National Chronic Illness Awareness Week (Sep 12-18th 2011) is a little way off, yet. But on their website:
Invisibleillnessweek.com "30 things meme"
they suggest a great idea for sharing what living with an invisible chronic illness really means.
My immediate reaction was Number One: I REFUSE TO BE DEFINED BY ILLNESS. WHO HAS EVER HEARD ME WHINE? I AM ME!
But it's important for all society to learn more about coping with invisible chronic illnesses.
Important for those who are ill.
Important for their acquaintances who are luxuriously smug now that they'll never develop an invisible but very real illness themselves.
Important for their families.
Important for their loved ones.
Important for their employers and colleagues.
Important for their doctors and consultants.
Important for decision makers and politicians.
Important for everybody in this wonderful, challenging world.
So here's my contribution to the meme project this year.
This is what it's important to know if you care about me.
If not, please look away and enjoy your day!
The words in heavy type below are the 30 things suggested by the Invisible Illness site.
The italics are wholly my own.
Please feel free to comment or contact me, or even better, visit the Invisible Illness Week website here
Invisible Illness Awareness website link
and spread the word, share your own story!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Myalgic Encephalomyelitis complicated by Type 1 Diabetes with little warning of hypoglycaemia.
2. I was diagnosed with it in the year: M.E. (diagnosed 2006); Type 1 Diabetes (diagnosed 1984).
3. But I had symptoms since: M.E. - about 1992 when I was laid low with giardia and amoebic dysentery while working in Bolivia, South America. 3 bouts of shingles in my head (Easter 2000, 2004, 2008) are also thought to have had roots in the M.E. I collapsed on 24th October 2005 after my annual flu jab recommended for diabetics. It usually made me ill each year, though never so badly as 2005. I think my diabetes began about the time I began university in 1980, but the doctors (when I was driven to attend!) always vaguely put my thirst and weight loss etc down to "stress" and "my age" (early 20s????) until I walked into my GP's office in sheer desperation in July 1984 with a urine sample and a request to be tested for diabetes after the penny began to drop. I was hospitalised with BG in the 30s the same afternoon. *rolls eyes*
4. The biggest adjustment I’ve had to make is: going from being a busy, popular, in-demand member of society known for my sunny optimism, hard working, innovative, lively nature and compassion, to somehow ending up classed in the same boat as benefit scrounging scum and spoken of as if I wasn't still here inside. My beloved two mountains bikes rusting in the shed. No longer being able to pass everyone in the street as they laugh and say "Are you in a rush?" and having to pace myself when real life just doesn't work like that!
5. Most people assume: that it's all about some vague "tiredness" or "fatigue" we all get after effort, and not a bone-crushing, disabling multi-system sickness that knocks the legs from under you and affects every part of you, brain and body, digestion, thought and strength/co-ordination. They assume when they actually see you on a better day, because you might actually be out of bed/the house, you must therefore be 100% well!
6. The hardest part about mornings are: hearing the post drop on the mat and dreading what new bill or humiliating DWP form it may bring. Not having slept well at night means I no longer wake at the crack of dawn raring to go. Well, I'm still raring to go, but my body says "no"!
7. My favorite medical TV show is: nothing that mentions M.E. as I dread the old myths and lies being peddled yet again. Probably "Embarrassing Bodies" on Channel 4.
8. A gadget I couldn’t live without is: My laptop, keeping me in touch with friends, colleagues, campaigning, shopping etc when my illness scuppers going out to maintain such links with my real life. Or my walking stick, when the ground appears to turn to rubber like the cake-walk from hell!
9. The hardest part about nights are: Every sleepless second spent lying on the invisible burning mat of feverish pain and muscle spasms.
10. Each day I take loads of pills & vitamins. For Diabetes: short acting and long acting insulins 5 times a day, metformin (trialled with type 2s but also useful in insulin resistance after years of type 1), statins for cholesterol (side effects possibly because their leeching effect on M.E.'s depleted source of Co Enzyme Q10 made me have to discontinue/change these recently), ACE inhibitors for high blood pressure.
For M.E.? Having tried low-dose amytriptilene and melatonin (bought not prescribed!) in early days, now just painkillers/anti-inflammatories (ie aspirin, ibuprofen and paracetamol) which have little or no effect anyway!
11. Regarding alternative treatments I: have tried quite a few for myself over the years and have resisted the patronising and impractical suggestions of psychological "therapies" read about in newspapers by well-meaning friends of friends, because those same articles they read are still in the dark ages about M.E. as a physical, neurological, multi-systemic illness and not some form of idleness and/or depression. Why do they not remember how unlikely it is I'm depressed?
12. If I had to choose between an invisible illness or visible I would choose: visible. Any day of any week.
13. Regarding working and career: I have gone from virtually being on call 24/7 to being forced into early retirement from my beloved ministry. Voluntarily preaching for an hour a month now often leaves me crashed and unable to function properly for days or weeks afterwards. I long for the day my health may be reliable enough to resume work in some form, but at my age and with my history, the flexibility needed to enable this still seems a distant prospect.
14. People would be surprised to know: I'm still exactly the same person they used to know, just sicker, and I despise the way they see me now.
15. The hardest thing to accept about my new reality has been: the way the media, medics and society in general treats me just because I have been stupid and awkward enough to have developed M.E. on top of my diabetes. Greedy cow! What was I thinking?
16. Something I never thought I could do with my illness that I did was: Become bolshy enough not to apologise for it, and channel that controlled frustration and rage into helping others raise awareness.
17. The commercials about my illness: What commercials?
18. Something I really miss doing since I was diagnosed is: Cycling. Walking for miles and miles. Playing (ie lifting) my accordion and singing without huge payback.
19. It was really hard to have to give up: Independence.
20. A new hobby I have taken up since my diagnosis is: digiscoping (birds in the back garden with a camera through a spotting scope).
21. If I could have one day of feeling normal again I would: thank God and go on raising awareness to help others not so blessed. Run to the edge of a cliff in Flamborough and stand laughing into the wind blowing in from the ocean.
22. My illness has taught me: what a difference a day makes. Laughter definitely IS the best medicine.
23. Want to know a secret? One thing people say that gets under my skin is: "Glad to see you looking so well!" (though better than looking like a miserable whining git, I reckon!)
24. But I love it when people: Genuinely want to educate themselves about invisible illness and show sensitivity and compassion. Like them, I never thought it would happen to me.
25. My favorite motto, scripture, quote that gets me through tough times is: Lyric:"There's only one thing that I know how to do well
And I've often been told that you only can do
What you know how to do well
And that's be you,
Be what you're like,
Be like yourself,
And so I'm having a wonderful time
But I'd rather be whistling in the dark" (They Might Be Giants, "Whistling in the Dark" from 'Flood').
Scripture:1 Peter 3:15: "But in your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks the reason for the hope that you have. But do this with gentleness and respect."
Invisible illness related: "No, I don't look sick. You don't look stupid, either."
26. When someone is diagnosed I’d like to tell them: You're not alone. Be gentle with yourself. Don't let anybody or anything crush your joy. Sense of humour and love is the greatest gift you could be given.
27. Something that has surprised me about living with an illness is: The depth of people's wilful ignorance and casual cruelty.
28. The nicest thing someone did for me when I wasn’t feeling well was: Fetched a prescription for my mother out of normal hours, knowing without needing me to ask that I couldn't fetch it myself.
29. I’m involved with Invisible Illness Week because: I want to change the world for others struggling with misunderstanding and ignorance, to make a better life for everyone in this position, as I would have wanted to do before I was affected myself, and would want to still when I am well again.
30. The fact that you read this list makes me feel: Blessed. Blessed you bothered to stop by and try to understand. Please don't waste the opportunity to grow and learn from this. Thank you!
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