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Showing posts from August, 2013

Health-related quality of life regarding sleep and fibromyalgia

Health-related quality of life regarding sleep and fibromyalgia "The study concluded that among the FM population as a whole sleep difficulties were associated with decrements in mental and physical health-related quality of life. Therefore these results suggested there should be greater emphasis on the treatment of these issues." 
Sleep and Fibromyalgia don't really seem to get along but it is true it can be ignored by doctors. When I was younger I was often told chronic insomnia cannot be treated. It reminds me a lot of what they think about chronic pain in fact... that seems to be unable to be handled either. It seems they are only willing to deal with temporary insomnia and pain. Unfortunately there have been a few studies to show with FM even those with no other sleeping disorders... they are not getting quality sleep, whether they get 8 hours or 10 hours. Waking up feeling tired even though you have technically gotten your 8 hours is not exactly functional sleep. Ho…

#Invisble #Illness Part Two... The illness defined and medical stigma born

 Later when it is illness is 'defined' there is a sense of relief to some extent because finally you have this label. I mean it is good, isn't it? To have something to offer people as an explanation as to why I am always so tired. Why I cannot do all the things they want me to do. Why I have to pace myself. It isn't so easy as all that. With the label comes the stigma. This idea of weakness. That if I use it that I should feel some shame about it. And you would not think that. But I found it very quickly the rules of the game when it came to Fibromyalgia ... that there was this profound stigma with it in the medical community.

I think to some extent I would have been doomed to disappointment anyway. Given I had always thought so well of my childhood doctor that others simply did not do well in comparison. And there is this sort of inevitable sense of disillusionment that comes into play when you understand fully that they are all too human with all to human fa…

#Migraines can't #kill you... one of the worst myths

Because of course they can. If you have chronic migraines and have visited a forum for just a year you will learn this fact clearly. It will occur to you if you know this fact from a small forum how many times does it occur in reality? Seemly when you speak to doctors it is so rare it is barely an issue at all. They brush it off. It is frightening at times how unconcerned they can be about the risks associated with migraine.  Migraine- Never again  in this article Ellen mentions some of the situations migraines may kill:

"How can Migraine kill? Here is a short list you may never have before considered:
Migrainous stroke;medication side effect;medical mistake;misdiagnosis;accidental overdose, even from simple over-the-counter medications such as acetaminophen;accident (often resulting from Migraine symptoms or side effects of medications)the purposeful ending of a life (suicide) to escape unrelenting pain and other debilitating symptoms, severely reduced quality of live, the stigm…

#Invisble #Illness Part One... in the beginning there was no label

In honor of upcoming Invisible illness week I thought I would write about some of my thoughts about my history with having an invisible illness through my life. Not the infinite details of it but some thoughts on it.

"On the psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words, shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name it has an independent existence from them. They can now strugg…

Did I even give myself a wicked #migraine... lack of sleep trigger

I got the opportunity to do an insomnia panel and since I have been an insomniac all my life, complicated more so by pain, I certainly was more than willing to apply for it. It was 10 AM my time which most people would not think is an issue, although functionally speaking mornings are not my best time mentally. At the best of times. The issue is that lately I have not been able to abort my migraines at all with the Cafergot and taking it has made me rather ill, so have sort have been reducing the amount I take it anyway. I am out of painkillers (well I have one, but I need to save it) and my painkiller is just T3s which I can only take one of a couple times a week anyway... but when I do choose to, obviously it is when I am in acute pain close to bedtime to help me sleep. So this does mean I have had a lot of acute migraines I have not been able to treat.


And this means I have not been able to sleep. Often I have not been able to fall asleep until after my spouse leaves for work. So s…

30 Things About My Invisible Illness You May Not Know

Have you done our 30 Things Meme? Copy and paste the meme to your own blog, answer the questions, and then come back here to post the link. Be sure to post some kind of photo on your blog post so when you link to us it appears fun and interesting for people to click on so you get more visitors!
You never know what you may have in common with others around you.
Thank you for participating and spreading the word.
30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Fibromyalgia, hypermobility syndrome, chronic migraines, asthma and hypothyroidism.

2. I was diagnosed with it in the year: This is insanely hard to answer with a memory like mine and that many chronic illnesses. Jeez. Hypermobility Syndrome was 1992, which would have made the Fibromyalgia about 1997, chronic migraines were about 2000 or a little before, hypothyrodism about  2001 and asthma about 2007. Approximately.

3. But I had symptoms since: The hypermobility syndrome and fibromyalgia …

A new image I worked up on a poem I made... for #migraine Misfits

I made an image for Migraine Misfits page using my poem from the Putting Our Heads Together Poetry Contest, 2013     I could have sworn I made a blog post about my entry in that contest but I guess not. Or I fail to see it. Anyway I submitted a piece called 'Dancing on the Dagger’s Edge' which won first place this year. Poetry is pretty personal so I was proud of it but at the same time not sure what to say about winning. I'm sort of really introverted and self-conscious about these sorts of things. And maybe I would not have done anything with it at all but I do like the symmetry to it and the metaphors I used so to help add some images and awareness for Migraine Misfits I decided I would use it. The imagery is meant to be vivid. This constant balance or dance we try to maintain but always on the edge of pain... then the slice of it... a dagger being a good one I think for this. This idea of a battle, struggle, pain... but no blood, no physical sign of it... an …