Today it is M.E & Fibromyalgia Awareness Day.
I am no doctor, specialist or expert and everyone's experience of these debilitating illness' is different, but I thought that I could at least give my perspective on what it feels like to have M.E and fibromyalgia, often 'lumped' together under the same umbrella.
Unlike many people who have both, I am able to distinctly recognise when I fell ill with the two illness' seperately..
Eight years ago, having been feeling very unwell for a few months, I collapsed....or rather, I couldn't get up one morning. I could not get up that morning, or the morning after and in the end I slept for over seven months.
I do not remember getting up to go to the toilet, eating or anything....I missed my son's birthday and Christmas.....life went on without me.
When I came round, eventually, after a few more months of swinging in and out of a semi-conscious type state, I had no life left. Not literally.....but that is what it felt like.
I had missed a year of life, lost my job as a social work manager, which was a hugely major part of my life, lost some friends (but kept the ones that counted!) and lost memories and what had happened in the world over the year. I felt empty. A very strange feeling, but one I was later grateful to have because it allowed me the rare chance to start my life over in many new ways....but that's another ('Grow Your Own SOUL') story!
I spent the next three years being diagnosed, grieving for my lost career, being very angry, sorry for myself, frustrated and hopeless. I had group occupational therapy to help me cope better and my GP was very supportive. Years of poor mental health had meant that any time I'd had any illness whatsoever it was greeted with the mental illness label, but my GP recognised what had happened to me and got me straight to a consultant.
It was not until three years later, living in a fog of despair and with the feeling of hopelessness that the pains that had been sending electric shocks throughout my body inconsistently got to the point that they were too painful to ignore.
Yet again, I managed to traipse myself to the GP. I told her about the pains, feeling like a total hypochondriac, already suffering with fatigue, dizziness, eye problems, forgetfulness, being unable to get the right words out, being unable to read, IBS etc etc. She turned to her computer, typed something in and a printout spluttered out. 'Look at this' she said 'and see if it sounds like you!'.
I took the printout home. On it was what I now see often - the pain trigger points of diagnosing fibromyalgia. I looked at it.....pain inside the knees? I had never had anything like that....applied some pressure there and whooooaaaaa!!!!!! I nearly went through the roof! The pain was like a huge nerve tooth pain! Then I, gingerly and giving myself some recovery time between each 'prodding', tested the other diagnostic pressure points.
Most of the other places made more sense.....back of my neck, back, hips and collar bone but to name a few.....I also had pain on the tops of my feet!
Following that diagnosis five years ago, the pain has got progressively worse. The fatigue changes .... sometimes I am better that others, but the pain is awful as it makes the fatigue worse. You can't sleep through the pain totally at night or rest properly in the day so I am always tired. . I am on anti-epilepsy drugs and pain patches as well as other drugs and although pretty much bed-bound five or six days out of seven, I am fortunate to still have my husband and my children and mu close friends around me.
They find me tiring at times I know, and are sometimes frustrated by my frustration of myself, but they are the people who make my life worthwhile. Without them firmly encouraging me to keep going, to not fall into the pits of despair that I sometimes linger on the edge of and by prompting me to engage with the things I can still enjoy, I would have given up a long time ago. I am still here and can still enjoy the sunshine, even if it is sometimes just through my bedroom window, because they can see my 'invisible' illness. They believe in me and have been by my side all these years. Thanks to my new powered wheelchair, which they are going to enjoy 'adorning' to celebrate my new type of freedom, I will now be able to get out a little more. The extra exhaustion will be worth it because at least my lungs will have been filled with fresh air, I will have to take less vitamins as I will actually get sun on my skin, will have happier dreams because I will have enjoyed good company and had the opportunity to laugh a little and who knows, in times when my fatigue eases even just a little, I may be able to do that little something more to make people more aware of the heartbreak these illnesses bring.
Oh yes.....I also have the love of my puppy Gracie who keeps me company on the long lonely days when I am in bed. Here is a photo of her with me on a bad day,and one I often look at to remind me that I do still have the odd good day!
I am no doctor, specialist or expert and everyone's experience of these debilitating illness' is different, but I thought that I could at least give my perspective on what it feels like to have M.E and fibromyalgia, often 'lumped' together under the same umbrella.
Unlike many people who have both, I am able to distinctly recognise when I fell ill with the two illness' seperately..
Eight years ago, having been feeling very unwell for a few months, I collapsed....or rather, I couldn't get up one morning. I could not get up that morning, or the morning after and in the end I slept for over seven months.
I do not remember getting up to go to the toilet, eating or anything....I missed my son's birthday and Christmas.....life went on without me.
When I came round, eventually, after a few more months of swinging in and out of a semi-conscious type state, I had no life left. Not literally.....but that is what it felt like.
I had missed a year of life, lost my job as a social work manager, which was a hugely major part of my life, lost some friends (but kept the ones that counted!) and lost memories and what had happened in the world over the year. I felt empty. A very strange feeling, but one I was later grateful to have because it allowed me the rare chance to start my life over in many new ways....but that's another ('Grow Your Own SOUL') story!
I spent the next three years being diagnosed, grieving for my lost career, being very angry, sorry for myself, frustrated and hopeless. I had group occupational therapy to help me cope better and my GP was very supportive. Years of poor mental health had meant that any time I'd had any illness whatsoever it was greeted with the mental illness label, but my GP recognised what had happened to me and got me straight to a consultant.
It was not until three years later, living in a fog of despair and with the feeling of hopelessness that the pains that had been sending electric shocks throughout my body inconsistently got to the point that they were too painful to ignore.
Yet again, I managed to traipse myself to the GP. I told her about the pains, feeling like a total hypochondriac, already suffering with fatigue, dizziness, eye problems, forgetfulness, being unable to get the right words out, being unable to read, IBS etc etc. She turned to her computer, typed something in and a printout spluttered out. 'Look at this' she said 'and see if it sounds like you!'.
I took the printout home. On it was what I now see often - the pain trigger points of diagnosing fibromyalgia. I looked at it.....pain inside the knees? I had never had anything like that....applied some pressure there and whooooaaaaa!!!!!! I nearly went through the roof! The pain was like a huge nerve tooth pain! Then I, gingerly and giving myself some recovery time between each 'prodding', tested the other diagnostic pressure points.
Most of the other places made more sense.....back of my neck, back, hips and collar bone but to name a few.....I also had pain on the tops of my feet!
Following that diagnosis five years ago, the pain has got progressively worse. The fatigue changes .... sometimes I am better that others, but the pain is awful as it makes the fatigue worse. You can't sleep through the pain totally at night or rest properly in the day so I am always tired. . I am on anti-epilepsy drugs and pain patches as well as other drugs and although pretty much bed-bound five or six days out of seven, I am fortunate to still have my husband and my children and mu close friends around me.
They find me tiring at times I know, and are sometimes frustrated by my frustration of myself, but they are the people who make my life worthwhile. Without them firmly encouraging me to keep going, to not fall into the pits of despair that I sometimes linger on the edge of and by prompting me to engage with the things I can still enjoy, I would have given up a long time ago. I am still here and can still enjoy the sunshine, even if it is sometimes just through my bedroom window, because they can see my 'invisible' illness. They believe in me and have been by my side all these years. Thanks to my new powered wheelchair, which they are going to enjoy 'adorning' to celebrate my new type of freedom, I will now be able to get out a little more. The extra exhaustion will be worth it because at least my lungs will have been filled with fresh air, I will have to take less vitamins as I will actually get sun on my skin, will have happier dreams because I will have enjoyed good company and had the opportunity to laugh a little and who knows, in times when my fatigue eases even just a little, I may be able to do that little something more to make people more aware of the heartbreak these illnesses bring.
Oh yes.....I also have the love of my puppy Gracie who keeps me company on the long lonely days when I am in bed. Here is a photo of her with me on a bad day,and one I often look at to remind me that I do still have the odd good day!
