1.The illness I live with is: Mainly Still’s Disease, but I also have Gastritis / GERD (probably from too many meds over the years) and Hidradenitis Supporativa. Before Still’s Disease, my diagnosis was a similar condition called Dermatomyositis and I still get symptoms from time to time.
2. I was diagnosed with it in the year: 1997 at the age of 15.
3. But I had symptoms since: I was 3 years old. I was treated by a Paediatric Rheumatologist for Reactive Arthritis, but in hindsight my symptoms definitely matched Still’s Disease. I went into some sort of remission between the age of 7 and 14, although I still experienced a lot of pain.
4. The biggest adjustment I’ve had to make is: To accept that I have limitations and that even if things aren’t impossible, they will probably take longer and be harder to achieve. I have to constantly adjust my dreams and expectations to fit in with the Still’s and my life doesn’t always go how I want it to. I can’t take anything for granted; even getting out of bed in the morning isn’t a sure thing these days
5. Most people assume: I worry that people assume that I exaggerate my symptoms and enjoy the attention that comes with being sick and/or wallowing in my own misery. That maybe they think it’s just laziness or feeling a bit low and if I tried harder I could make myself feel better. A lot of people compare their tiredness / aches and pains to what I go through, which can feel patronising too. Pain and fatigue are so difficult for other people to understand.
6. The hardest part about mornings is: Trying to sit up in bed, I tend to seize up when lying flat and find it hard to get upright. Once I’m propped up I can start to loosen up the stiff muscles and joints but it can take a while.
7. My favorite medical TV show is: I don’t really watch any, I spend too much time around hospitals and doctors as it is!
8. A gadget I couldn’t live without is: My laptop and blackberry.
9. The hardest part about nights is: Trying to get comfortable and turning over.
10. Each day I take __ pills & vitamins. 30+ tablets throughout the day (that includes multiples), plus a multivitamin.
11. Regarding alternative treatments I: Would like to try more. I don’t think they can cure the illness itself but can help an individual to cope with it better through relaxation, strength of mind etc. I’ve tried Reiki and did find I felt recharged afterwards but I think this was mentally rather than physically. If something can be enjoyable as well as relaxing, I’m sure we must benefit from that.
12. If I had to choose between an invisible illness or visible I would choose: I’d probably choose invisible. Even though I do get frustrated that people don’t understand my illness at times, I’m still glad that I can choose who I share and explain things with, especially in those rare moments of wellness when I just wanted to get on in life.
13. Regarding working and career: I feel I could have achieved a lot if I hadn’t had to deal with all this. I did manage to work fulltime for a few years but I don’t think I will be able to do that for a while, if ever. I am trying to think of ways I can earn money at my own pace by doing something I enjoy, such as writing.
14. People would be surprised to know: Just how much my future can scare me, especially at times like these when there seems little hope of even controlling the Still’s.
15. The hardest thing to accept about my new reality has been: Recently, the hardest thing for me is that I might never have a family of my own. I always thought I’d have children but can’t see how that would be possible with all the toxic drugs I have to take, the energy it takes to raise children once they’re here and then the ongoing pressure that chronic illness puts on everyone involved. Flares are always going to happen. I’m not sure it would be fair even if it was possible.
16. Something I never thought I could do with my illness that I did was: I managed to graduate from university with a first class English Literature degree. I started three times and had numerous flares but I stuck with it and loved every minute. I’m very proud of that and have considered returning to do my MA at some point in the future.
Physically, a few years a go and during a good spell, I actually managed to get to the top of a climbing/abseiling wall. Something I’d always wanted to try. I guess I need to hang on to these things because there might be another good spell coming one day, who knows.
17. The commercials about my illness: We don’t advertise illnesses or medication here in the UK.
18. Something I really miss doing since I was diagnosed is: Exercising, especially horse riding. Between the ages of 7-14 I was actually very active and good at sports. I’d love to just be able to get on my bike and head off on a sunny day, or take a walk without calculating how tired/sore it would make me. I’d love to give new things a go too, without being scared of hurting myself. I like being outdoors, I’m pretty adventurous in my head, I just wish my body were up to it.
19. It was really hard to have to give up: On some of my dreams. And I know you should never give up on dreams but sometimes you have to be realistic. I always wanted to travel the world and to work with overseas charities, building schools and water supplies, teaching English that sort of thing. I wanted to make a difference, not to be stuck in the house all day. I guess never say never but it seems unlikely.
20. A new hobby I have taken up since my diagnosis is: Blogging, cross-stitch, baking when I can.
21. If I could have one day of feeling normal again I would: That is a tough one. I’d love to get up early to see the sun rise then go on a bike ride or long walk, somewhere beautiful, with all my friends and take a picnic. Maybe go to the beach, have a swim in the sea and a barbeque, then as night draws in, sit by a fire chatting and laughing until the early hours and just enjoying life. Someone would be playing a guitar somewhere and singing… I don’t know who though because none of my friends do, I’ll just have to adopt someone for the cause.
22. My illness has taught me: That there is no such thing as normal and we all need to live at our own pace. To treasure the things that are really important, like friends and family. I’ve lost a lot of friends but also learnt that the few who stuck around are worth ten of the other; definitely a case of quality over quantity. That as hard as it is, you can adjust your life with each circumstance change and fallback. There is always some way to make your life worthwhile, even if at times it doesn’t feel possible you have to hang on to that thought.
23. Want to know a secret? One thing people say that gets under my skin is: I think the only person who really gets under my skin is my future Father in Law, who seems to believe if I did a bit more and pushed past all this I’d feel better; that it might all be down to feeling a bit depressed. He doesn’t understand it is physically impossible to push past any of this and that I have had to learn not to overexert myself; that I would love to be a part of that world out there; that if I could, I would.
Oh and I hate being asked every day if I’m any better. I know it can be well-meaning but I feel terrible that I can’t give a more positive answer. There is a lot of pressure behind that question.
24. But I love it when people: Do listen to what I’m actually saying when I want to talk and make an effort to understand.
25. My favorite motto, scripture, quote that gets me through tough times is: The one thing that comes to mind is ‘this too will pass’. In my experience, most things do. They might come back, but they’ll pass again.
26. When someone is diagnosed I’d like to tell them: To find a good doctor, one that you trust and who respects you as a person not just a patient. I think this has made a massive difference in my attitude towards living with Still’s Disease.
27. Something that has surprised me about living with an illness is: That I can still (for the most part) be happy and I guess it might have had some positive effects too. I don’t want to sugarcoat things but I wouldn’t be me if I hadn’t lived with Still’s.
28. The nicest thing someone did for me when I wasn’t feeling well was: So many to mention, from flowers, cards and gifts from good friends wanting to cheer me up, to romantic meals in bed cooked by my fiance… I was really touched that after such a hard year for us both, he whisked me away to Paris on my birthday and asked me to marry him, showing me that despite the pressure of coping with an illness like Still’s, he’s in it for the long run.
I’m very lucky to have such good friends but there is one in particular that puts herself out so much to try and make me feel better. I hope she knows who she is 🙂
29. I’m involved with Invisible Illness Week because: I think people are starting to become more aware of Invisible illnesses, especially amongst young people. That’s really exciting. I hope we can get Still’s Disease some recognition eventually too.
30. The fact that you read this list makes me feel: Grateful that you took the time to try and understand a bit of what my life is like. As I said earlier, jut to know that someone tries or wants to understand, means a lot. Thank you.
Have you posted your Invisible Illness Week survey yet? Send me your username/the link to your post and I’ll list it here for others to read!