Posted: May 12th, 2010 | Author: FibroChick | Filed under: Fibromyalgia | Tags: Fibromyalgia, Fibromyalgia Awareness Day, Sypmtoms | 8 Comments »
I have been trying to decide what to write about for Fibromyalgia awareness day. I thought -it better be magnificent. Maybe I could write about support, maybe a research post about the condition itself, maybe a post about symptoms so others could become ‘aware’. Then I realized, I have become aware. I have had such a long journey and I have finally become aware. I was diagnosed eighteen years ago. Do you know what Fibromyalgia was eighteen years ago? It was a catch all. It was a name that didn’t mean anything. It was a condition, but not really. A diagnoses, but not really. To most people it meant that someone was weak, lazy, depressed, whiney.
Until very recently I had never, not once, visited a specialist and had them say ‘this new symptom you’re experiencing is part of Fibromyalgia’. Until very recently it was like my body was made up of many different bodies all unrelated to each other, each taken care of by a different specialist. Each new symptom has been explored, tests have been run, and everyone has held their breath and held out for hope that this new symptom would lead us to what is really wrong with me. My mother- when I was a child, my family physician- always, my husband- as an adult and I have searched, what feels like, the world over. We have searched for the final puzzle piece that will make the picture of my illness clear. We are aware now, we are aware now.
Where symptoms associated with Fibromyalgia once were; tiredness, morning stiffness, aches and pain, anxiety and sleeplessness. They now include; hypoglycemia, TMJ, skin disorders, irritable bowel, restless legs, low blood pressure, cognitive overload, memory problems, nerve pain, myofacial pain, acid reflux, interstitial cystitis, vision changes, increased sensitivity, irritable bladder, among others. These are now clinically documented symptoms. I believe that this will ease the journey for those just developing this disorder. I believe that how far the science of Fibromyalgia has come will allow focus on what to do about it.
I am aware now.
Where once I was resentful to the doctor who diagnosed me for not bothering to figure out what was really wrong, now I am grateful that he recognized a condition others scoffed at.
Where once I was embarrassed to tell emergency room staff that I have Fibromyalgia, now I am empowered to help educate.
Where once I was searching for what was really wrong, now I am searching for how to make it right.
Where once I would not have asked for help when suffering from my condition, now I may reach out.
Where once I wouldn’t tell my neighbours, now I will wave, even when I get the mail at 3:00 p.m. in my pyjamas.
Where once I fought against my condition, now I will fight for it.
Where once I resented those who complained for making me look weak, now I am grateful, I am thankful, I am aware that you are the reason for this day.
Where once I was unaware, now I am aware.
Posted: April 28th, 2010 | Author: FibroChick | Filed under: Fibromyalgia | Tags: Depression, Fibromyalgia, Rheumatologist, Sadness | 13 Comments »
Seems this world is not one for emotions. It seems these days the slightest show of emotion has doctors whipping out their prescription pads and family members running for cover. My Rheumatologist once stated that I needed help for my depression because “most people with Fibromyalgia don’t cry in my office”. This, I will point out, well discussing that fact that my symptoms were so severe I had to leave my job. Really? It’s not normal to feel sad, angry and distraught when your illness takes your life away? Really? My mother used to tell me about the days that doctors where so oblivious to what women were going through that they would suggest that an upset women just ‘needs a new blue dress’. I ask you, is today any different? Now we seem just to need a nice pink pill. Well golly gee, if only I’d known doing nothing could be this satisfying. So peaceful and serene . . .
I sometimes it feels like I am the only one who is concerned about anything anymore. Quite frankly, I find this lack of worry rather worrisome. I wonder, where on earth we’d be if some of the great minds of the past had their sense of urgency dulled. What if simply ‘being’ had been enough for Beethoven? Why is there is no room for urgency in this world? No room to panic that something might not get finished, ’cause hey, you know what, everything is just fine. Something bugging you? That was in the past man, don’t look at it, let it go. Why dwell? Well, maybe Van Gough has the answer. Do you think he ever dwelled in a place in his mind that others may not have found as beautiful as his paintings? I certainly think so.
I actually don’t think we are meant to be happy all of the time. Content all of the time. There are reasons to grieve that go beyond the everyday accepted time limits for grief. What about regret? Don’t you miss regret? Shouldn’t everybody have regrets? There is something that happens to us as people when we refuse to regret. It’s ok to regret something, and move on. It’s ok to revisit regret from time to time so we don’t make the same mistakes over and over again. It’s ok to remember. Does it hurt? Sometimes, but that’s ok too. It’s ok to grieve. People seem to always push to get rid of hurt for fear that it will hold them back. But sometimes I think that dulling the hurt, the non-acknowledgement of the hurt can hold us back even more. Some days are just sad. We work really hard to teach that to our children, that it’s ok to feel. Then we work extra hard to make sure we never show them. It seems we’re supposed to work extra hard to not show anyone. So, to my Rheumatologist; it’s my life and I’ll cry if I want to! You would cry too, if it happened to you.
Posted: March 27th, 2010 | Author: FibroChick | Filed under: Fibromyalgia | Tags: Fibromyalgia | 3 Comments »
Things I would do if I felt well enough:
- travel to France
- attend very important business meetings :-p
- go out dancing with the girls
- finish my degree
- wear my new kickin’ heels from Brazil (they are shiny! and kickin’)
- work, work, work
- laugh everyday
Things I’ll do everyday instead:
- tell my daughter and my husband that I love them a gazillion times a day ?
- wear mascara everyday
- drink tea with the girls
- always have a good novel on the go
- wear very cute pyjamas
- write, write, write
- laugh everyday
Posted: March 24th, 2010 | Author: FibroChick | Filed under: Fibromyalgia | Tags: Fibromyalgia | 2 Comments »
I cannot take another day of this unproductiveness. I do quite fear my head is actually going to implode if I have to be this for one more day. I cannot watch another tv show, or have another bath. If I do not figure out something to do soon that makes me feel like a contributing member of society then I may just regress to infancy. Why not? Pretty much the same. Just laying around, only half making sense. If only I was cute enough for people to bring me presents of O’kosh overalls. My butt’s getting to be about as soft as a baby’s too. What I wouldn’t give to exercise! Not this walk around the block or try to stretch just a little bit exercise, but real, heart pounding, muscles screaming, sweating like crazy exercise. Gawd how I miss it.
And making money! Boy do I miss that too. Not having money, but making money. Doing some action that someone perceives as so valuable they are actually willing to give me currency for it. Oh how I miss making actions worth currency. I actually started direct investing so as to have a little bit of action that may result in currency but that’s kinda long going and now that I’ve finished my research my money’s just sitting there growing. Like me. Just sitting there. Hopefully the money grows bigger than my butt does.
Though with this lack of exercise the race is on. The race is on my friend.
Posted: March 23rd, 2010 | Author: FibroChick | Filed under: Uncategorized | Tags: Fibromyalgia | No Comments »
I was diagnosed many years ago. I was also my sickest many years ago. That is, until about a year and a half ago when everything just hit me full force again. There is a line in Pink Floyd’s Comfortably Numb that plays from time to time in my life; ‘when I was a child I had a fever, my hands felt just like two balloons, now I’ve got that feeling once again, I can’t explain, you would not understand, this is not how I am.’ Seriously, this is not how I am. Usually I can tie my own shoes, honest. Carry my own groceries and take care of my houseplants. Ok fine, that last one has always been a stretch.
I have spent the last year and a half trying to recreate whatever situation lessened my symptoms before. I have revamped my diet and my exercise routine, I have stayed motivated and thought positive, I have upped my vitamins and taken many baths. To no avail, nothing eases this pain. I try desperately to think of what helped in the past but it is hard to remember. I was a teenager. I can confidently say that shaving my hair into a Mohawk and dying what’s left purple probably won’t help.
Today a dear sweet friend came to visit me. She said that what she wants most is to be able to wake up in the morning and take herself for granted. So true! To be able to waken and then just go about my day without having to even think about it, what freedom that would be! But I think for me, and probably many others, that is unattainable. Striving to be symptom free is a dangerous path, one that can lead to quick fixes, desperation and eventually, despair.
I love this thought though, take myself for granted, it is as beautiful as my dream home and as lovely as my most wanted vacation. But this path to wellness not only smacks of effort, it is chained with effort. And that needs to be ok. I think the only way to be ok is to make it ok. To function from within the symptoms. To cope. To use all those four letter words that mean cope. Love, hope, pray and a few other ones saved especially for the frustrating days. This must be the path, otherwise, who knows what might happen. I just may find myself in the juice section of the grocery store eyeing up shades of purple kool-aid.