lazy breakfast, did a beach clean in the rain and wind, came back and all of us ended up taking turns to have showers, got into pyjamas, watched the telly (something I rarely do now!) and I ended up staying for a second night after getting pinned down by their dog who discovered that my long nails make for excellent doggy back scratches. It was such a relief to just ‘be’ and not feel like I needed to do anything or my friends feel like they had to either.
And I have to say I’ve missed their dog all week, especially this weekend as I’ve struggled. I wish I could find to words to describe what it’s like.
There are things that exist in life now that didn’t when I first got diagnosed – a horrible summer where I used to crawl to the kitchen to get food (anything cooked had to be in the oven, as I couldn’t stand at a hob), lie on the floor until it was ready and then crawl back to bed after.
- Wifi – I didn’t have internet at home until my final year at university, and even after graduating, I didn’t have it in some of the places I lived because it was a luxury I chose not to have to save money. Now, I’m so thankful for it, as I can work from a bed or comfy sofa on days when I’m struggling a bit.
- Online shopping & supermarket delivery – Though I much prefer as a single person to go to supermarket myself (because my share of the freezer space is limited to one shelf, and I need to get decent dates on things so I’m wasting less) on the weeks my joints are screaming at me and I can’t keep my eyes open, the supermarket bringing your weekly shop to your doorstep is worth that £1-3.
- Netflix – Has genuinely been such a comfort. Not only does it switch itself off if you fall asleep while watching, being able easily find show you’ve watched a squillion times before is lovely company when you’re stuck in bed. Often I can’t focus on a ‘new’ show or film as my brain gets foggy.
- Twitter and Instagram – This can be a blessing and curse. It can bring community to you, or it show how you’re being left out of community (I believe the kids call it FOMO). But overall, I’m glad they are there.
And things that did exist that I didn’t used to have…
- Good pyjama bottoms – Back in the day it was the David & Goliath pyjamas that kept me smiling on crummy health days. But then they went polyester (whhhyyy?) and all was lost for a while. Now I’ve discovered Fat Face pyjamas. They aren’t as ‘fun’ but they are super comfy.
- Pillows – I discovered these kind of foam pillows that give much better support than the ones I used to have. It makes so much difference.
- Blankets – Duvets have two settings – on or off – but blankets you can layer much more easily.
- Fairy lights – There’s something cheering about fairy lights. I now have fairy lights around my bed, on all my bookcases…
- Diffuser – My diffuser is something I think I’d struggle to live without now. Every night before bed I put my calming blend in. I have an energising one for when I’m working too. Electrical ones are great as they can be switched on and off easily. Mine you can set to switch itself off after 1 or 3 hours.
But something that has always been there and still remains are key friends who are incredibly understanding. I’ve lost many friends along the way due to them not getting this illness. I get it – I’m flaky and you can’t count on me to be there, so I really do understand why. It is the thing I hate the most. But there have been friends who have just simply been there without drama. The ones who text to check in. The ones who offer to shop for you. The ones who come and help you wash your hair when you can’t lift your arms to do it. The ones who come sit on a sofa and simply ‘be’ with you. The ones who drop baked goods at your front door to cheer you up. The ones who know when you have to cancel at the last minute and don’t get offended. I am so grateful for their unconditional love and kindness.
Those friends are worth more than their weight in gold.
You know who you are…and thank you x