Some prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th)
I'm not one of these prominent people, however, I think it is important to share these as there is still so much even my closest friends and family do not know.
1. The illness I live with is: Osteoarthritis. OK lots of people have OA, and it affects one or two joints, mine is spreading. For those that don't know, OA is a condition that affects your joints. The surfaces within your joints become damaged so the joint doesn't move as smoothly as it should. This causes pain, in some cases, like mine, the pain is constant.
2. I was diagnosed with it in the year: I was diagnosed in 1994, I think, after a motorcycle accident had started my right knee aching.
3. But I had symptoms since: I can't really remember when symptoms started. I was often tired, or had aches and pains etc which at the time I did not know were symptoms.
4. The biggest adjustment I’ve had to make is: learning to adjust to my limits and having to help others less as I have to take care of myself.
5. Most people assume: that I am a happy, upbeat person because that's how I always was. When my knee first dislocated in 1980, I emptied a half hour bottle of Entonox (NO2) in 12 minutes! In the half hour to get to the hospital, I emptied two more. But I was joking all the time.
I try to look at the funny side to avoid looking at the down side, but, remember the song "Tears of a Clown"?
6. The hardest part about mornings are: simply getting moving at first. I am achy and very tired, as I normally don't get to sleep until 2/3 a.m. It would be easy to just go back to bed, but normally the wife wants me to pick her up or take her somewhere.
7. My favorite medical TV show is: House of course! I just wish there were doctors like him and his team in the UK to sort people out!
8. A gadget I couldn’t live without is: It's a toss-up between my battery operated can opener or the laptop. The can opener means I can get at food, the laptop, allows me to order groceries for delivery, but also keep in touch with family and friends.
9. The hardest part about nights are: The excruciating agony in my knees keeping me awake, to such an extent that pain killers don't touch it. The fact that the late nights in pain, in tears, means that my body then needs longer in the morning to wake up and the fact that people think, oh, if you're going to sleep so much later, go to sleep earlier!
10. Each day I take 15 pills & but no vitamins as yet. (No comments, please)
11. Regarding alternative treatments I: I know homeopathy works, I've seen it with my children and teething stuff my ex-father-in-law (a homeopathist) gave us for them. I would love to find something that helps with the muscle spasms, the pain, the weakness.
12. If I had to choose between an invisible illness or visible I would choose: I would really like to be able to choose a third option - neither! The invisible illnesses and disabilities in the world need more understanding from those around us. Compassion is easy for people when they see someone with an amputated or deformed limb, but when the problems are hidden, understanding of the problem is difficult.
13. Regarding working and career: I wish! I had the awful "turn down" at a few job interviews in the past of "You are a fire risk! We can't have you work for you because if there was a fire, we couldn't risk you falling down the stairs and blocking them!"
14. People would be surprised to know: That I often wish I could curl up in a corner and let the rest of the world go to heck. I often feel like I want to give up, but I have three gorgeous grand-daughters that I can't let down.
15. The hardest thing to accept about my new reality has been: The lack of energy. The constant pain tires you out, so you need to pace yourself through the day. You have to use trains to travel to places that used to be a car drive away.
16. Something I never thought I could do with my illness that I did was: That's the problem, Osteoarthritis is not a young person's illness, so older people have it, not me! I don't know anything that I'm not supposed to be able to do.
17. The commercials about my illness: There are no commercials for Osteoarthritis, it is still a very misunderstood illness (by most people). The journey of awareness has begun but there is a long way to go for a cure.
18. Something I really miss doing since I was diagnosed is: Hiking across our local Country Park, bird watching and enjoying nature.
19. It was really hard to have to give up: My independent nature, if I fall, if I can't stand up, the need for help to get up.
20. A new hobby I have taken up since my diagnosis is: There isn't anything really, I would like to try several ideas, but they all need fine motor skills with the fingers and I'm losing that.
21. If I could have one day of feeling normal again I would: Take my grand-daughters out across the "Firehills" between Hastings and Rye, showing them all the hidden things, both flora and fauna.
22. My illness has taught me: People prefer things they can see, even if they still don't understand them. Jonny Peacock is accepted as he has no feet, Tony Turtle is OK because he has all his bits!
23. Want to know a secret? One thing people say that gets under my skin is: "You don't know what real pain is!" Sorry? 24/7/365! I know what pain is!
24. But I love it when people: When people put their arm about me, even though it hurts and says, "I wish I could take the pain away" (even better when the name "Gumpy", my grand-daughter's name for me, is included)
25. My favourite motto, scripture, quote that gets me through tough times is: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
26. When someone is diagnosed I’d like to tell them: It is tough, it may get worse, but the people that love you will be shown up by staying with you.
27. Something that has surprised me about living with an illness is: The fact that people don't seem to care if they can't see something wrong.
28. The nicest thing someone did for me when I wasn’t feeling well was: Having my daughter who has ME (CFS) get dressed, put the kids in the car and brought them to visit.
29. I’m involved with Invisible Illness Week because: The world needs to realise that it's not just the people with Invisible Illnesses that realise there is such a thing as Invisible Illness.
30. The fact that you read this list makes me feel: Hopeful that more people will understand about Invisible Illness.
For more in my blog about all sorts of stuff: http://aturtle05.blogspot.com/2014/09/30-things-about-my-invisible-illness.html
For more in my blog about all sorts of stuff: http://aturtle05.blogspot.com/2014/09/30-things-about-my-invisible-illness.html
