One of the more annoying symptoms of fibromyalgia that I experience is insomnia. I know that to people who sleep properly and may occasionally experience a little bit of sleeplessness it may sound mild. It is not. Insomnia is a bitch of a symptom that wreaks havoc with your mind and body.
How can I describe fibro in a way that those who do not have it can understand? I am honestly not sure, but I will try this: imagine having influenza all the time. Not "I've got a cold but I'm going to say it's flu" but real, full-blown influenza. The constant ache throughout your muscles and joints, feeling like your finger joints have swollen to twice their normal size despite there being no visible sign of this. Add onto that the frequent and dreaded 'fibro fog' where your brain simply decides to quit on you. Short term memory vanishes, while words you use everyday pack their bags and walk out the door. The aches throughout the body are not mild, although I suppose they are for some. For me it is constant pain that just varies in intensity from "Holy shit, that hurts" through to "Someone please shoot me now".
In short there physically speaking, it is not a nice condition. There are a myriad of connected symptoms that vary from person to person and cannot be predicted.
For most of us the fatigue is a pretty major symptom to begin with, so adding the insomnia into it can drag you from mildly tired and a wee bit irritable to destroying the world with a single word, should any poor soul be silly enough to speak to you.
I have to say that having had only a couple of hours sleep, on top of the fatigue I already have, has actually left me too tired to be irritable. Or maybe I am just forgetting to be irritable.
Normally if I am going through a bad insomnia phase I sit in the living room (my version of sitting it often somewhere in between sitting and lying down) and do something productive and different. I will list something on ebay or draw, write, anything that is different and more interesting than lying in bed. I think the worst thing that an insomniac can do is just lie there in bed; if I do that, all I do is end up thinking and getting irritable that I cannot sleep. On the other hand if I sit/lye in the living room and do something it takes my mind off the fact that I cannot sleep. I start to get sleepy - and have been known to fall asleep sitting up....
I have had long discussions with my GP about insomnia and neither of us are keen on the idea of additional medication - not after I have worked so hard to cut so many meds out. Between us we have come to the conclusion that it is not necessarily that the pain increases if I have not slept, but rather that my ability to cope with it decreases dramatically.
So, after not sleeping well for a few days my body becomes even more sluggish than usual and my brain is not only slow, but also lowering my ability to cope with the pain I am in. Should I follow the advice of many OT's and not sleep during the day and hope against hope that results in me getting a good night's sleep? No thanks. Not for me, as I have been there and tried that. It really did not work for me, in fact it made things worse. I think everyone has to find their own coping technique, there cannot be a 'one technique fits all' approach from our support services. We are all individuals and deserve an individual approach to managing our symptoms, including insomnia.
Lastly, I apologise if this sounds a little off in places, or if I have wandered off topic, but I have had around five hours sleep in the past three days. I am a little brain-weary right now.
Showing posts with label concentration. Show all posts
Showing posts with label concentration. Show all posts
Tuesday, 30 April 2013
Saturday, 27 April 2013
Living with chronic pain
My husband and I were talking to a friend recently about pain, what it is like to live with and how we cope with it.
Now looking briefly at my GP's letter to the DWP, I am diagnosed with fibromyalgia, CRPS, unusual forms of migraine that affect one side of the body and endometriosis - as far as pain conditions go. My husband also has chronic pain from two collapsed vertebrae, which impact on the nerve going down his right arm and have caused damage, as well as a serious leg injury which is currently undergoing treatment. We know a little about living with pain.
People who do not have pain will occasionally say things like "You get used to pain" or "After a while you start to not feel it so much". Both of these statements are completely inaccurate. You do not get used to pain, although you get used to being in pain. Those are completely different things. The pain is still there and you still feel it as much as you ever did, but you become so used to being in that much pain that when you have brief moments where it vanishes you are utterly surprised. Often you do not realise what has happened until that brief moment has passed and the pain is back.
Does living with chronic pain mean that you cannot be productive?
Of course it does not! Many people are still able to live full and realtively normal lives while being in chronic pain. They may have to make some adjustments to the way they do things or use coping methods, but they are still able to work. They are still able to walk, to do their hobbies, socialise and generally live their lives.
For some people, like me, the pain is more wide-spread and more serious. That does not mean that I am unable to enjoy life though, it just means that I have to do things differently to other people. I live in a combination of having to plan things ahead of time and being aware that even with long-standing plans I may have to cancel at the last minute because of the severity of pain I am experiencing.
I spend most of my time bed bound. The pain is not my only problem, in fact for me it is not the worst problem. But it is one of the more significant reasons that I end up stuck in bed and not able to leave my home. There are some hobbies that have fallen by the wayside purely because I am no longer physically able to do them. But I have also picked up some hobbies that I had abandoned long ago, like my drawing. I also study, I write - for example - My 'zombie blog', though that is not the only writing I do (really it's just something silly to keep me entertained). I also have a try at different things, some of which I decide are not for me, but others I pick up and do on the odd occasion; I have a half knitted scarf sitting beside my as I type, I have a book on patchwork on the other side of me. I read a huge amount of fiction, largely sci-fi and horror because I like to escape.
You do not have to be a brilliant artist to draw, you do not have to be a brilliant writer to write and you do not have to be the greatest singer in the world to sing. Whatever hobby you do that keeps you entertained is fantastic and who cares how good your are at it - the only person whose opinion matters is yours. If it is fun and you enjoy it, then do it.
The point of bringing up my hobbies is this: when you live in constant, agonising pain you need a distraction. You cannot have people talking to you 24/7 because sometimes your brain will not work, or sometimes you will be so angry and frustrated at the pain that you cannot tolerate other people around you. They also may not want to be on the receiving end of your temper all the time, no matter how much they love you. Hobbies can be a wonderful distraction and they form part of our combination of methods of coping and managing the pain.
Yes, I am medicated. I am on morphine patches, which give me a constant steady feed of drugs. I take a whole host of other medications, not all for pain. But I tell you what, distraction works almost better than the meds.
Having people visit can be wonderful though and the best distraction/medicine going. They say that laughter is a wonderful medicine and I cannot disagree. Spending too much time alone can be dangerous for a pain patient. It gives our brains too much time to think on the negative things in our lives and we can end up becoming depressed, or worse. We need people around us, but we also need people to be patient and understand that living with chronic pain is difficult. It can make us forgetful, partially because of medication, and it can make us a bit short tempered and irritable. Keep talking to us for more than a few minutes though and I promise that not only will we have fun, you will also make more difference to the life of a chronic pain sufferer than you can ever understand
I would say that is it probably best to just drop a quick call or text first to make sure I am awake or there is a chance you will just be knocking and knocking with no answer. Of course, if I am on my own I will not actually be able to get to the door to answer it anyway - though I guess we could shout through the letter box! The bedroom is next to the front door, sort of, so that could work - see, I'm adaptable. Huh! I am pretty sure I read that it was the species and people that were able to adapt quickly that survived the last ice age. On that logic pain patients are the perfect survivors; there is no-one more adapatable than a pain patient who happens to be a good self-manager!
Now looking briefly at my GP's letter to the DWP, I am diagnosed with fibromyalgia, CRPS, unusual forms of migraine that affect one side of the body and endometriosis - as far as pain conditions go. My husband also has chronic pain from two collapsed vertebrae, which impact on the nerve going down his right arm and have caused damage, as well as a serious leg injury which is currently undergoing treatment. We know a little about living with pain.
People who do not have pain will occasionally say things like "You get used to pain" or "After a while you start to not feel it so much". Both of these statements are completely inaccurate. You do not get used to pain, although you get used to being in pain. Those are completely different things. The pain is still there and you still feel it as much as you ever did, but you become so used to being in that much pain that when you have brief moments where it vanishes you are utterly surprised. Often you do not realise what has happened until that brief moment has passed and the pain is back.
Does living with chronic pain mean that you cannot be productive?
Of course it does not! Many people are still able to live full and realtively normal lives while being in chronic pain. They may have to make some adjustments to the way they do things or use coping methods, but they are still able to work. They are still able to walk, to do their hobbies, socialise and generally live their lives.
For some people, like me, the pain is more wide-spread and more serious. That does not mean that I am unable to enjoy life though, it just means that I have to do things differently to other people. I live in a combination of having to plan things ahead of time and being aware that even with long-standing plans I may have to cancel at the last minute because of the severity of pain I am experiencing.
I spend most of my time bed bound. The pain is not my only problem, in fact for me it is not the worst problem. But it is one of the more significant reasons that I end up stuck in bed and not able to leave my home. There are some hobbies that have fallen by the wayside purely because I am no longer physically able to do them. But I have also picked up some hobbies that I had abandoned long ago, like my drawing. I also study, I write - for example - My 'zombie blog', though that is not the only writing I do (really it's just something silly to keep me entertained). I also have a try at different things, some of which I decide are not for me, but others I pick up and do on the odd occasion; I have a half knitted scarf sitting beside my as I type, I have a book on patchwork on the other side of me. I read a huge amount of fiction, largely sci-fi and horror because I like to escape.
You do not have to be a brilliant artist to draw, you do not have to be a brilliant writer to write and you do not have to be the greatest singer in the world to sing. Whatever hobby you do that keeps you entertained is fantastic and who cares how good your are at it - the only person whose opinion matters is yours. If it is fun and you enjoy it, then do it.
The point of bringing up my hobbies is this: when you live in constant, agonising pain you need a distraction. You cannot have people talking to you 24/7 because sometimes your brain will not work, or sometimes you will be so angry and frustrated at the pain that you cannot tolerate other people around you. They also may not want to be on the receiving end of your temper all the time, no matter how much they love you. Hobbies can be a wonderful distraction and they form part of our combination of methods of coping and managing the pain.
Yes, I am medicated. I am on morphine patches, which give me a constant steady feed of drugs. I take a whole host of other medications, not all for pain. But I tell you what, distraction works almost better than the meds.
Having people visit can be wonderful though and the best distraction/medicine going. They say that laughter is a wonderful medicine and I cannot disagree. Spending too much time alone can be dangerous for a pain patient. It gives our brains too much time to think on the negative things in our lives and we can end up becoming depressed, or worse. We need people around us, but we also need people to be patient and understand that living with chronic pain is difficult. It can make us forgetful, partially because of medication, and it can make us a bit short tempered and irritable. Keep talking to us for more than a few minutes though and I promise that not only will we have fun, you will also make more difference to the life of a chronic pain sufferer than you can ever understand
I would say that is it probably best to just drop a quick call or text first to make sure I am awake or there is a chance you will just be knocking and knocking with no answer. Of course, if I am on my own I will not actually be able to get to the door to answer it anyway - though I guess we could shout through the letter box! The bedroom is next to the front door, sort of, so that could work - see, I'm adaptable. Huh! I am pretty sure I read that it was the species and people that were able to adapt quickly that survived the last ice age. On that logic pain patients are the perfect survivors; there is no-one more adapatable than a pain patient who happens to be a good self-manager!
Thursday, 25 April 2013
Mental Olympics
I have always struggled to maintain concentration on one subject. At school I could be sitting in a classroom and a passing cloud would completely capture me; I would have no clue what happened in the rest of the lesson because I had gone away into my own head, my own imagination. As an adult, I am forced to admit that nothing has changed.
I cannot do one thing at a time. I quite literally cannot. My mind is in too many places, jumping over all the possibilities, all the entertaining things that there are; things that I could be doing. I have never, ever been able to read 'just' one book at a time. I have several on the go at any one moment and will jump in and out of them at random, switching from story to story. In between I will draw, or watch TV or talk or...the list is endless.
I genuinely cannot say whether having fibromyalgia has changed this. If I try and think about it, try and focus for a minute, I think that nothing has changed that much. I still fit and have to be doing several different things at the same time. The only thing that really throws me is noise. I have never had much tolerance for noise - neither have my brother, or my mom - but now it is as though all noise blends into one. If there is background noise and you ask me a question, please do not expect an answer. All I will have heard is a random noise that will not have made much sense to me. A little like Charlie Brown's teacher where all you hear is "Wah, wah, wah, wah".
Mind you, saying that I'm sitting here typing one thing while having a conversation with Pete about people murdering apple trees (cutting them down), so maybe it is not quite as bad as I sometimes think.
I cannot do one thing at a time. I quite literally cannot. My mind is in too many places, jumping over all the possibilities, all the entertaining things that there are; things that I could be doing. I have never, ever been able to read 'just' one book at a time. I have several on the go at any one moment and will jump in and out of them at random, switching from story to story. In between I will draw, or watch TV or talk or...the list is endless.
I genuinely cannot say whether having fibromyalgia has changed this. If I try and think about it, try and focus for a minute, I think that nothing has changed that much. I still fit and have to be doing several different things at the same time. The only thing that really throws me is noise. I have never had much tolerance for noise - neither have my brother, or my mom - but now it is as though all noise blends into one. If there is background noise and you ask me a question, please do not expect an answer. All I will have heard is a random noise that will not have made much sense to me. A little like Charlie Brown's teacher where all you hear is "Wah, wah, wah, wah".
Mind you, saying that I'm sitting here typing one thing while having a conversation with Pete about people murdering apple trees (cutting them down), so maybe it is not quite as bad as I sometimes think.
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