Evidently this is invisible chronic illness awareness week....who knew?
There is a list on the website (which I've posted a link to below) where you can share 30 things about your Invisible Illness. I've decided to do this here....
30 Things About My Invisible Illness You May Not Know:
1. The illness I live with is: Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome (which is not the same as chronic fatigue).
2. I was diagnosed with it in the year: 2002
3. I had symptoms since: The weekend of June 15th, 2002 - one day I was well, the next day I wasn't.
4. The biggest adjustment I’ve had to make is: loosing my job, home, and pretty much all of my hobbies.
5. Most people assume: M.E./CFS is mostly about being tired and is a result of stress, depression etc. (rather than a significant biological illness with symptoms such as dizziness, sore throat, fevers, painful and swollen lymph nodes, sleep issues etc.). While I'm sure you get very tired sometimes, the exhaustion, weakness and fatigue I feel are nothing like what a "well" person feels.
6. The hardest part about mornings are: Waking up and realizing I'm still sick.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn't live without is: hmmm...... perhaps my washer and dryer
9. The hardest part about nights are: Getting to sleep....
10. Each day I take: 2 pills & vitamins... no income for more...(No comments, please)
11. Regarding alternative treatments: In the first few years of illness I spent thousands of dollars (perhaps $10 000 if you include all the supplements and pills) trying treatments that people thought would "cure" me including - homeopathic, naturalpathic, chiropractic, acupuncture, energy medicine etc.
12. If I had to choose between an invisible illness or visible I would choose: Some days I like being able to "hide" my disabilities, other days I wish I looked as sick as I feel so people wouldn't tell me how "great" I look when I'm feeling like death.
13. Regarding working and career: I miss working - I've been unable to work for 6 years and on disability for four years. More recently I have been able to be a student (in part, because I can do the work at home from bed if need be).
14. People would be surprised to know: Before I got sick I led wilderness expeditions year round - dog sledding, canoeing, hiking, sea-kayaking etc., and I liked to run (I ran a 1/2 marathon before becoming ill).
15. The hardest thing to accept about my new reality has been: Relying on others (including the government) for support. Also not being able to have or adopt children.
16. Something I never thought I could do with my illness that I did was: Learn a certain amount of patience.
17. The commercials about my illness: Are nonexistent
18. Something I really miss doing since I was diagnosed is: Working, running, going out with friends and not feeling like crap the whole time.
19. It was really hard to have to give up: My life. Especially being physically active.
20. A new hobby I have taken up since my diagnosis is: Art - painting and printmaking.
21. If I could have one day of feeling normal again I would: Go for a run, a canoe, a hike in the woods and end the day with friends eating a meal out w/o feeling awful.
22. My illness has taught me: patience, more compassion for others, not to judge people's abilities/motivations just by looking at them.
23. Want to know a secret? Things people say that get under my skin are: "You're sick? But you look great!"; "I get tired too!"; "Come on, you can do ____, you'll be fine."
24. But I love it when people: Make the effort to be friends with me despite the illness. For example, offering to come over to visit rather than go out when I'm crashed, finding things we can do that aren't "active", or inviting me out again and again even though 5 out of 6 times I may say no.
25. My favorite motto, scripture, quote that gets me through tough times is: I'll have to think on this one.
26. When someone is diagnosed I’d like to tell them: "You are truly physically ill despite what others may say - find a M.E./CFS specialist....trust what your body tells you....whatever you do DON'T push yourself as this will cause relapses and a worsening of the condition."
27. Something that has surprised me about living with an illness is: I'm not alone - I've made friends with others that have M.E./CFS and who understand the daily physical struggle.
28. The nicest thing someone did for me when I wasn’t feeling well was: Supported me, went out and bought groceries for me when I was too ill, visited me at home and watched movies with me, and advocated for me - told others about this real, devastating illness.
29. I’m involved with Invisible Illness Week because: I want people to know how severely devastating M.E./CFS is. I want people to know that no one would "choose" this life.... I do NOT have motivational issues - I'm sick.
30. The fact that you read this list makes me feel: Happy, that you took the time to care.
Find out more about National Invisible Chronic Illness Awareness Week at http://www.invisibleillnessweek.com/
I feel badly that you are going through this disabling illness. I want to merely take issue with your scathing opinion of those with depression, which is also a real "biological" disease and very disabling. I have family members with both ME/CFS and some with depression in my family, treated by medicines. I understand depression to have neurological roots such as neurotransmitters. So please you and other ME/CFS sufferers, stop belittling and being defensive about depression. Millions of men and women suffer from all forms of mental illness. Depression, bipolar disorder, and anxiety are only the tip of the iceberg for this vast field. Easier to judge than to educate yourself, I suppose.
ReplyDeleteI grew up with a parent with it so I am educated about it all too well. And while I realise depression also has biological roots, it is quite a different condition. However, many doctors don't seem to have a clue about M.E. so they assume people are making up their symptoms (the illness ones such as sore throat, fever, swollen lymph nodes and physical weakness so bad that at times we can't walk). They tell M.E. patients they have depression (which some may have) and force them onto anitdepressants which not surprisingly, don't work and often make M.E. patients much sicker. I don't think I'm as empathetic of those with depression as I should be. You're right. And I don't have any legitimate excuse. I'm just sick of doctors being uneducated and misdiagnosing people with this illness.
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