I'm a little freaked out by something that happened this week.
I've been needing to take naps during my usual waking hours (night-time) for the last few weeks, now. I'd almost go so far as to say that I feel like my balance is tipping back towards hypersomnia, after several years of generally more healthy sleeping patterns, with bouts of insomnia... Except that I've still had days recently when I've struggled with insomnia during the daytime, too.
Anyway, a couple of nights ago, I very suddenly really needed to go to sleep, and just couldn't keep my eyes open any more. (something which is not unusual right now) But as soon as I settled down, I began to have paralysis episodes, where I couldn't breathe or move for a little while, then would fall asleep, then jump wake again suddenly with the same issue. This happened several times in a cycle over about an hour, and i couldn't pull myself out of it... then just as suddenly, I was able to wake up properly again.
What is worrying me is not so much the episode itself, (though I can't deny it was frightening!) but the fact that I've experienced it before, just not for several years, since the worst period so far in my illness. (In fact I have quite a few symptoms cropping up which I haven't had since that time and I'm really concerned at what that might mean.) The period in question was when I was having both these 'sleep paralysis' episodes on a frequent basis, and also full or partial body paralysis sometimes lasting hours, often for days or more. At that time I required near to total care from my carer the majority of the time. I never want to go back to that level of severity and honestly, it's kind of frightening that I am beginning to re-experience some of those symptoms which I've been free from in over 4 years now!
It's particularly horrible given my current lack of medical support... although I guess the truth is that I didn't have much support the first time around either, plus, much less knowledge personally about my illness! I was at the time seeing an ME specialist who (although working in a clinic where the treatment options were only graded exercise and cognitive behavioural therapy) had enough knowledge of and belief in the physical symptoms of M.E. that he was able to to tell me that yes, these symptoms were found within the realms of severe ME. However no tests or assessments were arranged and I didn't have the self-confidence, knowledge, or energy to push for more. I was just grateful not to be told I was crazy - and at least I had someone who KNEW, you know???
I know that the only thing I can really do right now to try and stop things getting any worse, is to listen to my body's limits as much as possible, and rest when it tells me to - but that's just so incredibly frustrating!! I can't go back to where I was - I'm struggling to cope both physically and emotionally as it is, as is my carer. I just don't think I ... we, can go through that again. - especially now that I'm not living in my own home with just me and Anna anymore. I honestly can't imagine dealing with all that in a more public setting, even though it is family members.
I know I need to be as positive as possible, and hope for the best, but I also feel it would be foolish not to see the reality of my situation at the same time, to do what little I can both to prepare for it, AND to avoid it! Myalgic Encephalomyelitis is, after all, a waxing and waning illness. I haven't ever had a complete remission in the last 16 years, and I've been severe for 8 years, which statistically gives me a smaller chance of getting better and a greater chance of getting worse. Having no real medical care also goes against me as so many of my associated symptoms and illnesses are getting worse when it doesn't necessarily need to be the case.
So... The plan..?
Try not to let myself get too scared.
Don't bottle up my feelings because that only makes it harder not to be scared!
Rest, rest, rest!!
Try to resolve this GP situation and get myself some domicilliary care as soon as possible - if possible!
Rest, rest, rest!!!!!
If anyone has any better ideas, useful advice or info, or any thoughts in general, please let me know! :)
On the plus side, apparently my liaison at our GP surgery has been working on sorting out my situation there. She's meeting with the practice manager this week, then my carer is seeing my new dr on my behalf and then apparently I will be discussed in the next practice meeting. (kind of scary all this going on without any direct input from me, but it's got the potential to be the most positive thing that's happened in years in terms of my medical care, so I just have to let it roll and see how things pan out!
I wouldn't often ask this, but if you pray, please could you send some up for me? Not only for this situation to work out as well as it possibly can, and that I start getting some real and available medical care ... but for me, to not give up on hope and to have the strength to keep fighting this minute by minute fight. I really need this to work out because otherwise I really will be left with no medical care whatsoever, sigh! Thanks guys - you really are the best!!!!
I've been needing to take naps during my usual waking hours (night-time) for the last few weeks, now. I'd almost go so far as to say that I feel like my balance is tipping back towards hypersomnia, after several years of generally more healthy sleeping patterns, with bouts of insomnia... Except that I've still had days recently when I've struggled with insomnia during the daytime, too.
Anyway, a couple of nights ago, I very suddenly really needed to go to sleep, and just couldn't keep my eyes open any more. (something which is not unusual right now) But as soon as I settled down, I began to have paralysis episodes, where I couldn't breathe or move for a little while, then would fall asleep, then jump wake again suddenly with the same issue. This happened several times in a cycle over about an hour, and i couldn't pull myself out of it... then just as suddenly, I was able to wake up properly again.
What is worrying me is not so much the episode itself, (though I can't deny it was frightening!) but the fact that I've experienced it before, just not for several years, since the worst period so far in my illness. (In fact I have quite a few symptoms cropping up which I haven't had since that time and I'm really concerned at what that might mean.) The period in question was when I was having both these 'sleep paralysis' episodes on a frequent basis, and also full or partial body paralysis sometimes lasting hours, often for days or more. At that time I required near to total care from my carer the majority of the time. I never want to go back to that level of severity and honestly, it's kind of frightening that I am beginning to re-experience some of those symptoms which I've been free from in over 4 years now!
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| photo by Meredith_Farmer | via PhotoRee |
It's particularly horrible given my current lack of medical support... although I guess the truth is that I didn't have much support the first time around either, plus, much less knowledge personally about my illness! I was at the time seeing an ME specialist who (although working in a clinic where the treatment options were only graded exercise and cognitive behavioural therapy) had enough knowledge of and belief in the physical symptoms of M.E. that he was able to to tell me that yes, these symptoms were found within the realms of severe ME. However no tests or assessments were arranged and I didn't have the self-confidence, knowledge, or energy to push for more. I was just grateful not to be told I was crazy - and at least I had someone who KNEW, you know???
I know that the only thing I can really do right now to try and stop things getting any worse, is to listen to my body's limits as much as possible, and rest when it tells me to - but that's just so incredibly frustrating!! I can't go back to where I was - I'm struggling to cope both physically and emotionally as it is, as is my carer. I just don't think I ... we, can go through that again. - especially now that I'm not living in my own home with just me and Anna anymore. I honestly can't imagine dealing with all that in a more public setting, even though it is family members.
I know I need to be as positive as possible, and hope for the best, but I also feel it would be foolish not to see the reality of my situation at the same time, to do what little I can both to prepare for it, AND to avoid it! Myalgic Encephalomyelitis is, after all, a waxing and waning illness. I haven't ever had a complete remission in the last 16 years, and I've been severe for 8 years, which statistically gives me a smaller chance of getting better and a greater chance of getting worse. Having no real medical care also goes against me as so many of my associated symptoms and illnesses are getting worse when it doesn't necessarily need to be the case.
So... The plan..?
Try not to let myself get too scared.
Don't bottle up my feelings because that only makes it harder not to be scared!
Rest, rest, rest!!
Try to resolve this GP situation and get myself some domicilliary care as soon as possible - if possible!
Rest, rest, rest!!!!!
If anyone has any better ideas, useful advice or info, or any thoughts in general, please let me know! :)
On the plus side, apparently my liaison at our GP surgery has been working on sorting out my situation there. She's meeting with the practice manager this week, then my carer is seeing my new dr on my behalf and then apparently I will be discussed in the next practice meeting. (kind of scary all this going on without any direct input from me, but it's got the potential to be the most positive thing that's happened in years in terms of my medical care, so I just have to let it roll and see how things pan out!
I wouldn't often ask this, but if you pray, please could you send some up for me? Not only for this situation to work out as well as it possibly can, and that I start getting some real and available medical care ... but for me, to not give up on hope and to have the strength to keep fighting this minute by minute fight. I really need this to work out because otherwise I really will be left with no medical care whatsoever, sigh! Thanks guys - you really are the best!!!!
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| This beautiful image, 'Birds of Hope' is by Cornelia Kopp | via PhotoRee |
"Sometimes in the darkness, while wolves howl and we feel the cold touch of fear against our spine, a faraway light glimmers
Sometimes in the press and the chaos of the crowd, in the noise and the hurry, a soft voice whispers.
That light, that voice, is Hope.
Sometimes we feel as though trying to catch hold of it is like trying to dance with clouds or turn lead to gold, but its always there waiting to suddenly appear right in front of us. within our reach."
Poem by Sarah-Louise Jordan, used with permission and much thanks!
Sarah has two blogs which I highly recommend you visit. The first, 'On a Long Road, Take Small Steps' is about her long journey with Severe Myalgic Encephalomyelitis. The Second, 'Life is Uncertain, Eat Dessert First' is her poetry blog - and I have to say, she is genuinely a talented poet & writer!!
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
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