I’ve written about my chronic illness before and this month marks one year since I was diagnosed with Ankylosing Spondylitis, an inflammatory disease that affects a lot of things. It affects my back, legs and energy levels and at the moment I’m going through some sort of hellish flare-up.
A ‘flare’ is when your chronic illness is triggered by something and gets worse; it can last for days, weeks or even months. I noticed earlier this week that my mood wasn’t great and my left hip had started to click and feel a bit odd; and within a few days my back, hips and legs were extremely painful.
I’m not on my injections at the moment so I am solely reliant on Celecoxib(daily anti-inflammatory) and paracetamol. And it’s not doing a lot – the pain just isn’t easing.
Last week I just about muddled through until Thursday when all of a sudden my back pain went to DEFCON 1 and I’ve been pretty much crippled up ever since.
Friday we’d planned to go to soft play – I’d let my friend down so many times recently because of the migraines and tummy issues I didn’t want to bail again plus the boy needed to get out and see his friend too. Walking from the house to the car was so painful, the drive unpleasant and every movement that day was off the scale pain-wise.
It’s quite hard to explain but it’s like a dull burning pain, it’s not sharp at all generally. There is no position that is pain free. The pain is always there and every time I move it gets worse. If I do too much I have to sit still for a while to get the pain back to a barely manageable level.
Walking is a whole new issue – every single step sends a searing pain through my back, hip and down my leg. It’s like my joints are rubbing on broken glass; plus they click and crunch constantly.
Friday night I was supposed to venture up to London for a blog awards event but I felt so poorly I was unable to go. It’s such an awful feeling, sitting at home in pain, seeing your friends having a fabulous time on social media.
Mentally it really fucks with my mood. To be at a point when I can’t walk, drive, perform simple household chores puts me at my lowest ebb and of course it makes me sad. The worst part for me is walking – it frightens me so much that it could get to a point where my mobility is affected.
Parenting is tough
And of course it makes looking after the boy the hardest job in the world – my husband has worked all week and weekend and I’ve been flying solo, which is challenging enough as it is without chronic pain thrown into the mix.
I’m finding I’m having to prioritise things. Mundane daily tasks like making meals, tidying up – they are virtually impossible when my pain is at this level.
Tips for coping
I try to conserve my energy where possible; for example, find meals I can rustle up in ten minutes or stick in the oven and come back to. The slow cooker is a godsend as I can just chuck everything in.
I try to space my medication out so it kicks in at the time I need to be able to do the most – I always plan a dose an hour before bedtime to see me through the bulk of the night, although I’m usually always up at 4am during a flare.
Heat is your friend – hot water bottles, heat pads, hot baths – it always helps me move a little more freely and it chills me out if nothing else.
Drink lots and eat properly – make sure you get your 5-a-day and stay hydrated, eating junk and getting dehydrated will only make you feel worse. A treat is fine of course, just make sure you are getting a balanced diet.
Remember – this too shall pass. This flare will ease off and you will feel better – try to focus on the future. It’s so easy to fall into a fetid pit of bad thoughts, especially when you are in pain all the time. Watch a feel-good film, read an inspiring book or do something that makes you happy.
Phone a friend or family member. Or message them if that’s your thing – talk to them about how you are feeling, it might help to vent a little.
Do something relaxing like listen to/watch a relaxation video on YouTube, meditate or just do whatever relaxes you.
And most importanly of all – be kind to yourself. Remind yourself that you need to take it easy and it’s okay to not be able to resume normal daily activities. Ignore the housework and concentrate on resting and feeling better.
Stressed Mum writes here about her daughter’s struggles with ME, a chronic illness that affects many and causes extreme exhaustion along with other things, please pop over and have a read.
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