Invisible Illness Week was over a long time ago, and I totally missed it due to not being aware of it at all.
But that’s no reason to miss out on an exciting MEME.
1. The illness I live with is: I have fibromyalgia, along with a rather severe case of Graves’ Disease which has not gone into remission despite medication. I also have a mental illness which has not yet been formally diagnosed by my current psychiatrist, although my record notes major depression with bipolar symptoms, and an adjustment disorder on top of that. Also psoriasis–although this might actually be dyshidrotic eczema, I can’t be bothered to see yet another specialist to confirm this.
2. I was diagnosed with it in the year: 2007 for the psoriasis, although that was done by a GP. 2008 for the Graves’ Disease, 2009 for the fibromyalgia, and I really have no idea about the mental illness as this is the first time I’ve sought out and stuck with treatment for it.
3. But I had symptoms since: 2000 or thereabouts for the mental stuff, and 2006 for the Graves’ Disease. Reading back over journal entries from that time is a bizarre experience because all the symptoms are so clear. The dizzy spells, the inability to walk more than a few metres without dizziness and needing to sit down, the swollen legs and knee problems, the heat intolerance, the total apathy about everything (including my civil partnership, which horrifies me now).
That was also when the unpleasant skin condition kicked in and covered both my hands and feet with tiny weeping vesicles and red, flaky skin. I wore socks all the time to hide my feet, and hid my hands under long sleeves. It did a number on my fingernails, as well. I don’t want to go into the impact that had on my self-confidence and personal life, but let’s just say some things never really recovered.
And February 2009 was when the fibromyalgia first flared up, although at the time I was paranoid about lupus.
4. The biggest adjustment I’ve had to make is: coming to terms with what ‘incurable’ and ‘chronic’ actually mean. I haven’t managed that yet. I’m not ok with having to work part-time. I’m also not okay with the thought of being on medication for life. But I will be okay with this in time. Acceptance is a work-in-progress, I guess.
5. Most people assume: That I’m perfectly healthy. I looked sick back in 2006–the photos from that time are horrific. I’ve put on a lot of weight since then so don’t look quite so much like a bug-eyed corpse.
6. The hardest part about mornings are: Getting out of bed and getting to work. The fibromyalgia causes bad morning stiffness, especially in my hands and ankles, and it takes about 2 hours to ease into my body for the day. Sometimes the train journey to work triggers muscle spasms, headaches, and sensory overload, so by the time I actually limp into work I just want to turn around and go back to bed.
7. My favorite medical TV show is: I don’t actually watch any. I was never particularly hooked on House, and I’ve never seen Grey’s Anatomy. I did used to watch Casualty with my mum, though.
8. A gadget I couldn’t live without is: the wheat-filled heat bags that Raph made for me. The collapsible walking stick that fits in my watermelon bag when I don’t need to use it. Bandages to take the pressure off my joints from time to time.
9. The hardest part about nights are: Getting to sleep. I have a big pink body-length pillow that I curl around, which helps with my knee, ankle and hip problems. My anxiety can be pretty bad in the night as well.
10. Each day I take __ pills & vitamins. (No comments, please) It varies, but I don’t actually take that many pills any more. When I was first diagnosed with GD, I was on nine pills a day (100mg of PTU 3 times a day, and 3 beta-blockers to bring my blood pressure down). Now I’m on 50mg of PTU 3 times a day, and don’t need the beta-blockers any more. I do take 50mg of Pristiq in the mornings (it used to be amitriptyline, but that really isn’t safe for me). I also take Valium and sometimes Seroquel as needed. The Valium is rubbish for anxiety, but it helps with my jaw and facial pain because it’s a mild muscle relaxant. I also take OTC and prescription painkillers as needed, but I save the prescription painkillers for breakthrough pain. Sometimes even 60mg of codeine isn’t quite enough, though. Oh well.
11. Regarding alternative treatments I: should really make an appointment for my hydrotherapy instead of being a lazy cow. I’m not actually on anything for fibro other than painkillers at the moment due to psychiatric difficulties, and I have high hopes for hydrotherapy. However, I don’t really hold with alternative treatments when it comes to certain kinds of mental illnesses. Yoga isn’t going to cure cancer, and I don’t think it can cure non-situational depression, either.
12. If I had to choose between an invisible illness or visible I would choose: something that wasn’t painful, and I would cut off my own foot before I chose a mental illness. That being said, I kind of have issues with the concepts of ‘invisible’ and ‘visible’ illnesses — who’s doing the looking, here? And what are they looking for?
13. Regarding working and career: Things could be better. Mental illness kind of ruined my plans back when I was a teenager, anyway. I was supposed to aim for Cambridge, but I kind of dropped out of everything instead. When I finally got to university, I only scraped through because of the Disability Support Unit–and I kick myself now for not asking for more accommodations. Things would have been very different had I known how to manage my illness back then, but I really, really didn’t have a clue.
14. People would be surprised to know: that I used to think fibromyalgia was just what lazy sods on the internet had. And now I’ve got it and can confirm IT’S TRUE! that I am deeply ashamed of my previous assumptions and am aware that karma is a bitch. Also, when I’m not actively depressed, I am quite a cheerful person. Really. This surprises me as well.
15. The hardest thing to accept about my new reality has been: That I will need medication for the rest of my life and could die if I don’t take it. Not to sound melodramatic or anything, but if you don’t treat Graves’ Disease you run the risk of dying from thyroid storm, or a stroke, or from heart failure. My blood pressure was so high for so long I sometimes worry I’ve done permanent damage to my heart. Also, the whole ‘chronic pain’ thing for fibromyalgia, and the ‘mentally unstable’ thing can be a bit overwhelming. I’ve been reading a lot of disability-related websites and activist blogs, though, and they’ve been incredibly helpful and enlightening. It’s a bit odd, coming to terms with the realisation that you are actually a bit disabled, but in a way it’s almost empowering to accept that identity. Hard, but empowering. I can’t really explain it very well.
16. Something I never thought I could do with my illness that I did was: I have no idea. I have no particular desire to climb Mount Everest, or run a marathon or anything like that. I suppose I have surprised myself by taking a call-centre job. I have phases of severe anxiety about the telephone. And then phases of being the most confident, talkative person in the world ever.
17. The commercials about my illness: I don’t own a TV and I’ve never seen a commercial about illness in any case. I know they have drug commercials in America, though. The thought of someone advertising fibromyalgia seems quite funny. Muscle spasms! Joint aches! Get it whilst it’s painful! Comes with the bonus ability to predict changes in the weather!
18. Something I really miss doing since I was diagnosed is: Pretentious walks with my camera, and gardening. I just haven’t felt well enough (mentally or physically) to do anything for the past few months.
19. It was really hard to have to give up: I gave up smoking in 2007, just before my diagnoses started rolling in, but I did it (in part) because I knew I was sick and had done irreparable damage to my body.
20. A new hobby I have taken up since my diagnosis is: I’m actually getting some audiobooks so I don’t have to hurt my hands holding a book, or hurt my eyes AND hands using the computer to read e-books. I haven’t had anyone read me a story since I broke my forearm as a child, so it should be an interesting experience.
21. If I could have one day of feeling normal again I would: Sort out the garden. Clean the entire house from top to bottom. Have some ~quality time~ with my partner that doesn’t involve painkillers, wincing or having my limbs bandaged (and not in a kinky mummification way, you perverts).
22. My illness has taught me: That the priority seats on trains are actually there for people like me, as I can’t stand up on a rattling train for half an hour without really hurting myself. Also, FWD is a very useful website, and Amanda Palmer is really fucking annoying.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I have depression too! But I don’t want to take anti-depressants, so I just snap out of it when I’m sad by thinking positive thoughts/getting regular exercise/doing yoga!”
This pisses me off for two reasons.
The first: fuck you very much for the implication that I’m weaker than you for having to take medication. Thanks for trivialising what I go through. It’s not like I feel like a useless malingering twat who just needs to pull herself together every single day, or anything.
The second: way too many people call themselves depressed when in fact they’re just reacting to unpleasant life events. Sorry, it’s NORMAL to feel dreadful from time to time, especially when faced with life stress like bereavement, job loss, etc. And the fact that you can just ’snap out of it’ like that makes me think that maybe, just MAYBE, your depression is not particularly severe. Your experiences with situational depression are not the same as my experiences with major depression, derealisation, and occasional hallucinations.
I actually get situational depression as well, but that’s a different story.
24. But I love it when people: perform startling acts of niceness. Like the guy in the Post Office who helped me pick up all my parcels, then helped me to my feet & opened the door for me when I was struggling with my stick and general shakiness. Was nice of him not to mug me and kick me in the head.
25. My favorite motto, scripture, quote that gets me through tough times is: “Men must endure their going hence, even as their coming hither / Ripeness is all” – Oh, King Lear. Awesome play of miserable grimness. I LOVE IT. In a Stoic, gritted-teeth kind of way.
26. When someone is diagnosed I’d like to tell them: Incurable doesn’t mean untreatable. Educate yourself. Get a second opinion if you aren’t happy with your doctors. Also, REASONABLE ACCOMMODATIONS. Get HR on your side. Get the Disability Support Services onside if you are at university. Do not fuck things up the way I did.
27. Something that has surprised me about living with an illness is: How amazingly supportive my partner is, and how crucial that kind of support is for anyone ill. I mean, I didn’t expect R to ditch me or anything. But there are a lot of horror stories out there and I’m glad I lucked out in the relationship stakes.
28. The nicest thing someone did for me when I wasn’t feeling well was: My old manager erased several of my sickdays from the register. Completely. So I didn’t lose any sick time, and didn’t lose any pay. She was lovely. One of my other managers drove me home when my back started to spasm so badly I couldn’t walk. That was nice too. I miss that job.
29. I’m involved with Invisible Illness Week because: I just wanted to do a meme, sorry. Invisible Illness week happened in September, so I’m kind of behind the times here. But, MEME.
30. The fact that you read this list makes me feel: doubtful anyone actually got this far, to be honest.
And that took forever to write. I am off to have tea & toast and catch up on Burn Notice and Survivors now.
posted by jeneli.
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