I get so tired of people telling me how I don't look ill...just a little tired looking they tell me. I found this questionaire on line at Invisible Illness Week blog after reading one on a blog I follow. Linda and her daughter Pea both have ME/CFS and have had it for over 20 years.
Linda's blog is Lindy's Musings From an M.E. Mind.
Check out both sites you will be glad you did. Lots of useful info there!
Now on to the 30 questions!
1. The illness I live with is: ME/CFS and Fibromyalgia
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 1990
4. The biggest adjustment I’ve had to make is: loss of identity and mobility
5. Most people assume: I look healthy but a little tired and some even think I may be faking it! I love it when people tell you you just need to push yourself a little more!
6. The hardest part about mornings are: getting out of bed and dealing with life when my brain is still asleep!
7. My favorite medical TV show is: Private Practice
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: not being able to sleep. If I do get to sleep I wake up every hour or so.
10. Each day I take _18_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: am cautious at trying many cause it can cause a set back of weeks if it doesn't work.
12. If I had to choose between an invisible illness or visible I would choose: The devil I dance with right now. I can manage it more or less.
13. Regarding working and career: I can't work and I am on social security disability.
14. People would be surprised to know: I am still me with the same hopes and dreams
15. The hardest thing to accept about my new reality has been: the pain and inability to do the things I used to take for granted.
16. Something I never thought I could do with my illness that I did was: take a long plane trip and not be in bed for a week!
17. The commercials about my illness: Fibromyalgia is getting air time but the ME is not.
18. Something I really miss doing since I was diagnosed is: Gardening and working about the house and yard!
19. It was really hard to have to give up: my job as an RN. I created a new one as an artist! It is really fun too!
20. A new hobby I have taken up since my diagnosis is: painting
21. If I could have one day of feeling normal again I would? I don't think I would know what to do anymore cause I have scaled my life back to meet the illness demands.
22. My illness has taught me: to conserve energy and take medications as I need them and to not worry about addiction to Ibuprofen!
23. Want to know a secret? One thing people say that gets under my skin is: you don't look sick...what is sick suppose to look like? Or you will feel better if you start going to sleep at night! I would love to!
24. But I love it when people: wow you are looking good? Lost some weight?
25. My favorite motto, scripture, quote that gets me through tough times is: Women are like teabags. We don't know our true strength until we are in hot water!
Eleanor Roosevelt
26. When someone is diagnosed I’d like to tell them: learn your limits and stay within them it makes life so much easier. Don't keep trying to be who you used to be cause you never will be that person again. Adapt!
27. Something that has surprised me about living with an illness is: that you can adapt and loved ones help you with it. I don't know where I would be without the support of my daughter and husband! Probably in a nursing home!
28. The nicest thing someone did for me when I wasn’t feeling well was: come sit with me and talk about the world, watch a movie, just be there for me.
29. I’m involved with Invisible Illness Week because: Maybe I can learn something new or teach someone else that has an invisible illness to cope a little better!
30. The fact that you read this list makes me feel: happy. Maybe I reached just one and spread the word.
Wednesday, January 25, 2012
Pediatric CFS/ME
Just read an article about Pediatric CFS/ME! I am really having a hard time with the concept that a child can come down with this crap. I know what I am dealing with but to think of a small person having it makes my heart cry. How do you tell them they will never be able to run, play, and be a normal child ever again?
Tuesday, January 24, 2012
Apologies
I meant to update this blog more frequently but I seem to be failing on that aspect right now! I won't promise to blog more often but...lets take it one day at a time so to speak.
I am not feeling really hot right now! I don't know why or what the cause is but I feel like I have been run over by a Mac truck. Probably all about this damn disorder/syndrome/or whatever you want to call it but my head is foggy and I can't seem to concentrate or remember well today. I fell again getting out of bed so I need to remember to do the exercises to get my muscles ready to hold my body and speaking of body!! My body hurts ALL over today and it feels like I have a bad case of the flu. I can't seem to stay normal temp either because I am either hot or cold. Not that the temp issue is anything new cause that has been going on for years. I lack any umph! I hurt too bad when I lay down, I hurt when I sit up and getting up or down is an issue. I am tempted to take a pill and go to bed and just stay there.
Has anyone been following the discussion on Research 1st regarding ME vs CFS? I have to agree that CFS has bad connotations now cause there isn't a definitive diagnosis that goes with it. It sounds better when you say myalgic encephalomyelitis instead of chronic fatigue syndrome! A friend told me that CFS sounds like someone is just lazy rather then having a real disease like the -itis gives to ME! I hadn't thought of it that way but it does sound more legitimate doesn't it.
Has anyone read the Research 1st analysis of the criteria to be diagnosed with CFS/ME?
International Consensus Criteria Published for Myalgic Encephalomyelitis K. Kimberly McCleary, President and CEO of Research 1st talks about the recent publication of criteria defining CFS/ME. This is a graph of the new criteria overview that was presented in the article and is to be used for diagnosis of the disorder.
Go check it out! The original article titled Myalgic encephalomyelitis: International Concensus Criteria was published in Journal of Internal Medicine
Volume 270, Issue 4, pages 327–338, October 2011 and is available at the link for anyone to read. It wasn't hard to understand and cleared up a few issues for me.
I am not feeling really hot right now! I don't know why or what the cause is but I feel like I have been run over by a Mac truck. Probably all about this damn disorder/syndrome/or whatever you want to call it but my head is foggy and I can't seem to concentrate or remember well today. I fell again getting out of bed so I need to remember to do the exercises to get my muscles ready to hold my body and speaking of body!! My body hurts ALL over today and it feels like I have a bad case of the flu. I can't seem to stay normal temp either because I am either hot or cold. Not that the temp issue is anything new cause that has been going on for years. I lack any umph! I hurt too bad when I lay down, I hurt when I sit up and getting up or down is an issue. I am tempted to take a pill and go to bed and just stay there.
Has anyone been following the discussion on Research 1st regarding ME vs CFS? I have to agree that CFS has bad connotations now cause there isn't a definitive diagnosis that goes with it. It sounds better when you say myalgic encephalomyelitis instead of chronic fatigue syndrome! A friend told me that CFS sounds like someone is just lazy rather then having a real disease like the -itis gives to ME! I hadn't thought of it that way but it does sound more legitimate doesn't it.
Has anyone read the Research 1st analysis of the criteria to be diagnosed with CFS/ME?
International Consensus Criteria Published for Myalgic Encephalomyelitis K. Kimberly McCleary, President and CEO of Research 1st talks about the recent publication of criteria defining CFS/ME. This is a graph of the new criteria overview that was presented in the article and is to be used for diagnosis of the disorder.
Go check it out! The original article titled Myalgic encephalomyelitis: International Concensus Criteria was published in Journal of Internal Medicine
Volume 270, Issue 4, pages 327–338, October 2011 and is available at the link for anyone to read. It wasn't hard to understand and cleared up a few issues for me.
Sunday, December 18, 2011
Christmas!
Well last year I was so depressed that I played Scrooge and didn't do any decorating or buy a single Christmas gift. I didn't have money because of no job or money coming in and I just didn't feel like getting out and fighting the crowds.
This year I am still broke but I have made some psychological changes in my life. I still hurt all the time but I am learning to manage it. Yesterday I over did it quite a bit because I worked diligently most of the day putting lights on a bush in the front yard and putting out the air Snowman and tree in the front yard. I also spray painted 3 graduating sized grapevine wreathes to make Snowman hanging for the front door. I think it will be cute when I get it done...and relatively inexpensive. I used to be able to do so much more then spending a day on so little but I was happy with what I accomplished yesterday. It is all in the perspective isn't it!
I also am giving some Christmas gifts this year but they are gifts that I made with my own two hands. The grand babies are getting store bought toys but my children and their spouses will be getting a home made gift and a little check because I STILL can't handle shopping or being out in crowds. I become very agitated and my body starts to ache and hurt all over then I get headaches and my muscles stiffen up and I am done for the day...Not worth it for me. If anyone has a complaint then I guess next year I will go back to nothing for Christmas except a lump of coal that I can order online!
I love the holidays...always have. I love the memories of my childhood, the memories of what we did with our children. I hear from my children now that it wasn't the toys and gifts that they remember now but the times we made cookies and sang Christmas songs and did things as a family.
I am not stressing about Christmas cause I want to enjoy the holiday and conserving myself is the way to make it happen. I am glad in someways that this disorder has forced me to review my priorities and make what is really important the most important thing in the holiday...My family!
Hope everyone reading this post has a very Happy Holiday and/or a very Merry Christmas!
This year I am still broke but I have made some psychological changes in my life. I still hurt all the time but I am learning to manage it. Yesterday I over did it quite a bit because I worked diligently most of the day putting lights on a bush in the front yard and putting out the air Snowman and tree in the front yard. I also spray painted 3 graduating sized grapevine wreathes to make Snowman hanging for the front door. I think it will be cute when I get it done...and relatively inexpensive. I used to be able to do so much more then spending a day on so little but I was happy with what I accomplished yesterday. It is all in the perspective isn't it!
I also am giving some Christmas gifts this year but they are gifts that I made with my own two hands. The grand babies are getting store bought toys but my children and their spouses will be getting a home made gift and a little check because I STILL can't handle shopping or being out in crowds. I become very agitated and my body starts to ache and hurt all over then I get headaches and my muscles stiffen up and I am done for the day...Not worth it for me. If anyone has a complaint then I guess next year I will go back to nothing for Christmas except a lump of coal that I can order online!
I love the holidays...always have. I love the memories of my childhood, the memories of what we did with our children. I hear from my children now that it wasn't the toys and gifts that they remember now but the times we made cookies and sang Christmas songs and did things as a family.
I am not stressing about Christmas cause I want to enjoy the holiday and conserving myself is the way to make it happen. I am glad in someways that this disorder has forced me to review my priorities and make what is really important the most important thing in the holiday...My family!
Hope everyone reading this post has a very Happy Holiday and/or a very Merry Christmas!
Wednesday, December 14, 2011
Interesting read!
I received an email today from Blain Skrainka at Everyday Health asking me to share this link. I read the article and was surprised to read that these are strange and unusual symptoms of FM. I have them all. How about you are you blessed with these symptoms?
1. sensitivity to touch-there are days I can't stand anyone/thing to touch me and I constantly fight tight clothes, underwear, and shoes now days.
2. stimulation overload to smells, light, noise-one of the best things the doctor did was to start me on Requip of my leg spasms cause it also helped tone down my reaction to perfumes and light sensitivity.
3. fibrofog
4. tingling or numbness-legs, hands, feet, arms, random spots on my body!!
5. lipomas-got a big one on my r arm and another on my abdomen...
6. sweating-doctor started me back on estrogen cause we thought it was due to hormones but at 60 I don't really think so especially since it didn't stop the night sweats! Sometimes I flush for no reason too and I think that is caused by the same issue.
Click the link and read the article. Interesting read!!
Hi
Fibromyalgia affects millions of Americans, from pain and exhaustion to other lesser-known symptoms. Everyday Health encourages you to share this content piece with your readers. If you are able to make a post or provide a link to your readers, we would love to give you a Twitter Follow Friday shout out!
6 Strange Signs of Fibromyalgia
http://www.everydayhealth.com/fibromyalgia/strange-signs-of-fibromyalgia.aspx
Happy Holidays,
Blaine
Blaine Skrainka
Outreach Director
Everyday Health
blaine@everydayhealth.com
345 Hudson Street, 16th Floor
New York, New York 10014
1. sensitivity to touch-there are days I can't stand anyone/thing to touch me and I constantly fight tight clothes, underwear, and shoes now days.
2. stimulation overload to smells, light, noise-one of the best things the doctor did was to start me on Requip of my leg spasms cause it also helped tone down my reaction to perfumes and light sensitivity.
3. fibrofog
4. tingling or numbness-legs, hands, feet, arms, random spots on my body!!
5. lipomas-got a big one on my r arm and another on my abdomen...
6. sweating-doctor started me back on estrogen cause we thought it was due to hormones but at 60 I don't really think so especially since it didn't stop the night sweats! Sometimes I flush for no reason too and I think that is caused by the same issue.
Click the link and read the article. Interesting read!!
Hi
Fibromyalgia affects millions of Americans, from pain and exhaustion to other lesser-known symptoms. Everyday Health encourages you to share this content piece with your readers. If you are able to make a post or provide a link to your readers, we would love to give you a Twitter Follow Friday shout out!
6 Strange Signs of Fibromyalgia
http://www.everydayhealth.com/fibromyalgia/strange-signs-of-fibromyalgia.aspx
Happy Holidays,
Blaine
Blaine Skrainka
Outreach Director
Everyday Health
blaine@everydayhealth.com
345 Hudson Street, 16th Floor
New York, New York 10014
Don't believe everything you hear!! I am not dead!
JUST A JOKE!
I just haven't blogged in a long time because:
1. I took a couple of trips
1. to see my new granddaughter when she was born and 2. to Spain to sit in the sun and relax and chill out. With the onset of this cold weather I am wishing I was back in Spain in a major way!
I think I just got out of the habit of blogging!
Let me tell you about my travels with the Fibromyalgia and the ME/CFS. It wasn't bad!!
I was really anxious about both trips. The trip to Virginia Beach, Virginia is a 1400 mile, two day trip that frightened me more then the 12 hour flight to Spain. It wasn't bad because I really prepared myself both mentally and physically for the trips.
I made sure I got up and moved around and if the sitting was an issue I stopped and got out of the car and walked around or on the plane made a circuit of the seats. I drank a lot of water and kept hydrated. When I was tired I just stopped and slept. In the car, on the plane, in the hotels etc. I don't like pain pills cause I already have fibrofog and they just exacerbate the issue but these trips I made sure I took them at least every 6 hours when needed them for the arthritic and other pains. They don't really work well with the FM or ME/CFS pain but the Savella is contraindicated with a lot of non-narcotic pain meds because of increasing serotonin levels. Not a fun thing to do from what I have read. Another thing I did was take sleeping pills with me! Not a thing that I am happy with but everyone knows that sleep deprivation only exacerbates the disorders so I went prepared. A serendipity...in Spain I found a 4 ounce glass of red wine helped me sleep better then a sleeping pill. I also pushed myself and did a little more walking. I still had problems with the numbness in my toes and cold tingles in my legs but I did fine.
I guess what I am saying I didn't push myself too hard and I embraced the fact that I can't do things like I used to and did what I could. Everyone we were visiting knows I have the disorders and respects the fact that I can't do as I once did and didn't try to push the issue.
Don't give up on things you love to do, and I love to travel, just modify how you do them. There is no way I would take off on my own like I used to do because of the stress I get and the fear of getting lost because of the fibrofog but I can still go and do. Give it a try. I had a blast!
I just haven't blogged in a long time because:
1. I took a couple of trips
1. to see my new granddaughter when she was born and 2. to Spain to sit in the sun and relax and chill out. With the onset of this cold weather I am wishing I was back in Spain in a major way!
I think I just got out of the habit of blogging!
Let me tell you about my travels with the Fibromyalgia and the ME/CFS. It wasn't bad!!
I was really anxious about both trips. The trip to Virginia Beach, Virginia is a 1400 mile, two day trip that frightened me more then the 12 hour flight to Spain. It wasn't bad because I really prepared myself both mentally and physically for the trips.
I made sure I got up and moved around and if the sitting was an issue I stopped and got out of the car and walked around or on the plane made a circuit of the seats. I drank a lot of water and kept hydrated. When I was tired I just stopped and slept. In the car, on the plane, in the hotels etc. I don't like pain pills cause I already have fibrofog and they just exacerbate the issue but these trips I made sure I took them at least every 6 hours when needed them for the arthritic and other pains. They don't really work well with the FM or ME/CFS pain but the Savella is contraindicated with a lot of non-narcotic pain meds because of increasing serotonin levels. Not a fun thing to do from what I have read. Another thing I did was take sleeping pills with me! Not a thing that I am happy with but everyone knows that sleep deprivation only exacerbates the disorders so I went prepared. A serendipity...in Spain I found a 4 ounce glass of red wine helped me sleep better then a sleeping pill. I also pushed myself and did a little more walking. I still had problems with the numbness in my toes and cold tingles in my legs but I did fine.
I guess what I am saying I didn't push myself too hard and I embraced the fact that I can't do things like I used to and did what I could. Everyone we were visiting knows I have the disorders and respects the fact that I can't do as I once did and didn't try to push the issue.
Don't give up on things you love to do, and I love to travel, just modify how you do them. There is no way I would take off on my own like I used to do because of the stress I get and the fear of getting lost because of the fibrofog but I can still go and do. Give it a try. I had a blast!
Monday, September 5, 2011
NPR broadcast
I just read/listened to a couple of broadcasts on NPR regarding CFS/ME. I used to believe it was a make believe disorder too until I was diagnosed with the disorder along with the FM. There is a link to the broadcast or you can read the transcript of both programs. The first program broadcast was http://www.npr.org/blogs/health/2011/09/05/140150429/cracking-the-conundrum-of-chronic-fatigue-syndrome The second program is http://www.npr.org/2011/09/05/140191111/medical-mystery-of-chronic-fatigue-syndrome-returns
I am at my son Chad's house right now for the birth of our second granddaughter, Hannah. It has been a big fear of mine regarding travel and how it will affect me with the disorders. I have been pushing myself and I am feeling really tired and having some pain but I am glad that I gave it a try! Not at all as bad as I thought it would be but still very tiring!
I think, as one of the NPR broadcasts say, you have to push yourself a little otherwise you end up 'deconditioning yourself or as I say 'invalid-izing' yourself. I think the more you think about how you hurt and can't do this or that the more your body gets to thinking that way too! Check out these programs...they are short but interesting.
I am at my son Chad's house right now for the birth of our second granddaughter, Hannah. It has been a big fear of mine regarding travel and how it will affect me with the disorders. I have been pushing myself and I am feeling really tired and having some pain but I am glad that I gave it a try! Not at all as bad as I thought it would be but still very tiring!
I think, as one of the NPR broadcasts say, you have to push yourself a little otherwise you end up 'deconditioning yourself or as I say 'invalid-izing' yourself. I think the more you think about how you hurt and can't do this or that the more your body gets to thinking that way too! Check out these programs...they are short but interesting.
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