Dominique, over at her website, Becoming Visible 4 ME, has posted my CFS/ME story for this month. (M.E. being Myalgic Encephalomyelitis which is another, more appropriate name for Chronic Fatigue Syndrome).
Her website is dedicated to making ME more visible. Each month, she publishes a CFS/ME story in order to accomplish this. From her other site, 4 Walls and a View, she writes:
"We are now onto our fifth story of this year. I find it amazing as I read each new story, how vastly different they are … and yet … how similar they are. Linda’s story, for me personally, was quite riveting. I was completely taken in the very first time I read it. Here is a excerpt of her unique and captivating story: As I stopped to look around, a “sensation” shot up the left side of my neck, then"...
Click here to read my full story at Becoming Visible 4 Me Once at the site, my story is featured in June, 2011. (There is a new story posted each month) By clicking on my picture, it will bring up the full story.
Dominique, who also has ME, has been a great inspiration, support and help to me in my battle with CFS and Fibromyalgia.
I've posted these videos from Get Well From ME before, but he explains ME/CFS so well, they bear repeating. Over the course of these two videos, he touches on all aspects of this illness.
He goes into more detail in this one:
Showing posts with label Health. Show all posts
Showing posts with label Health. Show all posts
Saturday, June 11, 2011
Saturday, May 7, 2011
How cool is that?
Larry's job requires him to be on-call, five days a week. With never knowing from one day to the next if he'll be working or not and then needing to be able to go at a split second notice, it makes planning/committing to anything else very difficult.
With his evening job, he must travel from place to place for one hour sessions.
Both of these jobs together require a vehicle be available to him every day, from morning to night and at a moment's notice. Add into that Tyler's job which requires at least an hour of daily travel time...well....it makes things really complicated (especially for the rest of us who also require transportation to get to various things.) It's a constant juggling and rearranging of schedules (most times at the last minute as Larry is rushing out the door to his last minute call). Day after day it becomes quite exhausting.
Many things we simply aren't able to take part in, but a few things are just so important we simply can't miss. One such thing is appointments with my homeopath. She has helped me so much and I find keeping regular appointments the key to continued success. However .... with the good chance I'll have no way to get there come the day, I've not been able to make an appointment.
I'm already a month past when I should have gone to see her. Trying to figure out a plan has been causing a lot of stress for me. Knowing it will be July before I can commit to anything, I emailed her to ask if we could set up a phone consultation. She did this for me once before when I was in too much pain to make it into her office, so I was hoping she'd be ok with this set up again. Much to my pleasant surprise, she emailed back right away to say she's quite often in my neck of the woods and would be glad to see me in my home if that would work ok for me!!!
Wow...a house call.....how cool is that?
With his evening job, he must travel from place to place for one hour sessions.
Both of these jobs together require a vehicle be available to him every day, from morning to night and at a moment's notice. Add into that Tyler's job which requires at least an hour of daily travel time...well....it makes things really complicated (especially for the rest of us who also require transportation to get to various things.) It's a constant juggling and rearranging of schedules (most times at the last minute as Larry is rushing out the door to his last minute call). Day after day it becomes quite exhausting.
Many things we simply aren't able to take part in, but a few things are just so important we simply can't miss. One such thing is appointments with my homeopath. She has helped me so much and I find keeping regular appointments the key to continued success. However .... with the good chance I'll have no way to get there come the day, I've not been able to make an appointment.
I'm already a month past when I should have gone to see her. Trying to figure out a plan has been causing a lot of stress for me. Knowing it will be July before I can commit to anything, I emailed her to ask if we could set up a phone consultation. She did this for me once before when I was in too much pain to make it into her office, so I was hoping she'd be ok with this set up again. Much to my pleasant surprise, she emailed back right away to say she's quite often in my neck of the woods and would be glad to see me in my home if that would work ok for me!!!
Wow...a house call.....how cool is that?
Saturday, April 2, 2011
Excellent explanation of M.E. (CFS)
The guy in these videos is doing a series on ME (CFS). All of them are excellent, but this first one posted below (it's #2 in the series) gives a great description/introduction/overview of the illness for those unfamiliar with it. He covers all the points of ME/CFS and, as you can see...it's sooo much more than just 'fatigue'. These are just the tip of the iceberg though and in the second video, he gets into more details. (Thanks, Dominique for pointing these out)
All things with this illness are frustrating....beginning with the name and the way it is diagnosed. One must experience the severe symptoms for a minimum of six months! Imagine with any other illness having the Dr. say,
"You have a lump? Oh well....come back in six months and if it's still there, we'll take a look at it."
or.....
"You're having pains in your chest? Well, give it six months and if they're still happening, we'll check it out."
or....
"Seizures? Are you sure? Maybe you need to get out more. Come back and six months and we'll take a look at it."
As with any illness, quicker diagnosis allows for better treatment and better chances of recovery. Why should this one be any different? Waiting six months is just nonsense. I certainly knew during my first six months that something was wrong. I now know, during those six months I did things which worsened my condition. At the end of six months, I felt worse (just as anyone with any illness left untreated for six months would).
At any rate...here's more info about ME (CFS).....
He goes into more detail in this one.
I'm looking forward to the rest of them, hopefully he'll reveal what worked so effectively for him and his treatment.
All things with this illness are frustrating....beginning with the name and the way it is diagnosed. One must experience the severe symptoms for a minimum of six months! Imagine with any other illness having the Dr. say,
"You have a lump? Oh well....come back in six months and if it's still there, we'll take a look at it."
or.....
"You're having pains in your chest? Well, give it six months and if they're still happening, we'll check it out."
or....
"Seizures? Are you sure? Maybe you need to get out more. Come back and six months and we'll take a look at it."
As with any illness, quicker diagnosis allows for better treatment and better chances of recovery. Why should this one be any different? Waiting six months is just nonsense. I certainly knew during my first six months that something was wrong. I now know, during those six months I did things which worsened my condition. At the end of six months, I felt worse (just as anyone with any illness left untreated for six months would).
At any rate...here's more info about ME (CFS).....
He goes into more detail in this one.
I'm looking forward to the rest of them, hopefully he'll reveal what worked so effectively for him and his treatment.
Friday, December 3, 2010
Chronic Fatigue Syndrome - ELLE
Laura Hillenbrand, Well known author of Seabiscuit also suffers from Chronic Fatigue Syndrome.
Excellent article about her struggles with this, found here:
Chronic Fatigue Syndrome - ELLE
Excellent article about her struggles with this, found here:
Chronic Fatigue Syndrome - ELLE
Wednesday, November 24, 2010
On the Chronic Fatigue Syndrome front ....
Frustration....unpredictability....more frustration
A recent Drs. visit revealed I'm not doing as well with this illness as I had thought (or was that I had hoped?). That was followed by some strict warnings to change my ways, or else.
Sigh.....
One thing that frustrates me the most with CFS is the unpredictability of it all....and it's unpredictable on so many fronts. (I know many CFS sufferers struggle with this unpredictability part of the illness as well. Dominique over at 4 Walls and a View wrote a wonderful post on this very topic)
Things like the unpredictability of:
--not knowing how much energy will I have today, tomorrow, next week or even in the next hour (and it can vary that much from hour to hour)
--not knowing when a crash is going to happen.
--not knowing what exactly causes a crash
--not knowing how long a crash will last.
Now, I'm not talking about huge amounts of energy requirements...I'm talking about energy levels for daily tasks that most people take for granted. Things like grocery shopping, or vacuuming, standing, or lineups. I've just recently started going into grocery stores and helping Larry with groceries...but when it comes time to check out....it's out to the van for me.
Most days big stores like Costco are out.
Or walking. The kids are taking swimming lessons...I'd love to walk to the end of the pool to watch them...but each week so far, I've been unsure if I'd actually make it to the end and back again.
One day, I'm able to do most things (like going out) while the next, moving around the house is a challenge. Not being able to plan for these days, makes it even more frustrating.
This was the case with my last major crash. It was last January and I had been steadily improving health-wise. The kids had skating and the arena was equipped with a wonderful indoor track up over the rink area. I thought what a great idea...I could walk around the track and keep an eye on the kids at the same time. On that fateful day I walked into the arena feeling better than I had in a long time (at least a year) and yet left the arena barely able to walk or drive home. When I got home, I literally collapsed into bed and barely woke up for two or three days. That was the start of a crash which lasted six weeks...and a long six weeks it was. The phone did not ring, the only people I saw or talked to was Larry and the kids, and I hardly got out of the house (except two or three rides into town but I did not get out of the car once in town). Most of that time was spent in bed. The household chores fell on Larry and/or the kids. Suppers became frozen chicken fingers and fries...or other similar easy fare that Brittney could do. Each night I went to bed hoping the next day I would wake feeling feeling better. Thankfully, Tyler could drive. He was able to take the kids to piano lessons and skating.
While this not knowing is frustrating for me, it is even more frustrating to adequately explain it to people. They see me out and think I must be better....except they didn't see me two days ago when I couldn't get out of bed and they won't see me if I happen to be that way tomorrow. They don't realize, I may have been 'saving up' my energy for the last day or so in order to be out for that particular day and they don't realize after my afternoon out, I will head home where I will need to rest for the remainder of the day. I don't go out when I'm at my worst (partially because I'm not able, but partially because who wants to be around someone who can barely remember their own name, let alone carry a conversation...brain fog is something else with all of this). Sometimes, I think I should take pictures of myself when I am at my worst or better yet...actually go out! (That would surely raise some eyebrows) Then I try to remember they aren't being intentionally mean...they simply don't understand the disease. The education is just not there and there are so many false ideas of what CFS is or isn't ... or what a person should be like/do/not do when they have it. (This type of thinking/questioning is as frustrating for me as the question homeschoolers often hear...."What about socialization?"....argh...)
I have found if I can sit down while doing things, I am able to last longer (not as long as I once could...but enough to do what needs doing). Things like making supper, folding clothes or doing chocolate are still doable. So, as long as I am not crashed....not all is lost....as long as I remember to pace myself in order to not end up crashed. Once I'm crashed though...it's anybody's guess how long it will last (another factor of CFS).
I recently watched an episode of The Golden Girls in which Dorothy had CFS. While I watched the shows, it was great to see it portrayed so well. Everything she experienced, right from the treatment of some Drs., to the reactions of people were so bang on. It was great to see something where someone actually 'gets it'. I was nodding my head so much throughout. Then....it occurred to me. Wow....those shows are over 20 years old. We haven't made very much progress in 20 years. Shocking that is. Many people 'in the know' (CFS researchers, CFS Drs., etc) feel a breakthrough in the treatment or cure of this illness is on the horizon. Let's hope....because it's about time! A really good place to start would be renaming the disease with a name that more accurately fits the illness. That shouldn't be difficult....almost anything would be a better fit than "Chronic Fatigue Syndrome!"
A recent Drs. visit revealed I'm not doing as well with this illness as I had thought (or was that I had hoped?). That was followed by some strict warnings to change my ways, or else.
Sigh.....
One thing that frustrates me the most with CFS is the unpredictability of it all....and it's unpredictable on so many fronts. (I know many CFS sufferers struggle with this unpredictability part of the illness as well. Dominique over at 4 Walls and a View wrote a wonderful post on this very topic)
Things like the unpredictability of:
--not knowing how much energy will I have today, tomorrow, next week or even in the next hour (and it can vary that much from hour to hour)
--not knowing when a crash is going to happen.
--not knowing what exactly causes a crash
--not knowing how long a crash will last.
Now, I'm not talking about huge amounts of energy requirements...I'm talking about energy levels for daily tasks that most people take for granted. Things like grocery shopping, or vacuuming, standing, or lineups. I've just recently started going into grocery stores and helping Larry with groceries...but when it comes time to check out....it's out to the van for me.
Most days big stores like Costco are out.
Or walking. The kids are taking swimming lessons...I'd love to walk to the end of the pool to watch them...but each week so far, I've been unsure if I'd actually make it to the end and back again.
One day, I'm able to do most things (like going out) while the next, moving around the house is a challenge. Not being able to plan for these days, makes it even more frustrating.
This was the case with my last major crash. It was last January and I had been steadily improving health-wise. The kids had skating and the arena was equipped with a wonderful indoor track up over the rink area. I thought what a great idea...I could walk around the track and keep an eye on the kids at the same time. On that fateful day I walked into the arena feeling better than I had in a long time (at least a year) and yet left the arena barely able to walk or drive home. When I got home, I literally collapsed into bed and barely woke up for two or three days. That was the start of a crash which lasted six weeks...and a long six weeks it was. The phone did not ring, the only people I saw or talked to was Larry and the kids, and I hardly got out of the house (except two or three rides into town but I did not get out of the car once in town). Most of that time was spent in bed. The household chores fell on Larry and/or the kids. Suppers became frozen chicken fingers and fries...or other similar easy fare that Brittney could do. Each night I went to bed hoping the next day I would wake feeling feeling better. Thankfully, Tyler could drive. He was able to take the kids to piano lessons and skating.
While this not knowing is frustrating for me, it is even more frustrating to adequately explain it to people. They see me out and think I must be better....except they didn't see me two days ago when I couldn't get out of bed and they won't see me if I happen to be that way tomorrow. They don't realize, I may have been 'saving up' my energy for the last day or so in order to be out for that particular day and they don't realize after my afternoon out, I will head home where I will need to rest for the remainder of the day. I don't go out when I'm at my worst (partially because I'm not able, but partially because who wants to be around someone who can barely remember their own name, let alone carry a conversation...brain fog is something else with all of this). Sometimes, I think I should take pictures of myself when I am at my worst or better yet...actually go out! (That would surely raise some eyebrows) Then I try to remember they aren't being intentionally mean...they simply don't understand the disease. The education is just not there and there are so many false ideas of what CFS is or isn't ... or what a person should be like/do/not do when they have it. (This type of thinking/questioning is as frustrating for me as the question homeschoolers often hear...."What about socialization?"....argh...)
I have found if I can sit down while doing things, I am able to last longer (not as long as I once could...but enough to do what needs doing). Things like making supper, folding clothes or doing chocolate are still doable. So, as long as I am not crashed....not all is lost....as long as I remember to pace myself in order to not end up crashed. Once I'm crashed though...it's anybody's guess how long it will last (another factor of CFS).
I recently watched an episode of The Golden Girls in which Dorothy had CFS. While I watched the shows, it was great to see it portrayed so well. Everything she experienced, right from the treatment of some Drs., to the reactions of people were so bang on. It was great to see something where someone actually 'gets it'. I was nodding my head so much throughout. Then....it occurred to me. Wow....those shows are over 20 years old. We haven't made very much progress in 20 years. Shocking that is. Many people 'in the know' (CFS researchers, CFS Drs., etc) feel a breakthrough in the treatment or cure of this illness is on the horizon. Let's hope....because it's about time! A really good place to start would be renaming the disease with a name that more accurately fits the illness. That shouldn't be difficult....almost anything would be a better fit than "Chronic Fatigue Syndrome!"
Tuesday, September 14, 2010
Springdale Craft and Trade Fair
This past weekend we took part in Springdale's annual craft and trade fair. Springdale is about a six hour drive from here...so after working on chocolate for the previous couple of weeks, we (or should I say Larry) loaded up the van and off we went. Tyler was unable to come with us because of job obligations and university courses. I think he was just as glad to stay home alone anyway (but mom still worried about him home alone and driving back and forth to work ;)
It was a great show with a lot of people in attendance. We met a lot of friendly people over the course of the weekend. We're already looking forward to next year!
Jake looked after a big part of our sales. As I've mentioned here before, he absolutely loves doing this and is right in his element while doing so. In addition to this, he also managed to get around the stadium and meet most of the other vendors taking part in the show.
All ready to go.... "Welcome to Candy Box Creations" was his usual opening line..
Here Jake is excited about starting. He's giving his spiel to one of the other vendors before the show opened to the public
Jake learns so many practical, hands-on skills from doing events such as these. We count this as an important part of his homeschooling.
We got talking to (or should I say Jake got talking to) the vendors on each side of us. We were pleasantly surprised to learn the couple on one side are the grandparents of a homeschooler we know (well..know of...she is in the next town). How cool is that?
The booth on the other side of us was occupied by a local college. I've never been able to pin down an answer from them regarding admission of homeschoolers to their college....so when there was a lull in the action, I was able to talk to them about this and homeschooling in general. The rep was very nice to talk with. She mentioned she'd never had that question before...but promised to look into it further for me.
We're very thankful to our friends, Soraya and Fred and their five children. They so graciously opened their home to us and put us up for the four nights we were there. (Ohh...and Soraya is a wonderful cook...and her cheesecakes are TO.DIE.FOR!!)
Soraya, Fred and Jael
Jael (as well as all of their children) made quite the impression on Brittney...
and Jake....
As I mentioned, it was a great show. We enjoyed ourselves very much and are hoping to go back next year. On the CFS and fibro front though, I must admit it caused these two ugly conditions to remind me they are still around. I ended up spending a big chunk of the last day, sleeping out in the van. I did help them take down our booth, but on arrival back at our hosts' house, I could barely stand. I was embarrassed but had no other choice...I had to lay down. I went to bed and spent most of that evening sleeping...and right through the night. For the drive home on Sunday, the fibro pain was quite present. Once home, Larry unloaded the van while I rested. I then slept through the night. Monday brought more of the same. I was in and out of sleep most of the day and barely remember the kids fooling around on the computer beside my bed or them saying goodnight.
Apparently, Larry tried to wake me around ten and then again around midnight...but was unable to. (I don't recall any of this either) He eventually gave up and threw a cover over me, where I slept soundly until the alarm went off at 6:00 a.m. I was still fully dressed. More of the same today (and at times like this, I'm grateful for my adjustable bed, laptop and ocean to look at ;))
I'm thinking from now on, I may leave the selling part to the 'experts' and I'll stick to the making part.
It was a great show with a lot of people in attendance. We met a lot of friendly people over the course of the weekend. We're already looking forward to next year!
Jake looked after a big part of our sales. As I've mentioned here before, he absolutely loves doing this and is right in his element while doing so. In addition to this, he also managed to get around the stadium and meet most of the other vendors taking part in the show.
All ready to go.... "Welcome to Candy Box Creations" was his usual opening line..
Here Jake is excited about starting. He's giving his spiel to one of the other vendors before the show opened to the public
Jake learns so many practical, hands-on skills from doing events such as these. We count this as an important part of his homeschooling.
We got talking to (or should I say Jake got talking to) the vendors on each side of us. We were pleasantly surprised to learn the couple on one side are the grandparents of a homeschooler we know (well..know of...she is in the next town). How cool is that?
The booth on the other side of us was occupied by a local college. I've never been able to pin down an answer from them regarding admission of homeschoolers to their college....so when there was a lull in the action, I was able to talk to them about this and homeschooling in general. The rep was very nice to talk with. She mentioned she'd never had that question before...but promised to look into it further for me.
We're very thankful to our friends, Soraya and Fred and their five children. They so graciously opened their home to us and put us up for the four nights we were there. (Ohh...and Soraya is a wonderful cook...and her cheesecakes are TO.DIE.FOR!!)
Soraya, Fred and Jael
Jael (as well as all of their children) made quite the impression on Brittney...
and Jake....
As I mentioned, it was a great show. We enjoyed ourselves very much and are hoping to go back next year. On the CFS and fibro front though, I must admit it caused these two ugly conditions to remind me they are still around. I ended up spending a big chunk of the last day, sleeping out in the van. I did help them take down our booth, but on arrival back at our hosts' house, I could barely stand. I was embarrassed but had no other choice...I had to lay down. I went to bed and spent most of that evening sleeping...and right through the night. For the drive home on Sunday, the fibro pain was quite present. Once home, Larry unloaded the van while I rested. I then slept through the night. Monday brought more of the same. I was in and out of sleep most of the day and barely remember the kids fooling around on the computer beside my bed or them saying goodnight.
Apparently, Larry tried to wake me around ten and then again around midnight...but was unable to. (I don't recall any of this either) He eventually gave up and threw a cover over me, where I slept soundly until the alarm went off at 6:00 a.m. I was still fully dressed. More of the same today (and at times like this, I'm grateful for my adjustable bed, laptop and ocean to look at ;))
I'm thinking from now on, I may leave the selling part to the 'experts' and I'll stick to the making part.
Thursday, May 6, 2010
CFS Sufferers...need your help
I am looking for articles and/or websites that best describe/explain Chronic Fatigue Syndrome (because as we all know, the name certainly does not reflect the reality of the illness). Something that lists all of the symptoms (well as many as possible, I know it's impossible to list all of them) and the on going daily struggles this disease causes. I'm looking for articles/websites that are complete and to the point that would be useful to help me explain this to others (because I seem to be failing miserably and seemingly end up leaving people more confused than ever.)
If you could leave a link to your favourite in a comment to me....it would be much appreciated.
Thanks for your help!
If you could leave a link to your favourite in a comment to me....it would be much appreciated.
Thanks for your help!
Sunday, February 14, 2010
Valentine's Party
Thursday, was the Valentine's party with the homeschooling group. Jake was quite excited about this for about a week before it happened (I know...it's hard to imagine Jake excited *grin*). He had his Dad pick up some Valentine's cards and he carefully hand-addressed each one.
It was to be combined with their regular weekly skating session, which was a huge help. Usually, parties/events are held in the other end of town, which makes it almost impossible for us to attend. However, with the arena being only 20 minutes away...and with the fact it was combined with something they already attend each week, this was so convenient. My health issues still had to be worked around though. Our section of the alphabet was to bring sandwiches...which presented a major problem for me. This part is *so* frustrating for me....things I never thought twice about doing in the past are now quite often impossible to accomplish. Like he has done all through this whole thing, Larry stepped up to the plate. I feel guilty about this as he's stuck doing most things I used to be responsible for (housework, dishes, groceries, paying bills...the list goes on), plus working outside of the home earning money, looking after the kids and also the outside work (snow shovelling/yard work etc.). I'm really afraid this is all taking a toll on him and worried it will affect his health too. Then, we really will be in trouble.
He made a list, went to the grocery store and bought the items necessary for the sandwiches. When he returned home, he carefully made them (did a great job too!). He packed them on plates, got the kids organized (skates, hockey sticks, helmets, coats, mits, hats, valentines, container for other valentines), organized himself (he had to head to work from the party so needed his brief case etc.) Thankfully Tyler can drive now...but those details had to be worked out as well. Seeing as Larry had to leave early to go to work, they would be responsible for making sure everything they took....got brought back home (which it did....they've all been a huge help through this as well.)
With lots of confusion happening, they were finally organized enough to leave. I would have liked to have gone...but the party was upstairs (which I can't do yet) and the skating area is at the other end of the arena (which I also can't do). It was quiet here while they were gone. I am really trying to not be bitter, but must admit I'm more than a little disappointed with many people and institutions. It's been a long month and a phone call (or even an email) would have gone a long ways...especially on days the pain was so bad I needed to remain close to my bed. I am thankful though, for all of my you, my blogging pals....your support (messages, comments on here and emails etc.) have meant so much....thanks to all of you! (My Dad has called a couple of times and also my friend Kathie....so I have had three calls lol. Did I mention it's been a long month? lol)
I napped for the afternoon and eventually they returned home. All in all they had a good time.
Hopefully....next event, I will be able to...no...I *will* go with them (this is my goal anyway).
It was to be combined with their regular weekly skating session, which was a huge help. Usually, parties/events are held in the other end of town, which makes it almost impossible for us to attend. However, with the arena being only 20 minutes away...and with the fact it was combined with something they already attend each week, this was so convenient. My health issues still had to be worked around though. Our section of the alphabet was to bring sandwiches...which presented a major problem for me. This part is *so* frustrating for me....things I never thought twice about doing in the past are now quite often impossible to accomplish. Like he has done all through this whole thing, Larry stepped up to the plate. I feel guilty about this as he's stuck doing most things I used to be responsible for (housework, dishes, groceries, paying bills...the list goes on), plus working outside of the home earning money, looking after the kids and also the outside work (snow shovelling/yard work etc.). I'm really afraid this is all taking a toll on him and worried it will affect his health too. Then, we really will be in trouble.
He made a list, went to the grocery store and bought the items necessary for the sandwiches. When he returned home, he carefully made them (did a great job too!). He packed them on plates, got the kids organized (skates, hockey sticks, helmets, coats, mits, hats, valentines, container for other valentines), organized himself (he had to head to work from the party so needed his brief case etc.) Thankfully Tyler can drive now...but those details had to be worked out as well. Seeing as Larry had to leave early to go to work, they would be responsible for making sure everything they took....got brought back home (which it did....they've all been a huge help through this as well.)
With lots of confusion happening, they were finally organized enough to leave. I would have liked to have gone...but the party was upstairs (which I can't do yet) and the skating area is at the other end of the arena (which I also can't do). It was quiet here while they were gone. I am really trying to not be bitter, but must admit I'm more than a little disappointed with many people and institutions. It's been a long month and a phone call (or even an email) would have gone a long ways...especially on days the pain was so bad I needed to remain close to my bed. I am thankful though, for all of my you, my blogging pals....your support (messages, comments on here and emails etc.) have meant so much....thanks to all of you! (My Dad has called a couple of times and also my friend Kathie....so I have had three calls lol. Did I mention it's been a long month? lol)
I napped for the afternoon and eventually they returned home. All in all they had a good time.
Hopefully....next event, I will be able to...no...I *will* go with them (this is my goal anyway).
Saturday, January 23, 2010
Update
Today is day 9 since my last crash and I'm finally doing a bit better.
This one has been one of the worst. I am still upset with myself...this was preventable as I knew better ..... this should not have happened. I've certainly learned my lesson though. CFS is here, probably for good (at least to some extent) and I'll have to deal with that. I've been going against the grain of my personality this past week (which is difficult) and have been resting, resting, resting. Meals have been less than stellar...but food nonetheless. Everyone has, once again, had to chip in and do more. Hopefully, that won't last too much longer.
I've also been looking over my notes, trying to remember what, exactly it was that started me on the road to improvement a year ago. When I was first diagnosed, I researched....and researched a lot. I was able to learn so much helpful and valuable information from those who have the same condition...whether it was what worked for them, what didn't, medical info that just wasn't right, a book recommendation or perhaps an article or website. I'm so thankful to my on-line CFS friends who've been both willing to share their successes and struggles all the while using up their valuable (often limited) supply of energy in order to do so.
I made notes...many of them and am now re learning and remembering things to do. I don't think it was any one thing that started me on the road to feeling better...but a combination of things. I need to hit that combination again (and this time I'm writing it down)
We moved to NL to enjoy and explore this beautiful province....which I still plan on doing. While we have seen some of it....there is still a lot more area to cover. There are pictures to be taken, things to be learned and friends to be made.
Looking forward to fully recovering from this latest crash.
This one has been one of the worst. I am still upset with myself...this was preventable as I knew better ..... this should not have happened. I've certainly learned my lesson though. CFS is here, probably for good (at least to some extent) and I'll have to deal with that. I've been going against the grain of my personality this past week (which is difficult) and have been resting, resting, resting. Meals have been less than stellar...but food nonetheless. Everyone has, once again, had to chip in and do more. Hopefully, that won't last too much longer.
I've also been looking over my notes, trying to remember what, exactly it was that started me on the road to improvement a year ago. When I was first diagnosed, I researched....and researched a lot. I was able to learn so much helpful and valuable information from those who have the same condition...whether it was what worked for them, what didn't, medical info that just wasn't right, a book recommendation or perhaps an article or website. I'm so thankful to my on-line CFS friends who've been both willing to share their successes and struggles all the while using up their valuable (often limited) supply of energy in order to do so.
I made notes...many of them and am now re learning and remembering things to do. I don't think it was any one thing that started me on the road to feeling better...but a combination of things. I need to hit that combination again (and this time I'm writing it down)
We moved to NL to enjoy and explore this beautiful province....which I still plan on doing. While we have seen some of it....there is still a lot more area to cover. There are pictures to be taken, things to be learned and friends to be made.
Looking forward to fully recovering from this latest crash.
Friday, January 15, 2010
Crash Mode Today
Grrr at CFS (Chronic Fatigue Syndrome).
I had been doing so well in my battle with CFS...making great progress. The new year started off with me pledging to take even better control of my health.
Things were going fairly well too...until yesterday that is. One of the winter activities for our homeschooling group is skating and the kids were eager to sign up. Most of the time, our group's activities are too far away for us to participate in....but this time skating was booked at an arena only 20 minutes away. Parents could join in the skate as well, if they wanted to. Even though I used to skate four nights a week....I knew better than to attempt it at this point. I was encouraged though, to learn the arena also had an indoor walking track. It rings the ice surface...up high over looking the ice... Great!...I thought. I can walk without worrying about snow, ice or rain and watch the kids as they skate...all at the same time. Bonus!
I should have known better. Larry and I did three laps...he went on to do another while I sat one out. When he finished, he joined me to see if I was up for some more. I already knew I was in trouble...I could feel it....but as stubborn as I am (get that from my Dad *wink* )....I thought I needed to push it.
Big mistake. I know better (or I should know better) than to think like that. (Pushing it works in a healthy person --- it helps increase one's fitness level...but with CFS, pushing it makes it worse. Our bodies do not produce energy the same way a healthy one does. I know I need to use less energy than I have. I know if I use it all...I will feel worse tomorrow and perhaps even worse the next day. But for whatever reason...I reverted back to traditional thinking. (Maybe it was wishful thinking..hoping I was back to normal and just needed to push it bit?)
We did three more laps.
Even bigger mistake.
As the kids were coming off of the ice, I could feel that all too familiar fatigue settling in. The fatigue is bad enough...but the achy/burning muscles that accompany it is something else. Then the onset of flu like symptoms....I'm sure I could point out where every lymph node in my body is...because they all hurt....I was sore all over.
Dinner was a bit on the pathetic side. I guess it was food at least but I always feel guilty when I'm unable to prepare a healthy meal...especially when this time, it was my own stupidity for ending up like this.
After dinner....I fell into bed in that all too familiar exhaustion. Exhaustion and fatigue are really poor words to describe the feeling of CFS...it's so much worse than that. It feels like my body is starved for what it needs .... like my cells are just not getting enough oxygen.
I did not hear Larry get up at 5:30 (I am a light sleeper and always hear everything). The alarm (radio) is set for 6:00 and it played for 15 minutes before I kind of...sort of heard it ...way off in the distance. It was like I'd been drugged....no matter how hard I tried...I just couldn't seem to wake up. Yep...I felt worse today than I did yesterday.
The whole day has been like that. My body feels like lead. I ache all over. All my muscles hurt. My sides are sore..even the slightest touch causes immense pain. I am swollen...all through my neck, under my arms....all over. The ringing in my ears is almost unbearable. I've slept...a lot...none of it refreshing at all.
I'm so hoping I haven't undone all the progress I've made over the last little while. I should have known better...but I want to be healthy again. I want to be able to take part in activities with my kids...instead of having to watch from the sidelines. I know...it's all about pacing myself. I thought I had that down...but apparently not. Back to the drawing board...but hoping I don't have to start all over from the beginning again.
I had been doing so well in my battle with CFS...making great progress. The new year started off with me pledging to take even better control of my health.
Things were going fairly well too...until yesterday that is. One of the winter activities for our homeschooling group is skating and the kids were eager to sign up. Most of the time, our group's activities are too far away for us to participate in....but this time skating was booked at an arena only 20 minutes away. Parents could join in the skate as well, if they wanted to. Even though I used to skate four nights a week....I knew better than to attempt it at this point. I was encouraged though, to learn the arena also had an indoor walking track. It rings the ice surface...up high over looking the ice... Great!...I thought. I can walk without worrying about snow, ice or rain and watch the kids as they skate...all at the same time. Bonus!
I should have known better. Larry and I did three laps...he went on to do another while I sat one out. When he finished, he joined me to see if I was up for some more. I already knew I was in trouble...I could feel it....but as stubborn as I am (get that from my Dad *wink* )....I thought I needed to push it.
Big mistake. I know better (or I should know better) than to think like that. (Pushing it works in a healthy person --- it helps increase one's fitness level...but with CFS, pushing it makes it worse. Our bodies do not produce energy the same way a healthy one does. I know I need to use less energy than I have. I know if I use it all...I will feel worse tomorrow and perhaps even worse the next day. But for whatever reason...I reverted back to traditional thinking. (Maybe it was wishful thinking..hoping I was back to normal and just needed to push it bit?)
We did three more laps.
Even bigger mistake.
As the kids were coming off of the ice, I could feel that all too familiar fatigue settling in. The fatigue is bad enough...but the achy/burning muscles that accompany it is something else. Then the onset of flu like symptoms....I'm sure I could point out where every lymph node in my body is...because they all hurt....I was sore all over.
Dinner was a bit on the pathetic side. I guess it was food at least but I always feel guilty when I'm unable to prepare a healthy meal...especially when this time, it was my own stupidity for ending up like this.
After dinner....I fell into bed in that all too familiar exhaustion. Exhaustion and fatigue are really poor words to describe the feeling of CFS...it's so much worse than that. It feels like my body is starved for what it needs .... like my cells are just not getting enough oxygen.
I did not hear Larry get up at 5:30 (I am a light sleeper and always hear everything). The alarm (radio) is set for 6:00 and it played for 15 minutes before I kind of...sort of heard it ...way off in the distance. It was like I'd been drugged....no matter how hard I tried...I just couldn't seem to wake up. Yep...I felt worse today than I did yesterday.
The whole day has been like that. My body feels like lead. I ache all over. All my muscles hurt. My sides are sore..even the slightest touch causes immense pain. I am swollen...all through my neck, under my arms....all over. The ringing in my ears is almost unbearable. I've slept...a lot...none of it refreshing at all.
I'm so hoping I haven't undone all the progress I've made over the last little while. I should have known better...but I want to be healthy again. I want to be able to take part in activities with my kids...instead of having to watch from the sidelines. I know...it's all about pacing myself. I thought I had that down...but apparently not. Back to the drawing board...but hoping I don't have to start all over from the beginning again.
Friday, October 9, 2009
Happy Thanksgiving!
It is the Canadian Thanksgiving this weekend. I am not sure of our plans as of yet, but we will either have a turkey dinner here, or perhaps go out for lunch after church on Sunday. We tried to buy a turkey today....but the smallest they had was 30 lbs....quite a bit for 5 people.
I have a lot of difficulty with all of the major holidays....they are a huge family time but our extended families have always had other plans....which leaves us on our own. I find it difficult to get through the day, while all of our friends around us are getting together with their families. It really magnifies the fact we are not. I feel bad for my children too as they will not have the memories of family holidays. When I think back to my childhood Christmases....they were the best....getting together with family, hanging out and just spending the day together. We've spent quite a few years alone now and one would think it would get easier....but I'm finding it gets more difficult each year. This is why I am verbalizing this here....in hopes it will help me better deal with it. Through my homeopath and a friend who is training to become a homeopath....I am learning emotions and feelings *are* very important....they cannot be dismissed and discarded. They must be dealt with and those that are suppressed.....in the end do us a lot more harm than good. We should not feel bad or guilty about the way we feel. It's what makes us....us. Just because it would not bother someone else, does not mean we should deny it bothers us. We are all different and we really are the sum of everything that happens to us.
Sorry if this sounds like a downer post...I didn't mean for it to be that way. I really wanted to wish all those who are celebrating Thanksgiving this weekend, A Happy Thanksgiving!
I have a lot of difficulty with all of the major holidays....they are a huge family time but our extended families have always had other plans....which leaves us on our own. I find it difficult to get through the day, while all of our friends around us are getting together with their families. It really magnifies the fact we are not. I feel bad for my children too as they will not have the memories of family holidays. When I think back to my childhood Christmases....they were the best....getting together with family, hanging out and just spending the day together. We've spent quite a few years alone now and one would think it would get easier....but I'm finding it gets more difficult each year. This is why I am verbalizing this here....in hopes it will help me better deal with it. Through my homeopath and a friend who is training to become a homeopath....I am learning emotions and feelings *are* very important....they cannot be dismissed and discarded. They must be dealt with and those that are suppressed.....in the end do us a lot more harm than good. We should not feel bad or guilty about the way we feel. It's what makes us....us. Just because it would not bother someone else, does not mean we should deny it bothers us. We are all different and we really are the sum of everything that happens to us.
Sorry if this sounds like a downer post...I didn't mean for it to be that way. I really wanted to wish all those who are celebrating Thanksgiving this weekend, A Happy Thanksgiving!
Friday, June 26, 2009
Some improvements
With regards to CFS, I've been noticing some improvements, generally speaking. I am by no means back to normal but feel overall I am improving. Not fast enough for my liking...but progress is progress I suppose. When I think back to a year ago....there is definitely an improvement.
I am still swelling which has me a bit concerned. The mini tramp does help with this...but I have to remember to use it.
I still have fatigue, but it is not as long lasting as it has been in the past. When I crash, recovery time is a little shorter.
I am very pleased with the homeopath and the treatments I'm receiving here. I feel we are on the right path and plan to continue on with this.
To my fellow blogging, on-line friends...thanks for sharing your stories...your info, what works for you, what doesn't, what you'd like to try and for all your helpful hints and tips. I have learned so much from all of you!
I am hoping for further success....trying to take one day at a time.
I am still swelling which has me a bit concerned. The mini tramp does help with this...but I have to remember to use it.
I still have fatigue, but it is not as long lasting as it has been in the past. When I crash, recovery time is a little shorter.
I am very pleased with the homeopath and the treatments I'm receiving here. I feel we are on the right path and plan to continue on with this.
To my fellow blogging, on-line friends...thanks for sharing your stories...your info, what works for you, what doesn't, what you'd like to try and for all your helpful hints and tips. I have learned so much from all of you!
I am hoping for further success....trying to take one day at a time.
Friday, June 5, 2009
Thank you and update
The last couple of years have been a real struggle for me health wise. I've blogged about it before, so I won't rehash it all but am still hopeful to return to a somewhat normal life.
I'm learning I must re invent myself....which isn't easy. I have a million things I want to be doing....but many days have not enough energy to do even one. It's a learning process for sure.
I had so many unrelated symptoms followed by numerous tests --- some of which required me to be pumped full of 'garbage' (dyes and such) that caused me to have severe adverse reactions. It made me worse...instead of better....and all of that to be dx with Gas. Well.....I've really all but given up on modern medicine. Quite frankly, I am terrified to entrust such an important thing as my health into that scenario again. Even if I wanted to, I simply don't have the energy to do so. (For example when I first went to the Dr., I could not lift my arm. With barely any checking she told me it was frozen shoulder and I needed physio. I countered with I didn't think it was my shoulder as I could move my shoulder fine...it was my arm....it hurt in my armpit and the muscle area of my arm and I felt so swollen in the whole area. Nope...against my better judgement (but what do I know)...it was frozen shoulder. Fine....a month later off to physio I went...and guess what? The physio people said...hmmmm .... it's not frozen shoulder...you are really swollen and need to go back to your Dr. ASAP....they were afraid of breast cancer. What if it had of been breast cancer? I wasted a whole month (and medical resources that could have been used by somebody who really needed those services) all because she had no interest in listening to what *I* had to say.
Thankfully, there are other avenues open to me. I have found it most educational reading the blogs of those who also have CFS. I am thankful they take the time (even though they are sick themselves) to write about their struggles (makes me realize my symptoms *are* real and not just in my head), what works for them and what doesn't.
Through these blogs I have found a book, written by a Dr. in the UK. She has treated CFS patients since the early 80s...and what I read in her book was just amazing. She *gets* it. I've implemented some of her suggestions and had some success.
This illness is multi-faceted. There are many things to deal with...it's not a one size fits all cure.
I've been visiting a homeopath and again am pleased with the results I've had here. (For one thing...there are many....the recurring hives I encountered ever since having the CT scan have all but stopped.)
Besides the debilitating, ongoing fatigue, the post exertional malaise, the burning muscles....I've had this incredible amount of swelling which nobody has been able to help me with. I had a fleeting ray of encouragement when I visited one specialist. He said he could see my soft tissues were swelling (he noted swelling in areas I hadn't noticed yet...hence my ray of encouragement). That soon went out the window though when he said he was certain I've been like that for a long time...probably born like that (which it hadn't and I certainly wasn't born like that...I would have noticed all that swelling. I've always been thin and for a time in my life..I used to get asked if I was anorexic). No this was something new to me and it had only been going on since this illness started....but again...what do *I* know...he's the expert...insert another eye roll here).
I've been searching and searching to find out just what this swelling could be caused from. I'm certain it's not gas (insert eye roll here)....as it's all over...my fingers, my arms and legs, my face, my stomach..... My waist was 10 inches larger than it was before I became ill and it seemed to be getting worse. At one point, one arm was 1.5 inches larger than the other one. I came across a fellow CFS blogger and was intrigued when reading his posts, he stated his face was so swollen his mother did not recognize him when he got off the plane.
Bingo!!
Finally someone else who had swelling. I left him a message on his blog and he responded it was backed up lymphatic system. He left some suggestions for me to try....one being a mini trampoline/rebounder. I googled that....and WOW! So...I used some of my birthday money and bought myself one.
It's way to early for me to say this is the answer...but my waist size now fluctuates 5 inches. I do feel better (sometimes)...and think it is helping somewhat with the overall swelling. I do have to pace myself though...the first time I used it I was on it for 5 minutes and then slept for (an unrefreshing) two hours. I paid further for it too...the post exertional malaise lasted for a day and a half after that. I am slowly increasing my time, trying not to over do it, but it is a hard balance to reach (and it all seems so ridiculous to me...I used to have vigorous workouts...lasting minimum 30 minutes...and now I have trouble with 5 minutes of low level activity?....yep...a learning process for sure).
I am interested in what do you all think? Here are some pictures taken of me over the past year or so. Can you notice any difference in the swelling?
You can click on most of the pics to enlarge them.
The way I looked before I got sick:
.jpg)
Last summer (I'm in middle of the picture wearing white..the one with the fat face). I am amazed when I look at this pic at how puffy my face is. This is the last pic I have of myself. It got worse.
.jpg)
My birthday....after a few days with the rebounder:
A week or so later than the last picture.
Does it look like my swelling is going down? Or is it just wishful thinking on my part?
I'm still only using the rebounder for about 10 minutes a day (2...five minute sessions). I really have to balance using it but not too much....the post exertional malaise is something else.
I'm learning I must re invent myself....which isn't easy. I have a million things I want to be doing....but many days have not enough energy to do even one. It's a learning process for sure.
I had so many unrelated symptoms followed by numerous tests --- some of which required me to be pumped full of 'garbage' (dyes and such) that caused me to have severe adverse reactions. It made me worse...instead of better....and all of that to be dx with Gas. Well.....I've really all but given up on modern medicine. Quite frankly, I am terrified to entrust such an important thing as my health into that scenario again. Even if I wanted to, I simply don't have the energy to do so. (For example when I first went to the Dr., I could not lift my arm. With barely any checking she told me it was frozen shoulder and I needed physio. I countered with I didn't think it was my shoulder as I could move my shoulder fine...it was my arm....it hurt in my armpit and the muscle area of my arm and I felt so swollen in the whole area. Nope...against my better judgement (but what do I know)...it was frozen shoulder. Fine....a month later off to physio I went...and guess what? The physio people said...hmmmm .... it's not frozen shoulder...you are really swollen and need to go back to your Dr. ASAP....they were afraid of breast cancer. What if it had of been breast cancer? I wasted a whole month (and medical resources that could have been used by somebody who really needed those services) all because she had no interest in listening to what *I* had to say.
Thankfully, there are other avenues open to me. I have found it most educational reading the blogs of those who also have CFS. I am thankful they take the time (even though they are sick themselves) to write about their struggles (makes me realize my symptoms *are* real and not just in my head), what works for them and what doesn't.
Through these blogs I have found a book, written by a Dr. in the UK. She has treated CFS patients since the early 80s...and what I read in her book was just amazing. She *gets* it. I've implemented some of her suggestions and had some success.
This illness is multi-faceted. There are many things to deal with...it's not a one size fits all cure.
I've been visiting a homeopath and again am pleased with the results I've had here. (For one thing...there are many....the recurring hives I encountered ever since having the CT scan have all but stopped.)
Besides the debilitating, ongoing fatigue, the post exertional malaise, the burning muscles....I've had this incredible amount of swelling which nobody has been able to help me with. I had a fleeting ray of encouragement when I visited one specialist. He said he could see my soft tissues were swelling (he noted swelling in areas I hadn't noticed yet...hence my ray of encouragement). That soon went out the window though when he said he was certain I've been like that for a long time...probably born like that (which it hadn't and I certainly wasn't born like that...I would have noticed all that swelling. I've always been thin and for a time in my life..I used to get asked if I was anorexic). No this was something new to me and it had only been going on since this illness started....but again...what do *I* know...he's the expert...insert another eye roll here).
I've been searching and searching to find out just what this swelling could be caused from. I'm certain it's not gas (insert eye roll here)....as it's all over...my fingers, my arms and legs, my face, my stomach..... My waist was 10 inches larger than it was before I became ill and it seemed to be getting worse. At one point, one arm was 1.5 inches larger than the other one. I came across a fellow CFS blogger and was intrigued when reading his posts, he stated his face was so swollen his mother did not recognize him when he got off the plane.
Bingo!!
Finally someone else who had swelling. I left him a message on his blog and he responded it was backed up lymphatic system. He left some suggestions for me to try....one being a mini trampoline/rebounder. I googled that....and WOW! So...I used some of my birthday money and bought myself one.
It's way to early for me to say this is the answer...but my waist size now fluctuates 5 inches. I do feel better (sometimes)...and think it is helping somewhat with the overall swelling. I do have to pace myself though...the first time I used it I was on it for 5 minutes and then slept for (an unrefreshing) two hours. I paid further for it too...the post exertional malaise lasted for a day and a half after that. I am slowly increasing my time, trying not to over do it, but it is a hard balance to reach (and it all seems so ridiculous to me...I used to have vigorous workouts...lasting minimum 30 minutes...and now I have trouble with 5 minutes of low level activity?....yep...a learning process for sure).
I am interested in what do you all think? Here are some pictures taken of me over the past year or so. Can you notice any difference in the swelling?
You can click on most of the pics to enlarge them.
The way I looked before I got sick:
.jpg)
Last summer (I'm in middle of the picture wearing white..the one with the fat face). I am amazed when I look at this pic at how puffy my face is. This is the last pic I have of myself. It got worse.
.jpg)
My birthday....after a few days with the rebounder:
A week or so later than the last picture.
Does it look like my swelling is going down? Or is it just wishful thinking on my part?
I'm still only using the rebounder for about 10 minutes a day (2...five minute sessions). I really have to balance using it but not too much....the post exertional malaise is something else.
Wednesday, May 13, 2009
ME/CFS Awareness Day
As many of you know....I was dx with CFS just before Christmas 2008. I think, it was a quick dx according to how long it takes for most people with CFS to be dx, but it seemed an eternity for me. Many, many unrelated symptoms, many various Drs. and specialists, many tests. The more I investigated, the more unanswered questions there were and the less we knew.
The second last appt. though, before visiting the Dr. who was finally able to dx me, was most disappointing. After almost a year of sometimes very frightening symptoms, I was told my problem was ......
Gas.
I was insulted and humiliated. To think I'd been so sick for so long...been tested for breast cancer, (among other cancers) as well as many other illnesses.....and then to be told it was gas. I may not be a trained medical Dr., but was quite sure it was more than just gas. I left that appt., disgusted....I really just wanted to crawl into bed and stay there. My attitude was quickly becoming "either this 'thing' (whatever it was) is going to finish me or I'll get better on my own"....either or....it was better than this.
If the last appt. (the one where I finally received dx) hadn't been already booked for months, I would have cancelled (and actually the thought crossed my mind). Thankfully, I did not and went to that appt. That specialist (an internist), dx me right away. He got what I was saying. He did not look at me like I was talking Martian. He did not look at me like I had three heads. He knew where I hurt, before I told him. The dx was made fast and more importantly correctly.
Thank you, Dr. Joshi!
I am so thankful for the internet. Finally, with a dx in hand, I was able to start my own research. I was amazed at some of the things I read.....there it was in black and white..... my condition, feelings symptoms and struggles summed up...right there before my eyes.
The name, Chronic Fatigue Syndrome, is such a misleading name and one that really makes a lot less of the disease than what it really is. Yesterday (May 12) was CFS Awareness Day, although it was not a very good day for me, so I missed it (yesterday, I was painfully aware what CFS is).
I've asked for permission to repost a couple of excellent posts about CFS. When/if I get that, I'll copy and paste them here. In the meantime, you can read them for yourself. Both of them are excellent descriptions of CFS and what it is really like.
This one, CFS Warrior, is written by a person who had just been awarded their PhD before being struck with CFS. In the profile on the right hand side bar of the blog is a brief look into what life was like just before the dx. The above post goes into a bit more detail of the fight with CFS.
and..
This one, Renee's Reflections, is written by Renee. She is living with CFS and Lyme Disease. In the post above, she lists some of the symptoms of CFS.
Both are so worth the read for anyone wanting to learn more about what living with CFS is really like.
(Just as an update for my own situation ....through many avenues.....such as these two above-noted bloggers who have left many tips, links, info etc. about this disease, as well as my own reading, research, the help of a homeopath, speaking with others who battle this, I'm making some good progress. I have a way to go yet, but I'm hopeful. I've learned I need to evaluate my progress over months rather than days and that helps immensely. Looking back to where I was a year ago....I have improved greatly.)
Edited to Add:
I received permission from both bloggers...but am having difficulty getting some of it copied and pasted here properly.....(computers....grrr...)....the alignment seems to be off here, so I encourage you to check out the above links. They sum up symptoms and what life is like/can be like with this illness.
Sunday, March 8, 2009
Checking in
It's been awhile since I've posted here. As we push through these last few days of winter, we've been fighting these nasty bugs going around.
I'm almost afraid to say this for fear of jinxing us...but...so far we've managed to avoid that nasty stomach bug making it's rounds. We have more than made up for that fact though, with more than our share of the flu and/or cold. Jake is the latest to have it. He and I missed church today....his throat was starting to hurt and I was trying to recover from my day yesterday. Honestly.....having CFS is a real learning experience for me. A friend invited us over yesterday for the afternoon. I thought that won't be too difficult...it will be great to get out. So... Brittney, Jake and I went....Larry dropped us off. We were there for only a little while. We did nothing more than sit, talk and sip decaf coffee.....but this morning I felt like I'd been through the war. Honestly.....my whole body hurt so much, it felt like I'd been working for three days straight....yep....this is a real learning curve for me.
Tyler and Brittney went to a sleepover with the youth group from our church on Saturday night. We had promised Jake we'd take him out for breakfast before going to church. I wasn't sure how I was going to get myself up and around to go....but we'd promised Jake and I didn't want to let him down. When he said his throat was really sore, he had a bad headache and didn't think he could go out for breakfast.....I no longer needed to worry about letting him down. And ....*he* was worried about letting me down.
So....Larry went off by himself to church and to pick up our sleep-deprived teenagers. Sleep deprived they were too....Brittney got to sleep around 1:30....which isn't too bad, but Tyler.....he stayed up and awake the whole night....no sleep whatsoever..oh my....silly teenagers.
Jake and I stayed home and looked after each other. We lit a fire in the wood stove, grabbed a blanket...and cuddled on the couch. What could be better than that?
I'm almost afraid to say this for fear of jinxing us...but...so far we've managed to avoid that nasty stomach bug making it's rounds. We have more than made up for that fact though, with more than our share of the flu and/or cold. Jake is the latest to have it. He and I missed church today....his throat was starting to hurt and I was trying to recover from my day yesterday. Honestly.....having CFS is a real learning experience for me. A friend invited us over yesterday for the afternoon. I thought that won't be too difficult...it will be great to get out. So... Brittney, Jake and I went....Larry dropped us off. We were there for only a little while. We did nothing more than sit, talk and sip decaf coffee.....but this morning I felt like I'd been through the war. Honestly.....my whole body hurt so much, it felt like I'd been working for three days straight....yep....this is a real learning curve for me.
Tyler and Brittney went to a sleepover with the youth group from our church on Saturday night. We had promised Jake we'd take him out for breakfast before going to church. I wasn't sure how I was going to get myself up and around to go....but we'd promised Jake and I didn't want to let him down. When he said his throat was really sore, he had a bad headache and didn't think he could go out for breakfast.....I no longer needed to worry about letting him down. And ....*he* was worried about letting me down.
So....Larry went off by himself to church and to pick up our sleep-deprived teenagers. Sleep deprived they were too....Brittney got to sleep around 1:30....which isn't too bad, but Tyler.....he stayed up and awake the whole night....no sleep whatsoever..oh my....silly teenagers.
Jake and I stayed home and looked after each other. We lit a fire in the wood stove, grabbed a blanket...and cuddled on the couch. What could be better than that?
Monday, February 9, 2009
Diagnosis and Homeschooling
As a lot of you know, my health for the last year and half hasn't been the best. I've visited many Doctors, Specialists and made many trips to the ER. Symptoms that were seemingly unrelated, some frightening while others were just annoying. Nobody could put a name to this illness...but it continued on. I was dx with frozen shoulder to gas....and everything in between. There was concern about breast cancer, ovarian cancer, liver cancer. I had X Rays, a CT scan, ultra sounds, blood work, a mammogram, a scope put down into my stomach....just to name a few. Finally....mid December I was dx with Chronic Fatigue Syndrome.
Finally.
I'm finding most people do not understand this illness. Part of the problem, I think, is the name. It implies...being tired....and well most people get tired. The fatigue I feel with this though....is so much more than 'just being tired'. It goes much deeper than that. It is an extreme fatigue....one that cannot be fought. It's like trying to run a car on a flat tire....trying to squeeze just a few miles out of it. If the car is run with the flat tire....it starts to affect other parts of the car. This is what it feels like for me. I am exhausted at the best of times. If I actually do anything...it wears me out more. I start to swell and my body aches more. Most days I cannot make it around a grocery store. Sleep does not help.
The exhaustion is one thing....but the accompanying body aches are another thing. I feel like I've had a massive workout or ran several marathons .... every muscle in my body hurts....from my feet to my neck (well...at least I can say my face doesn't hurt lol).
Many people who have CFS are also dx with Fibromyalgia. Some articles I've read indicate these illness are related. Some articles say they are the same disease...but if the overwhelming symptom is fatigue...the dx CFS. If the overwhelming symptom is muscle aches, the dx is Fibromyalgia.
I've had people ask or hint about putting the kids back into school. Especially at this time, I'm so glad we do homeschool. I remember when Tyler and Brittney were in school....I could hardly keep up to the requirements then....and I was healthy. Homework to do, agendas to read and sign, note after note to read, sign, return or fill the request, lunches to pack, new indoor shoes to buy and send, projects to complete, costumes to prepare, money to send.....the list seemed to be endless. I can't imagine *having* to do all of that when moving around the house is a challenge. It's sooo much easier to curl up on the couch, under a blanket, with Jake beside me as we go over his English lesson for the day. We can map out our day to suit us....when it's convenient for us, whether that happens to be in the morning today and the afternoon tomorrow...it makes no difference.
Then there are the kids...and Larry. They've all had to take on so much more. Brittney helps with supper. She takes turns doing the dishes. She had already been doing the laundry. She dusts the family room and dusts and vacuums her room.
Tyler helps with the dishes. He sweeps the kitchen after every meal. He helps with the dishes. Sometimes he even cooks lunch. He helps bring in the wood. He keeps his room in check. He vacuums the family room, the living room, our bedroom and the stairs if Larry is at work.
Jake sets the table. He does 'errands' around the house for me. He takes the fliers and newspapers down beside the woodstove. He helps Tyler and Larry bring bring in the wood.
Larry helps with the meals, does the grocery shopping, vacuums if he's not working, helps with the dishes...plus all of the usual 'Dad' things (outside work and earning the pay cheque).
I do not mean for this to be a pity post. Just the opposite. It comes by way of explanation. I may be down....for the time being....but I am not out. Not by a long shot. I am researching this. I've talked to many people who also have it. I've gotten some great resources. I think the biggest....and most difficult....thing for me to do....will be learning to say NO. Over the years, I've always been seen as being able to handle everything. People have had no problem dumping 'whatever' on to us....because they knew we would deal with and work it out. Not any more. Today is the day I need to learn the word NO.
Soo...I will not use my blog to whine (at least I will try not lol). I will update if I notice improvements.
Thanks, everyone!
Finally.
I'm finding most people do not understand this illness. Part of the problem, I think, is the name. It implies...being tired....and well most people get tired. The fatigue I feel with this though....is so much more than 'just being tired'. It goes much deeper than that. It is an extreme fatigue....one that cannot be fought. It's like trying to run a car on a flat tire....trying to squeeze just a few miles out of it. If the car is run with the flat tire....it starts to affect other parts of the car. This is what it feels like for me. I am exhausted at the best of times. If I actually do anything...it wears me out more. I start to swell and my body aches more. Most days I cannot make it around a grocery store. Sleep does not help.
The exhaustion is one thing....but the accompanying body aches are another thing. I feel like I've had a massive workout or ran several marathons .... every muscle in my body hurts....from my feet to my neck (well...at least I can say my face doesn't hurt lol).
Many people who have CFS are also dx with Fibromyalgia. Some articles I've read indicate these illness are related. Some articles say they are the same disease...but if the overwhelming symptom is fatigue...the dx CFS. If the overwhelming symptom is muscle aches, the dx is Fibromyalgia.
I've had people ask or hint about putting the kids back into school. Especially at this time, I'm so glad we do homeschool. I remember when Tyler and Brittney were in school....I could hardly keep up to the requirements then....and I was healthy. Homework to do, agendas to read and sign, note after note to read, sign, return or fill the request, lunches to pack, new indoor shoes to buy and send, projects to complete, costumes to prepare, money to send.....the list seemed to be endless. I can't imagine *having* to do all of that when moving around the house is a challenge. It's sooo much easier to curl up on the couch, under a blanket, with Jake beside me as we go over his English lesson for the day. We can map out our day to suit us....when it's convenient for us, whether that happens to be in the morning today and the afternoon tomorrow...it makes no difference.
Then there are the kids...and Larry. They've all had to take on so much more. Brittney helps with supper. She takes turns doing the dishes. She had already been doing the laundry. She dusts the family room and dusts and vacuums her room.
Tyler helps with the dishes. He sweeps the kitchen after every meal. He helps with the dishes. Sometimes he even cooks lunch. He helps bring in the wood. He keeps his room in check. He vacuums the family room, the living room, our bedroom and the stairs if Larry is at work.
Jake sets the table. He does 'errands' around the house for me. He takes the fliers and newspapers down beside the woodstove. He helps Tyler and Larry bring bring in the wood.
Larry helps with the meals, does the grocery shopping, vacuums if he's not working, helps with the dishes...plus all of the usual 'Dad' things (outside work and earning the pay cheque).
I do not mean for this to be a pity post. Just the opposite. It comes by way of explanation. I may be down....for the time being....but I am not out. Not by a long shot. I am researching this. I've talked to many people who also have it. I've gotten some great resources. I think the biggest....and most difficult....thing for me to do....will be learning to say NO. Over the years, I've always been seen as being able to handle everything. People have had no problem dumping 'whatever' on to us....because they knew we would deal with and work it out. Not any more. Today is the day I need to learn the word NO.
Soo...I will not use my blog to whine (at least I will try not lol). I will update if I notice improvements.
Thanks, everyone!
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