April Fools! Not!

So today I am starting to feel a little better, the brain fog is lifting and I felt like I should write today. Some days when I'm having a fairly good day and I can remember what life was like before Chronic Fatigue, before the random joint and muscle pain, before my body would feel like lead. Sometimes I wish that CFS was just a joke that my body was playing on me and that one day I'll just snap out of it, but that's not the case. I continue to search for improvements that I can make to my health. It is all the more important to eat right, live as stress free as possible, do gentle exercise and learn to cope. In a fast passed world where its so important to be accomplished and do as much as possible it is even harder to take care of myself. I moved to a big city 8 months ago with lofty ambitions of starting my life over. I left a long term relationship that I felt was toxic to me, I changed careers to something that should be less stressful, and I moved in with a friend and her family. Granted I do well with change, really well, but what was I thinking? There has been a lot of adjustments including a increase in restrictions to my diet. This past winter was one of my worst seasons for my health and that took a toll on my mental health. My muscles felt like they were on fire, it made it hard to move. My brain felt like pea soup and all the connections and reconnections I was making with people dropped off. I stayed home a lot and very few people contacted me. I felt very alone. I was used to feeling alone with this, but this winter really sucked. This being said my belief in what I was doing in my new career path and my choice to leave my old life behind never faltered, ever. I knew had made the right decision, and I still believe this. I was just going about things in not the easiest way. I joke with my sister that we are very stubborn and seem to like to do things the hard way. WHY? Why do things the hard way if there is an easier way? Not that I want to coast by in life, but life is hard enough living with a chronic illness. Why not try to find people that have gone through similar things and been successful? and learn from them.
It is all the more important to take care of my health and eat properly, all of these things go hand in hand and it is so much harder in a busy city but I will succeed because I have too much to do in this world to help people and make a difference, just need to find the right people to help me along the way.  

So what's new in life?

I would like to share a Facebook post then explain a little of the many changes I've undertaken in my life in the persuit of a healthier, happier life. Please forgive my typos part of my condition makes it difficult for me to think completely clearly and I hope as I write more this will get better, after all to get great muscles we must excerise them.

 "Well 2012 was a year of change and my old world did end. I turned 30, I ended a relationship that no longer made me happy, I moved cities and changed careers. I am grateful for the people that have remained in my life and for all the new people I have met. I am grateful for old friends that have come back into my life and what I have now. And yes I am grateful for how difficult this year has been because 2013 can only get better and I will appreciate every good moment. Happy New Year everyone and stay safe."


So I have now turned 31 and winter has not been kind to me health wise and I was feeling quite down for a while. I decided to pick myself up and dust myself off, I am strong, I am a fighter. The problem with being strong and being a fighter is that people think you don't need anyone to lean on and not only that but people who are not as strong can be intimidated by this strength. People who don't have the courage to change things that they fundamentally dislike about their lives, who ignore the problems, begin to have to face them when confronted with someone who has made radical changes in their live's. I do not talk about this to talk down about people, change is scary it can be hard to face change, and sometimes people just are not ready. Sometimes people have been so let down in life that the changes needed may not seen worth the effort because after all "it's not going to work out anyway so why try?"

I've made many changes in the persuit of being healthier, happier. I think we forget how much our happiness affects our health and vice versa. One of the biggest changes I made physically was to radically change my diet. My sister described me as a carbivore. I ate bread, pasta, baked goods, etc. like that was the only food available. She had been trying to get me to change my diet for years, Gluten intolerance runs in the family as well as diabetes, lactose intolerance, and other food issues. I refused to accept that these foods might be problematic, especially wheat. 

In January of 2011 I woke up not feeling quite right. Within half an hour I was curled up in the fetal position ready to pass out. When the pain had subsided enough I looked up my symptoms on the internet, damn stubborn I am, and decided that I needed to go to the ER. Now. Problem was my boyfriend (ex boyfriend, more on that later) had the car (not that I could drive at that point) and was at work, and I hardly knew anyone in Red Deer to even ask to drive me. At any rate I made it and after several hours it was determined that I had kidney stones, joy. They sent me home with drugs and I eventually passed about 7 stones total. Well a month and a half later I was struck again with the same horrible pain and went to the ER again. This time I was in all day and they decided to send me home with the IV still in my hand and was told to come back the next morning. Well that night after not eating all day was home alone and eventually decided to eat. I made my way to the kitchen and nearly passed out when a wave of pain hit, I had to sit on the floor. I contacted my boyfriend urging him to get home as soon as possible. Hours went by, went he eventually came home he was drunk as a skunk, to the point I had to help him after he fell over into the bath tub, all while I still had an IV in my hand and in severe pain. I went back to the hospital then next day.After two days of being pretty much alone, hopped up on morphine they offered me surgery. My stubborness kicked in again and I said no thank you, pretty silly at least I would have been taken care of at the hospital, I went home and passed the stone on my own.

So now it was almost Easter and my sister sent me a link on what food intolerance especially gluten sensitivity does to the body. The chronic inflammation causes all sorts of problems in different systems of the body, so even if you don't feel bad the inflammation is wreaking havok. It was time to make a change. I began by taking out wheat, big surprise little support at home on this. After two weeks we rushed out to meet his family for dinner, completely forgetting we ordered pizza and ate it. Oh my was I sick. Severe stomach cramps, nausea, and my bowls were beginning to feel really unhappy. OK wheat was definately a problem. From there corn, eggs, potato, tomato, and rice all became problems leading me to now eat Paleo for Auto immune. I will go more into this another time. For now all I can say is in some ways I feel better, I don't have digestive issues at all anymore unless I accidentally eat something that I shouldn't.
Signing off for now. Stay Positive and stay Healthy people.  

Long time no write

So I lost touch with writing for so many reasons and have been thinking alot about writing again, more for me than anyone else. So here I am. To ease myself back in I would like to share a poem that I recently wrote. I've been having many bad days lately and rather than continue to keep my emotions and frustrations inside where they were eating away at my joy I chose to write and get it out.

I hope this helps others, if not I know it helped me.



 Ghost

I feel like a ghost

Not quite living yet not quite dead

A shell of the person I used to be

A shell of the person that can never completely return

On my best days you get an idea of the person I used to be even though

I’m not whole

On my average days you may get a glimpse, you may be touched, but you

May not see me

On my bad days, you may not even know I am there

I am a ghost

I wish to return to the living

Some days I may even wish to join the

Dead

I mourn

I mourn who I know I am that I cannot always show

I mourn for the life I know I deserve

I mourn for the many more lives I could have touched, instead to choose between helping a few and not living for myself

Or

Try to live for myself but not be true at all

I am a ghost for I refuse to give up

I refuse to be a living corpse

My spirit refuses to let my death go unnoticed

My spirit seeks a path back to the

Living

My spirit seeks peace without being merely a shell

My soul seeks to live for me and not just for others

My soul seeks to live for immortality

For the long lasting effects I will have on others

For the positive energy I will pass on

So I will fight

The ghost that I am will not go unnoticed

The ghost that I am will be more whole than many of the living

The ghost that I am will know more about life and how to appreciate it than many of the living

Yes I will continue to fight

Yes I will continue to seek a path to life

I will not give up

So what are my symptoms?

Besides the obvious that there is a great feeling of being tired that really doesn't go away, there is alot more to CFS than most people realize. I think the hardest part about living with CFS is that most of the time I don't look sick so its hard for most people to understand and remember that there is something very wrong in my body. I remember dragging my but out of bed and going to work before I had any idea what my problem was, getting to work and barely remembering the drive. Every break I had I would just have to lay down and close my eyes, now remember before this I was always on the go, I didn't stop to take a break, I would crash. I started having trouble remembering little things that I knew, work became harder and harder as part of my job was to think on my feet and be able to adapt including implementing strategies that supervisors had given me. I just wouldn't remember until someone would remind me, and then I'd just feel stupid, it was like "I knew that! What's wrong with me?" Then there was further embarasment when I would meet someone knew and I swear to you two seconds later the name would be completely gone from my brain. Previously I had a great memory, especially for names, I could tell you my childhood friend's name, dog's name, from twenty years ago but now I couldn't even introduce people to each other.

I was now in the land of fog, brain fog. It became increasingly harder for me to focus on even doing one task, now navigating though something I had done a hundred times before became difficult and I would forget steps. I would get so frustrated with myself and with others because they didn't, and for the most part still, don't understand that my brain is in there somewhere and I was trying but it just wasn't working. I had employers think that I was actively not listening and just slacking off, even after the diagnosis. Like I said in my previous post it came to the point where I just couldn't work anymore and I took a leave of absence.

So I tried to sleep as much as I could but the harder I tried, the harder it became to sleep. It came to the point where I wouldn't be able to sleep until 5 am, 6 am, 7am, 8 am and my fiance would be getting up for work in the morning. I do have to thank my wonderful man for sticking through this with me, we starting dating not long after my migraines started and we have been together for five and a half years now. They wern't always easy times, and he hasn't always been as understanding or as helpful as I would like, but he's still here and that says alot. Suddenly I'm very emotional, the love he has shown me is bringing tears to my eyes, but I still have days where I want to strangle him for not putting his dishes in the dishwasher or taking the garbage out. Anyway I will get into this more in a later post, back on track.

I would sleep then until 2 or 3 pm. I would force myself to get out of bed, or rather my cats insisted (if you have ever seen the Simon's cat cartoon where the cat wakes his master, its just like that). I would get up, go to the bathroom, and go lay on the couch for pretty much the rest of the day. I would try to research on the internet as much as I could to see if I could find things to try to improve my condition. One day I googled Chronic Fatigue Syndrome and it came up with an article about a young man that had been very much like me, and now he was suffering just like me. He had CFS and he was on the Marshall Protocol. I would like to go further into what the Marshall Protocol (MP) entails at a later date when I explain the different treaments I have found available and the reported pros and cons of each. I was excited to have an idea of what might be going on and that there might be a cure, since everthing I had found so far said CFS is not only incurable but also difficult to treat to get any improvement. I spent the next couple months struggling to even get of the couch, my body felt like it was weighed down by cement. I was so tired that I couldn't get up to get something to eat, this probobly didn't help my energy.

Looking back at that time in my life it was like I was a breathing corpse. I couldn't function in pretty much any capacity. I couldn't work, I couldn't paint, I couldn't go to a simple family gathering, I couldn't do anything that I previously enjoyed. Looking forward I probobly won't be able to do most of what I could before, my old life effectively is dead and gone and most of my friends and relationships have died along with it. I mourn my old life and I mourn what my life could have been without CFS, but I go on.

Hi, sorry people I'm just learning how to make a blog and I'm not that technologically savy. That being said let me try to continue where I left off.

In University my main mode of transportation was riding my bike, living in Lethbridge where the chinook blows in and its not unusual for the wind to be around 50 km/h gusting even higher. I biked pretty much all year round, even in the winter if the snow wasn't too deap. I worked part time (almost full time) and went to school full time, I would joke that what I was doing was the equivalent of two full time jobs pluss what social life I could have. My first two years of university I was a double major Biology (premed) and Art. So 2-3 classes with a lab on top and atleast one art studio class. I was a busy girl and my mind was constantly on many things at once, I'm sure this contributed to the insomnia or was atleast part of the reason. I'm sure I'm forgetting alot of details but I will get to those on a later date as I get into my 7 stages of grief at the loss of my old life, she's gone.

Then spring of my second year of university I kept getting a really sore throat on and off for months. I finally went to the doctor and she said I had mono. I disagreed at first I wasn't anymore tired than normal but sure enough the tests said thats what I had. It took a couple months but I got back to feeling normal. Half way through third year I switched my major to Neuroscience, I found the combination of psychology, biology and chemistry fascinating, didn't really want to be a doctor anymore, I didn't like the classes enough to work my ass off to get the grades I needed. A year later loving the classes I decided to go for a CO-OP position to gain real work experience in my field. For those of you who don't know a CO-OP is a partnership where the government pays half your wage and the employer pays half, it counts toward your degree. I didn't like working pretty much minimum wage jobs anymore. Oddly enough I got hired in a Molecular genetics lab working on winter wheat, not exactly brains and behaviour.

The lab I worked in was in a federal research station and they were still going through the process of cleaning the building and making it healthy (this included removing asbestos, fun hey). Right before I started I came down with a virus that messed with the connection between my eyes and my equilibrium, I constantly had the spins but I finished my finals and tried to heal before starting my new job. Also right before this I began getting numness in my left thumb tip, curious but docor couldn't really say what it was. I recovered but shortly after starting I came down with Mono for the second time, this time it nearly knocked me on my ass. I had a hard time performing my job duties and they offered to put me at part time but I couldn't afford to live off the wage decrease so I slugged through and had pretty much recovered by the end of my 8 month term with them. Then I moved to another lab that was located in the basement of the same building. The air circulation was horrible and it was regularly 30+ degrees C, not to mention the lack of removal of the chemicals in the air we regularly used. October of that year I experienced the most excrusiating headache, I couldn't move my neck. The headache was a week and a half strait while I was packing to move into a new place on Halloween. Crappy, yes people health wise I'm a lemon.

My first MRI happened a couple months before this, results had been inconclusive. That annoying numb thumb had been concerning enough to warrent this now I needed to see a Neurologist. Several months go by before I can see and expert, besides the excrutiating pain in my head, sometimes I would see a rainbow around lights. Well the neurologist diagnoses me with Atypical migraines, and orders another MRI just to make sure, came back the same as before: non-localized foci in the right hemispere, for those who don't speak Doctor I had tiny dead spots all over the right side of my brain. The nurse assured me that this wasn't abnormal in Migraine cases, OK then.

I worked in that basement lab for almost a year and a half and then my term was up. I moved on and decided to work more in the field that I was interested in, I started working with brain injured adults. I moved up relatively quickly in the agency. Shortly after starting my new position I came down with mono, again. Thats 3 times in something like four and a half years, mono likes me ALOT. This time I take two weeks off work to try to help me recover however when I returned to work I became jaundiced and required another 2 weeks off from work, upon return to work this time I returned at only part time and gradually tried to increase my hours but I was very fatigued this time and found it very difficult especially with all the gossip and back stabbing going on in the workplace. I decided to leave and become a Behaviour Therapist/interventionist. I began working with children on the Spectrum of Austism. I worked part time but was easily talked into taking on more than was wise for me. I was slowly recoving and was getting close but in the Spring of 2008 I crashed and crashed hard. I thought that it was mono again but the tests showed that it wasn't and I was far to tired to work, so tired that it was hard for me to think and my short term memory was not good. It took a couple months and batteries of tests, finally in October of 08 I was diagnosed with Chronic Fatigue Syndome. Whoopie I had a name to call it now, where was I to go from there?

Hi everyone

So today is kinda crappy, my energy level is very low but for some reason I felt like today was the day that I wanted to jump in and share my experiences with Chronic Fatigue Syndrome. First I would like people to know what my life was like before this illness. I was always one of those people that was constantly on the go. It was hard for me to sit and do nothing, infact I was usually doing about three things at a time. I was always really active: biking, walking, hiking and working out were things I loved to do. I loved hanging out with my friends and family, was always ready to go do something like dance at a club all night long.
I must add that I have had insomnia since I was about 13 but never really let it bother me, I just fuelled up on coffee and kept going. It wasn't unusal for me to go on about 3 hours sleep a night starting on and off in Junior High school and increasing gradually through High School and into University