Are you excited for the next few weeks or dreading it? If you suffer with a chronic condition I can guarantee you’ll be worrying about so much more than buying the right present for your uncle Dave or getting the turkey in the oven on time.
I’ve lived with CFS/ME since my teens and trust me, I’m not ‘just tired’; it’s an overwhelming, excruciating exhaustion, along with muscle/joint pain, poor memory/concentration and sleep disturbances. The struggle to keep my eyes open is no joke, my head feels like it’s full of cotton wool, it’s banging, lights hurt and all I want to do is take refuge in my bed and never leave again. And the worst thing is, no amount of sleep helps. I could sleep for twelve hours and wake up feeling like I’ve slept for a whole three minutes. It’s no fun at all.
Christmas used to be my favourite time of the year but I’m not feeling it anymore (if you want to find out why, I explained it all here) and having a chronic condition only makes things so much harder. How do I get up early after hardly any sleep the night before and get through a few days of family-time? How do I concentrate when playing board games? How do I not fall asleep in my gravy? How do I have intelligent conversations with people when I’m in agony and just want my pyjamas? How do I laugh when all I want to do is cry? How do I get through the next few weeks?
I don’t know about you but I don’t have to freak out about decorating, cooking, cleaning, or entertaining mounds of people. We’re spending Christmas Day with Ian’s family, having lunch at his sisters and then in the evening coming home. We always overdo it on Christmas but this year we’re doing things a bit differently and spending the night chilling in our pyjamas on the sofa with our pupper, Teddy.
So whilst I am out, what will I do if I’m feeling extremely exhausted?
- Wear comfy clothes
There’s absolutely nothing worse than not feeling your best and being uncomfortable. I’m not going to show up in a onesie and I’ll probably have a full face of makeup on (because that’s how I roll) but I’ll make sure I’m wearing something that I know I can relax in if I need to. Maybe even take a change of clothes if I want to look fancy for a while but cosy later. Maybe take some slippers or even pyjamas. And don’t forget your medication and to stay hydrated.
- Find a comfortable seat
Similar to comfy clothes, it’s really important to find a seat/sofa that you can sprawl on. Hard, low-backed chairs only do more damage to me, and after a few minutes I can guarantee I’d rather lie on the floor (even if I won’t ever be able to get back up) than sit on it. Sitting somewhere unpleasant only adds to the pain and thus the fatigue. Take your own cushions if you think that will help. Lumbar support cushions are a must for me.
- Be honest and pay attention to my body
If brain fog has taken over and I can’t string a sentence together, or if I’m in pain and need a bit of extra attention, I’ll tell Ian and he can help me come up with a plan. He’s usually a lot better at realising what I need, especially as I can’t think clearly.
- Go home early if I have to
If that plan involves leaving earlier than planned, so be it. Health comes first and despite wanting to stay longer, I know if I do more than I’m capable of, I’ll end up in a flare. And if I do begin to flare, it’ll only ruin Boxing Day and New Year etc.
- Take time out
I don’t have to constantly talk to someone or be doing something. I can take a moment for myself if I need it and I’ll try not to feel guilty. I always give myself a hard time but I need to recognise how helpful quiet time can be and implement it if and can I need to.
- Enjoy it
It’s not going to last forever and since I spend a lot of time on my own, it’ll be a nice change. Have fun. Make memories and take lots of photographs.