Computer says no


Being me is exhausting.

This thought came to me earlier, and I had to laugh because it's so true and the realisation was so unexpected. The biggest paradox about chronic illness is you need a hell of a lot of energy to deal with it. Pain, fatigue, allergic reactions, insomnia and more dominate my landscape on a daily and weekly basis. Sometimes I keep a symptom diary for shits and giggles, but staring that misery in the face brings me down.

Time moves on and my old life seems like a film I once saw but can't quite remember. My 'normal' is based on over 7 years of chronic illness, where pretty much everything is shit and only the really shit stuff is particularly memorable. It's easy to forget how challenging chronic illness can be, even whilst living through it. I feels like being under siege so I don't get to count the ways things are hard because there's always something else. There is no let up and I couldn't tell if I've ever had a truly asymptomatic day in the last 7 years. Plans go by the wayside; hopes and dreams shrink like puddles on a sunny day, and I cope as best as I can and kid myself I'm doing all right. I can only tell if that's actually true in retrospect.

It's only when life throws a curve ball that I realise how small my reserve tank is. We still don't know what the issue is with my step dad, and it's stressful. I'm not just worrying about him, but my mum too, and what will happen should anything happen to him. He and my mum have rallied over the last couple of days (inspiringly so) and I hope the hospital will have answers for us all soon, but I am ground down to dust. I don't have the energy for optimism, or fear, or loss. There's a possibility he may have to go to a London hospital if they can't find a reason for his predicament at the local hospital.

I left my home town when I was 19, and what seemed a good idea when I was young and my parents were virtually whipper-snappers too doesn't seem such a good idea 20 years later. They were the age I am now when I left, give or take a year or two. I should be there for family crises, and I'm not. I'm 60 or so miles away, with chronic illness baggage and no transport outside of the Mr's chauffeur service. And it weighs on me.

I've been trying to take my mind off worrying by keeping busy, and I held myself together extra tightly, lest everything pour out of me. And for a while it worked, and then I couldn't find the end of the roll of sellotape to wrap a parcel, and I pitched the tape across the room hard enough to wince when it hit the double glazing. I realised stress will leak out no matter how tightly you hold yourself, and maybe more so the harder you try to keep it together. Maybe it's better to admit you're a paper bag rather than an oil drum and expect it to come out, even encourage it to. I'm working on that.

I'm tired, so tired. And sad, because I don't like being reminded how one puff of air brings this house of cards down to the ground. And that's what illness or disability brings you down to. You're one fuck up, one mishap, one misfortune away from falling to bits at all times.

Do people see past the smiles and the selfies, to the truth of me? Do I even want them to? Is it better to be thought of as a happy, well person who's occasionally blighted by ill health, or to feel the pity of being an 'out' permanently unwell person with a litany of problems? (Which I rarely choose to reveal because the truth is ugly and boring.)

Right now computer says no except for vital functions only. Backing up data. System shutting down in 3, 2, 1.

Blogging might be a bit hit and miss as I try to get back on an even keel. 

What's your favourite way to de-stress? Thanks for reading, and be kind to yourselves. xoxo

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