It’s coming up to Invisible Illness Week so here’s my response to the 30 things questionnaire you just clicked through to (well, if you didn’t it’s there anyway, just like the tree that fell in the forest).
1. The illness I live with is: fibromyalgia and chronic migraine. Some say chicken, some say egg, either way, it’s bodily pain, exhaustion, insomnia, anxiety and severe headaches, lots and lots of headaches.
2. I was diagnosed with it in the year: Not sure. about 8 years ago. Never sure about dates and things. I am supposed to keep a record of all sorts of things, but in reality I am too ill to manage that sort of paperwork.
3. But I had symptoms since: Probably birth. Colic is now seen as a precursor of and a kind of migraine, ‘growing pains’ are now seen as a sign of fibromyalgia. I also suffered headaches as a kid, was put to bed with an asprin and dismissed as ‘attention seeking’. If pain really got you attention, I think I’d have noticed by now, and from my pre-crash experience (about 10 years ago now) I know that there are better and more effective ways to get noticed.
4. The biggest adjustment I’ve had to make is: Having very few choices about anything – from what to eat to where I can go or what I can wear or who I can spend time with. At the moment I am struggling with the fact that I can’t, and haven’t been able to for some time, decorate my home or even put pictures up.
5. Most people assume: I’m ok, I suppose. And that nothing they can do can help and that whatever I am doing is what I want to be doing, and however I have things or do things is how I want them. I remember a visitor being surprised at how few pictures I had up. Rather than ask me why, as a formerly active visual artist and someone who has a huge collection of images in frames, I might not have them on walls, she regaled me with tales of her own decor preferences and activities.
6. The hardest part about mornings are: Mornings are the best time of the day for me but I know that all the spoons will be used up by the time I have eaten and bathed, and if I do do something, go to an appointment, do a task, then I will be paying not just the rest of that day but for several days hence. So I suppose the hardest thing about mornings is knowing that even if I feel okay for a little while it won’t be for long, and I have to get through the day somehow – and having done so I won’t be any further forward with anything.
7. My favorite medical TV show is: None. I don’t like medical shows. People may think that I am interested in ailments, I’m not. I like murders and comedies.
8. A gadget I couldn’t live without is: My heated blanket.
9. The hardest part about nights are: That if I am awake I will be in pain, and that the night will feel even more endless than the day.
10. Each day I take _approx 10 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried a lot of things. I always listen when people tell me about treatments, because sometimes there might be something that actually helps, but mostly I just feel even more misunderstood and isolated – going to appointments of any sort involves travel and probably being extra ill for several days afterwards, and alternative treatments are costly too, so unless you are going to drive me to the appointment every week and pay for it too, then probably save your breath.
12. If I had to choose between an invisible illness or visible I would choose: Visible. I’d like to have Stigmata, something nice and visual. I used to get nose bleeds a lot, and the level of sympathy was off the scale – DUDES! Nosebleeds don’t actually hurt!
13. Regarding working and career: I miss working, and I miss financial independence. I miss creating something in the world. I miss the social contact. I miss being an expert at something. I miss having a vocation, an actual reason to get out of bed in the morning.
14. People would be surprised to know: How angry and upset I get – I feel I daren’t express myself a lot of the time, I have few enough friends as it is without alienating them. I know it’s not anyone’s fault that I am unwell, but I do feel like I have to be on my best behaviour all the time – I even try to be bright and breezy on the internet for fear of bumming people out. I only write as much misery as I dare, but I feel much more. And that sense of having to be well behaved is a bit of a burden. Sometimes I do write ‘I feel crap’ on facebook, and I love it that people ‘like’ or say ‘aw’ – it’s amazing how much that helps.
15. The hardest thing to accept about my new reality has been: How little it really matters, and how little there is I can do about it.
16. Something I never thought I could do with my illness that I did was: be of any use to anyone else ever. I love it when I can help someone with something. Especially when it involves something I know or am good at and can still do (not much, admittedly).
17. The commercials about my illness: don’t exist in the UK, thankfully. I remember saying to a psychiatrist ‘will I be able to do that yoga pose if I take that drug’ – the ad was on the side of a tissue box. What rot. I imagine drug commercials are a lot like sanitary products ads, full of people who are busy doing cartwheels on the beach. I’m glad I am spared seeing them. Mind you, the anger might be quite aerobic.
18. Something I really miss doing since I was diagnosed is: Making plans that have any chance of coming to fruition.
19. It was really hard to have to give up: yoga.
20. A new hobby I have taken up since my diagnosis is: blogging. It can be done from bed, it can be any length, and it needn’t be done at all. No one is let down if I don’t blog for weeks. It doesn’t take materials or much in the way of physical action, all I have to be well enough for to do it is to handle the screen time and string a sentence together, and even then I don’t have to do it all at once.
21. If I could have one day of feeling normal again I would: go swimming.
22. My illness has taught me: compassion.
23. Want to know a secret? One thing people say that gets under my skin is: “Why don’t you get a taxi?” I have never been a big fan of taxi rides, the converations are tiring, and even being in a car in silence with someone I don’t know is tiring. They are too expensive, and they WILL give me travel sickness. If I am not going somewhere because it’s ‘too far’ I’ve already weighed up the logistics.
24. But I love it when people: find a way to include me.
25. My favorite motto, scripture, quote that gets me through tough times is: There isn’t one. No platitude from any quarter can help. Ten and Poppet and the internet people, they help, but sayings and quotes just piss me off.
26. When someone is diagnosed I’d like to tell them: you are entitled to your feelings.
27. Something that has surprised me about living with an illness is: “I never imagined that so many days would ultimately make such a small life.”
— Franz Kafka, from “Diaries”
28. The nicest thing someone did for me when I wasn’t feeling well was: Be there. Also, it’s helpful when someone offers me something specific – when you are in pain and maybe your brain isn’t functioning the last thing you want to do is guess what someone is prepared to do for you. Ask “Do you want a cheese sandwich” not “Is there anything I can do for you?” because there is, but I’ll be damned if I can think what it might be, right now even if I am lying here starving.
29. I’m involved with Invisible Illness Week because: Honestly, if I don’t do it no one else is going to do it for me. I am constantly supporting causes, even if it’s only ‘clicktivism’. What is horrible is that even high profile illnesses and disabilities don’t get the kind of support or research they need. Watching Pink Ribbon Inc shows how big companies and individuals spend so much money and effort fundraising without actually helping anyone.
If a cause like that fails so resolutely, what chance is there for mine?
30. The fact that you read this list makes me feel: perhaps all is not lost. If you did get this far, thank you so much for caring to. I feel like I should apologize for having wasted ten minutes of your time. If you did make it this far, here’s a little tumblr for your trouble – THANK YOU! elaine4queen.tumblr.com/day/2013/8/25