This is a BLOG written and created by Nikki Albert, who has chronic migraines with aura and fibromyalgia.
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Deserving of #pain #management and a better #QualityOfLife
“The tragedy of life is not death but what we let die inside of us while we live.” ~Norman Cousins
The tragedy of chronic pain is poor chronic pain management which leads to poor quality of life. We let a lot die inside of us while trying to survive the pain, because we need to survive the pain. We slice and dice our lives, cutting out so many things just to have the energy to endure that pain. All those many things we cut out are the very things, if we were getting chronic pain management, they tell you to do to help with your mood. Get out of the house, take a walk, socialize with people, with friends, do things for yourself, find a hobby of something you have never done before to take up some of your day learning something new. So many things they suggest we try to help with mood and isolation and depression... that we had cut out because of the intensity of pain, the lack of ability to cope, the need to just survive through it and the completely lack of chronic pain management.
Lack of pain management stems from lack of understanding from doctors. Because of lack of training they received to begin with. Yet you have to wonder can they not comprehend what a pain problem is? And that treatment of it is complex? Perhaps beyond what they can do and needs the attention of someone who specializes in pain? Rather than, expecting ones patient to simply endure the pain, endure it while working full time... because that makes some sort of sense to them? Do they comprehend pain at all I wonder.
Eventually it comes down to this. Always to this. It is us that is causing this pain. Our lifestyle. We are overweight. Or we smoke. Or a diet is wrong. We change something. Then it is something else. Because they do not want to admit they do not know what to do and they ran out of ideas.
And in the end what we want and deserve is chronic pain management. A better quality of life. To not just be in survival mode. To add those bits and pieces of our life back in there, if we can. We want a little more life and a little less suffering and that really should not be too much to ask for.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Tender or swollen lymph nodes (glands), especiall…
When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons.
I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…