Being ill is hard. However, being chronically ill is fucking relentless. At the mild end of the spectrum, M.E can significantly impair your ability to function by up to 50%, and throws a good punch at your sense of worth and quality of life. At the severe end of the spectrum, both M.E and POTS can rob you of your independence and identity, kick your quality of life into a coma, and take a massive dump on your soul. I was the latter.
Thankfully, these days my condition has improved, and I’ve given my soul a good cleansing … but wow – that shit left a stain. I guess this blog is my attempt at turning that stain into a sparkle.
Nonetheless … I apologise for the smell.
It’s bloody hard sometimes, isn’t it? When my M.E and POTS was severe and I was housebound, often bedridden, I just couldn’t wash myself anywhere near as often as I would have liked – if at all. I have read debates over how often people think a person should shower or bath – and it seems opinions are divided. If you are of the opinion that it should be every day, no excuses – then be warned: things are about to get really filthy here (and not in a saucy way). So, if it’s not your cup of tea, then please feel free to move along to one of my ‘cleaner’ posts.
Now, if you suffer with severe chronic illness (or anything else that limits your ability to function), and are currently unable to care for yourself in the way you would like or once did, then I want you to heed the following words – and make sure you bury them deep within your soul:
You are very welcome.
I’ll admit you are unlikely to hear these words on any inspirational Ted Talk (my invitation must have got lost in the post) – but it doesn’t make them any less true.
Being kind to yourself is so important when your body is struggling to do basic things you once took for granted. Mentally, it can be really hard to accept any new (and highly unwelcome) limitations imposed on your life – but especially if they are imposed by your own body, and particularly on something as personal as your own hygiene. No-one likes to feel like a complete minger. However, it’s imperative to remember this: your body IS on your side. It might not feel or smell like it – but it is.
Ugh, that last bit was a little preachy – sorry. Please shake off that sprinkling of self-righteousness and focus on the well-intended point I was trying to make. Done? Excellent. Thank you for giving me the benefit of the doubt. Now, where was I? Oh yes… my highly un-righteous pearls of wisdom.
I find giving myself words of encouragement and praise for what I am able to do, feels much nicer than berating myself for what I can’t. Brushed teeth today? Excellent! Got dressed? I’m on fire! Finally got round to clipping my claw-like toenails? Living the dream! Even if it’s simply giving myself a pat on the back for getting through the day in one piece – that in itself can feel like the ultimate endurance test for me some days (and many others with chronic illness), so is always worth acknowledging with kindness and gratitude. The extreme enthusiasm is, of course, optional. My bar for gratitude is deliberately low, to ensure I am able to show myself kindness daily. Anything else – like washing, is just a bonus. So, now you know how low my bar is, allow me take you on my washing journey.
My personal hygiene capabilities have varied according to how well or unwell I’ve been at any given time since becoming chronically ill. It has ranged from showering independently right through to being unable to have a bath without assistance. In order to understand how far I have come, I feel it necessary to begin at the deep end of this particularly shitty creek – where I found myself completely without paddle.
I never realised before getting sick just how much energy it takes to lie in a bath. Umm, it’s meant to be relaxing, isn’t it? Apparently not. Heat is notoriously bad for people with POTS, as it causes the blood vessels to dilate – which is like rolling out the red carpet for blood pooling, and in my case, light-headedness, nausea, dizziness and occasional blackouts. Obviously, I tried reducing the water temperature, but regardless of how lukewarm it was, baths would really drain me of what pathetic little energy I had left, and made both my POTS and M.E flare up really badly.
At this point in my illness, I had to prioritise my even more basic needs above washing – which I decided were sleeping, eating and speaking. The latter was very challenging at this time, and at my worst I was reduced to whispers for a few minutes at a time – with very long rests in between (which I’m sure Pete secretly appreciated on occasion). I simply didn’t have the strength in my voice box – let alone strength in my body. I was pretty much in survival mode. As such, when I was severely unwell, and my health at its absolute worst – I just didn’t have the energy for a bath, and a shower was totally out of the question. It was simply too hard. So, what did I do?
Absolutely fuck all! That’s what I did. Thank you very much, and goodnight.
There are of course, alternatives to having a bath or shower, such as wet wipes and dry shampoo – which isn’t ideal, but certainly better than nothing. I say, ‘of course’ like it’s patently obvious. However, I’ll be honest – those options never occurred to me at the time (hindsight is just glorious, isn’t it?!). To be fair, although I was blatantly festering in my own filth, I was incredibly busy. Not busy doing anything per se. But busy functioning – in a state of existence where washing was not a top priority. It was high, of course – but not top. As such, I can’t offer advice on how to make having a bath easier.
Nonetheless, if you are so severely unwell that you also can’t wash, and are too busy tending to your body’s basic needs for functioning – then allow me to extend my mucky hand of support and try to make you feel just a tiny bit better about it.
For example, what is your personal best for number of days without washing? Eight or nine maybe? More? If it makes you feel a little better, my personal best is 11 days – so you’re not alone. I am here for you my friend – and I am happy to be your stinkspiration. Odour de toilette anyone?
I’m sharing this highly personal and gross information because in hindsight, I’ve realised I might have felt a little better when I hit the 11-day mark to know I wasn’t alone. In a similar way that misery loves company, maybe chronic crustiness does too? After all, having hair like Denise Richards and smelling like the Body Shop is not the be all and end all. Not when you’ve more pressing challenges to conquer– like surviving the day in one piece. In my humble opinion, being a stink-arse is a bit like death – it’s a bigger problem for everyone else. Those who matter don’t mind, and those who mind don’t matter. And you will get clean at some point, even if someone who matters has to help you.
My someone who matters is Pete. When I was severely unwell, housebound and often bedridden, I was very much reliant on his help to get me clean. I fully appreciate how fortunate I am to have a loving partner who was willing to run the bath for me (on the occasions when I felt able to handle it), and frankly, when I was at my worst – wash me as well, because I couldn’t do it for myself. However, being cared for by Pete – my equal, my love and my rock, naturally led to disagreements about the way he washed my hair. I mean seriously – there’s nothing like having a partner with a shaved head mansplain to me when I’m at my weakest, how best to wash my long hair. ‘Okay, Vidal Sassoon, shut your cake hole and just wash it the way I told you to! Oh, and by the way – thank you, I love you.’ It’s hard enough feeling helpless, without putting up with a bad hair wash. I mean, I might not have washed for 11 days, but I’ve still got some fucking standards.
Nonetheless, even with Pete’s support, I simply wasn’t well enough to wash very often. I wrote our feelings about this down in my journal at the time:
Thankfully, after a few years, my condition eventually improved. I was less severe – but still very unwell and predominantly housebound. Nonetheless, at this point, showering thankfully became an option to me again – albeit infrequently, as I still found the whole ordeal difficult. On the happy occasions when I was able to shower, I really struggled to do it standing up. I wasn’t strong enough, and I would feel too lightheaded and just ‘not right’, like I needed to sit down before I fell down. It was at this stage of my illness that I bought a shower stool to make life easier. One with a top that rotates. It was great. It gave the middle finger to my otherwise inability to shower, and put the swivel in ‘sit and swivel’. I highly recommend it. Or at least, I do now.
I had reservations initially about using it, as I don’t think any previously able-bodied person transitions willingly at the age of 38 to needing any kind of ‘aid’ to help them shower – something they’ve managed perfectly fine for themselves most of their life. But those reservations disappeared immediately the first time I used it. It was just such a relief to be able to sit down comfortably to wash. It was positively luxurious. And I wasn’t the only one in our house who thought so; my then 17-year-old perfectly healthy stepson also used to take his sweet assed time, chilling out on it in the shower, listening to his music. So, there you go – it passed the teenager test; shower stools MUST be cool. Albeit, I would have preferred a verbal thumbs up, rather than sharing my beloved stool with a hairy assed man-child.
At this stage of my illness, washing my own hair became manageable again – albeit only occasionally. Still a win though… hooray! And baths were more tolerable too – albeit, only for short periods. Double hooray! However, I still couldn’t wash my hair in the shower without serious repercussions. So, I used to do it in the bath instead. Nice to have clean hair, but not a fun process.
I’ve always disliked washing my hair in the bath, because too much of it falls out and I end up sitting in a pool of hair seaweed. I imagine it’s more akin to Bognor beach than Barrier Reef. Not ideal – but that was often the only way I could manage it at the time. That, plus I couldn’t last long in a seated position. I needed to lie down after washing my hair, which was manageable in the bath, but not in the tiny shower cubicle we had at our old house (the picture above with the shower over bath was taken in our new house, to illustrate how utterly fantastic shower stools are).
Regardless of whether I got clean in a shower or bath, it remained an infrequent luxury, and I would always need to be well rested beforehand, and then lie on my bed to recover from the exertion afterwards – sometimes needing to stay there for the rest of the day. I had to give up drying my hair for years – apart from the occasions when Pete would dry it for me, and there was definitely no danger of straightening it or doing anything other than tying it back in a ponytail. But I didn’t care; I was moving – albeit very slowly, in the right direction.
At the time of writing (because shit can change when you have M.E and POTS), I am happy to say I now shower much more easily. Yippee! And, not meaning to brag or anything, but I can even do it standing up – including washing my hair. I know, right? Pretty fantastic. Standing ovation, anyone? Maybe I’ll just give myself one – since I can stand again. This is a far cry from how it used to be, and has taken me years to reach this point. My occupational therapist (always the voice of reason) tells me I should continue to shower sitting down in order to conserve energy for the rest of the day. I know she’s right – but I still don’t do it. Largely because that would feel like a step backwards, and my sanity needs to feel like I’m moving forwards. I’m aware of the unnecessary energy I’m spending by doing it stood up, however, I feel that what I lose in energy expenditure, I gain in mental wellbeing and general pride in myself. Everything is a trade-off with chronic illness.
Although showering is a massive improvement from when I was severe, it still does not happen as often as I would like. As is frequently the case with chronic illness, it’s all about prioritising how I choose to spend my energy. I largely choose to spend mine on looking after my son. I want him to remember me as ‘Fun Mum’ – not ‘Flawless and Flat-out Mum’, when he looks back on his childhood. Albeit, if there’s a fine line between love and hate, then I hope there’s no fine line between flawless and fermented – otherwise, I’m fucked.
Then, what energy I have left is spent keeping the family fed (sounds high energy – but I batch cook so I’ve got a load of ready meals in the freezer to reheat most days), wearing clean clothes, and the house just within the acceptable limits of clean. But not cleaner than me, because that would be rude. And all the while, I need to make time to rest in bed for 1-2 hours every afternoon, and go to bed very early every evening, to help me manage my POTS and M.E symptoms.
I’d say my current personal hygiene is just within the limits of acceptable. I’m at the stage where I shower according to what’s going on in my calendar that week. That’s how I hide my struggles. If I know I’m going to be seeing friends for play dates with our children, or any other member of the human race who I would ideally like to make a lasting (rather than lingering) impression on, then I will try to factor in a shower the day before. Not the same day though, in case I don’t have any energy left for making the good impression.
I would definitely like to wash more often, no doubt about that – but then I would also like to lie on a beach in Mauritius, drinking pina colada from a pineapple whilst being waited on hand and foot by a shirtless Bradley Cooper, and serenaded by an equally shirtless Gary Barlow. C’est la vie. Thankfully, my son is happy with me, which is the main thing. It’s always a juggling act – trying to be a good mum without being a gross mum. But I’m happy with where I’m at.
Take Home Message
Self-kindness is key to me managing the hygiene hurdles of chronic illness – regardless of where I’ve been on the severity spectrum. When the hurdles were too difficult to overcome physically, I managed them mentally; I accepted my washing limitations by focusing on what I could achieve instead. Whether it was brushing my teeth, replying to a text message, sitting up, or simply just getting through the day. It ALL counted as achievements.
With respect to where I am today, I have the humility to recognise that I did nothing different to everyone else in the same chronic illness boat (i.e., pacing and resting, and scouring the internet for a miracle cure). And I accept that my improvements – albeit they took 5 years to get this far, are largely down to getting the right medications to manage my POTS… topped up with an absolute shit-load of pure luck – for which I will always be eternally grateful.
As such, my only advice to anyone else who is struggling is to pat yourself on the back and be kind to yourself, for you made it through another 24 hours. Only you can truly understand how hard today/recent days/weeks/months/years have been to get through, and only you can fully appreciate what a solid effort you’ve put in – physically and emotionally. Because it’s hard. It’s REALLY bloody hard. Therefore, only you can give yourself the exceptional level of praise you deserve for a job well done. Even if you truly reek from not washing – part of that stench is the stench of awesomeness.
If you’re still with me, then thank you so much for reading – and please feel free to take a look at my other posts.
Excellent piece of writing. Love how you dare to address topics often considered too embarrassing for general public consumption. When everyday tasks are too much, it is true – be kind to yourself, everything else can be done when you feel up to it!
Thank you so much for such wonderful feedback!
Truly brilliant writing, offering an insight, but also a compassionate perspective that will encourage other sufferers to get through the next minute, the next 2, 5…and all those that make up a day. Even when the wiff gets bad, it’s not the most important!
Sharing is vulnerable but important and affirm for other going through the experience (or the shit 🤥 as we like to call it).
Thank you so much Nicolette for such lovely feedback! I really appreciate it x
I was feeling sorry for myself as I have had a difficult day with fatigue and IBS problems. Reading your post I was able to relate and was thankful to know that I was not alone.
So sorry to hear you’ve been struggling – but really glad that you could relate to my post. You are definitely not alone. I didn’t realise until I became chronically ill just how many of us are out there. I hope today is a better day for you.