My Invisible Disease - Part 2

Well, my family doctor had referred me to a Fibromyalgia Specialist in Sunnybrook Hospital in Toronto, Canada. I must add it was an eighteen month process to be able to see him. I waited six months for my appointment and then another 12 months before the actual appointment day. I see him now every six months to monitor my condition. He has diagnosed me with Fibromyalgia and he is suspicious of it possibly being Limes disease. I have been tested three previous times for Limes and all tests were negative. In addition, I have had two complete Immunology screenings done in McMaster Hospital with everything coming back as negative results. This has definitely been an adventure and I get the feeling that it's hardly over.
In the meantime, day to day, I struggle with most parts of the day but I do my best. Lately, I find myself sleeping a lot, the chronic fatigue component of the Fibro has been
very prominent. Despite all the sleep, I never feel fully rested. I know this is a hard thing for regular people to accept because it is illogical to perceive this is even possible. However, this is pretty common with most Fibro sufferers, as I am learning. I am also learning that each Fibro patient has their own unique distinctions. One patient may have prominent depression symptoms while another's distinct symptom may be chronic pain. No matter how bad things get it's amazing for me to imagine there is someone dealing with something worse than myself, but it's true.
My motto that help's me get through each day is "Take a deep breath and do the best you can".

My Invisible Disease - Part 1

It has been thirteen months since my last entry and a lot of things have culminated during this time. However, I will focus on the past few days first and then address at least the more significant happenings during the rest of this time.

Once again, I find myself recovering from what I rate as a pretty significant flare up of my symptoms. Yesterday, the pain was extreme from head to toe with the added bonus of having the sensation of pins and needles being pushed into my head. There were moments when the pain was so intense I thought I was going to pass out but instead I was wiping off the tears on my face. Along with the extreme pain, I had extreme fatigue as well. So, I found myself taking a lot of naproxen in addition to my regular dosage of pain medication and just simply sleeping it off.

In the past few weeks, the fatigue factor has been higher than usual and I have been sleeping around thirty percent more. If I were to give it a score out of ten, ten being the worst and 0 being the best, I would give it an eight. The normal rating of the fatigue would be a six out of ten. The pain yesterday would get a nine out of ten where it typically is a seven with the sporadic rating of an eight out of ten. The regular dosage of pain medicine would be enough to do it's job and bring it between a four or six. This is typically enough to continue my day in my modified world.

In order to have some sort of life, I was able to realize that modifying my activities to fit within the boundaries of my invisible disease would be the only way. This is not always easy but I have learned, it is well, necessary. Even on the days where I feel mild symptoms. Those days are especially tricky because the boundary lines are invisible and the fear of crossing them are combined with the temptation of maximizing the day. For me walking when you can jog seems to be a waste of time and the loss of an experience. However, I think walking twice the distance then you are able to jog is a wiser choice under the circumstances.  It is this modified way of thinking and the right combination of pain medication which has allowed me to improve the quality of my daily life.

The appreciation of having something as opposed to the alternative, I guess it is the same as the count your blessings approach. Take stock of what you have and what you are able to do instead of highlighting what you can't do and what Is missing in your life.

I know it sounds logical and simple but believe me when your life is suddenly turned upside down, it is a difficult concept to manage.