This week it's Invisible Illness Awareness Week so thought I'd do this questionnaire. My invisible illness used to be pretty visible - I was pale, had poor posture and was losing consciousness and ending up on the floor a lot.
Now, I haven't passed out in 11 weeks - which is the longest it's been since I got ill a few years ago. I still get symptoms though, but people probably wouldn't know it. Hence the whole invisible illness thing.
So anyway - here's a little insight into that whole experience...
1. The illness I live with is:
POTS (Postural Orthostatic Tachycardia Syndrome).
2. I was diagnosed with it in the year:
3. But I had symptoms since:
2010 but looking back further I think I had some of my symptoms in childhood at times.
4. The biggest adjustment I’ve had to make is:
At my worst - adjusting to not being able to do what I wanted to do, and not being able to do much by myself. Now, learning to be patient with myself, and limit myself - as well as lots of lifestyle changes.
5. Most people assume:
That it's all about the fainting, and if I'm not fainting I'm ok. That used to be my biggest symptom - losing consciousness everyday. Now, I haven't passed out in 11 weeks and tachycardia is a lot better but I still get pain and fatigue.
6. The hardest part about mornings are:
The mornings are often worse. When my alarm goes off my heart goes mental - as I've not had any medication since the early evening before, my heart is very reactive. Not the nicest way to wake up. Then I often feel fatigued with heavy limbs, even after a good sleep.
7. My favorite medical TV show is:
Grey's Anatomy. I just love it.
8. A gadget I couldn’t live without is:
Not a gadget as such but online shopping is an absolute life saver. Doing a big grocery shop is overly exhausting and wipes me out - so this avoids that.
9. The hardest part about nights are:
If my legs are in pain then that makes it hard to sleep, as well as just being really horrible.
10. Each day I take __ pills & vitamins.
11. Regarding alternative treatments I:
Think that if it helps you - good. Personally without proper medication I wouldn't be upright or functioning at all. Ginger biscuits are good when I get nausea though if that counts!
12. If I had to choose between an invisible illness or visible I would choose:
I don't think it's fair to say that. You can't know someone else's experience of their illness. I guess there's a conflict though: I want people to not judge me, and take me as I am, but at the same time I want them to understand what I go through. It's difficult.
13. Regarding working and career:
I'm very lucky to have such a supportive manager and colleagues, and to be able to work from home when I need. Those things make a massive difference: it means I don't push myself when I shouldn't, and I also don't have the anxiety of wondering if people are judging me, or if I might lose my job.
14. People would be surprised to know:
Despite being positive, keeping going and making jokes - I do still find it hard, and it does get me down when I'm not doing well. Maybe that's not surprising, but it's not something I often admit to.
15. The hardest thing to accept about my new reality has been:
Missed experiences and loss of independence. The latter, thankfully I've now got back. It took a long time though. When you're in your early twenties you don't want to be watched all the time, to have to always have someone with you in public - watching you on the stairs or walking you to the bathroom.
16. Something I never thought I could do with my illness that I did was:
Work full time. Get a promotion. Keep smiling.
17. The commercials about my illness:
Don't exist. It really isn't something people get to hear about.
18. Something I really miss doing since I was diagnosed is:
Performing. In my last year at university I couldn't act as I was passing out so much - doing that in front of an audience wouldn't be good. I'd love to get back into that now I'm staying upright. Dancing too - used to love going out dancing or on the Wii Fit and now that would wipe me out for a week.
Also, just not having to weigh up decisions like whether to go out with friends - because it might push you over the edge and make you pass out or bring on pain and fatigue.
19. It was really hard to have to give up:
Having to quit my part-time job when I was at uni was frustrating - I missed the money and the sense of achievement. Plus it was after months of being off sick, so it felt odd. I guess also stopping drinking for a long time - but I missed that a lot less than I thought I would.
20. A new hobby I have taken up since my diagnosis is:
At university, stopping performing meant I got the chance to direct - and I absolutely loved it. Also writing - often I couldn't be on my feet much, so I appreciated the things I could do, and writing was one of those things.
21. If I could have one day of feeling normal again I would:
Luckily, I'm finally getting back to a kind of normal. One thing I'd love to do though is go to Thorpe Park. Although I'm doing better, that still would not be a smart move.
22. My illness has taught me:
That certain things are out of your control and there's not much you can do about it. To hold onto the things you enjoy and the people that care about you. To find the humour in all situations, and keep doing so when things get worse and worse - it'll keep you strong.
23. Want to know a secret? One thing people say that gets under my skin is:
"Me too." When I say I've been feeling fatigued, and someone says me too - that's frustrating. Often they're tired, or have had a bad day. There's not the same as feeling physically heavy and weary - like the feeling of having the flu. It's an ignorance rather than malice thing, but it feels undermining.
Oh and being told to "sit down" all the time when I was really unwell wasn't helpful. I know how I'm feeling and when I need to sit down.
24. But I love it when people:
Check in to see if I'm doing ok, ask genuine questions to try to understand - and respond with kindness, patience and humour.
25. My favorite motto, scripture, quote that gets me through tough times is:
"If you can't fly then run, if you can't run then walk, if you walk then crawl - but whatever you do, you have to keep moving forward" - Martin Luther King.
26. When someone is diagnosed I’d like to tell them:
Find and fight for the doctor that will fight for you - the one that will keep trying and changing things until they improve. Be honest about what you need and patient with yourself. Even if it doesn't get better physically - time will pass and you'll find ways of coping - physically and mentally.
27. Something that has surprised me about living with an illness is:
You get used to feeling pretty awful - to the point where it becomes normality, and that makes it harder to communicate to others what it's like.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Offering to bring things is always nice - even if not needed. It shows genuine caring. People just listening too, without judgement.
Oh and my old manager at Sainsburys driving me to hospital and having to hang around for hours - when I had an outpatients appointment. He hadn't even been my manager for that long. So good of him and completely unexpected.
29. I’m involved with Invisible Illness Week because:
So many people suffer (this is mental and physical health) without anyone having any idea - and it's only through talking about these things that you raise awareness, understanding and lessen stigma.
30. The fact that you read this list makes me feel:
Happy. When people want to understand it means a lot.