Keeping clean when severe - a thread for tips

[Sasha]

My big tip for hairwashing is to have your hair cut short, but I expect everyone has already thought of that! Loads less effort.

 

[hotblack]

My big tip for hairwashing is to have your hair cut short, but I expect everyone has already thought of that! Loads less effort.

Yeah, cut it short, wipe my head with a wet flannel, that’s about it.

I did used to get my mum to wash it. I’d lie with my head over the edge of the bed, face down, with a basin below me and she’d use a jug to pour water over my head, shampoo and rinse. But that’s too much hassle for either or us now and tbh after a while of not washing it, it’s fine with the above flannel wipe occasionally. The cutting it is still hassle though…

 

[Utsikt]

I cut my hair as short as I can get it (a few mm). If I don’t get any water in it, it actually stays not fatty for months. As soon as I rinse it with water, it becomes extremely fatty.

So if you’re just going by how it feels, I’d either wash properly with shampoo or not wash at all.

 

[Yann04]

I cut my hair as short as I can get it (a few mm). If I don’t get any water in it, it actually stays not fatty for months. As soon as I rinse it with water, it becomes extremely fatty.

Noticed this too sometimes. I wonder why.

 

[poetinsf]

I wasn't able to take shower for the first 3 years of my sickness. The best option was soaking in and take time to wash slowly while leaning supine in the tub. It was also therapeutic. (Drying hair was problematic though, despite short hair, because I had to raise my arms.) It was rather stressful when I later moved to a place without a tub.

I no longer have any issue with washing, obviously since I'm mostly recovered. But I do take towel/wipe bath when I'm living in my car as I am preparing to do right now. Towel bath takes a lot more effort, especially if you are washing the whole body, than washing while lying down in the tub. It's really standing and raising/moving of the arms, not wash itself, that is stressful. Whatever that minimizes the raising of arms would help.

Happy New Years!

 

[bobbler]

My big tip for hairwashing is to have your hair cut short, but I expect everyone has already thought of that! Loads less effort.

its worth noting (in case any non ME/CFS peeps reading for insight) that for lots of us that also isn’t an option

And the bigger issue isn’t just needing to wash the hair due to it being dirty but scalp issues actually driving the need for the ‘wash’.

For a start my hair grows very fast and having it cut I can wait over a year to be well enough - it has to be washed enough to cut, and then sit up and have it cut. Keeping head still for long enough for a whole hair cut in a best fit chair at home.

And I can predict when that once in a blue moon day I’m well enough will come but hair dressing doesn’t come like an on-demand service and even if it did what if that ‘good moment’ is 5am or 8pm.

I used to when more well and dying it have to have it done every 6weeks and still had roots. And because as per below any style had long grown out.

But also (and this combines with the grows fast issue) there can be lots of lengths where the hair rubs and if hair is thick can cause discomfort where it eg sits on the neck of head as a wedge. Again when was more well I’d have to have short hair so layered it was one snip away from just being shorter. But those layers are now like daggers of pointy hair and a line of hair turning into my head or neck even back then caused unbearable rub but this time I can’t just go back to a hairdresser the next day to sort it. And take longer than a straight cut, which means more time trying to keep head up.

And even if it’s ok when just done layers would grown out different so within 4weeks sit in a totally different way.

Shaving or very short causes ingrown hair and irritation issues where there is any part that isn’t laying flat vs the pillow as hair is ‘sticking out’ and rubbing against it. Causing boils and sores on the neck and head from rubbing.

And you can’t tie it back if it’s too short or just lay it over the pillow to bare your neck.

I know you know this so it’s not directed at anyone on this thread as a granny sucks eggs type stuff

but I also know outsiders who don’t realise (the I spent ten minutes thinking how I could do your disability better than you drives me nuts) inadvertently not ‘helping’ as if we are stupid (the amount of people who misunderstand ‘brain fog’ or cognitive issues I can be precise about and want us to eg by saying anomia and please speak slowly etc but they just short cut to thinking we’ve somehow lost it and common sense drives me nuts - it wouldn’t be ok with a stroke patient so…) and not with a really strait-jacketing illness stare at my hair trying not to say ‘why don’t you just cut it/'just' have your hair shorter’. So I needed to add this because I just feel that type of blight all the time.

 

[hallmarkOvME]

its worth noting (in case any non ME/CFS peeps reading for insight) that for lots of us that also isn’t an option

And the bigger issue isn’t just needing to wash the hair due to it being dirty but scalp issues actually driving the need for the ‘wash’.

For a start my hair grows very fast and having it cut I can wait over a year to be well enough - it has to be washed enough to cut, and then sit up and have it cut. Keeping head still for long enough for a whole hair cut in a best fit chair at home.

And I can predict when that once in a blue moon day I’m well enough will come but hair dressing doesn’t come like an on-demand service and even if it did what if that ‘good moment’ is 5am or 8pm.

I used to when more well and dying it have to have it done every 6weeks and still had roots. And because as per below any style had long grown out.

But also (and this combines with the grows fast issue) there can be lots of lengths where the hair rubs and if hair is thick can cause discomfort where it eg sits on the neck of head as a wedge. Again when was more well I’d have to have short hair so layered it was one snip away from just being shorter. But those layers are now like daggers of pointy hair and a line of hair turning into my head or neck even back then caused unbearable rub but this time I can’t just go back to a hairdresser the next day to sort it. And take longer than a straight cut, which means more time trying to keep head up.

And even if it’s ok when just done layers would grown out different so within 4weeks sit in a totally different way.

Shaving or very short causes ingrown hair and irritation issues where there is any part that isn’t laying flat vs the pillow as hair is ‘sticking out’ and rubbing against it. Causing boils and sores on the neck and head from rubbing.

And you can’t tie it back if it’s too short or just lay it over the pillow to bare your neck.

I know you know this so it’s not directed at anyone on this thread as a granny sucks eggs type stuff

but I also know outsiders who don’t realise (the I spent ten minutes thinking how I could do your disability better than you drives me nuts) inadvertently not ‘helping’ as if we are stupid (the amount of people who misunderstand ‘brain fog’ or cognitive issues I can be precise about and want us to eg by saying anomia and please speak slowly etc but they just short cut to thinking we’ve somehow lost it and common sense drives me nuts - it wouldn’t be ok with a stroke patient so…) and not with a really strait-jacketing illness stare at my hair trying not to say ‘why don’t you just cut it/'just' have your hair shorter’. So I needed to add this because I just feel that type of blight all the time.

 

[Peter T]

Though I understand that the body did not evolve requiring frequent baths or showers, I do get psoriasis on my face and scalp which gets worse if I don’t wash. I find it is best managed by regular hypoallergenic face wash and moisturiser, but that not washing for weeks on end results in sore and bleeding skin. The onset of this post dates the onset of my ME.

Also I less frequently get eczema in various folds of my skin if I go weeks or months without bathing/showering, especially when I am experiencing frequent night sweats, which can also occur during day time sleep. I did previously get this as a child if my cloths were washed in biological washing powder, but has emerged again more recently well after the onset of my ME even though I now always use nonbiological washing powder.

It may be that all other things being equal our skin can achieve its own equilibrium without frequent washing, but for many of us with ME/CFS all other things are not equal.

 

[Kitty]

I don't know whether this is useful or not, but a friend with severe MS manages her hair by dividing it into two pigtails and just cutting the ends off below her shoulders. It is a bit uneven when brushed out, but not as much as I'd imagined. On the rare occasions she goes out, she ties it back anyway.

Like me, she finds longer hair feels unpleasantly greasy less quickly than short hair. I used to have to wash my pixie cut every second day at minimum (after that it felt as if it was sticking to my head), but now my hair's shoulder length it takes 10 days to get to that stage.

When my mam was in her final months, I dipped a flannel into warm water with a bit of Johnson's baby shampoo in it, squeezed it out, put it over her head for a couple of minutes to dampen the hair, then wiped it a few times from forehead to nape of her neck. It must have cut through the skin oils to some extent, as her hair looked and felt cleaner afterwards. I didn't rinse it out, and that didn't seem to cause any scalp problems. Might be too stimulating for severely ill people, though, even with a carer to do it.

 

[hotblack]

I don't know whether this is useful or not, but a friend with severe MS manages her hair by dividing it into two pigtails and just cutting the ends off below her shoulders

Yes! A great tip. Thanks for both @Kitty

I use clippers (well, get someone else to) for a proper short neater job, but at times have also used this approach. Bunch my hair up in various places (more than just two) and hold with hair-ties or just elastic bands, then get someone to snip the hair off. Much quicker than a proper cut but does the job.

 

[Yann04]

I don't know whether this is useful or not, but a friend with severe MS manages her hair by dividing it into two pigtails and just cutting the ends off below her shoulders. It is a bit uneven when brushed out, but not as much as I'd imagined. On the rare occasions she goes out, she ties it back anyway.

I do this basically I don’t have energy to fully cut my hair but everytime I do a bathroom trip on a good day I tie up a certain bit of hair and just do one simple chop