Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Friday, 18 September 2009

30 Things About My Invisible Illness You May Not Know

My contribution for Invisible Illness Week.

1. The chronic illness(es) I live with are: (with confirmed diagnoses) (1) Myalgic Encephalomyelitis, (2) Fibromyalgia, (3) Irritable Bowel Syndrome, (4) Low Back Pain, (5) Cervical spondylosis (arthritis of the neck) and Joint hypermobility. Plus C-PTSD. As if those weren't enough, I also have symptoms of all of the following commonly overlapping conditions; Interstitial cystitis (Chronic UTI infections), Migraine and Cluster Headaches, Multiple Chemical Sensitivity, Myofascial Pain SyndromeVulvodyniaPLMSSleep DisordersRestless Legs Syndrome, Temporomandibular Joint Pain.

2. I was diagnosed in the year: (1 & 2) 2008 (3) 1980 & 1986 (4) 1973 (5) 2010

3. But I had symptoms since: (1) 1973 (2) 1995, (3) 1980, (4) 1973 (5) 1990s and, with 20/20 hindsight, I can think of symptoms going back to my childhood and some ailments my ancestors had that now appear connected.

4. The biggest adjustment I’ve had to make is: Everything. Just trying to keep symptoms down to a manageable level is a full-time job, akin to the mythical, "Painting the Forth Bridge". Between things that I must do or must not do, must eat or must not eat, can wear and can't wear and, trying to find personal hygiene products, household products, clothing and shoes, medical treatments, etc., that don't cause allergies, adverse reactions or other nasty side-effects is seriously frustrating, but I have no choice but to walk on eggshells, every single day.

5. Most people assume: That there's nothing wrong with me!

6. The hardest part about mornings are: Waking up in terrible pain, getting breakfast and feeling exhausted, like I'm done for the day - this is without even considering ablutions. Insensitively cheery people when I'm shuffling around, visibly bent, clearly affected by something and feel like shit. Or asking me questions and expecting my brain to be functional before noon!

7. My favourite medical TV show was: Strong Medicine.

8. A gadget I couldn’t live without is: My laptop, because it is so often the only "window" I have on the world; the only way I can shop, socialise, etc.

9. The hardest part about nights are: Not being able to get to sleep, or waking early or having recurrent nightmares when I do manage to get some sleep.

10. Each day I take 0 pills & vitamins. Too many side effects: am intolerant of most medications, even OTC pain relief. Even supplements cause me to gag, or feel too sick to move after taking them now that I've had to stop everything.

11. Regarding alternative treatments I: Am willing to try things that make sense and aren't "snake oil", but generally can't because of prohibitive ongoing costs, the fact that they're rarely effective and almost invariably can't tolerate them.

12. If I had to choose between an invisible illness or visible I would choose: Neither, thank you! This is a tough one, because I certainly wouldn't like to have a physical deformity to deal with too (getting old, fat and ugly is bad enough), but the hurtful things people do because they can't/won't see my illnesses often feel worse than the physical pain I endure on a near constant basis. 

13. Regarding working and career: What career? I was "let go" due to ill-health, twice, in 1995 and again in 1997. I have documentary evidence to back this up (as well as the medical certificates issued to me last year [2008]), so it is not merely my opinion that I could not work. My symptoms have worsened considerably since that time and, I've deteriorated by a huge margin in the last year.

14. People would be surprised to know: I once had a brain. That worked! 

15. The hardest thing to accept about my new reality has been: Everything, but if I had to be specific: that I need help and am as entitled as anyone of having it.

16. Something I never thought I could do with my illness that I did was: I'm so physically impaired now - and bedbound 23+ hours a day - that I can't think of a single thing that would fit in this category. I suppose that, "retaining my sense of humour" is the closest thing that counts. But then that's sick too! :)

17. The commercials about my illness: Are for fake "miracle cures."

18. Something I really miss doing since I was diagnosed is: Singing and dancing.

19. It was really hard to have to give up: My life, my dog.

20. A new hobby I have taken up since my diagnosis is: You're kidding?

21. If I could have one day of feeling normal again I would: Travel, catch up with friends, because most of them are dotted around various parts of the world.

22. My illness has taught me: That empathy and compassion, like romance, are the pure invention of novelists. Where they do occur, they seem to be rare and precious gifts. On the other hand, not to waste energy on putting up with crap.

23. Want to know a secret? One thing people say that gets under my skin is: Right behind those who persist in their self-serving beliefs that there isn't anything wrong with me, are those (including doctors) who suggest I need exercise. Especially when I was already having to walk 3 - 5 miles a week when they said it. Of course it caused me to relapse. And no, I've never recovered.

24. But I love it when people: Ask me questions and appear as if they genuinely do want to try to understand my illness and how they can offer help.

25. My favorite motto, scripture, quote that gets me through tough times is:
"When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of this -- always." - Mahatma Gandhi
26. When someone is diagnosed I’d like to tell them: Enjoy the "relief" in finally getting a proper label for your ills, which, no doubt, took a long time and much effort to get. Now, sadly, prepare for the real fight; to be taken seriously, to get the help you deserve, treatment (spoiler alert: there is none), benefits, etc. Get as much support as you can, join every group you can bear and talk to as many people with the same condition(s) as you. Don't let them drag you down an ever-decreasing spiral of doom, or an ego trip of "my pain is bigger than your pain" (sadly common), but this is the only way you will retain any sanity and, by hearing many near-identical symptom reports, will convince even the most cynical doubters that it cannot be mere coincidence or something you "made up."

27. Something that has surprised me about living with an illness is: How cruel people can be towards us. This says more about them. Don't internalise it.      

28. The nicest thing someone did for me when I wasn’t feeling well was: Just listening. Assuring me that I'm not going mad. Find someone qualified to give you this feedback: someone whose voice will rise above the noise of invalidation.

29. I’m involved with Invisible Illness Week because: I want to help make these invisible illnesses visible, because I would not even wish my worst enemies to suffer what I have - which has primarily been at the hands of those we're supposed to be able to trust the most (family, so-called medical professionals, etc.)

30. The fact that you read this list makes me feel: Hopeful that you will have gained a little understanding about what it is like to live with one (or several) of these conditions: that it can be of help to you or someone you care for.