The Personal Hygiene Challenges I Face Living with ME/CFS

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One of the reasons I started my blog was to try to raise awareness about invisible illnesses. My aim is to show the day-to-day realities of living with a chronic illness like ME/CFS, and the obstacles we face. Even the simplest of tasks are exhausting and can take a lot of planning. We have to weigh up each task; is it worth the energy I’m using up? Can I find a less taxing way of doing this? Do I have enough spoons today? Are there more important things I should be using my spoons on?

This balancing act is challenging and there often isn’t a straightforward answer. Keeping on top of personal hygiene is where I tend to use most of my energy. It’s an important part of life and one that healthy people take for granted, but it brings with it so many challenges.

I’m going to talk you through my personal hygiene routines, the challenges I face and ways I overcome these challenges. But for today I’m going to concentrate on the biggest challenge for me, and that’s showering.

Showering Challenges

I’m going to start with the most challenging task for me. When my health deteriorated about 5 years ago one of the biggest obstacles I faced was keeping myself and my hair clean. At the time we had a bath, but no shower. I used to love spending time soaking my sore muscles but I became so weak that I couldn’t lift myself in and out of the bath. I struggled to wash my hair and I couldn’t hold a hairdryer. My hair was very long and thick, and I couldn’t care for myself, or wash, dry and brush my own hair.

How did I overcome these challenges?

I had to make some very tough choices, and be creative with solutions for these challenges. Here are some of the changes I made for the sake of my health and personal care.

The first big decision I made was to cut my hair. I knew I had to do something drastic for the sake of my health, so I shaved it all off. I know this solution won’t be right for everyone, but for me it was a big relief and quite liberating. No more panicking about how I was going to wash and dry my hair. No need to brush my hair or dry it using a hairdryer. No more wasting precious minutes and energy washing, conditioning and drying my hair. My routine went from 30 minutes plus of exhausting activity to about 2 minutes.

The next big decision was to convert our bathroom into a wet room. I loved soaking in the bath but I had to be realistic; if I couldn’t lift myself in and out of the bath, then it was pretty pointless having a bath. We did look at bath aids which included a shower chair, a hoist, and a bath with a door, but these were all rejected as unsuitable for various reasons. The process of converting the bathroom was a big task and it was exhausting. I had to stay with my parents for a week in a loud and unfamiliar environment, and we had a lot of complications following the building work – but it was a necessity.

Having a wet room rather than a shower cubicle means I don’t have any steps to contend with – it’s all one level. It also gives us enough space for a shower chair and for my husband to be next to me helping assisting me while showering.

Additional challenges I face

Even after these changes I still find showering extremely exhausting and painful. I can only sit or stand for 2 minutes before pain, dizziness and fatigue become unbearable. The water from the shower falling on my skin also causes a lot of pain.

We fitted a water limiter to the shower head which reduces the pressure and, although this has helped, I still suffer a lot of pain. I can’t lift and squeeze shampoo and shower gel bottles myself, so we fitted a wall mounted shampoo dispenser to try and combat this, but we found I was too weak to trigger it.

And then there’s getting dry and dressed following a shower when I’m already exhausted and in pain. I’m so exhausted after taking a shower that I do not have the energy to get dressed straightaway. I have to rest in bed for a few minutes, and sometimes as long as an hour, before attempting to get dressed.

With my husband assisting me and a strict shower routine we managed to find ways around most of these challenges.

Solution: A strict shower routine

We now have my shower routine down to a fine art. It takes a maximum of 5 minutes from the time I leave my bed, to when I return to my bed, although getting dressed takes a bit longer.

This routine has taken a lot of practice and it still takes me hours, and sometimes days to recover. But I can now keep myself clean without needing help from carers (having a carer, who is often a complete stranger, help me shower brings a whole new level of anxiety and discomfort which I would rather avoid) . Due to how exhausting and painful it is I can only manage to shower once a week. I couldn’t shower without my husband and I am truly grateful for his help.

A Summary of challenges and practical solutions.

Let me summarise the above. Maybe you also face some of these challenges. Could any of these practical solutions work for you?

  • Challenge: I can’t lift myself in and out of the bath.
  • Solution: Install a shower or convert bathroom into a wet room.
  • Challenge: I’m too weak to wash and dry my long hair.
  • Solution: Cut my hair.
  • Challenge: I can’t sit or stand more than 2 minutes before pain and exhaustion become unbearable.
  • Solution: A shower chair, a strict shower routine, my husband’s help and a lot of planning. Having my husband turn the shower on to warm it up before I get there.
  • Challenge: The water flow is too strong and hurts my skin.
  • Solution: Install a water limiter to the shower head. Limit my time under the shower.
  • Challenge: I can’t lift and squeeze shampoo bottles.
  • Solution: My husband dispenses these directly into my hand. A wall mounted shampoo dispenser may also be an option.
  • Challenge: I get very shaky when lifting myself off shower chair.
  • Solution: Use a shower chair with arms and a wall mounted grab rail.
  • Challenge: I’m too weak to stand and dry myself.
  • Solution: An extra stool in the bathroom next to the shower so I can sit down to do a “quick dry” before getting into bed wrapped in a towel. Some people may find a bath robe a better option, but I find them too heavy for me. Take time to rest in bed before attempting to get dressed. Place a towel on pillow to rest my wet hair on, and a tea towel rather than a full sized towel to dry my hair, as I cannot lift a full-sized towel above my head.
  • Challenge: I’m too weak to find my clothes.
  • Solution: My husband finds my clothes and places them in my bed. I rest in bed for a few minutes after my shower before attempting to get dressed.
  • Challenge: Showering is exhausting and painful, and it often takes me days to recover.
  • Solution: A strict routine and I only shower once a week – it’s nothing to be ashamed of.

Even with all these solutions in place I can’t always find the energy to shower, especially following heightened activity like hospital visits. In these situations I just do my best with my limited spoons. Wet wipes, panty liners, dry shampoo and bed baths are all options for these times. Discussing personal hygiene can sometimes be embarrassing; we worry what other people might think if we told them we only shower once a week, or we don’t change our clothes everyday. But the truth is we do our best with our given situations and we shouldn’t be embarrassed about the challenges we face. Take care x.

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

If you would like to read more about the realities of living with ME/CFS, please read my article My Story – Living with Severe M.E. I have also compiled a whole host of practical solutions to the problems we face daily living with a chronic illness. If you would like to find out more please read my post Practical Solutions to Everyday Spoonie Problems.

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  1. Well done on writing such a personal post. I don’t have ME, but I live with chronic pain, which is tiring as well as painful and I recognise a lot of what you’ve said. Showering is exhausting. I love your attitude and how you’ve looked for solutions for everything. And no, there is no shame in only showering once a week.
    I’m sure your post will help people in a similar situation to yours.

      1. Jo Moss,can you please tell me what illnesses the abbreviations stand for? I have other chronic pain conditions that also make little things hard for me but didn’t know what yours stood for. And thank you for sharing,very brave & great for all of us others to hear (you understand what I mean)

    1. I too had to make the decision to cut my long hair off. All my meds had caused that thick mane I had to thin down to avrg. I guess. It really has helped a great deal. Not all that time with arms up. I had even gotten to the point that I had stopped drying it and it would take all day to get dry on it’s own.
      No longer can shower often. Down to once a week in cool weather & 3x in hot months. Brushing teeth is a lot of effort too. I always feel self conscious, like I am not clean enough to be around anyone. It is embarrassing for me. I have no help at this time & not looking forward to that day. I just have my Emotional Support Animal and she’s always my life saver.

        1. I relate to your words so very well, having lived with severe M.E. . I use an electric toothbrush that helps a lot. I still have long hair that my husband washes and braids for me. I’m so grateful for his loving kindness.

    2. I keep baby wipes by the toilet and by the bed. The keep fresh. A shower is to much for me. I can still have a bath with great difficulty and it exhausts me. I sponge bath a lot or wash in sections. I find washing my hair by the sink is easier and quick. So I wash my hair the day before I bath.

  2. Thank you for sharing Jo, you’re completely right – there is no shame in only showering once a week.

    I’m impressed that you do so much yourself considering your condition, you’re still fighting for independence despite the pain and fatigue. That takes a lot of inner strength xxx

  3. Thank you for sharing! I have Ehlers Danlos Syndrome, Fibro (ME), Degenerative Disc Disease, osteoarthritis & the list goes on. I need to cut my hair again! I found solid shampoo & conditioing bars & find they are wonderful! I have no containers to fight with & they seem to last a long time. I have been using mine over a month, my twins (one with shoulder length & the other with waist length hair) used it too & love it. My oldest daughter loves it as does my son’s girlfriend (it was a Christmas gift this year 🙂 ). I can’t even tell I have used it. Mine is made locally to me. I use the conditioner only on the ends. I also find a body “scrubby” helpful to wash my body as I cannot seem to keep ahold of a bar of soap. Liquid soap is too hard to get out of the container & I am allergic to most of them. I too am trying to sort out my new “normal”.

  4. My ME/CFS has moved from mild to moderate, and your post has really hit home. Who knew showering could be so exhausting! A thought regarding shampoo bottles, you can get shampoo and conditioner in a small soap bar form. I buy natural ones made with essential oils.

  5. Hi Jo,

    Thank you for writing this post. It’s all very recognizable for me. I also suffer from ME/CFS and migraines. But because of the POTS I have difficulties showering and taking a bath. In short I’m rapidly feeling unwell standing up or being soaked in warm water.
    Have you been tested on POTS or orthostatic syndrome? The diagnosis helped me a lot with living with the symptoms.

    1. Thank you for your comment. No, I haven’t been tested for POTS yet. I’ve requested further investigation through my GP but she’s making very hard for me to get a referral. It’s a frustrating and exhausting situation.

      1. I am so sorry to hear that. Maybe you can do a poor man’s tilt test at home to convince her? Hope your GP will give a referral soon.

  6. Hi jo, loved reading your post. At the moment it is two weeks since I washed my hair. I am putting talc on it which is like dry shampoo. No good though for those with chest problems. But it works for me.
    I havent had a shower or bath or shower for over two weeks. I have had to use my energy elsewhere, but hoping to get my hair washed very soon.
    I managed to hoover this weekend and wash my clothes this weekend and I am pretty pleased with that.

    I live on my own but also care for my dad in his home. He is quite mobile and better now with understanding this M.E. In a few weeks I go for a Work Capability Assessment…hahaha

    Anyway, your post was good for me.

    1. Hi Barbara. It looks like you really have you hands full. Do you have any help with your care or your Dad’s?

      Good luck with the assessment. Remember to answer questions as you feel on your “bad days” rather than saying “my symptoms fluctuate”. Take care.

  7. I think we generally work out solutions along the way. I haven’t managed a shower for years but found other ways (although not really for hair washing). Carers have been fine in the past but the ones in the last year have commented on things like the fact I have a mole on my breast like she does and asking am I cold while obviously looking at my nipples which I don’t really like.

  8. This resonates with me. I have a shower seat and grab rails, go straight to bed for a while from the shower or very occasional bath. I am about to have a rack put up in the corner of my shower, at waist to shoulder height, to hold my flannel, soap, shampoo bars, etc. I put my clothes out before showering. I find angling the shower spray away from my head as soon as hair is done helps me, as the water splashing over my head is sensory overload.

  9. If you’d like an alternative to the tea towel, since I figure it is a lot of movement to dry the hair with a smaller surface, microfibre is great. There are full size towels that are very light, and they also soak up water much quicker.

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