Living with ME (Myalgic Encephalomyelitis) aka Chronic Fatigue Syndrome
The 12th of May is ME Awareness Day and as I don’t have the energy to do much else to promote awareness, I try to write about the issues of day to day living with a long term chronic illness. This post is a couple of days early as I’ve been writing it in stages over the last couple of weeka and if I wait to post it until Saturday, I’ll only forget about it!
I know many people who read this are aware that I have ME and apologies to them as they’ve heard most of this before. For those who haven’t please take time to read it and try to understand that it isn’t just about being “a bit tired” or “a bit achey” or even “a bit fluffy in the thinking” ME is so much more than this. I promise that knitting related posts will resume shortly!
Normal life for me is constant joint pains and extreme tiredness – not just a bit wiped out, but usually so tired I feel that I’m trying to wade through treacle. On days when I have even less energy than normal I have to decide if it is an ME crash day or just a bleurgh day that everyone gets occasionally. Usually however it’s because I’m having a bad ME day and on those days all I can do is give in as soon as I realise, retreat to my bed or the settee and accept that nothing is going to get done. And by nothing I don’t just mean things like making a meal or getting dressed or going out in the car, I mean that teeth won’t be brushed, the only food that will be eaten is stuff that requires no preparation whatsoever, essential medication will be missed, not because I’m being lazy or can’t be bothered, but because I just physically cannot find the energy to do those things. I have had post natal depression many years ago and this is very different, it’s not a mental issue that’s causing it, it’s purely physical (although for many people depression is one of the side effects of ME).
With hindsight it’s always easy to think, I should have laid down sooner, of course it was a crappy ME day, not just a feeling a bit iffy. But because society still doesn’t always recognise just how ill you can be with ME it can be very hard to accept it yourself. So many people say variations of “if you only wanted hard enough to get better/tried this patent medicine/therapy you would” and the nightmare of trying to prove to benefits people that you really are long term ill rather than skiving takes huge amounts of energy that you just don’t have. It’s also very easy to get set in your own little routines and ways that minimise the impact of the ME as much as possible so that you don’t realise the huge impact it has on you – after all if you arrange your life so you need never walk more than 20 yards at a time, then you don’t need to accept that walking more than 20 yards causes extreme exhaustion and raises your pain levels even further.
The other day I woke up at 2pm and by the time I’d had “breakfast” I was exhausted and felt ready to go back to bed. Almost all my joints hurt even with the maximum pain killers I am allowed to take, it’s very weird when one of your toe joints suddenly hurts when all you are doing is sitting or you get very random shooting pains. I managed to stay mainly upright and watched the snooker on the tv – I say watched but most of the time I’d have struggled to say who was playing let alone what the score was. One of my sons is currently living with me while finishing his final year at uni and the agreement when he moved back in was that he would do all the cooking. However he’s hardly around at all this week due to uni commitments so I’d already said I’d cook that night to give him a break. Cooking for me now means getting a ready meal and heating it up in the microwave or shoving things like frozen pies in the oven along with oven chips and hoping that I don’t drop them or burn myself when I get them out – my feet often have cuts or burns on them from me dropping knives and hot things!
That night I finally realised that it was an ME crash day and not just me being “bleurgh” and at that point I reached for the takeaway menus! Fortunately I have a lovely local one which delivers, knows my address better than I do and usually gives me a bit extra or rounds the price down for me. Even so I struggled to safely get it out of the containers and into a bowl and my co-ordination was so poor that my pj top needed to go in the wash!
One of the weirdest things for me is that when I get tired, so not a crash day just any day when I’ve reached my limit of processing, my brain stops processing speech and it’s like listening to a foreign language. I found it very surreal when my mother recently took me to Wales for a few days of luxury to give me a rest and I thought I’d reached that limit and then realised that no, I was hearing Welsh and that was why I couldn’t process it! I also struggle to find the right word for something when I get tired, it’s like there’s a chunk of information missing in my brain, so if I want to ask for chillies on my pizza , not only the word chilli will be missing but all the associated ones (hot, jalapeno, green, red, spicy, dried, fiery etc).
I am incredibly lucky that I can still manage to do some things and that I have the support of fabulous friends (and family) who look after me and enable me to go places and do things. They understand that at any point I may need to go and lie down and sleep for a couple of hours and that I may have to cancel things at very short notice. I’ve had friends come round for a coffee and put away all the shopping that’s hanging around in the kitchen or do the washing up or even get the hoover out and do the living room floor!
I have however also have friends who’ve told me (or more often a mutual friend) “you can’t be that ill because you look ok”. That is incredibly hard to deal with, as it is when someone sees you on a mobility scooter and jokingly says “oh my legs are tired I’d love a ride on one of those”. My local worship group meet upstairs and finally got a stair lift so that I can manage to sometimes get there (they also meet on a morning which means I am often too deeply asleep to attend) , but I still get comments about how the stair lift must be fun to use. I know that that’s because people often don’t know what to say, but I now reply very bluntly “no, it isn’t and I’d far rather have the energy to walk up and down the stairs”.
The other thing that I find so hard to accept is that whenever I’ve done something fun I have to allow for payback time. So although it was wonderful to go to Anglesey with mum and eat fabulous meals and drink nice wine and explore the tiny lanes and lots of different bays (all by car of course), I still had to accept that once I got home I would need to sleep for up to 20 hours a day for at least a week to recover. And if I’ve had friends round for an afternoon then I’m going to be extra tired and wiped out for a few days just from the extra noise and stimulation of having people here.
In fact if I have to go outside to take the rubbish out or bring something in, I often lurk first to make sure that none of the neighbours are around. I have fabulous neighbours, they’re all really supportive and lovely, but it’s hard to say “no I haven’t the energy to stand and chat” and so it’s easier just to avoid them.
I know I’m incredibly lucky not to be totally bedridden or permanently housebound and I try to remind myself when I feel very down about living with ME, that I am still here and that I can live life and enjoy it – sadly several friends have died from other conditions and I’m sure they would love to have only had ME and be able to live even a restricted life.
As ever this is my view of living with a long term condition and more to the point it is todays view of living with ME, tomorrow it may be different. I could be more positive about it or I could want to shout loudly “it’s not fair”, or I may just be asleep for 24 hours and miss tomorrow totally!
The 12th of May is ME Awareness Day and as I don’t have the energy to do much else to promote awareness, I try to write about the issues of day to day living with a long term chronic illness. This post is a couple of days early as I’ve been writing it in stages over the last couple of weeka and if I wait to post it until Saturday, I’ll only forget about it!
I know many people who read this are aware that I have ME and apologies to them as they’ve heard most of this before. For those who haven’t please take time to read it and try to understand that it isn’t just about being “a bit tired” or “a bit achey” or even “a bit fluffy in the thinking” ME is so much more than this. I promise that knitting related posts will resume shortly!
Normal life for me is constant joint pains and extreme tiredness – not just a bit wiped out, but usually so tired I feel that I’m trying to wade through treacle. On days when I have even less energy than normal I have to decide if it is an ME crash day or just a bleurgh day that everyone gets occasionally. Usually however it’s because I’m having a bad ME day and on those days all I can do is give in as soon as I realise, retreat to my bed or the settee and accept that nothing is going to get done. And by nothing I don’t just mean things like making a meal or getting dressed or going out in the car, I mean that teeth won’t be brushed, the only food that will be eaten is stuff that requires no preparation whatsoever, essential medication will be missed, not because I’m being lazy or can’t be bothered, but because I just physically cannot find the energy to do those things. I have had post natal depression many years ago and this is very different, it’s not a mental issue that’s causing it, it’s purely physical (although for many people depression is one of the side effects of ME).
With hindsight it’s always easy to think, I should have laid down sooner, of course it was a crappy ME day, not just a feeling a bit iffy. But because society still doesn’t always recognise just how ill you can be with ME it can be very hard to accept it yourself. So many people say variations of “if you only wanted hard enough to get better/tried this patent medicine/therapy you would” and the nightmare of trying to prove to benefits people that you really are long term ill rather than skiving takes huge amounts of energy that you just don’t have. It’s also very easy to get set in your own little routines and ways that minimise the impact of the ME as much as possible so that you don’t realise the huge impact it has on you – after all if you arrange your life so you need never walk more than 20 yards at a time, then you don’t need to accept that walking more than 20 yards causes extreme exhaustion and raises your pain levels even further.
The other day I woke up at 2pm and by the time I’d had “breakfast” I was exhausted and felt ready to go back to bed. Almost all my joints hurt even with the maximum pain killers I am allowed to take, it’s very weird when one of your toe joints suddenly hurts when all you are doing is sitting or you get very random shooting pains. I managed to stay mainly upright and watched the snooker on the tv – I say watched but most of the time I’d have struggled to say who was playing let alone what the score was. One of my sons is currently living with me while finishing his final year at uni and the agreement when he moved back in was that he would do all the cooking. However he’s hardly around at all this week due to uni commitments so I’d already said I’d cook that night to give him a break. Cooking for me now means getting a ready meal and heating it up in the microwave or shoving things like frozen pies in the oven along with oven chips and hoping that I don’t drop them or burn myself when I get them out – my feet often have cuts or burns on them from me dropping knives and hot things!
That night I finally realised that it was an ME crash day and not just me being “bleurgh” and at that point I reached for the takeaway menus! Fortunately I have a lovely local one which delivers, knows my address better than I do and usually gives me a bit extra or rounds the price down for me. Even so I struggled to safely get it out of the containers and into a bowl and my co-ordination was so poor that my pj top needed to go in the wash!
One of the weirdest things for me is that when I get tired, so not a crash day just any day when I’ve reached my limit of processing, my brain stops processing speech and it’s like listening to a foreign language. I found it very surreal when my mother recently took me to Wales for a few days of luxury to give me a rest and I thought I’d reached that limit and then realised that no, I was hearing Welsh and that was why I couldn’t process it! I also struggle to find the right word for something when I get tired, it’s like there’s a chunk of information missing in my brain, so if I want to ask for chillies on my pizza , not only the word chilli will be missing but all the associated ones (hot, jalapeno, green, red, spicy, dried, fiery etc).
I am incredibly lucky that I can still manage to do some things and that I have the support of fabulous friends (and family) who look after me and enable me to go places and do things. They understand that at any point I may need to go and lie down and sleep for a couple of hours and that I may have to cancel things at very short notice. I’ve had friends come round for a coffee and put away all the shopping that’s hanging around in the kitchen or do the washing up or even get the hoover out and do the living room floor!
I have however also have friends who’ve told me (or more often a mutual friend) “you can’t be that ill because you look ok”. That is incredibly hard to deal with, as it is when someone sees you on a mobility scooter and jokingly says “oh my legs are tired I’d love a ride on one of those”. My local worship group meet upstairs and finally got a stair lift so that I can manage to sometimes get there (they also meet on a morning which means I am often too deeply asleep to attend) , but I still get comments about how the stair lift must be fun to use. I know that that’s because people often don’t know what to say, but I now reply very bluntly “no, it isn’t and I’d far rather have the energy to walk up and down the stairs”.
The other thing that I find so hard to accept is that whenever I’ve done something fun I have to allow for payback time. So although it was wonderful to go to Anglesey with mum and eat fabulous meals and drink nice wine and explore the tiny lanes and lots of different bays (all by car of course), I still had to accept that once I got home I would need to sleep for up to 20 hours a day for at least a week to recover. And if I’ve had friends round for an afternoon then I’m going to be extra tired and wiped out for a few days just from the extra noise and stimulation of having people here.
In fact if I have to go outside to take the rubbish out or bring something in, I often lurk first to make sure that none of the neighbours are around. I have fabulous neighbours, they’re all really supportive and lovely, but it’s hard to say “no I haven’t the energy to stand and chat” and so it’s easier just to avoid them.
I know I’m incredibly lucky not to be totally bedridden or permanently housebound and I try to remind myself when I feel very down about living with ME, that I am still here and that I can live life and enjoy it – sadly several friends have died from other conditions and I’m sure they would love to have only had ME and be able to live even a restricted life.
As ever this is my view of living with a long term condition and more to the point it is todays view of living with ME, tomorrow it may be different. I could be more positive about it or I could want to shout loudly “it’s not fair”, or I may just be asleep for 24 hours and miss tomorrow totally!
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