http://becomingvisible4me.org/
Have a look, some really good work being done here.
Friday, 30 September 2011
Thursday, 15 September 2011
30 Things about my invisible illness you may not know
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
1. The illness I live with is: Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Changing my plans for the immediate future
5. Most people assume: ME is something to do with laziness
6. The hardest part about mornings are: Waking up in general, keeping my eyes open
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: My laptop
9. The hardest part about nights are: When my boyfriend snores?
10. Each day I take _8_ pills & vitamins.
11. Regarding alternative treatments I: Have had Reflexology which helped with my sleeping pattern and Acupuncture, which actually made me feel worse. I've also tried Homeopathic remedies which I felt made little difference.
12. If I had to choose between an invisible illness or visible I would choose: Neither
13. Regarding working and career: I'm optimistic but have realised some things are more important.
14. People would be surprised to know: Before I had ME I went for a run about 3 times a week, had singing lessons, piano lessons, and 3 rehearsals for various shows. I would also like to be a professional classical singer.
15. The hardest thing to accept about my new reality has been: My limitations.
16. Something I never thought I could do with my illness that I did was: Move out, just done it
17. The commercials about my illness: are few
18. Something I really miss doing since I was diagnosed is: Being spontaneous able to do exciting things on the spur of the moment.
19. It was really hard to have to give up: My school courses
20. A new hobby I have taken up since my diagnosis is: Colouring books and Baking
21. If I could have one day of feeling normal again I would: Have a crazy night Partying!
22. My illness has taught me: What I really want in life and what is important.
23. Want to know a secret? One thing people say that gets under my skin is:So, you don't work?
24. But I love it when people: Say I look good
25. My favorite motto, scripture, quote that gets me through tough times is:Isn't it funny being a bunny when you've got in the habbit of being a Rabbit
26. When someone is diagnosed I’d like to tell them: it's Shit, but if you need to talk I'm here.
27. Something that has surprised me about living with an illness is: You learn who you're friends are
28. The nicest thing someone did for me when I wasn’t feeling well was: Being Dinner up to My bed because I was too tired to go out to dinner.
29. I’m involved with Invisible Illness Week because:Raise awareness to illness that don't always have visible symptoms
30. The fact that you read this list makes me feel: Like a banana
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Changing my plans for the immediate future
5. Most people assume: ME is something to do with laziness
6. The hardest part about mornings are: Waking up in general, keeping my eyes open
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: My laptop
9. The hardest part about nights are: When my boyfriend snores?
10. Each day I take _8_ pills & vitamins.
11. Regarding alternative treatments I: Have had Reflexology which helped with my sleeping pattern and Acupuncture, which actually made me feel worse. I've also tried Homeopathic remedies which I felt made little difference.
12. If I had to choose between an invisible illness or visible I would choose: Neither
13. Regarding working and career: I'm optimistic but have realised some things are more important.
14. People would be surprised to know: Before I had ME I went for a run about 3 times a week, had singing lessons, piano lessons, and 3 rehearsals for various shows. I would also like to be a professional classical singer.
15. The hardest thing to accept about my new reality has been: My limitations.
16. Something I never thought I could do with my illness that I did was: Move out, just done it
17. The commercials about my illness: are few
18. Something I really miss doing since I was diagnosed is: Being spontaneous able to do exciting things on the spur of the moment.
19. It was really hard to have to give up: My school courses
20. A new hobby I have taken up since my diagnosis is: Colouring books and Baking
21. If I could have one day of feeling normal again I would: Have a crazy night Partying!
22. My illness has taught me: What I really want in life and what is important.
23. Want to know a secret? One thing people say that gets under my skin is:So, you don't work?
24. But I love it when people: Say I look good
25. My favorite motto, scripture, quote that gets me through tough times is:Isn't it funny being a bunny when you've got in the habbit of being a Rabbit
26. When someone is diagnosed I’d like to tell them: it's Shit, but if you need to talk I'm here.
27. Something that has surprised me about living with an illness is: You learn who you're friends are
28. The nicest thing someone did for me when I wasn’t feeling well was: Being Dinner up to My bed because I was too tired to go out to dinner.
29. I’m involved with Invisible Illness Week because:Raise awareness to illness that don't always have visible symptoms
30. The fact that you read this list makes me feel: Like a banana
Tuesday, 13 September 2011
AWARENESS
I'm trying to raise awareness for CFS and ME. Just last year I had a doctor ask me, after I had explained my illness and the symptoms, (in a patronising manor) "why are you in a wheel chair? You should be doing your studying or at college, I don't understand why you're not" I was so angry I said nothing and asked to leave. I'm sick of people asking of ME is just laziness. My local M.P refused to sign a petition to bring up the subject of raising awareness to parliament.
Something must be done. Please comment or email me your stories or any advice for those suffering.
Thank you
Something must be done. Please comment or email me your stories or any advice for those suffering.
Thank you
Some Good news
‘New hope for ME/CFS research in the UK’ – joint charities’ biobank statement
Three charities – Action for M.E., the ME Associationwww.meassociation.org.uk and ME Research UK – and a private donor have joined forces to fund the UK’s first biobank of human blood samples for research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS).
The biobank will be situated at London’s Royal Free Hospital where it will be able to link in with the extensive research facilities at University College London.
From Monday 8 August, having completed their feasibility studies, principal researchers Dr Eliana Lacerda and Dr Luis Nacul, London School of Hygiene and Tropical Medicine, will be inviting patients from a dedicated disease register to submit blood specimens. The blood will then be specially prepared and stored for use in future biomedical studies.
Initially, blood samples will be collected from a group of patients currently enrolled in the M.E./CFS Disease Register, and from healthy controls. This patient group will include people who are severely affected and bedbound.
In the longer term other people who have been diagnosed with M.E. will be able to donate blood samples too.
To read more go to
http://www.meassociation.org.uk/?p=7540
First Ever Post!
Good Day,
A great way to start building strength when you're unable to get out of bed. Tense muscles for 10 seconds then relax for 10 seconds. Repeat 3 times then move onto another muscles. Start with the simple tensing of the bottom, it's the easiest and the most fun to do!
A great way to start building strength when you're unable to get out of bed. Tense muscles for 10 seconds then relax for 10 seconds. Repeat 3 times then move onto another muscles. Start with the simple tensing of the bottom, it's the easiest and the most fun to do!
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