Confessions Of A Chronically Ill Mum #18

It’s been a while since I’ve written an insert of COACIM. I’ve been busy, trying to keep PMDD under control alongside parenting a riot of a toddler, a somewhat sulky six year old…. Summer holidays and work. So I guess you could say I’ve been ‘doing life.’ For the most part doing life has been good, the summer has been busy and full of adventure. The downside being, I’m still not (and never will be) able to do everything I want to do because of my health, both physical and mental. The limitations it has on my overall well-being might have lessened somewhat but is still profound. However, I’m so grateful, now more than ever for all of the things I can do!!

Since starting HRT I’ve noticed an increase in energy and my ability to move more freely. My joint functionality and all over flare up time is less than it was before commencing hormone replacement. PMDD episodes are shorter too (though not necessarily less intense) I won’t go into too much detail about that now, because there’ll be a separate HRT update shortly. For now, there’s so much else I want to say.

Emotionally, I’m riding the waves while trying to savour every moment we get to enjoy as a family.

My confession this week, is that I’ve realised, in recent months since adding in a few evening plans, just how much I miss dancing. I’ve had two occasions where I’ve been out and there’s been music. The first one was with Shaun, we went to Cardiff to watch The Libertines. They are one of our mutual music loves and it was a long anticipated gig. Thankfully the venue sorted us out with accessible seating and this was in an area with enough room to dance if you wanted to. Though I soon realised, I can’t. I can no longer move freely without pain. Even the ‘dancing’ I can manage, such as waving my arms in the air, causes me pain. While I may be able to walk a little further than I could before (and this is great) I still cannot remain standing for more than a few minutes, and sadly, I definitely can’t dance, at all really! When I realised this I became quite upset. Because let’s be real there’s nothing quite like being able to dance it out. (Fans of Greys anatomy will appreciate the reference) Like I said, I am trying to focus on what I can do as opposed to what I can’t, but it still irks and hurts and leaves an adverse feeling in the pit of my stomach.

The second music shindig I attended was Meatloaf inspired musical Bat Out Of Hell. The show was phenomenal, but again I couldn’t move much. As with standing, I find being seated for long periods really uncomfortable too. Driving is agony and I’m only really comfortable when I’m slowly walking or led down. This can put a real spanner in the social life of a music lover. Yesterday I spent hours nostalgically reminiscent of the bank holiday weekends I’d spend at all day music concerts and outdoor day festivals. Some of this nostalgia was not just mobility related though. I’ve been struggling with the kids in general over the last few days. As the end of my cycle closes in the misophonia creeps out and my tolerance levels reduce to almost zero. I’m snappy and so fatigued I can barely keep my eyes open. Meanwhile, both of my children are charging around like bulls in proverbial china shops, shouting at the top of their small-but-mighty lungs!

Parenting is hard. You don’t need a blog post to tell you that. What I will tell you is that it feels twice as hard when you’re operating on no sleep, struggling to move, and your brain is prisoner to the fluctuations of your own bodily hormones. I don’t want to muddy the waters because we really have had a lush summer. We’ve crammed in a lot and near crippled ourselves financially (and that was on a tight budget) but there are so many memories from this time we’ll keep. No matter how nice it’s been though, I know I’m not the only mum who can’t wait for routine and early nights to resume.

Another confession is that I’ve been feeling uneasy about using my disabled badge and sunflower lanyard. When attending The Libertines gig I had access to the disabled toilets so that I didn’t need to queue in long wait times for the loo. This was necessary because as mentioned - standing for long periods causes me a lot of pain! Despite the necessity I still felt as though I was being judged. Groups of men kept trying to get into the disabled toilets after me and even said the dreaded words ‘There’s nothing wrong with you’ to my face. It’s a confrontation that I just don’t want to be having whilst I’m more than capable of telling them to fuck off and stating my rights as a disabled person, I don’t want to. I instead want to be able to enjoy my night out with ease and not fear the need to defend myself against other people’s ignorance. 

Please remember that not all disabilities are visible. Not everyone whom is disabled will appear to be, and with risk of sounding really glum here, it could be you one day. None of us are immune to ill health and injury. You don’t even have to be kind if it really pains you to do so, you just have to mind your own business.

Forgetting your illness

Things are good, you’ve had low impacting symptoms for a while and you’re starting to remember your pre-diagnosis life. Surviving quite happily on a steady dose of painkillers and enjoying the festive fun.

Not so fast pal!

Cue a poorly child you’re responsible for nursing back to good health, a weather change, or maybe an allergic reaction to some costume jewellery. Could it maybe you’ve done a little more walking than you usually do, or a long drive? – and bang!

Hey chronic illness, long time no see.

Now there’s no need to pretend like all the above things haven’t been thoroughly enjoyable, because if it wasn’t for those things you would have been sure to shrivel up and die of sadness, but when a flare up occurs it can be completely life limiting, and that’s why it’s called an invisible illness, because you don’t see it coming.

It’s December and Christmas cheer is everywhere. You’re getting right into the spirit of it and so you should, but then you catch that cold your daughter came home from preschool last week with, and it’s downhill from here.

I wanted to write a bit about how it feels to have a ‘just a cold‘ whilst fighting a chronic illness and what catching viruses does to our already weakened immune system.

Of course at first it starts like any other common cold and you get a sniffle or a bit of a sore throat. Then the pain from your congested sinuses trigger a migraine and the onslaught of nausea that follows makes you feel weak and shaky – for days!

Once that’s passed, the aching from the flu like symptoms, makes your already weary joints feel like they’ve been battered with a hammer, every single bone in your body feels bruised and your skin is sore to the touch. The raging temperature you’ve acquired messes with your already shot internal thermostat, and you constantly flit between grabbing extra layers and peeling sweat covered ones from your limbs. After you’ve done that a few times the fatigue completely floors you, and you have to close your eyes. Which is a bit of a problem when you’re sat at your desk or the school run needs doing.

What is just a sniffle to the average Joe can disable someone with an already weakened immune system and if you see them feeling a bit sorry for themselves try and refrain from telling them to man up. You can’t see the fight they’re fighting but underneath the snot their body feels like they’re in the ring with Ali. Don’t make an assumption that because people look well means they aren’t battling, they may well be trying harder to conceal it.

It’s so important to pace yourself when you suffer from a chronic condition but it’s also really difficult when you’re feeling well to remember to do this, and not get down about missing out on fun stuff. Suffice to say I didn’t pace myself all too well this time around and now I’m paying for it.

I’ve tried really hard to fight through the tougher days lately too, and I’ve done so with not much back lash, however the start of this flare up is swiftly reminding me that actually I need to slow down. So this is my reminder to you, be kinder to yourself and anyone you know who has an invisible illness – the winter struggle is real for us all, but it’s even harder for them.