Wait a minute! I thought that was a given with this disorder...I thought since we were always tired that everyone should know that and let us go home and go to bed!...what? I am suppose to have a social life and interact...
I went out with my daughter yesterday to an event called An Affair of the Heart in Oklahoma City at the fair grounds. The Affair of the Heart was started in 1985 as a one building one day show to a 7 building 3 day show in Oklahoma City and they are now having it in Tulsa twice a year. The show used to be all about crafting and art stuff that was handmade and the products to create crafts/art but over the years has changed. I wanted to go this year cause I haven't been able to go the past few years and I felt good...what did I say?...so we decided to go. The show was horrible. Mostly made in China style junk home decor and clothing items. Nothing like what it was years ago. I did really well but unfortunately, over did it and I have been hurting a lot today and went out and over did again!
I just got home and it is 1:30 in the morning. I went to a Valentines Day crop at my local scrapbook store and had a blast. I slept in till 2pm cause I knew that it would be a long day and I should have turned down the invitation to go to IHOP after the crop but friends were going that I hadn't seen in a while and a cup of coffee sounded so good... Tomorrow will be payback time. I know if I go to bed now I won't sleep cause my legs and head hurt so I am waiting for my Ibuprofen and Lortab to kick in so I will be able to be half way comfortable.
Tomorrow? I am expected to be at a Valentines Party at 1pm tomorrow/today so I better get to bed so I can be up at a decent hour. I know better then to push myself like this but I tell myself I deserve a halfway normal life but...One day at a time. Who knows come Monday I will be okay and not have a bad day. I keep pushing myself and testing the limits when I know that most likely it will just be a repeat of the last time when I thought I was normal...
Normal? Not me! I never have been so why do I think I should be special now? More tomorrow!
Sunday, February 12, 2012
Saturday, February 4, 2012
Interesting day!
It has been "one of those days for me" today! I was up and down and in and out of bed all day! I couldn't get comfortable sitting,lying,standing etc...boo hoo poor me! I hate these days and there isn't a damn thing I can do about them cause I have..fibromyalgia(FM) and myalgic enchephalomyelis(ME) or chronic fatigue(CFS) to some. Did you see me whisper that...
Sounds like another 12 step program ie, AA, OA, GA...stand up say it...I know you can do it...say it!!! "Hi my name is _________ and I am sick. I have Fibromyalgia and ME/CFS amongst other disorders!" Just like those diseases FM and CFS/ME are invisible illnesses that we live with day to day that no one can see but us. If you have the disease you can pick it out in others at a glance. Wonder why that is...do we look different to another person who has FM, CFS/ME? I don't know about you but I hurt all the time and narcotics don't do me any good most of the time. I test myself when I am unsure whether my pain is from one of the above or from my osteoarthritis...yeah I got that to...then I take a pain pill and if it works then I tell myself it is just cause I am getting old and nothing to worry about! I think that is what I sense in others I meet is the pain that is etched in their faces. The tired look that says they aren't sleeping well either!
I have been so depressed the past year and half that I had trouble just getting through the day most days without breaking down and crying on a daily basis. I had changed so much from the person I was 10 years ago that I didn't recognize myself on good days. I lacked any interest to do anything around the house, with friends, or family. I hurt most days going and doing something fun took too much energy and I just didn't have it to give. The tiredness that comes with ME/CFS is debilitating. I have never ever felt this tired in my life. Along with the tiredness comes a host of other issues that go with it.
What have I done that made a difference in my life? Well first off like in a 12 step program I learned I had to be truthful to myself and quit denying what was so obvious. I was sick. I don't look sick but I am! I learned to live within the limits that I have and not to push them cause it means days to recover sometimes. I used to stay so busy and active but now I have learned to schedule what I do and when so I don't get worn out cause I don't have any reserves to call on anymore. I am busy and active in my way now! I got over the pride thing too and I ask for help now when I can't do it myself. That took the longest cause I wouldn't ask and people aren't mind readers. I always have been a strong person and asking for help doesn't come easy. Being a burden and beholden to others doesn't set well with me.
I think if I could pass on any words of wisdom it would be just these..."one day at a time" Just take it one day at a time. I have good days and I have bad days and if it is bad today I know tomorrow might be better.
Sounds like another 12 step program ie, AA, OA, GA...stand up say it...I know you can do it...say it!!! "Hi my name is _________ and I am sick. I have Fibromyalgia and ME/CFS amongst other disorders!" Just like those diseases FM and CFS/ME are invisible illnesses that we live with day to day that no one can see but us. If you have the disease you can pick it out in others at a glance. Wonder why that is...do we look different to another person who has FM, CFS/ME? I don't know about you but I hurt all the time and narcotics don't do me any good most of the time. I test myself when I am unsure whether my pain is from one of the above or from my osteoarthritis...yeah I got that to...then I take a pain pill and if it works then I tell myself it is just cause I am getting old and nothing to worry about! I think that is what I sense in others I meet is the pain that is etched in their faces. The tired look that says they aren't sleeping well either!
I have been so depressed the past year and half that I had trouble just getting through the day most days without breaking down and crying on a daily basis. I had changed so much from the person I was 10 years ago that I didn't recognize myself on good days. I lacked any interest to do anything around the house, with friends, or family. I hurt most days going and doing something fun took too much energy and I just didn't have it to give. The tiredness that comes with ME/CFS is debilitating. I have never ever felt this tired in my life. Along with the tiredness comes a host of other issues that go with it.
What have I done that made a difference in my life? Well first off like in a 12 step program I learned I had to be truthful to myself and quit denying what was so obvious. I was sick. I don't look sick but I am! I learned to live within the limits that I have and not to push them cause it means days to recover sometimes. I used to stay so busy and active but now I have learned to schedule what I do and when so I don't get worn out cause I don't have any reserves to call on anymore. I am busy and active in my way now! I got over the pride thing too and I ask for help now when I can't do it myself. That took the longest cause I wouldn't ask and people aren't mind readers. I always have been a strong person and asking for help doesn't come easy. Being a burden and beholden to others doesn't set well with me.
I think if I could pass on any words of wisdom it would be just these..."one day at a time" Just take it one day at a time. I have good days and I have bad days and if it is bad today I know tomorrow might be better.
Wednesday, January 25, 2012
30 Questions about My Silent Illness
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.
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.
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
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