I don’t often write about my health on here, which is strange given that it’s such a huge influence on and part of my everyday life. I suppose I don’t want to seem negative and I also genuinely love makeup and beauty, so I love writing about them. But sometimes I think I owe it to my fellow chronic-illness sufferers to give an honest picture of how my life is, living with several chronic illnesses.
Having ME and fibromyalgia is extremely hard on a day-to-day basis. As I mentioned in this post, sometimes I can’t even get out of bed. More often than not I am weak, exhausted and in pain. Sometimes it feels like I just can’t cope any longer, but of course I do – what other choice is there?!
The reason I’m writing this post is that since I have become more ill, I’ve come to a realisation that chronic illness and social occasions/events really don’t go well together! I have had ME/fibro for a while now, but ‘crashed’ on 24 December and have been much worse since then. So I have now experienced a Christmas and a birthday whilst being very unwell. I won’t dwell on Christmas too much as it’s a bit of a blur, but I wasn’t even well enough to open my own presents – my mum and husband had to do it for me!
As you may know, it was my 30th birthday on bank holiday Monday. I made a very deliberate decision this year not to make big birthday plans, in case I wasn’t up to it on the day and had to cancel. I didn’t want to put people out and change arrangements, as it always makes me feel guilty and unreliable. A lot of people asked what my plans were and wanted to do things with me. As much as I appreciated people wanting to celebrate with me, I just knew it wasn’t the right decision at this moment in time. When I can barely wash my own hair or cook meals, planning a meal or night out is the furthest thing from my mind.
As a concession (many people felt I couldn’t do nothing at all, and it did seem a little sad not to mark turning 30), I agreed to some very small-scale plans. My wonderful mum hosted a small vintage tea party at her house. She planned it deliberately so that I had nothing to do but turn up and enjoy it. She did all the planning, decorating and baking. I was looking forward to it and was really grateful to her for all her efforts.
But sadly…. I woke up on the day feeling absolutely terrible. My fatigue was awful and my mobility not so great. It took me 6 attempts to get dressed, brush my hair and cover my dark under-eye circles with some makeup. I had to keep lying down to recover between each thing I did. Shortly before setting off, I broke down in tears to my husband. I really didn’t feel well enough to be out of bed but couldn’t let people down and the thought of cancelling after all my mum’s hard work just made me feel sick. So I went ahead and set off to my mum’s. I arrived early so that I could have a lie down after travelling (only 20 minutes). Everything looked beautiful and please understand that I’m not in any way being ungrateful. I appreciate my loved ones more than I can express. I just really wish I had felt better that day and able to enjoy myself!
The tea party was fairly short and I was sitting down the whole time, apart from 10 minutes where we stood in the garden in the sun whilst people arrived. In hindsight it was stupid of me to have stood up for 10 minutes solid, as it takes a lot out of me… I suffered so badly that night for it! My legs and hips were in so much pain that I couldn’t find a single comfortable position to lie in. I didn’t get a minute of sleep the whole night, and gave in at around 7am on the Monday (my actual birthday), and stopped trying. I was in absolute agony all night – my painkillers, relaxation techniques, positive thinking etc were not working at all and at one point I just wondered, can I cope with a whole lifetime of feeling this much pain? Thankfully I chatted to a few fellow sick-girls online, whose positive words and encouragement got me through the night.
I was a little better on the Monday (god knows how after no sleep!) and managed to see some family, but crashed and went to bed early that night. Rock and roll birthday hey?
A friend with ME and fibro pointed out to me that she had noticed a lot of her ill friends having bad crashes around their birthdays – she thought perhaps the stress of feeling obliged to make plans and the extra socialising and stimulation lead to a worsening in the conditions. I can’t help but think she’s right!
Unfortunately, ME/fibro doesn’t know it’s your birthday, or Christmas, or an occasion you’ve been looking forward to. It doesn’t care if you’ve got plans or you need to go to work. It flares when it feels like it and sadly you have to accept that you just can’t make concrete plans any more. A few people have suggested that I celebrate my birthday as and when I have a day where I’m feeling a bit better. I think this is what I’ll do – I just have to work in a different way than I used to!
Sometimes being in pain almost all the time and being so fatigued, weak and unwell makes you wonder what the point is and whether you can see yourself surviving a lifetime of it… but whenever I have felt this way, I have turned my thinking around (eventually) and realised that I can still find joy, meaning and happiness in small things like a text from my mum, a hug from my husband, a card from a friend…. at times of extreme pain, it clouds what truly matters, but if anyone reading this is struggling in a similar way, please remember that there is always something worth fighting for! And who knows… one day they might find some effective treatment or a cure for us, and we can tick everything off our “when I’m better” bucket lists!
Signing off now to have a cuppa and go to bed! Thanks for reading.