Skip to main content

30 things about my illness you might not know meme





For invisible disability awareness please post on your own blog!

1. The illness I live with is: Fibromyalgia and chronic migraines
2. I was diagnosed with it in the year: FMS 1997, migraines 1998
3. But I had symptoms since: I was 8
4. The biggest adjustment I’ve had to make is: changing careers and struggling to hold down full time emloyment
5. Most people assume: If I can work with a migraine sometimes, then I must be fine to work all the time.
6. The hardest part about mornings are: waking up with a full blown migraine and intense grogginess and confusion.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: nothing
9. The hardest part about nights are: horrible insomnia
10. Each day I take 5 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried chiro, massage therapy, pphysio, herbs, vitamins and likely more that I don't remember
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I struggle to just hold down a job, but gave up my career of choice.
14. People would be surprised to know: I am in pain all the time, whether it shows or not.
15. The hardest thing to accept about my new reality has been: the fact my life has become so small, less socializations, unable to visit with family, struggling with work and no energy for anything else... even thought I try and often fail to do so.
16. Something I never thought I could do with my illness that I did was: go on a long trip to scotland.
17. The commercials about my illness: irk me 'don't fear the light' my butt.
18. Something I really miss doing since I was diagnosed is: being able to plan to visit people, can't plan on no pain or less pain.
19. It was really hard to have to give up: my career of choice.
20. A new hobby I have taken up since my diagnosis is: creative writing
21. If I could have one day of feeling normal again I would: go out and socialize and enjoy a night out.
22. My illness has taught me: the complexities of pain, the cost of pain and the way people view invsible disabilties... which makes me want to find a way to help us all.
23. Want to know a secret? One thing people say that gets under my skin is: "but you don't look sick"
24. But I love it when people: show compassion and sympathy.
25. My favorite motto, scripture, quote that gets me through tough times is: don't sweat the small stuff cause its all small stuff.
26. When someone is diagnosed I’d like to tell them: tricks and ways that might help them go through the coping process faster instead of the hard way.
27. Something that has surprised me about living with an illness is: how it changes the way you move in the world, your world view is entirely different.
28. The nicest thing someone did for me when I wasn’t feeling well was: one night on christmas eve I was working, got an acute migraine and became violently ill, my boss helped out and then a former employee offered to come and take my shift so I could leave. He stopped what he was doing and just offered up his time to work a job he has not in years for someone he did not even know.
29. I’m involved with Invisible Illness Week because: Because people do not understand the cost to chronic pain, how it affects all aspects of our lives and those we love.
30. The fact that you read this list makes me feel: engaged and proactive.
2 comments

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.




GENERAL
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

Getting through the high intensity pain flares #Blogboost

The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…