Adrenalin: My best friend and my worst enemy.

You will never see me at my worst. Not because I’m not willing to show it to you, but because it’s impossible.

I have (several, how jammy am I?!) fluctuating conditions that cause differing levels of fatigue and pain, but no one except those so close to me we’re almost one person will see how deep those levels of pain and fatigue can go. Because the adrenalin always kicks in.

It’d be OK if I could control it, but that’s obviously not how it works. I almost never miss deadlines, even when I’m really ill – why not? Because when something is deathly urgent the adrenalin kicks in. Hurrah! I could never, ever do my job otherwise, because on an ordinary day working is such a slog. But goodness I’d like to have an even patch where I can do 2000 words a day every day, not 100 words a week then 20,000 on Day 8. And those wonderful times when you have a good day out of the blue are just everything, the world suddenly seems to be your oyster and you get so excited that maybe you *can* finish the work, write that spec project and tidy the bedroom, but nope, it’s *always* a false dawn, the adrenalin drains away and you’re back on the fatigue horse again for days to come.

Adrenalin steals from you. I know I have to rest before a social encounter, and I never, ever regret the crash I know will come after a welcome visit from family or a chat with a friend, and my work is important to me so I totally accept I may have to spend some unplanned adrenalin there – I can’t save it for fun stuff just as you can’t take a day out of the office because it’s nice and you’d prefer to be on the beach. But I hugely resent the unexpected, unimportant phone call or the ring at the doorbell that kicks in the adrenalin and gives me no choice, because I’ll suffer afterwards for nothing that benefited me in the slightest.

Having discovered ‘later in life’ that I’m autistic and have ADHD, I’ve read up on masking, and not unexpectedly realised I’ve been doing that my whole life to one degree or other. But – whether I also illness-mask solely because of that or independently – that’s a big part of the adrenalin thief too. You may have heard that a lot of chronically ill people have had terrible experiences with medical professionals and even their closest friends and family. I naturally mask and put on my best face, but my adrenalin masks my body too. At the moment, I’m suffering from pretty debilitating head pain that wakes me every night, it’s been going on for months and months. Saw a (new) doctor who sent me for an MRI, no brain tumour, woooo! But the pain’s still there. I’ve also seen my regular doctor for Ladies of a Certain Age matters, and I like him hugely, I really, really do, but I’m walking in to his office and smiling and chatting while we sort out HRT and my blood pressure is perfect and everything is OK, and now I don’t feel I can get a second opinion on this head pain (which is affecting my life hugely) because he sees adrenalin me and test-results-fine me and how is he going to accept the amount of pain and fatigue in my life after that? Doctors never seem to understand (which I say in preference to ‘believe’, because that’s taking us down another, much darker road) that I really do need a wheelchair, because the me they see at those adrenalin-filled appointments can get by for the length of said appointments without. (Admittedly even on my very best, adrenalin-overflowing days I could never walk from the carpark to the clinic if it’s more than a few yards but then people start on the ‘it’s because you’re deconditioned’ route and once more that’s a whole essay in itself.) This all goes double for disability assessments – it took me years to pluck up the courage to apply for DLA (now PIP) and the way they treat you and the amount of energy they steal from you in the process is despicable. I’ve recently been considering going down the ‘ESA with permitted work’ path, as I am really struggling with working as much as I do, but putting myself through that process *and* explaining the necessity to my doctors? It’s just too high a fence to jump.

Oh, and slight side bar: fatiguing illness plus ADHD plus autism is the most ridiculous combination you can find. Use up my entire day’s energy searching for a form that was just there a minute ago? Tick. Suddenly hyperfocus on something – eg a rant about adrenalin that’s just come into your head – and you can’t do anything else until you’ve scratched that itch even though you have SO MUCH WORK TO DO? Tick.

So I’m writing this because it’s Disability Pride month and I’m about to listen to a talk on Disability/Chronic Illness in publishing, and this might just perhaps be something you don’t know that might help you if there are people in your lives with fluctuating conditions. With me, you will never see my full illness. Your presence makes it impossible. If we’re close, you will see more of it than most, but nowhere near all of it. Even in email correspondence, even with social media posts, even with texts, you’re getting a little sprinkling of my adrenalin. (NB I don’t reply for a month? Either it’s the ADHD – totally disorganised and forgetful; the ASD – I JUST CAN’T DEAL WITH PEOPLE RIGHT NOW; or the fatigue – this doesn’t have enough urgency at this exact time to trigger that adrenalin, but when the guilt of not replying’s built up enough it will!)

Now I’m going to stop because I think this is out of my system enough to let me get on with what I really need to be doing if I can, but final note: if you’re thinking ‘oh no, is she talking about when I…?’ Nah. We’re good ? But thank you for caring enough to worry about it.