Monday, August 6, 2012

Are you froggy?

Welcome to my “Froggy” blog.
So you’re wondering why am I “Froggy”? Well, I’ll explain that.
Froggy is my fun term for foggy. If it’s foggy ouside, my kids get a kick out of my phrase: its Froggy out. So, when I’m having a bad day, they understand a little better when I say its froggy inside.
For many years I have not been ‘normal’ in the sense that I don’t feel right. Things tend to go wrong and when they do, they go very wrong. When I get a cold, I don’t suffer as a normal person would, I am down for at least two weeks. And when I say I am down, I mean down and out. I cannot function. So, here’s a little bit of history:
At 17 I was diagnosed with IBS (irritable bowel syndrome), and Raynaud’s Syndrome. At 19 I experienced what was undiagnostically (could that be a word?) referred to as a stroke. I lost the feeling and use of my left side for about three weeks. My family Dr. wanted it diagnosed as a stroke, but nothing showed up in the CT scan. My specialists told him I was psychosomatic. For years after this, I believed I was a little bit crazy. Then, about ten years ago I began to experience dizziness. It would come and go and would overall last for a few weeks then go away for a while, and then come back again.
Five years ago, I was working at this awesome job, in a municipal government office. At first I started to get dizzy again, just spells, certain times of the day. Then it became so bad that I couldn’t get out of bed; the room was spinning so bad I couldn’t get my balance, and I was nauseaus all the time. Needless to say, I couldn’t go to work. As my position was on contract, I lost my job. I stayed home for a year and a half, the whole time wondering what was going on with me. One doctor told me it was migraines, another told me it was stress (thanks for the prozac…), and still another called it Labyrinthitis. I saw an ENT, had numerous MRIs and xrays, blood tests and so forth, and still with no positive outcomes.
So we went with this diagnosis for a couple of years. In 2009 I experienced severe malofacial pain and was told it was Trigeminal Neuralgia. I was prescribed a medication used by people with epilepsy, and had a bad reaction. Then the next summer, I had bad chest pains, and was brought to the hospital in an ambulance. I was treated with Pink Lady, spent the night in the ER and then was sent home. In October of 2010, I experienced severe gastrointestinal pain and was hospitalized for four days and given morphine to combat the pain. After four days of liquid diet and morphine, the pain began to subside, but I still felt like I had been hit by a freight train, and the normal little movements like walking from the hospital to the car were darn near impossible.
After this last episode, my husband finally convinced me to see a naturopath. I thought, what could it hurt? It’s not like my DRs can tell me anything. After telling her all of my problems, and bursting into tears of course, she suggested that I was NOT crazy! Imagine that! She also suggested that I start immediately on a gluten-free diet, which I did. At the same time, I relayed this information to my family Dr at the time, who consequently thought I was crazy. She of course scoffed, because naturopaths are not considered real Drs in the medical profession. But, reluctantly she scheduled me an appointment with a gastroenterologist. Those of you who live in the north will understand when I say it took another year to actually see the gastroenterologist, even just for a consultation. Eventually, I was subjected to an endoscopy, now almost two years after my hospital stay, where the only evidence found was some bleeding in my small intestine and it was probably caused by my IBS.
Needless to say, the gluten-free diet helped and within a month I was almost back to normal, for almost a year. Then other things started to come back. I started to get dizzy again, I had trouble finding the right words again, I couldn’t be far from the bathroom again, among other things. So, I went back to the Dr. My usual Dr had moved away and my new Dr (whom I still haven’t seen :) ) was absent. I was scheduled to see a locum. This guy was great. He couldn’t believe that I had been dealing with this for ten years! He was very understanding and sat me down and explained to me that since I had been suffering on and off for this long, it was likely that this will not go away and I will have to figure out how to live with it. He suggested that I may have Fibromyalgia, after asking me many questions, and listening to me blubber for over an hour. I left his office feeling some sense of relief. Not because I had Fibromyalgia– I mean who wants to be sick right?– but because I had a reason for being the way I am. I am not crazy. I know this now, and this Dr will probably never know how much he helped me.
I have done some research on Fibromyalgia and have come to many conclusions about what I have been experiencing. This blog will serve as my diary, if you will, about my life and what I have come to know and understand about my “Froggy” days. If you have the same kinds of days, for whatever reason, I hope that you find this blog helpful. Please feel free to leave comments about what has helped or hindered in clearing the frog.

Wednesday, August 1, 2012

What does “Froggy” look like?

So, if you’ve been unwell for years, you’ve probably been faced with series’ of questions about how you feel. And statements about how you ‘don’t look sick’. This is normal of other people to ask, but is so frustrating to have to answer! Especially if you cannot come up with a reason that will make any sense.
If I’m having a froggy day, forget it, you won’t get a logical answer out of me. I will become instantly frustrated and anxious. Not because you asked the question, but because I simply cannot get the answer to come out of my mouth and make sense at the same time!
This has bothered me for some time. Can I really be sick if I cannot explain it to anyone? Apparently, yes I can. One of the afflictions that rears its ugly head when you have fibromyalgia is called fibro-fog. This is the inability to concentrate, form proper sentences, make simple decisions, use the right words, and remember simple things like names and titles. In my case, it also includes the inability to hear properly if words are spoken too fast.
Just today I was introduced to Christine Miserandino and her “Spoon Theory”. And thanks to my wonderful sister, this day has inspired me to start this blog. Finally, an explanation that makes sense to the normal everyday person!
To sum it up, Christine’s Spoon Theory states that when you have an illness (especially one that can’t be seen) you have to count your spoons at the start of every day and prepare to spend them all. Every task, even the simple ones like getting out of bed, will cost you a spoon, and sometimes two. When you are out of spoons, you are out of functional energy. For more information, and I really urge you to read her theory, visit Christine’s site at www.butyoudontlooksick.com.
I had my own way of describing how I felt, but this theory makes way more sense. I used to tell people that going to the post office was “too many steps”. Not just steps as in get in the car, get out of the car, but literally, how many steps it would take me to get to the car, and then get in the car, and then get out of the car, and then how many steps it would take to get into the post office, and then back again. If I thought something required more steps than I could handle, I just didn’t do it. This led to an anxiety disorder that kept me in my house for a year and a half (but that’s another blog entry for another day).
So now, that I know to count my spoons every morning, I can move forward with my spoon-rationing life in a happy sort of way. No more depressing thoughts about why I am like I am, just good thoughts about how to live the way I am.