Confessions Of A Chronically ill Mum #20

It’s 2am on Saturday morning, or Friday night- whatever….and I’m wide awake. I have been to sleep but I’m having awful trouble staying there. I had a significant psychological wobble earlier this evening.
After the hype around my debut newspaper article earlier in the week, followed by genuine relief at another good day in the bag for my son (who is really struggling with separation anxiety currently) at
the childminders. This wobble knocked me for six. It shouldn’t have really, because I’m at the end of my cycle, and I know what that means….

For those of you that know about my health already, I won’t need to say much – other than PMDD got it’s claws stuck into my psyche.

I’m a paranoid, angry (fuming actually – but don’t ask me why) tearful, mess of a woman, whom also told the car insurance telephone handler earlier in the day to get a new job because he had the intelligence of a
gnat. Who even am I?

I have felt physically terrified for no
reason. I wanted to lash out at other parents for breathing next to me at the harvest festival. The sound of my kids’ talking and playing made my skin hurt. Don’t even get me started on what Kaiser’s screaming is doing to my blood pressure. I have a mouth full of ulcers, limbs made of lead, period pain that feels like labour, and can’t stop itching – oh and eating!!! And all of that is ‘just’ menstrual – not to mention sitting or standing for more than 5 minutes at a time leaves me in agony, getting in and out of the car and lifting my son makes me want to cry. To add insult to injury, everything I do to relax fails, every book I attempt to read feels like
the words are sliding off the pages and flying the fuck away from me. I just can’t process life at all!

“Stop the waltzers! I prefer the certainty of a prize that comes with hook a duck”

There are so many points I want to make with this blog post. The main one is, these things, this trauma and constant carousel of feelings that come with chronic illness, don’t ever really go away. No matter how long you’ve lived with something, no matter how great the good days are, there’s a lingering trepidation of when the lights might go out again and how long it will take until, or even whether or not they’ll eventually come back on. Of course the evidence suggests they will [the lights] come back on, but it’s hard to believe when you’re run down and in pain.

It’s Saturday lunchtime now and I’m waiting patiently to be seen in rheumatology again. The combination of the constant diarising of appointments, childcare and HRT, is making me forgetful. I’m struggling to keep up with my physical therapy exercises, which I know is only going to exacerbate my pain in the long run, but that’s really the point I’m trying to make in response to all the ableist propaganda circulating at the moment – having a chronic illness is a full time job and when all of your time isn’t being taken up trying to feel better, you’re planning damage limitation for the next time you might feel shit. All of this of course on top of parenting, being a wife, friend, working part time in a regular job and so on. It’s not easy, it’s definitely not fun.

It’s Monday and Kaiser has had another awful day at the childminder’s house resulting in me in tears the same time as he was, with less than a mile in distance between. Shaun had to leave work to collect him in the end. It’s unfortunate that this coincides with the week I’d usually be on my period – which means the rage and anxiety and general feelings of overwhelm are taking hold. I’m again anticipating what the fuck I’m going to do if I have to seek alternative care for a baby that is already so anxious in the face of change. Or god forbid I have to leave my job to care for him full time when I’m barely surviving caring for myself.

Bedtime now and yet nobody sleeps. Shaun tiptoes around the house on his size tens and Ciara is up and down like a yo-yo with various complaints of insomnia. Kaiser will be awake in a minute, desperate for a cuddle.

I love being a mum but I struggle with it so much. Every month I wonder how I’ll survive and what the future looks like if and when I eventually lose my shit all together. Somehow we make it though, we adapt and make allowances and exceptions.

People say I don’t know how you do it and my reply is always I don’t have a choice. But that’s not the only suitable response: another appropriate one would be I don’t do it, we do it. Together! Because without them, there’d be no me. Forever grateful to be lucky enough to have created this wonderful family even with all of our flaws, challenges and trials combined.

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