My story started many, many years ago... almost 30 to be exact.
One morning, at 15, I woke up and couldn't walk... literally. After many tests and some very scary waits the results came back as... nothing. Nothing?!? Over the next few years debilitating pain would bring me to a crashing halt but it would only happen once in a while with months in between episodes. I learned to live with it... after all, it was nothing right?!
In my 20s during the height of motherhood I continued to live with muscle tightness, weakness and days when I was exhausted beyond tears. On top of it, I suffered from post-partum depression. I often found myself with no help and not knowing how to continue. But I had two young children and had no choice but to get up everyday and get things done.
Fast forward 10 years, I'm now in my 30s, my kids are taking care of themselves for the most part, active in sports. I have gone through being a single, working mom to marrying an amazing man who wants nothing but to take care of me. Which turns out to be a god-send. The day to day pain gets worse. Weekends end up being spent burned out on the couch. I don't remember if I've ever known a good nights sleep. Some days I walk like a 90 year old man... actually, they are more spry than me. I have burning pain up and down my arms and legs, nerves jump constantly.
To date, the doctors still can't find anything. For lack of a diagnosis, they assume arthritis that has not shown itself in blood work yet. They load me with anti-inflammatories and send me on my way. Nothing helps and I'm not going to fill my body with drugs that can cause organ problems further down the road.
I start researching natural remedies for chronic pain. I suspect I have fibromyalgia but I can't get a doctor to listen to me. Some things help, like ginger, but only for a short time. I go through one thing after another. I just keep working, keep pushing through the pain. I suffer, sometimes in silence, sometimes not so quiet.
Then in my 40s there are more bad days than good. The pain becomes excruciating, the exhaustion incapacitating. I'm getting really tired of fighting, really tired of not feeling normal... though I don't know what normal is anymore!!
But I find a doctor who listens to me. She believes me!! She doesn't think I'm crazy or that it is all in my head. She starts by giving me gabapentin... which works. I feel quite well for about 3 months, then the pains start coming back so we up the dosage!! Feeling great again... for about 2 months, so we up the dosage again! It just keeps going and going. I've also started taking an anti-depressant to help with the anxiety and worry that comes with the constant pain and losing my ability to live the way I want to.
In the meantime, she has referred me to a GP that specializes in chronic pain. I visit with this doctor for 3 years. She officially diagnoses me with fibromyalgia. She tries to get my sleep on track and does better than anyone else has in years. She gets my diet adjusted to increase proteins, lessen sugar, discovers I have a lactose intolerance. She teaches me many things for pain management and tries to get my life back on track. She is successful in more ways than not. But I still have many days of awfulness.
Then in early 2013 after an accident, a series of UTIs and two major respiratory infections within 2 months, I develop Chronic Fatigue Syndrome. I find myself falling to sleep at work!! No matter how much I sleep, I'm always exhausted. I feel like I have the flu all the time!! I barely have the energy to do my job, forget doing housework or cooking dinner.
Jay and Brittany jump in and do the best they can by me but they can't make my emotions stable. They can't make me not feel like a failure, feel like I'm not contributing, feel like I'm a disappointment.
Every illness, every accident, every stress causes a set-back!! I end up back at stage one every time.
Now I am on Lyrica. I have got the sleep thing almost under control with natural things but mostly good sleep habits. Still on anti-depressants and still have daily pains of at least 6... on bad days they hang around an 8. I still have days where I can barely be coherent, where I can't do more than stay bundled on the couch praying for the pain to end.
I reach out, I volunteer as a group leader on a support site. I try to offer what little wisdom I have about these illnesses. I advocate for myself and others suffering from chronic illnesses such as fibromyalgia and chronic fatigue. I research, I read, I learn and I hopefully educate.
The truth of the matter is, there is no known cause, so there is no known cure. The treatments are for symptoms only, to give the patient comfort, not to treat the actual disease.
That is why days like today are so very important. If we do not start making people more aware about this disease it will stay in the shadows and the research being done on it will remain almost non-existent. If you consider there are over 35 million people in this country and over 1 million of them are afflicted with this disease, can we really afford to stay invisible??
#12MayBlogBomb
Living with Fibromyalgia and Chronic Fatigue
Monday, 12 May 2014
Tuesday, 15 April 2014
More big changes... funny how life works
I was reading over some old blogs and it is funny how you grow, how your opinions change and how with that your pain treatment and management changes.
2013 was not a very good year for me. Between illness, increased work stress and developing Chronic Fatigue it was a complete write-off. Pains were higher than ever, sleep was lower than ever and I felt that my life (well at least the health part of it) just generally sucked.
In light of this, I have made some changes.
Unfortunately, we still haven't figured out what is causing the chest palpitations. I'm not sure if they are getting better or if I'm getting used to them but they still exist, they still cause me issues. The cardiologist did all the tests he could think of and couldn't find the cause... without a cause you can't have a treatment. So I'm trying to learn to live with it. They are worse at night... when I should be preparing for sleep they get pretty ramped up but seem to calm down within an hour. I watch my caffeine intake and try to get as much rest as I can. I haven't quit looking into it but there is just nothing to be done for it right now.
In an earlier post, I mentioned how the medications most commonly used for treating fibro are so bad for you. Well I lied. The end of 2013 beginning of 2014 found me desperate for some relief. We started Cymbalta which I did not take to well at all!! There were such serious side effects within the first week that I didn't progress with it after that! I am now on Lyrica which I am finding is helping. My codeine usage is down considerably, my pain levels have gone from 9 & 10s to 5 & 6s so I'll take it. Still taking the Effexor to help with the emotional side of things. I do have high hopes that I will live without these drugs someday... but not today. Today I need all the weapons in my arsenal to feel better... and that's okay too.
With acceptance of any disease you find peace. You find a way to still live an amazing life. That is where my focus is now... finding peace, acceptance and still having a high quality life.
And you know what? Life is good. I have a great family, I have great friends and they are now my focus. I've let some relationships slide over the last couple of years due to lack of energy and increase in pain. And it is the relationships that keep us strong, keep our hearts full, give us a reason to carry on.
So I made the biggest decision of my life... and that was to leave my job. After 17 years with Keystone I decided to leave. Though all my best friends are there, there was also a lot of stress. It isn't easy trying to help a floundering company when you are ill. I just couldn't do it anymore. And it was the best decision of my life. It is early days (only been gone for 4 days so far) but I already feel a lightness in my being. I don't feel the begrudging... gotta get to work feeling I was having for a long time.
So now I can spend my days visiting with friends, seeing my kids. Refilling my heart, rebuilding relationships and making the quality of my life better, stronger, more fulfilling.
It wasn't an easy decision to leave my job. Not only were there the financial worries of leaving but there is that sense that you're doing something "wrong" by not working. There is always that little sense that the disease is getting the best of you. But I'm choosing to focus on the positives. I'm not going to be as stressed, I can get rest if and when my body needs it, not when the clock allows it. I can fill my heart and soul with volunteering, visits with friends and helping people. And that is good.
So with all of that, we move forward. We live to fight another day. I'm now living with fibromyalgia and chronic fatigue not against it and I truly believe that life is good.
2013 was not a very good year for me. Between illness, increased work stress and developing Chronic Fatigue it was a complete write-off. Pains were higher than ever, sleep was lower than ever and I felt that my life (well at least the health part of it) just generally sucked.
In light of this, I have made some changes.
Unfortunately, we still haven't figured out what is causing the chest palpitations. I'm not sure if they are getting better or if I'm getting used to them but they still exist, they still cause me issues. The cardiologist did all the tests he could think of and couldn't find the cause... without a cause you can't have a treatment. So I'm trying to learn to live with it. They are worse at night... when I should be preparing for sleep they get pretty ramped up but seem to calm down within an hour. I watch my caffeine intake and try to get as much rest as I can. I haven't quit looking into it but there is just nothing to be done for it right now.
In an earlier post, I mentioned how the medications most commonly used for treating fibro are so bad for you. Well I lied. The end of 2013 beginning of 2014 found me desperate for some relief. We started Cymbalta which I did not take to well at all!! There were such serious side effects within the first week that I didn't progress with it after that! I am now on Lyrica which I am finding is helping. My codeine usage is down considerably, my pain levels have gone from 9 & 10s to 5 & 6s so I'll take it. Still taking the Effexor to help with the emotional side of things. I do have high hopes that I will live without these drugs someday... but not today. Today I need all the weapons in my arsenal to feel better... and that's okay too.
With acceptance of any disease you find peace. You find a way to still live an amazing life. That is where my focus is now... finding peace, acceptance and still having a high quality life.
And you know what? Life is good. I have a great family, I have great friends and they are now my focus. I've let some relationships slide over the last couple of years due to lack of energy and increase in pain. And it is the relationships that keep us strong, keep our hearts full, give us a reason to carry on.
So I made the biggest decision of my life... and that was to leave my job. After 17 years with Keystone I decided to leave. Though all my best friends are there, there was also a lot of stress. It isn't easy trying to help a floundering company when you are ill. I just couldn't do it anymore. And it was the best decision of my life. It is early days (only been gone for 4 days so far) but I already feel a lightness in my being. I don't feel the begrudging... gotta get to work feeling I was having for a long time.
So now I can spend my days visiting with friends, seeing my kids. Refilling my heart, rebuilding relationships and making the quality of my life better, stronger, more fulfilling.
It wasn't an easy decision to leave my job. Not only were there the financial worries of leaving but there is that sense that you're doing something "wrong" by not working. There is always that little sense that the disease is getting the best of you. But I'm choosing to focus on the positives. I'm not going to be as stressed, I can get rest if and when my body needs it, not when the clock allows it. I can fill my heart and soul with volunteering, visits with friends and helping people. And that is good.
So with all of that, we move forward. We live to fight another day. I'm now living with fibromyalgia and chronic fatigue not against it and I truly believe that life is good.
Wednesday, 19 February 2014
Visceral Manipulation
Well today was certainly an interesting day.
Doc had sent me to a new physiotherapist due to all the back pain I have been having... she isn't your typical physiotherapist!!
First, her office looks more like a massage therapist or chiropractor. She had me stand with my back to her and started doing all these measurements and touching me all over!!
Turns out, this lady does visceral manipulation and craniosacral therapy. Interesting concept (taken from her brochure):
""Viscera" relates to the internal organs of the body such as the liver, kidneys and intestines. Visceral Manipulation is a gentle manual therapy that aids your body's ability to release restrictions and unhealthy compensations that cause pain and dysfunction. Visceral Manipulation, or VM, does not focus solely on the site of pain or dysfunction, but evaluates the entire body to find the source of the problem. The VM therapist feels for altered or decreased motion within the viscera, as well as restrictive patterns throughout the body and then applies VM techniques. VM therapy re-establishes the body's ability to adapt and restore itself to health."
So turns out that my whole right side is sitting higher than my left. I have much less movement in my left side and the top ribs barely have any space between them I'm so scrunched up.
So she did a lot of these manipulations, small palpitations in the tummy and abdominal area, actually moving ribs around etc. She even did some manipulations in my mouth on the roof and top teeth!!Some of these manipulations were quite painful while they were happening but surprisingly I'm not hurting right now.
She made no promises that she could "cure" either the FM or CFS but she is hoping to help increase my energy, is hopeful that she will end the heart arrhythmia and is quite confident that my back pain will be eradicated.
Hey, I've tried everything else to no avail so I figure... what the heck! And because she is a physiotherapist all the appointments are covered under my insurance! It can apparently take up to 10 days for visceral manipulation to show changes so appointments are usually every couple of weeks and most people only need about 5 appointments to be feeling better.
I will keep posting my progress (or lack thereof) and let you know how it goes. Who knows... just may be someone's answer to pain relief!
Doc had sent me to a new physiotherapist due to all the back pain I have been having... she isn't your typical physiotherapist!!
First, her office looks more like a massage therapist or chiropractor. She had me stand with my back to her and started doing all these measurements and touching me all over!!
Turns out, this lady does visceral manipulation and craniosacral therapy. Interesting concept (taken from her brochure):
""Viscera" relates to the internal organs of the body such as the liver, kidneys and intestines. Visceral Manipulation is a gentle manual therapy that aids your body's ability to release restrictions and unhealthy compensations that cause pain and dysfunction. Visceral Manipulation, or VM, does not focus solely on the site of pain or dysfunction, but evaluates the entire body to find the source of the problem. The VM therapist feels for altered or decreased motion within the viscera, as well as restrictive patterns throughout the body and then applies VM techniques. VM therapy re-establishes the body's ability to adapt and restore itself to health."
So turns out that my whole right side is sitting higher than my left. I have much less movement in my left side and the top ribs barely have any space between them I'm so scrunched up.
So she did a lot of these manipulations, small palpitations in the tummy and abdominal area, actually moving ribs around etc. She even did some manipulations in my mouth on the roof and top teeth!!Some of these manipulations were quite painful while they were happening but surprisingly I'm not hurting right now.
She made no promises that she could "cure" either the FM or CFS but she is hoping to help increase my energy, is hopeful that she will end the heart arrhythmia and is quite confident that my back pain will be eradicated.
Hey, I've tried everything else to no avail so I figure... what the heck! And because she is a physiotherapist all the appointments are covered under my insurance! It can apparently take up to 10 days for visceral manipulation to show changes so appointments are usually every couple of weeks and most people only need about 5 appointments to be feeling better.
I will keep posting my progress (or lack thereof) and let you know how it goes. Who knows... just may be someone's answer to pain relief!
Monday, 17 February 2014
Acceptance and what it entails
It has been a long time since my last post and a lot has happened since now and then. You will note that my blog is no longer called Curing Fibromyalgia but is now Living with Fibromyalgia and Chronic Fatigue.
The pain and fatigue that started developing in March of 2013 continued to kick my butt. I got more and more tired, the pain became more and more debilitating and I hit some emotional all time lows. I developed a heart arrhythmia that had me very frightened and left me worried what my future held.
I went through a lot of tests: more blood tests, a lot of heart tests, x-rays, ultrasounds, specialist appointments.
Pretty much it all came down to nothing... well not nothing... pretty much we have added a diagnosis of Chronic Fatigue Syndrome to the already diagnosed Fibromyalgia.
It was a pretty hard hit and I needed to sit back and lick my wounds a little and try to deal with the additional emotional fall out that followed. On top of it all, my amazing doctor, Dr. Lassila switched clinics. So I also felt like I had lost my biggest helper in dealing with this illness.
But nothing keeps me down for long, and as with everything my need for education increased.
I attempted some behavioural therapy but it wasn't a great fit so I only attended a couple of sessions. I joined an online support group called MD Junction which I continue to visit as a way to educate myself and learn from others travelling the same path.
While cruising some of the posts on MDJunction I came upon the following post (some of the text has been eliminated for space but you can find the full article at http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions/general-support/10898349-how-the-a-swear-word-is-not-giving-up#10900626):
Acceptance for Living With Fibromyalgia
How Acceptance Can Help With Managing Your Illness
By Adrienne Dellwo, About.com Guide
A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about.
When you're adapting your life to chronic illness, it's normal to go through a grieving process, just as if someone close to you had died.
The final phase of the grief cycle is acceptance. Some people confuse "acceptance" with "giving up", but acceptance actually is a means of looking at your situation realistically so you can set reachable goals.
The physician-trusted website UpToDate examines the need for acceptance in people living with FM. An excerpt from UpToDate:
"Acceptance of chronic pain is a coping strategy that includes both direct action and passive components that may be particularly helpful to patients with FM. This strategy involves (a) acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain; (b) acceptance of the need to shift one's attention from pain to non-pain aspects of life; and (c) such acceptance does not signify personal failure.
"Indeed, acceptance of persistent pain may be necessary for individuals to stop searching for treatments that provide complete relief of pain and begin to adopt changes in their behavior that may help them to better manage persistent pain and improve their quality of life."
Working Toward Acceptance
"Acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain."
You might ask, "Isn't that pessimistic?" Sadly, no -- it's realistic. So far, we don't have treatments that completely eliminate fibromyalgia pain, and no existing treatment works for everyone. It's likely that those of us with FM will have to live with some degree of pain, possibly for the rest of our lives. That doesn't mean that we have to accept living with severe pain. Instead, it means that we shouldn't expect any single treatment to alleviate all of our pain and other symptoms.
A more realistic goal is to find a combination of treatments that, together, lessen your symptoms and help you increase your functionality and quality of life.
It may be disheartening to think about living with pain forever. After the kind of pain you've experienced, though, think what a difference it would be to just have mild pain. Once you stop expecting the next treatment to be "the answer", you can start being happy about making small improvements, one at a time, that eventually add up to making you feel a lot better.
"Acceptance of the need to shift one's attention from pain to non-pain aspects of life."
No doubt, this one is hard. FM pain can demand your attention and, especially when combined with fibro fog, can make it hard to concentrate on anything else.
Things that can help distract you from pain include video games, hobbies/arts and crafts, reading (when fibro fog is bad, try a magazine or short stories), or anything else that you can enjoy without making yourself feel worse. The more your brain is engaged with what it's doing, the more successful you're likely to be, so TV and movies may not be very effective.
The quote above talks about acceptance versus catastrophizing. Catastrophizing is a distorted belief that things are worse than they are, or that the situation is hopeless. People who catastrophize may feel like they'll never get better, that no treatment will ever be effective. Research demonstrates that people who accept pain do better than those who catastrophize.
"Such acceptance does not signify personal failure."
It's important to remember that acceptance doesn't mean giving in to your illness, nor does modifying your life because of it.
For example, when I was diagnosed with FM, I was determined to keep it from changing my life. I continued working at a very stressful full-time job that kept me in a near-constant flare. My life consisted of working and trying to recover from work -- which meant laying on the couch, on pain killers and still in agony. Once I accepted that I had to make some changes and manage my FM instead of fighting against it, I was able to make the changes that have allowed me to improve. I left my job, and that felt like failure. However, my decision allowed me to be more successful as a wife, mother, friend, and overall person. I also recovered to the point that I could work from home.
And this is where I currently reside. I have accepted that I am ill... there is just no denying it. I am, however, still in the decision making part of the process.
I am still working full-time; which means my evenings and weekends are usually a write-off as I lie on the couch trying to recover from work and building up my energy to work another week.
There are a few things that are keeping me from making the decision to quit working altogether or to go to part time work. The most obvious of this is financial... it is very difficult to give up that pay cheque; especially when my family relies on it so much. Coupled with that is finding someone at work that can take over the tasks that I would no longer be able to do. And that will be a discussion between me and my boss and co-workers when I am ready to go down that road.
For now, I'm learning to say no to things I'm just not capable of doing. Getting my much needed rest when I can. Building up energy so I can continue to enjoy things like family gatherings and outings with friends.
I have found Dr. Lassila again and we are working on lessening my symptoms... with some success!
So now that I have come to the final stage of grief... acceptance... I can begin to feel better.
So future blogs will contain some of the things I'm doing to feel better... I will share my successes and my failures. I started this blog in order to educate and help people on their journey and I hope that I can continue to do so.
Thanks for taking the time to read this rather long blog... and thanks for following.
Brightest Blessings!!
The pain and fatigue that started developing in March of 2013 continued to kick my butt. I got more and more tired, the pain became more and more debilitating and I hit some emotional all time lows. I developed a heart arrhythmia that had me very frightened and left me worried what my future held.
I went through a lot of tests: more blood tests, a lot of heart tests, x-rays, ultrasounds, specialist appointments.
Pretty much it all came down to nothing... well not nothing... pretty much we have added a diagnosis of Chronic Fatigue Syndrome to the already diagnosed Fibromyalgia.
It was a pretty hard hit and I needed to sit back and lick my wounds a little and try to deal with the additional emotional fall out that followed. On top of it all, my amazing doctor, Dr. Lassila switched clinics. So I also felt like I had lost my biggest helper in dealing with this illness.
But nothing keeps me down for long, and as with everything my need for education increased.
I attempted some behavioural therapy but it wasn't a great fit so I only attended a couple of sessions. I joined an online support group called MD Junction which I continue to visit as a way to educate myself and learn from others travelling the same path.
While cruising some of the posts on MDJunction I came upon the following post (some of the text has been eliminated for space but you can find the full article at http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions/general-support/10898349-how-the-a-swear-word-is-not-giving-up#10900626):
Acceptance for Living With Fibromyalgia
How Acceptance Can Help With Managing Your Illness
By Adrienne Dellwo, About.com Guide
A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about.
When you're adapting your life to chronic illness, it's normal to go through a grieving process, just as if someone close to you had died.
The final phase of the grief cycle is acceptance. Some people confuse "acceptance" with "giving up", but acceptance actually is a means of looking at your situation realistically so you can set reachable goals.
The physician-trusted website UpToDate examines the need for acceptance in people living with FM. An excerpt from UpToDate:
"Acceptance of chronic pain is a coping strategy that includes both direct action and passive components that may be particularly helpful to patients with FM. This strategy involves (a) acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain; (b) acceptance of the need to shift one's attention from pain to non-pain aspects of life; and (c) such acceptance does not signify personal failure.
"Indeed, acceptance of persistent pain may be necessary for individuals to stop searching for treatments that provide complete relief of pain and begin to adopt changes in their behavior that may help them to better manage persistent pain and improve their quality of life."
Working Toward Acceptance
"Acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain."
You might ask, "Isn't that pessimistic?" Sadly, no -- it's realistic. So far, we don't have treatments that completely eliminate fibromyalgia pain, and no existing treatment works for everyone. It's likely that those of us with FM will have to live with some degree of pain, possibly for the rest of our lives. That doesn't mean that we have to accept living with severe pain. Instead, it means that we shouldn't expect any single treatment to alleviate all of our pain and other symptoms.
A more realistic goal is to find a combination of treatments that, together, lessen your symptoms and help you increase your functionality and quality of life.
It may be disheartening to think about living with pain forever. After the kind of pain you've experienced, though, think what a difference it would be to just have mild pain. Once you stop expecting the next treatment to be "the answer", you can start being happy about making small improvements, one at a time, that eventually add up to making you feel a lot better.
"Acceptance of the need to shift one's attention from pain to non-pain aspects of life."
No doubt, this one is hard. FM pain can demand your attention and, especially when combined with fibro fog, can make it hard to concentrate on anything else.
Things that can help distract you from pain include video games, hobbies/arts and crafts, reading (when fibro fog is bad, try a magazine or short stories), or anything else that you can enjoy without making yourself feel worse. The more your brain is engaged with what it's doing, the more successful you're likely to be, so TV and movies may not be very effective.
The quote above talks about acceptance versus catastrophizing. Catastrophizing is a distorted belief that things are worse than they are, or that the situation is hopeless. People who catastrophize may feel like they'll never get better, that no treatment will ever be effective. Research demonstrates that people who accept pain do better than those who catastrophize.
"Such acceptance does not signify personal failure."
It's important to remember that acceptance doesn't mean giving in to your illness, nor does modifying your life because of it.
For example, when I was diagnosed with FM, I was determined to keep it from changing my life. I continued working at a very stressful full-time job that kept me in a near-constant flare. My life consisted of working and trying to recover from work -- which meant laying on the couch, on pain killers and still in agony. Once I accepted that I had to make some changes and manage my FM instead of fighting against it, I was able to make the changes that have allowed me to improve. I left my job, and that felt like failure. However, my decision allowed me to be more successful as a wife, mother, friend, and overall person. I also recovered to the point that I could work from home.
And this is where I currently reside. I have accepted that I am ill... there is just no denying it. I am, however, still in the decision making part of the process.
I am still working full-time; which means my evenings and weekends are usually a write-off as I lie on the couch trying to recover from work and building up my energy to work another week.
There are a few things that are keeping me from making the decision to quit working altogether or to go to part time work. The most obvious of this is financial... it is very difficult to give up that pay cheque; especially when my family relies on it so much. Coupled with that is finding someone at work that can take over the tasks that I would no longer be able to do. And that will be a discussion between me and my boss and co-workers when I am ready to go down that road.
For now, I'm learning to say no to things I'm just not capable of doing. Getting my much needed rest when I can. Building up energy so I can continue to enjoy things like family gatherings and outings with friends.
I have found Dr. Lassila again and we are working on lessening my symptoms... with some success!
So now that I have come to the final stage of grief... acceptance... I can begin to feel better.
So future blogs will contain some of the things I'm doing to feel better... I will share my successes and my failures. I started this blog in order to educate and help people on their journey and I hope that I can continue to do so.
Thanks for taking the time to read this rather long blog... and thanks for following.
Brightest Blessings!!
Sunday, 16 June 2013
Keep That Chin Up!!
Hi all,
Today's blog is about self-talk and the power of positive thinking. Dr. Tompkins told me she has been recommending my blog to some of her other patients. And it isn't because I am feeling super better or because the fibro has disappeared. It is because in light of ALL the insanity that my body goes through; I still get up every day with a smile on my face ready to tackle the world!!
So here is some positive news... the cardiologist couldn't find anything wrong with me. This turned out to be both good and bad news. Good news because, seriously, who wants to have a heart problem. TOO SCARY!! So my heart looks good, no obvious blockages, no growths, no enlargement. Bad news because I am still having some scary tachycardia arrhythmias that knock my socks off with no obvious reason as to why. If you don't know why, you can't fix them right? So, in early July I will be going for some more tests to try to put our finger on it and see if we can't fix it. But, my life is not in danger and I have pretty much been told to continue to live my life per usual. (But to still watch the caffeine intake... bah!!) But all in all, I'm feeling pretty good about that.
My pain levels are still pretty high, my energy levels are still pretty low but I keep progressing. And I keep talking to myself. YUP... self talk. If you continue to tell yourself you are sick, you are tired, you are useless, you are never going to get better then you are right. You won't. You have to talk positive. You have to talk to yourself about feeling better, about where you are heading, about how you are going to get better. You have to talk about the wonderfulness of the world. It is a beautiful place. You have to work as hard as you can to find the caring and the kindness. Read about the good things going on in the world; find the positive stories. Fill your life with smiles and positive people. And never give up!!
Sometimes, we have to go back to basics. That is what I have been doing. I am re-reading old suggestions from my fibro specialist and checking to see where I've been slipping. So I am back to making sure my bed is comfortable, making sure my diet is complete. Resting when I can, using my heating blanket when the pain is too high and getting my feet up. You can't give up!! And you HAVE to make positive changes.
You can't continue to keep doing the same things over and over again expecting to get better. Sometimes we resent these changes but they are necessary. It is your health, your quality of life, your future that is on the line. Do you really need lactose laden food in your diet? I find healthy, tasty alternatives all the time. Get tested for gluten sensitivities; increase the proteins in your diet. Change your bedroom around so you are getting enough oxygen; make it dark enough, cool enough, comfy enough so you are getting a good nights sleep. (I have posted about all this stuff in previous blogs so please go read them for more details.) Once you see how much better you feel by making these changes the only thing you are going to wonder is "Why didn't I do this sooner?"
So yes, it does seem for every step forward I take, I take two back. And yes, the last couple of years of my life have been full of additional challenges and struggles that a "normal" person would have trouble contending with, let alone a person with chronic pain. But it is a wonderful life! I have filled it full of good, supportive people; health professionals who really listen, friends and family that understand and do not put additional strain on my already taxed body and health and nutrition that are going to help this body thrive and get better. I am fighting the good fight, and NOTHING is going to make me back down! So keep your chin up!! I am here if you need help, guidance or support... but most importantly... NEVER GIVE UP!!
Today's blog is about self-talk and the power of positive thinking. Dr. Tompkins told me she has been recommending my blog to some of her other patients. And it isn't because I am feeling super better or because the fibro has disappeared. It is because in light of ALL the insanity that my body goes through; I still get up every day with a smile on my face ready to tackle the world!!
So here is some positive news... the cardiologist couldn't find anything wrong with me. This turned out to be both good and bad news. Good news because, seriously, who wants to have a heart problem. TOO SCARY!! So my heart looks good, no obvious blockages, no growths, no enlargement. Bad news because I am still having some scary tachycardia arrhythmias that knock my socks off with no obvious reason as to why. If you don't know why, you can't fix them right? So, in early July I will be going for some more tests to try to put our finger on it and see if we can't fix it. But, my life is not in danger and I have pretty much been told to continue to live my life per usual. (But to still watch the caffeine intake... bah!!) But all in all, I'm feeling pretty good about that.
My pain levels are still pretty high, my energy levels are still pretty low but I keep progressing. And I keep talking to myself. YUP... self talk. If you continue to tell yourself you are sick, you are tired, you are useless, you are never going to get better then you are right. You won't. You have to talk positive. You have to talk to yourself about feeling better, about where you are heading, about how you are going to get better. You have to talk about the wonderfulness of the world. It is a beautiful place. You have to work as hard as you can to find the caring and the kindness. Read about the good things going on in the world; find the positive stories. Fill your life with smiles and positive people. And never give up!!
Sometimes, we have to go back to basics. That is what I have been doing. I am re-reading old suggestions from my fibro specialist and checking to see where I've been slipping. So I am back to making sure my bed is comfortable, making sure my diet is complete. Resting when I can, using my heating blanket when the pain is too high and getting my feet up. You can't give up!! And you HAVE to make positive changes.
You can't continue to keep doing the same things over and over again expecting to get better. Sometimes we resent these changes but they are necessary. It is your health, your quality of life, your future that is on the line. Do you really need lactose laden food in your diet? I find healthy, tasty alternatives all the time. Get tested for gluten sensitivities; increase the proteins in your diet. Change your bedroom around so you are getting enough oxygen; make it dark enough, cool enough, comfy enough so you are getting a good nights sleep. (I have posted about all this stuff in previous blogs so please go read them for more details.) Once you see how much better you feel by making these changes the only thing you are going to wonder is "Why didn't I do this sooner?"
So yes, it does seem for every step forward I take, I take two back. And yes, the last couple of years of my life have been full of additional challenges and struggles that a "normal" person would have trouble contending with, let alone a person with chronic pain. But it is a wonderful life! I have filled it full of good, supportive people; health professionals who really listen, friends and family that understand and do not put additional strain on my already taxed body and health and nutrition that are going to help this body thrive and get better. I am fighting the good fight, and NOTHING is going to make me back down! So keep your chin up!! I am here if you need help, guidance or support... but most importantly... NEVER GIVE UP!!
Saturday, 20 April 2013
Health update... not so sunshiny and rosy
I talk to a lot of people in a week, a lot of people know what I'm going through but not everyone knows everything and things are wonky and a little scary right now. In light of keeping people educated, here is an update.
I believe everyone is aware of my car accident in October 2012. Well, my health has been progressively going downhill since then. Since January I have had two bladder infections a month apart and have had two major viruses that lasted at least three weeks each a month apart. I have now developed hypotension (extremely low blood pressure), chest palpitations and my heart is working too hard (my resting pulse is often over 85 beats per minute from a "normal" previous count of 70).
Two ECGs have come back "normal", my heart sounds fine and all my arteries are (doctor's words) "whooshing" fine but something is definitely wrong. My chest is constricted most times, I am lacking energy like crazy, I get dizzy pretty easy, am often short of breath and I just feel "wrong". I am getting chest x-rays next week to see if my heart is enlarged at all but things are really wonky right now; no one seems to have any answers and to be completely honest, I'm scared shitless!!
The doctors have removed me off ALL supplements and medications except my thyroid medicine to see if it was medicinally related; things kind of calmed down for a bit but it is getting bad again. The doctors have a couple of theories but nothing tangible to back them up. One is that between the car accident and illnesses I may have put my heart under some unusual strain that may or may not calm down on its own. Another theory is that with all the coughing I did with the viruses I may have caused some muscle damage or strain, again that may or may not calm itself down. There are no tangible test results that have them sending me to a cardio specialist yet (though I am getting pretty close to asking them just to send me). I must state now that the doctors are not overly concerned that my condition is life threatening!!
Right now I am being told to rest, try not to get overly stressed, drink lots of water and, believe it or not, intake more salt (too get the blood pressure up). My pain levels have been at a 6/10 or higher for well over a month so I am taking codeine when necessary and using my heating blanket like a maniac.
As you can well imagine, my energy reserves are majorly low. I am "uninvolving" myself from a lot of personal situations with friends and family. I am stepping back from my charitable work, housework is almost non-existent and I'm forcing myself to ignore the phone and just relax.
Fear is a major detriment. No matter how much I tell myself everything is going to be okay... it is very hard not to be scared. I really feel bad (worse than normal) and keeping a rosy outlook on things is a daily challenge. I apologize for bringing you all down with me... but I tell you this in hopes that it will help you understand some unusual changes in my attitude, mood and involvement. And there is always the chance someone else may be going through something similar and may have something positive to add, or may take something positive away with them from this post. As with everything I face in life, I will NOT go down without a fight! I am behaving myself and doing everything I'm told (maybe for the first time ever... LOL). I will keep everyone updated and let you know what, if anything, is discovered.
Thanks in advance for your well wishes and thoughts. I love you.
I believe everyone is aware of my car accident in October 2012. Well, my health has been progressively going downhill since then. Since January I have had two bladder infections a month apart and have had two major viruses that lasted at least three weeks each a month apart. I have now developed hypotension (extremely low blood pressure), chest palpitations and my heart is working too hard (my resting pulse is often over 85 beats per minute from a "normal" previous count of 70).
Two ECGs have come back "normal", my heart sounds fine and all my arteries are (doctor's words) "whooshing" fine but something is definitely wrong. My chest is constricted most times, I am lacking energy like crazy, I get dizzy pretty easy, am often short of breath and I just feel "wrong". I am getting chest x-rays next week to see if my heart is enlarged at all but things are really wonky right now; no one seems to have any answers and to be completely honest, I'm scared shitless!!
The doctors have removed me off ALL supplements and medications except my thyroid medicine to see if it was medicinally related; things kind of calmed down for a bit but it is getting bad again. The doctors have a couple of theories but nothing tangible to back them up. One is that between the car accident and illnesses I may have put my heart under some unusual strain that may or may not calm down on its own. Another theory is that with all the coughing I did with the viruses I may have caused some muscle damage or strain, again that may or may not calm itself down. There are no tangible test results that have them sending me to a cardio specialist yet (though I am getting pretty close to asking them just to send me). I must state now that the doctors are not overly concerned that my condition is life threatening!!
Right now I am being told to rest, try not to get overly stressed, drink lots of water and, believe it or not, intake more salt (too get the blood pressure up). My pain levels have been at a 6/10 or higher for well over a month so I am taking codeine when necessary and using my heating blanket like a maniac.
As you can well imagine, my energy reserves are majorly low. I am "uninvolving" myself from a lot of personal situations with friends and family. I am stepping back from my charitable work, housework is almost non-existent and I'm forcing myself to ignore the phone and just relax.
Fear is a major detriment. No matter how much I tell myself everything is going to be okay... it is very hard not to be scared. I really feel bad (worse than normal) and keeping a rosy outlook on things is a daily challenge. I apologize for bringing you all down with me... but I tell you this in hopes that it will help you understand some unusual changes in my attitude, mood and involvement. And there is always the chance someone else may be going through something similar and may have something positive to add, or may take something positive away with them from this post. As with everything I face in life, I will NOT go down without a fight! I am behaving myself and doing everything I'm told (maybe for the first time ever... LOL). I will keep everyone updated and let you know what, if anything, is discovered.
Thanks in advance for your well wishes and thoughts. I love you.
Saturday, 23 February 2013
Re-evaluating
It has been many weeks since my last post. A lot of stuff has been going on in my life and everytime I came on here to discuss it I would either rant too much or start crying and had to stop. I intended this blog to be a tool to help my friends and family understand me and what I've been going through; to make them realize I am fighting the good fight but to also educate others going through what I'm going through. To maybe give someone else some hope that they can live with this disorder and maybe even beat it. I really don't want it to become another place filled with negatives and hopelessness. But, the reality is that sometimes in this battle that is all you have left.
For those of you who believe fibromyalgia is all in your head... you may have a point. Here's an interesting little story. In March 2011 I had a brain MRI that showed an unusually large amount of lesions. I was carted off to neurologists with the very real possibility of a diagnosis for Multiple Sclerosis (MS). But no... I don't have any other symptoms... thank goodness. But to make sure we did a follow up MRI in January 2013. After a very stressful phone call from my doctor to come in to discuss the results (isn't that always a fun call to get) and two stressfull weeks of waiting I was thankful to hear there hasn't been any changes. I was told by the doctor though that if all they looked at was my brain MRI they would diagnosis me with MS and that would be that. So, maybe, just maybe, fibromyalgia is a neurological disorder. I thankfully have a very amazing set of doctors caring for me but I can tell you right now MRIs are not the norm for people suffering the symptoms I have. I truly believe ALL chronic pain / fibro / chronic fatigue patients should have a brain MRI. I believe if we can prove it is a neurological disorder maybe we can start finding a way to cure it. But that is a battle for another day.
As I had mentioned earlier, I was in a car accident on October 15, 2012 (I think that date will be forever engraved in my memory). I have not felt so bad and been in so much pain and been so exhausted since I first started seeing Dr. Tompkins for the fibromyalgia back in March 2011! An important thing to mention here is one of the number one causes of fibromyalgia is a physical trauma such as a car accident. I would be willing to hazard a guess that approximately 30% or more of Dr. Tompkins patients developed fibromyalgia from an accident. But the one thing I wasn't expecting was that I now have a new diagnosis of chronic fatigue.
Woah, let me tell you, chronic fatigue takes the fibro and makes it seem like a walk in the park. EVERY second of my day has turned into a battle!! I fight to wake up in the morning (even after 8 hours of undisturbed sleep)! I fight to pick out clothes to wear, brush my teeth, wash my face. Unfortunately, this is a tired that no caffeine can cure. I have to go to work, my life does not allow me to take sick leave or too many sick days at this point. Add to it that I have a high stress, time-sensitive job that does not allow for someone to be sick or feel sorry for themselves. I was very thankful for the month of February at first because we weren't busy. But this last week has been more hectic than normal and we had people on holidays so there just weren't as many hands around as there would normally be to see me over the bad times.
That caused me a lot of resentment. I wasn't mad at any one person, I was mad at the disorder, at the fates, at the heavens. But of course, who got the brunt of it? My family, my co-workers, my friends. For that I am truly sorry. But Angela, I owe you the biggest apology of all. It is really hard for me to talk about this right now and I often turned you away with a cold shoulder. It wasn't anything you had done... as a matter of fact if there is anyone in this world that would understand me (or at least try) it is you. So I am sorry.
But that brings me to an important, selfish, point. We always ask everyone "How are you?" And sometimes we even want to know! I don't want to tell people how I am. How I really am is exhausted, not just "worked hard feeling a little tired", I mean bone weary, brain numbing exhausted. I don't know whether to yell, scream, cry or fall asleep. I hurt, everyday, there are shooting pains going through me that feel almost like constant bug stings. My body does not want to cooperate, sometimes my knees won't bend or I have no strength to hold a coffee cup. I can't make it through the day without a handful of codeine and I don't want to be that dependant on anything! And I'm scared. This is the worst I have felt in a very long time... and I am scared I'm not going to get past this. And I'm angry. I'm a good person, I volunteer, I help my community, I give and I want to be involved. And I can't be!! By the end of a work week there is NOTHING left!! So if you ask me how I am... I'm going to say "I'm fine". Sometimes because I just really want to be; sometimes because if I say how I really am I'm going to lose it but mostly because I am trying to stay as positive as I can. So I'm Fine... I know you know I'm not really, but let me have this one okay? Don't pry, don't try to pull it out of me, just let me be Fine.
And of course, life goes on. I have a child with moderate Fetal Alcohol Spectrum Disorder (FASD) who needs constant attention and has many of her own struggles (but that's a blog for another day). And my husband severely injured his ankle so MY main care giver is out of commission. So I have a few more responsibilities than normal, more work to do.
But I have to believe that this too shall pass. I have to believe that Dr. Tompkins is going to come up with something, that we will put our finger on something that is going to be the answer to getting me better. So I trudge through all the things she has taught me. I keep following my sleeping patterns, eating patterns, resting as needed. I keep getting those damn blood tests that are always less than positive but we can't seem to get this darn body to absorb vitamins right now. Some days I just want to throw my hands in the air and just stop doing everything but what if? What if tomorrow is the day that all this work pans out? So I will keep trying and I will keep telling you how I am doing in the hopes that something I'm doing is going to help you. Every story is different... every journey is different. But sometimes there are similarities... and sometimes we triumph!!
Subscribe to:
Posts (Atom)

