Hi. Look... what I told you the other day about my experience of M.E and fibromyalgia...well, it's all true, but, well, I went to bed that night, very late, after four bouts of real painful stomach cramps and diarrhoea and I thought, what the hell, I'm still allowing this to be an 'invisible' illness, because I am not telling it how it REALLY is.
So, if you are offended by bodily fluids and filth (of a purely bodily functional nature - there's nothing sexual to talk about having M.E believe me!) then, read no further!
I laid in bed exhausted and this is what I knew I needed you to know, to really try to understand. Every-ones experience is different, but this is REALLY how mine is...and I need you to know so that when you ever meet a person again who looks fine and kind of hints they may have an 'invisible 'illness, you may think twice before you make a judgement about them. (We ALL judge people-there is nothing wrong with that-it keeps us safe, but we get it wrong so often its best to keep an open mind and keep our judgement quiet until we know more!).
NOW :-
- Imagine the most OCD cleanliness person you know and then imagine then being forced to spending just five days where they cannot get out of bed except to move a few steps to use the commode in their bedroom, which then has to be emptied by their partner. They cannot wash, bath or shower. They just have wet wipes to clean themselves.They cant clean their teeth. They cant shave. They cant brush their hair, let alone wash it!
- Every time they have a drink they know it means they will have to use the commode and feel dirty again... and when they eat, especially if they have Irritable Bowel Syndrome, a common invisible illness, they will have to use the commode too. Now imagine that poor person having to face their partner after they have stunk the bedroom out, having to ask them to clean the commode out for you......wow, how attractive will they feel!!!!!
- They can sleep some of the time away because they are truly exhausted. They cannot sleep though when they should be asleep, all night. They love reading, so hey, a few days of enforced bed rest-whats the problem?...except that, their head is pounding or there is a pain travelling up their neck into the side of their face and either way, their eyes don't seem to be working very well. The light in the room is too bright anyway so needs to be off. TV? Well there are only a limited amount of repeats you can watch day after day!
- What about when they are so exhausted and need a drink of water to re-hydrate after being 'ill' and there is no water left next to the bed?. How long do they need to wait and then feel a bother asking someone to bring the a drink (or something to eat),.... not just once - all day every day... and sometimes in the night too, when their body temperature is going hey-wire and they feel they are in tropical heat with their mouth so dry their tongue is stuck to the roof of their mouth, and a minute later they need a hot water bottle as they are chilled to the bone?
- Now, take a moment and imagine how that person feels...dis-empowered, isolated and dependent. Imagine how wretched they feel. Now add some pain in their neck, along the collar bone and their lower back, and (oh my,own personal worse) 'toothache' in the hip! I describe it as toothache because it is a nerve pain...like a needle being stuck up in a hole in your tooth that needs filling....constantly, in your hip, so whichever way you try to sleep, on your back, front or sides....there is always pain.
There are many more aspects to this disability too.....the side-effects of the morphine patch pain relief or the anti-epilepsy drugs, the feeling of dirtiness and being grossly unattractive for your partner (who has just emptied your commode bucket!) oh, but anyway, you are in too much pain and too tired and irritable for any kind of intimacy! Not surprising then that so many people with severe M.E and fibromyalgia end up with failed relationships and having to be looked after at home by their parents!
What about the house! Oh, the state of the house. You are in bed day and night but life goes on without you and the house, well, it falls into a state that you use the excuse of being too tired to see people because the house is too embarrassing to have anyone come to anyway! Then there's the washing and the ironing.Who does the shopping? Hurray for Home Shopping... but, of dear, the memory fails you again and you forget half the essentials you need.....no matter...you don;t want to eat or drink anyway - and I don't think I need to point out why not again!!!
So, if you are offended by bodily fluids and filth (of a purely bodily functional nature - there's nothing sexual to talk about having M.E believe me!) then, read no further!
I laid in bed exhausted and this is what I knew I needed you to know, to really try to understand. Every-ones experience is different, but this is REALLY how mine is...and I need you to know so that when you ever meet a person again who looks fine and kind of hints they may have an 'invisible 'illness, you may think twice before you make a judgement about them. (We ALL judge people-there is nothing wrong with that-it keeps us safe, but we get it wrong so often its best to keep an open mind and keep our judgement quiet until we know more!).
NOW :-
- Imagine the most OCD cleanliness person you know and then imagine then being forced to spending just five days where they cannot get out of bed except to move a few steps to use the commode in their bedroom, which then has to be emptied by their partner. They cannot wash, bath or shower. They just have wet wipes to clean themselves.They cant clean their teeth. They cant shave. They cant brush their hair, let alone wash it!
- Every time they have a drink they know it means they will have to use the commode and feel dirty again... and when they eat, especially if they have Irritable Bowel Syndrome, a common invisible illness, they will have to use the commode too. Now imagine that poor person having to face their partner after they have stunk the bedroom out, having to ask them to clean the commode out for you......wow, how attractive will they feel!!!!!
- They can sleep some of the time away because they are truly exhausted. They cannot sleep though when they should be asleep, all night. They love reading, so hey, a few days of enforced bed rest-whats the problem?...except that, their head is pounding or there is a pain travelling up their neck into the side of their face and either way, their eyes don't seem to be working very well. The light in the room is too bright anyway so needs to be off. TV? Well there are only a limited amount of repeats you can watch day after day!
- What about when they are so exhausted and need a drink of water to re-hydrate after being 'ill' and there is no water left next to the bed?. How long do they need to wait and then feel a bother asking someone to bring the a drink (or something to eat),.... not just once - all day every day... and sometimes in the night too, when their body temperature is going hey-wire and they feel they are in tropical heat with their mouth so dry their tongue is stuck to the roof of their mouth, and a minute later they need a hot water bottle as they are chilled to the bone?
- Now, take a moment and imagine how that person feels...dis-empowered, isolated and dependent. Imagine how wretched they feel. Now add some pain in their neck, along the collar bone and their lower back, and (oh my,own personal worse) 'toothache' in the hip! I describe it as toothache because it is a nerve pain...like a needle being stuck up in a hole in your tooth that needs filling....constantly, in your hip, so whichever way you try to sleep, on your back, front or sides....there is always pain.
There are many more aspects to this disability too.....the side-effects of the morphine patch pain relief or the anti-epilepsy drugs, the feeling of dirtiness and being grossly unattractive for your partner (who has just emptied your commode bucket!) oh, but anyway, you are in too much pain and too tired and irritable for any kind of intimacy! Not surprising then that so many people with severe M.E and fibromyalgia end up with failed relationships and having to be looked after at home by their parents!
What about the house! Oh, the state of the house. You are in bed day and night but life goes on without you and the house, well, it falls into a state that you use the excuse of being too tired to see people because the house is too embarrassing to have anyone come to anyway! Then there's the washing and the ironing.Who does the shopping? Hurray for Home Shopping... but, of dear, the memory fails you again and you forget half the essentials you need.....no matter...you don;t want to eat or drink anyway - and I don't think I need to point out why not again!!!
