This meme is from Invisible Illness Awareness Week (September 11-18th) , – 30 things about my invisible illness you might not know - but I slightly failed at timing on it. It might seem odd to put it here, but my main purpose is to raise awareness and so it’s best to put it in the place with the most traffic! Feel free to skip this entry if you’re only here for the pretty pictures of girls in their knickers, and I promise not to be offended.
1. The illness I live with is: M.E/CF.S.
I prefer the term M.E as it covers a fuller extent of my symptoms; not just the perpetual exhaustion but also the brain fog, migraines, not being able to maintain an even temperature, clumsiness, all sorts of odd stuff!
I also live with chronic (permanent, perpetual) pain, some of it M.E-related, some of it auto-immune, and a few other random health problems like Von Willenbrands, most of which wouldn’t be so problematic if the M.E didn’t aggravate them or have competing needs with them! I’ve currently also got psoriasis on my face, which is both novel and unpleasant and like, so not Fashion Week, dahling.
2. I was diagnosed with it in the year:
Pain since 2004, and M.E since 2005. I had to go and look this up!
3. But I had symptoms since:
I had a couple of episodes of post viral problems in my life, but nothing major really. My mum’s been ill with the same thing (but a largely separate set of symptoms, M.E being a bit of a dustbin diagnosis) for most of my life.
4. The biggest adjustment I’ve had to make is:
I really can’t say, as my entire life has changed. I’m a social person by nature but I spend most of my time on my own now, plus, my long term relationship dissolved and I’ve changed careers entirely, which was a bit of a bummer given how long it takes to train and much it costs to become a counselling psychologist.
5. Most people assume:
That I have nothing wrong with me at all. I achieve this effect by only going out when I’m not a mess and wearing blusher. Why did no-one tell me about blusher when I was younger?!
Granted the photographer made some light choices here but still; blushed. Would help.
6. The hardest part about mornings are:
Well, basically it’s like I’m about 90 when I wake up. I try not to worry about what this will potentially mean if I make it that far!
7. My favourite medical TV show is:
House. He’s like every evil thought I ever had, spoken out loud. Only often funnier.
8. A gadget I couldn’t live without is:
The whole of the internet is a godsend. I have no idea what I would do without it.
9. The hardest part about nights are:
The ones where the pain is too much to sleep but not enough to justify the side effects of the painkillers that stop me from working the day after are a right sod. But floating about in Aytens silk nighties totally makes up for it ;)
10. Each day I take:
Nothing. Medication for M.E is mostly a mess, and medicating chronic pain can be a route to House-dom, which probably isn’t as entertaining if it happens to you.
11. Regarding alternative treatments I:
Do use myofascial physio. Stats geeks, I did a N=1 study, or an approximation thereof, and if it’s just a placebo effect, it’s a way better placebo effect than acupuncture or diet or normal massage. Though don’t tell J that as I never told him he was an experimental variable!
12. If I had to choose between an invisible illness or visible I would choose:
The invisible, I think. It has its problems but I’m surely privileged to be able to fake it when I really have to.
13. Regarding working and career:
I have more of a life outside work than I did whilst still training, but realistically most of life still gets sacrificed in the name of paying the bills. That’s M.E really, you have to choose, all the time. We did some sums and worked out that the cost of the subsequent extra physio negates the cost of letting me do any heavy lifting though, so I’ve stopped even attempting that. I have a former blacksmith and a mathematician for that stuff now instead!
14. People would be surprised to know:
I spend a significant chunk of my life unable to speak. It’s weird when you see it – usually at the stage where without makeup I look like an actually real dead zombie and have started shuffling along and randomly walking into walls, too. I’ll take a video sometime when I can bear it to be seen.
Oh, and I have really manky looking legs, bruising, scabs, all sorts.
15. The hardest thing to accept about my new reality has been:
In general, the days when I can’t wash or dress myself. Or get out of bed. Though recently its been the realisation that nowadays I worry about my safety when I’m out alone – I never used to, as for various reasons I’d had rather more training in hitting people and dealing with being hit than is entirely normal for someone of my gender persuasion in the UK.
16. Something I never thought I could do with my illness that I did was:
Went swimming. There was a stage where I never thought I’d do that again – I swam regularly and lengthily growing up (well, and arguably tried to drown my siblings. But they’re all fine about it now, honest). It takes warm water without any chlorine it in and understanding swimming partners, and though the day after I feel like there are knives opening up the front of my legs with every step I take, its still worth it sometimes.
17. The commercials about my illness:
We don’t have health commercials, but the next person who recommends a diet change as a treatment is likely to get a raspberry. And don’t even get me started on N.L.P!
18. Something I really miss doing since I was diagnosed is:
Being able to “just” do stuff. There’s no “just” about anything I do, everything gets evaluated, even whether it’s worth tackling the stairs to get to the loo, for the cost/benefit/timing, everything has a price to pay for doing it.
19. It was really hard to have to give up:
The hope of being a parent. Once babies start crawling, they’re officially faster than me!
20. A new hobby I have taken up since my diagnosis is:
Er . . . I’m a total lingerie geek now, I went out on Saturday night and spent the entire time working out what people were wearing (it was the sort of club where lingerie counts as an outfit). I don’t think I’ve developed any hobbies since being ill, really. Making crazy headdresses for photoshoots, perhaps? :)
21. If I could have one day of feeling normal again I would:
Try to learn to dance, very very quickly! Can you learn to dance in a day?
22. My illness has taught me:
Work smarter, not harder. And you don’t have to be a therapist to help people change. Sometimes you just have to be you.
23. Want to know a secret? One thing people say that gets under my skin is:
“But you don’t look ill!” Well no, that’s why I am explaining it to you. Good grief.
24. But I love it when people:
Figure out that I hate stairs, and guide me another way without making it a big issue.
25. My favourite motto, scripture, quote that gets me through tough times is:
This too will pass (or, what goes up must come down, for the physics-minded!).
26. When someone is diagnosed I’d like to tell them:
It’s normal to be sad, and it’ll be ok.
27. Something that has surprised me about living with an illness is:
Every time you think you’ve reached an equilibrium with it, something will come along and upset it!
28. The nicest thing someone did for me when I wasn’t feeling well was:
Did things for me without me having to ask. I really, really hate asking.
When Jeskat was working on a demo of how we might do product illustrations she said she suddenly realised that you can spot a sign of my issues in how little I move my legs in videos.
29. I’m involved with Invisible Illness Week because:
There’s lots of bad press about M.E and about people with disabilities at the moment in the UK. I think while I have some energy and people do seem to sometimes read things I say, I have an ethical obligation to counteract some of that for those of us that are even more ill. And it’s been 6 years . . . time to be ok with taking about it publicly, really.
30. The fact that you read this list makes me feel:
Grateful that I have a bizarrely large audience of people who are interested in more than just the knickers and the pretty girls. Seriously, Kiss Me Deadly fans and readers are by far the most inquisitive, motivated and interesting out there! I can’t do the American or Australian thing of saying that how much we love you, but you know, in a British, northern sort of way, quite fond of you really.