Friday, September 14, 2012

NICIAW - Eczema, Asthma, Allergies

Kay writes:

1. The illness I live with is
Its chronic allergies really. I'm atopic with eczema, asthma and hayfever with allergies to soap, most cosmetic products, fragrances, colourants, dust, fur/feather bearing animals and even pineapple and kiwi fruits. Lately I seem to have added water to the list.
2. I was diagnosed with it in the year 1985

3. But I had symptoms since:
All my life.

4. The biggest adjustment I’ve had to make is:
Not using any soaps, perfumes or shampoos. I can only use detergents suitable for sensitive skins without added fragrances or fabric softeners.I also have a skin maintenance regime and need to walk with creams every where I go to keep my skin constantly hydrated so its less likely to break down. I also have a supply of a variety of gloves to use for household chores. I keep clothes that are worn close to the skin restricted to natural fabrics as is possible. This isn't easy when it comes to shopping for bras
5. Most people assume:
That because I don't use soap my hygiene must be bad. They also assume that the allergies can be ignored so they expect me to be volunteering to do the washing up when I visit them when they have not provided any protective wear for me. Its even worse when something needs cleaning up and they try to give me a soapy cloth to wipe things up. I can't touch that with my bare hands and not suffer for it.

6. The hardest part about mornings are:
If its a good day then there's the bath and body creamings to go through. On a bad skin day I'd see what damage I'd done whilst sleeping to my inflamed skin. I can sometimes scratch in my sleep which leads to bleeding. I've even put on cotton gloves as scratch mitts when things were really bad. A bad skin day can mean I also begin with unwrapping clingfilm bandages that covered the worse affected areas over night. I also have to hope that this latest bath doesn't leave me coming out stinging in pain from head to foot due to the latest reaction I'm having with water.

7. My favorite medical TV show is:
Don't really have one

8. A gadget I couldn’t live without is:
A washing machine. With all those creams I go through a lot of bed linen quickly. they do rub off on the sheets. I tried using the laundrette when my washing machine was broken and I was waiting to get a replacement. It was a nightmare

9. The hardest part about nights are:
On a good night its just creaming up and hoping its enough to keep most itching at bay. On a bad night itching may keep me awake. A bad skin day could mean putting on extra cream and doing the clingfilm bandage wrap over the worse affected area.
10. Each day I take __ pills & vitamins. (No comments, please)
Its just the one extra strong antihistamine. Its all about the creams and bath oils for me. Thankfully I haven't had to use an inhaler for a while.

11. Regarding alternative treatments I:
There's nothing available currently within my means or access.

12. If I had to choose between an invisible illness or visible I would choose; A broken arm since it would heal and improve. People also wouldn't ignore it if it restricts/changes the way you do things.

13. Regarding working and career:
It does make it difficult for me to do certain jobs. I have tried and can only manage up to a certain limit.

14. People would be surprised to know:
That I adore animals especially the furry ones though I should stay away from them. My immune system isn't low.

15. The hardest thing to accept about my new reality has been:
Its not going to go away.

16. Something I never thought I could do with my illness that I did was:
I haven't really explored that as yet.

17. The commercials about my illness:
The nearest I've ever seen is when they have the annual hayfever treatments ads there's nothing on skin stuff.

18. Something I really miss doing since I was diagnosed is:
This would be a bit after diagnosis, I miss having a pet I could pet
19. It was really hard to have to give up:
That'd be the furry pet again.

20. A new hobby I have taken up since my diagnosis is:
Hmmm that would be swimming and taking long walks. Swimming did help my lungs regarding the asthma. Though I may have to stop the swimming over the water thing now.

21. If I could have one day of feeling normal again I would:
Have a bubble fight and be okay hugging someone who wore lots of perfume and body spray.

22. My illness has taught me:
There's more than one way of doing things

23. Want to know a secret? One thing people say that gets under my skin is:
Take more vitamins to boost your immune system. I am not malnourished and my immune system is not low its over active.

24. But I love it when people:
Don't spray around lots of air fresheners

25. My favorite motto, scripture, quote that gets me through tough times is:
I'll have to work on that one

26. When someone is diagnosed I’d like to tell them:
Start up a creaming regime and your good hygiene can still be maintained.

27. Something that has surprised me about living with an illness is:
It doesn't define me as a person.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Washed my dishes.
29. I’m involved with Invisible Illness Week because:
Jen asked.

30. The fact that you read this list makes me feel:
OK

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