The joys of Fibro

If you remember, in November 2010 it will be the anniversary of when my neurologist informed me that I more than likely (99% sure) have fibromyalgia. He recommended I get a family doctor and get the ball rolling to confirm the diagnosis since my health would not improve with time if left to it's own devices.

Last week was the appointment where my doctor finally admitted that yes, I have fibromyalgia. Since last November, I have spent many hours being poked, prodded, tested, retested,  siphoned for blood, etc... to rule out other causes of the multitude of symptoms I experience daily.

To that initial fibromyalgia diagnosis, autonomic neuropathy can now be added, again, not something I was expecting to hear, but something that finally explained why my body wasn't listening to me anymore. Autonomic neuropathy is something I have no control over unfortunately. So far, symptoms have been somewhat uncomfortable but am thankful that they are not as bad as they could be. It does make my days a tad more difficult to plan out since I have no advance warning when something will cease working for a few hours/days/weeks or when it will start working properly again. 

And since last November, I've also developed Chronic Fatigue Syndrome (CFS) This joyless problem stems from not sleeping well because of pain in various parts of my body. Even when I do manage to sleep, it's never enough, and not getting down into the healthy sleep levels that recharge your body means I am constantly exhausted, irregardless of what I am doing. Some days, the best I can do is crawl out of bed, make myself breakfast in stages, and make it to the couch to sit there feeling like a zombie and hoping I'll wake up sooner than later. There are days I literally have to crawl back into bed 2 hours later, too tired to keep my eyes open and if I push the issue, I get physically ill if I don't go lay down. Now picture this happening forenoon and afternoon just about every day and think of all the things that you do in one day that I cannot even come close to accomplishing in a week. My home is a disaster, doing dishes is an all day chore done a bit at a time, vacuuming is out of the question, laundry takes a day plus to get done. Even small loads that I hand wash to stretch the time between big loads wipe me out. Cooking is done in stages when my husband can help, otherwise it's whatever is found in the fridge that doesn't require cooking or involved prep time. Being on a fixed income also means no take-out on the days where even looking in the fridge provides nothing edible. Getting groceries using the city's transit system is nothing short of a feat of physical and mental determination just to get it done. And these days, getting groceries means spending hours in food bank line ups every week to get enough to eat for the following four or five days.

I am thankful for the help I do receive and those who give it freely and lovingly know who they are :) The world needs more people like you :) And I finally am seeing the rewards of what Pay it Forward means. I am on the receiving end now instead of the giving end and at first it's hard to accept, but once you get the epiphany, it makes it easier to say thank you and to accept the help given so lovingly and kindheartedly.

All of the above is also on top of the long list of physical ailments I already have like diabetes, COPD, IBS, Carpal tunnel in both wrists, migraines, food and med allergies, peripheral neuropathy...and I probably forget some since today is a fibro fog day meaning that my brain feels like it's sitting in a large vat of cotton batting and just couldn't be bothered to do anything that involves thought.

Talk about a different viewpoint

I was diagnosed with fibromyalgia this past spring. At the time, I didn't realise just how much it would affect my life. I had put on blinders so to speak and just did my best to forget and ignore it. 

A few weeks ago, it decided to remind me in a rather painful way that it was there . As the days went by, the pain grew and I could do less and less until I couldn't even walk a block without being rooted to the ground by pain and spasms. As it worsened, I turned to forums and websites on fibromyalgia and found so much information, some good, some bad, some downright frightening, that only made things worse. I finally booked an appointment with my neurologist who actually could fit me in the very next day as another patient had cancelled. After going over the symptoms, pain, cotton ball head, spasms, etc... we had a long chat and he answered my questions truthfully and with no added sugar coating. At the end of a 2 hour appointment I felt better, understood a lot more the process of fibromyalgia and what outside influences will make it worse. He also adjusted my medication and told me that I should begin to feel better shortly and he was right.

Today, I'm going through the mail at work (replacing receptionist for just this week) and came across a magazine called Abilities On the cover was a photo of Stephen Hawking. For those of you who do not know him, he has done mountains of research in the fields of cosmology, quantum gravity and especially black holes. You would think that it sounds pretty normal but now add the fact that this man has not spoken a word since 1985, is paralysed and depends on others to feed him, etc... and now you get a much different picture. Mr Hawking suffers from ALS but much to his credit he has not let this fact slow him down in the least. 

In the following article from which I've excerpted a rather significant viewpoint, it really puts my fibro in a different light and made me realise that despite ALS;  he can work, play, enjoy life, etc... why should I let fibro stop me from enjoying the things I like to do. Certainly it will take adjustments, but it doesn't mean that life as I know it is over for me. It's all in the perspective, the viewpoint and not the point of view.

"I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a very attractive family and being successful in my work. This is thanks to the help I have received from Jane, my children, and a large number of other people and organizations. I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope." Excerpt from Stephen Hawking: In His Own Words, 
On Disability.

And to show just how much freedom he has, in 2007 on one of his trips to North America,  he flew in the zero-G aircraft and experienced weightlessness for the first time in his life.

Dr. Hawking enjoying weightlessness for the first time

On a side note, go to his website and take a look around. I didn't realise until today that he has written children's books with the help of his daughter. I wish my children were still young enough to enjoy being read to from these books. They explain space and what's up there in a way that children will understand quite clearly. It's an amazing way to develop a love of science in children.

He has also been a presenter on Ted.tv. His viewpoint on the universe is fascinating and brings up many questions. Well worth watching.

Sweaters and squares and life oh my!

My niece sent me this clip she found on Vimeo. After listening to it, it reminded me that I am not alone, that I have someone who stands by me through thick and thin, through the good times and the bad, through sickness and health. That person is my darling husband. Despite his own health issues, he is there for me when I hurt too much that I can't even walk a simple block. 

Stand by Me from theRedPillRadio on Vimeo.

It also reminded me that I have a friend, a very special friend who also stands by me, who accepts me as I am. She is also by my side through thick and thin, giving me the support that I need. 

And all this reminds me that I cannot go through life thinking that I can do it alone, that I must be strong for others and forget about my pain. There are days that, yes, I can put my pain aside and be there for friends and family and then there are days that the pain is too much, that I try and bury it by keeping myself busy, but it comes through anyway. It feels like a beast with huge teeth gnawing at my nerves and muscles... and that's when I turn to knitting and crochet to keep me sane.

When the doctor told me that I have fibromyalgia, I didn't realise just how much it would hurt as it develops. I do hope it reaches a plateau sooner than later since it is already affecting what I can and cannot do. Between the fibro pain and the neuropathic pain I'd rather go with the neuropathic pain. This fibro pain is something that totally cuts my breath when it hits. I can feel it building and building when I try to keep going despite the fact that I'm hurting and then it just clamps down and I find myself unable to take another step and struggling for breath.

I've been volunteering as a test crocheter for a lovely designer, SmoothFox, and have enjoyed the process quite a bit. I've tested several squares and a beautiful blanket for her and look forward to testing more. I still have to take photos of the most recent test squares but I do have a photo of this lovely square that I completed a couple of weeks ago for her.

Neapolitan Ice Cream Square 12x12

As I keep testing other squares for her I will eventually have enough to assemble a lovely blanket of beautiful original squares.

I decided to participate in a sweater KAL with Spud & Chloe. I had never done a raglan type sweater before and I thought, why not join in, this way I get to learn how to do a raglan sweater and have immediate help and support if I run into a snag. So far it's going fantastically well. I love the top down construction of the sweater and the fact that it is seamless means no bulky side and underarm seams like other sweaters constructed separately. 

Raglan sweater so far

This one I am knitting for my 11 year old nephew. I decided to go with nice chunky stripes in navy blue and white. It's a great pattern and to have online support for questions and help is fantastic. You can see everyone's progress on Ravelry.

I have other projects that are almost done that I will post photos of in my next post.