In the past few days, some of my fabulous fellow bloggers have been taking part in Invisible Illness Week and completing a questionnaire about their diseases. I’ve loved reading about other people’s experiences of living with chronic and invisible illness but didn’t have the time or energy to post my own questionnaire, which I know you’ll all understand. The week officially finished yesterday, so I’m late to the party, but I’m hoping there’s still some wine and a piece of dried up quiche left ;-)
30 THINGS ABOUT MY ILLNESS
1. The illness I live with is:
Ehlers-Danlos Syndrome (hypermobile type)
Mast Cell Activation Disorder
Myalgic Encephalomyelitis (M.E.)
2. I was diagnosed with it in the year:
M.E. in 1994
EDS in 2010
HIT and MCAD in 2013
3. But I had symptoms since:
Birth for EDS and MCAD.
1992 for M.E.
4. The biggest adjustment I’ve had to make is:
Learning to define myself as a human being, not as a human do-ing.
5. Most people assume:
That I will eventually get better.
6. The hardest part about mornings are:
My nervous system gymnastics as my body wakes for the day. Pins & needles in my bottom are no fun, and my heart flip flopping all over the place sets up a fight/flight reaction. I have to remind myself every day to just breathe through it, which usually helps with the nausea.
7. My favorite medical TV show is:
I don’t watch medical shows, as they’re full of caring doctors and nurses which doesn’t really match my own shitty experiences! I’m addicted to Teen Mom, shhhhh don’t tell anyone ;-)
8. A gadget I couldn’t live without is:
My laptop. I live 7 miles from the nearest shop and am often stuck in bed feeling ill, so I might starve to death without the internet and online grocery shopping. I couldn’t live without my telephone either though!
9. The hardest part about nights are:
My nervous system unwinding for the day! Again with the flippy floppy heartbeats, and a feeling in my brain like I’m falling off a tall building over and over again. Also the stillness and not having any distractions – it makes me have to face my sick body, whereas during the day I’m busy enough that I can ignore my symptoms.
10. Each day I take ? pills & vitamins
I would love to take more drugs, but because of my MCAD I am almost totally drug allergic :-( I currently take 4 teaspoons of liquid meds, plus 2 pills, daily – it’ not halfway near enough to control any of my symptoms.
11. Regarding alternative treatments I:
have tried them all and then some. 99% of them either didn’t work, or made me ten times worse. I now don’t bother with any of them but think it’s something most people have to try as part of their journey.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. Even though at times I wish the general public knew what I went through every day so they could be more helpful and empathetic, I prefer that I can pretend to be ‘normal’ and fit in. My private life is private, and I prefer not to have my health on display to the world and be asked personal and intimate questions about it by total strangers.
13. Regarding working and career:
I haven’t been in paid employment for 20 years. However, no matter how sick I’ve ever been I’ve always done volunteer work from my bed. I was so grateful for the generosity of spirit shown by volunteers of support groups etc. when I first became ill that to not share my vast experience of living with ill health with others seeking answers would be unthinkable to me. I also volunteer for AIDS orphans in Africa (no matter how hard my life is, theirs is so much harder), as well as having an adopted Orangutan in Borneo which I support financially despite being on a low income. My rescue animals, over the years, have always given me a reason to get out of bed every day. Everyone needs to have a purpose.
14. People would be surprised to know:
How lonely I am. I hide it well.
15. The hardest thing to accept about my new reality has been:
The lack of choice and options. If ever I’ve had a problem in the past I’ve just fixed it. Didn’t like my job – get a new one. Wanted to make new friends – join a club. But now my options are severely limited and it’s hard to accept I’m no longer in total control.
16. Something I never thought I could do with my illness that I did was:
Get any better! I was bedridden with M.E. for nearly 10 years and now I’m not :-)
17. The commercials about my illness:
We thankfully don’t have health commercials in the UK – I hate the very idea!
18. Something I really miss doing since I was diagnosed is:
I don’t know where to start! Drinking. Going to the cinema. Dancing. Staying up late. Sleeping in late. Gardening. Going on holiday. Reading for hours on end. Having girlie chats and laughs. Wearing makeup and high heels. Having a social life basically.
19. It was really hard to have to give up:
Pain killers. I miss them. A LOT.
Plus I never thought I’d miss a tin of chopped tomatoes as much as I do. Giving them up has been weirdly life altering!
20. A new hobby I have taken up since my diagnosis is:
Photography. If someone had told me when I was 20 I would become a wildlife photographer I would have said “shoot me now and put me out of my misery” ;-) But I really enjoy it.
21. If I could have one day of feeling normal again I would:
Travel. Eat and drink whatever I wanted. And end the day by sleeping for 9 hours straight.
22. My illness has taught me:
I am not going to list my blessings – there is nothing good about being this sick. My biggest lesson has been that I’m totally alone and have received virtually no help or support, which I’ve found soul destroying and has made me bitter, sad and angry.
23. Want to know a secret? One thing people say that gets under my skin is:
Healthy people telling me how tired they are (after doing a 40 hour working week, then climbing a mountain for fun), then saying “well, you know what it’s like”. Seriously…….WTF***?!!!
Also people who diagnose me with all sorts of diseases over the internet despite the fact they have no medical qualifications, have never met me or seen my medical notes. They drive me nuts.
24. But I love it when people:
Tell me that my blog, or an article I’ve written, has helped them :-)
25. My favorite motto, scripture, quote that gets me through tough times is:
If today were the last day of your life, would you feel differently? It changes my perception in a huge way.
26. When someone is diagnosed I’d like to tell them:
Not to waste precious years, and thousands of pounds/dollars, chasing a cure. There isn’t one. I do tell people this but they ignore me, because trying to get better is part and parcel of the journey we all have to take before we can finally accept we’re chronically ill.
27. Something that has surprised me about living with an illness is:
How much everyone I know, even people who know me well, ignore my illnesses. Which in some ways is great, and in other ways is not.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I have so little practical support I had to think long and hard about this question. One of the nicest things anyone has ever offered to do for me was to pay for a hotel so that I could go and see my consultant down in London and not have to travel there and back on the same day. This person was a total stranger who reads my blog and, although I didn’t take the offer up, I was just incredibly touched that she would offer financial help when none of my friends or family had done so.
I was also very moved that new friends offered to text me while on the train to London last year, just to keep me company. I was touched they’d realized how alone I felt and how difficult the journey would be for me and their texts made me feel cared for.
29. I’m involved with Invisible Illness Week because:
It’s important to know we’re not alone.
30. The fact that you read this list makes me feel:
Amazed you’ve read this far! Grateful that you care enough to’ve read this far ;-)