Saturday, September 25, 2010

30 Things you might want to know about my invisible illness

I decided to repost this from my other blog. Not sure why I posted it over there and not here to begin with.

This is going to be a very different type of post for me, more personal than I normally am with anyone, especially opening myself up on blog land like I am doing. I felt compelled to write this post after reading two Facebook posts this morning from friends of mine. Both of these people were friends at one time, but we grew up and I moved away and we have reconnected through Facebook. One post included this notice about invisible illness week. Who new such a thing existed? The friend that posted this is a fellow chronic pain sufferer and has posted some valuable resources that have benefited me lately. And until I saw her posts about chronic pain, didn't know she suffered from. The other was a post by someone that I know to be a beautiful person that would probably never intentionally hurt anyone with her words or actions. But in her post she was lamenting the fact that due to Obama's Heath care plan that it would be messing with her life. She works and pays for insurance and posted that she and other full time workers would be paying for medical care for people that don't want to get a job with insurance. I don't know how I feel about the health care plan, and do not want to debate that or any other politics on this blog. I do however want to stand up and be counted and perhaps give another face to that argument.

I am one of the people that this legislation could potentially help if it is administered correctly. My husband is self employed and works far more than the standard 40 hours a week. We do not have health insurance. I have a preexisting condition. I do not work full time because I am not able so I do not qualify for insurance through my work. Once again, I do not want to debate the merits of the health care reform I just want to let you know there are many many of us with illnesses you can not see.

I have struggled with back issues since I was six years old. Only recently have I opened my search outside of my scoliosis diagnosis and started learning more about chronic pain. There are thousands and thousands of us. I have found a voice and a place where I am not a freak, a place where I am understood.

I am fortunate enough to have a husband that is pretty intuitive to my pain levels. He will offer to go and get the car if I have walked too far, and not make me ask. He can read my walk and tell how bad the pain is, even though I will lie and say it's not as bad as it is. We are still working out the kinks but he tries and most of the time gets it right. But as great as he is, he does not understand because he does not suffer. He tries and I appreciate it, but it's nice to have found others.

So here goes with things you might not know about me. My hope in writing this is that maybe the people that read this will not be so quick to judge people and just think we don't want to work or that we are lazy or that we are exaggerating.

1. The illness I live with: Chronic pain due to scoliosis and failed fusions (yes, that's plural, multiple failures).

2. I was diagnosed with it in the year: 1976

3. But I had limitations/symptoms since: I was in a brace by 1977 and started facing limitations since then. Pain really shifted into a chronic state in I would say 1985 or so. I used to have more good days where the pain wouldn't be so bad, but not as many now. And no days where the pain isn't present at all.

4. The biggest adjustment I have had to make is: admitting that I can't do everything everyone else can. Also having to ask for help. Since my earliest memories or trying to prove that yes I can do everything that all the other kids were doing, I have tried to do it all on my own. Admitting that I can't after trying so hard to prove I could has been a difficult adjustment.

5. Most people assume: they know how I feel because their backs hurt too. Or the other extreme is they feel bad saying they hurt their back because they know some of my issues. Yes they are different pains, but you can tell me you hurt too. I am an understanding ear!

6. The hardest part about mornings: is just getting moving and walking. I am so stiff when I wake up, it takes me a while and a lot of hot water to get to the point that I can bend over to put my socks on.

7. My favorite medical TV show: don't have one.

8. A gadget I couldn't live without: my computer. Online, I can blog and read and be just like everyone else. Wish I had a lap top though so that I could lay in bed or on the couch if I needed to. I am a craft related blogger, so there are no limitations in this world.

9. The hardest parts about night are: just trying to find a position to lay in that does not hurt. And to be able to stay in the position long enough to go to sleep and get a good nights rest. I toss and turn so much trying to stay comfortable that I often wake up tired.

10. Each day I take __ pills and vitamins (no comments please) 5-8 depending on pain level

11. Regarding alternative treatments: I am open to them but sometimes get tired of hearing about your amazing chiropractor that helped you after your wreck, or the magic pill that cures it all. My doctor recently asked if I would be willing to try some more nontraditional treatments and I told him that at this point I would be willing to try dancing naked in the moonlight while rubbing frog juice on my body if it would help. But no, your chiropractor can't adjust me and make me better, and no, I don't really need his number.

12. If I had to choose between an invisible illness or a visible one: I would take the visible one. when people can see the cause of your pain they know your aren't exaggerating or just trying to get out of doing something.

13. Regarding work and career: I have a job now that is flexible enough that I can do it without causing myself more pain. When I worked full time, I came home in tears most days. Now I can sit when I need to sit, stand when I need to do that, walk around if I need to and I don't have to bend, turn or lift. But working a full eight hour day is just not possible.

14. People would be surprised to know: that the pain never goes away, sometimes it is worse than others, but it just never goes away. It is so exhausting fighting the pain all the time. That sometimes it is all I can do not to cry. Bending over hurts.

15. The hardest thing to except about my new reality: honestly for me, it is just admitting how much it limits me. Of how many things I miss out on because I say "I don't want to" because it kills me to admit "I can't" because I am either feeling too bad already or that I know it will push me over the edge.

16. Something that I never thought I could do with my illness but did: A few weeks ago I walked through an entire mall with my husband. AN ENTIRE MALL and I did not use my cane, I did not have a shopping cart to hang on to and he did not have to bring the car to where I was. I walked the entire mall. I cannot remember the last time I did that without a cane.

17. the commercials about my illness: there are no commercials about my illness.

18. Something I really miss doing since I was diagnosed: More active things, I used to hike more, roller blade, and bowl before the pain progressed. I also miss accepting invitation to people's houses, especially cookouts without having to obsess about what kind of furniture they have and praying that I will be able to find a comfortable seat to sit in. Usually you can find me in the kitchen, those chairs are usually hard and straight. Outdoor furniture is pure torture.

19. It was really hard to give up: control. My pain dictates what I can or can't do most days. It's not what I want to do, it's always what I can do. It's hard to make plans too far in the future.

20. A new hobby I have taken up since my diagnosis: stamping, card-making and blogging about my craft related hobbies.

21. If I could have one day of feeling normal again I would: Not stop! I would go hiking somewhere beautiful, take pictures, go shopping, I would just keep moving.

22. My illness has taught me: Patience. Understanding of the pain others might have. Not to judge that person that looks perfectly healthy that parks in the handicap space. Not all pains can been seen.

23. Want to know a secret? One thing that people say that gets under my skin: I feel so sorry for you. Don't pity me. You can say I am sorry you are dealing with that, but don't pity me please, don't say you feel sorry for me. Pity makes me angry and makes me more determined to prove I can, even if I hurt myself to do it. If I know you pity me I will never be honest with you regarding my pain, never.

24. But I love it when people: will let me change the subject when I don't want to talk about my pain. I appreciate your concern, really I do, but sometimes it's all I can do not to lay down and cry and when you notice I am trying to focus on something else and you go with me to another topic, I really appreciate that. I like it when people notice that I am struggling and they offer to help so that I don't have to ask all the time and when they do that without making a big deal about it.

25. My favorite motto, scripture or quote that gets me through tough times is: It's one that I recently read. I do have body image issues so this means a lot. "In nature nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways and they are still beautiful." Alice Walker

26. When someone is diagnosed I'd like to tell them: Don't search the internet until you have really talked to your doctor, because the first things you find are going to be the worst and you might scare yourself unnecessarily! Make sure you have a doctor that will talk to you and not at you.

27. Something that has surprised me living with an illness: That there are so many people that suffer with chronic pain. That I may not be able to do everything but there is still tons I can do.

28. The nicest thing that someone did for me when I wasn't feeling well was: just let me cry. Sometimes the tears just need to come out. One time shortly after we were married, my husband cooked dinner for me.He let me sit on the couch and cry and he made food that I could eat laying down without spilling (pizza) and brought me my drink with a bendy straw so I could even drink without sitting up. All that without making me feel bad about myself. He also slows down when he is driving and its bumpy or we go over railroad tracks. Its the little things that mean the most.

29. I am involved with Invisible Illness Week because: I want others to know what the face of an invisible illness looks like.

30. The fact that you read this list makes me feel: a little less lonely because I am not hiding any more.

I would like recommend a book I read recently. It is good for anyone that suffers from chronic pain, anyone that loves someone that suffers from it or if you are in the medical field and work with chronic pain patients. The name of the book is "The Language of Pain" and was written by David Biro, MD. Excellent book and so liberating to know I was not alone in the silence of my pain.

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