Yes, I really am writing a post about the importance of pyjamas.
I’m sure a lot of you are squinting at your screen wondering if you’re reading that right, because if I, a person living with chronic debilitating illness, consider pyjamas important enough to dedicate a whole blog post to, then there must be something strange going on. Right? I mean, everyone loves a comfy pyjama set, I’m sure, but who loves them that much?
The answer is me. I do. And I’m going to tell you why.
One of the biggest sacrifices for me during 2019 was recognising the loss of my ability to do my own personal care. That means washing, bathing, showering, washing my hair, changing my clothes, getting dressed, getting undressed, brushing my hair, brushing my teeth – you get the picture. It would probably disgust a lot of you to know that I went for three months without a shower or a bath (I survived on wet wipes. It was not a good time). But I found myself without a choice, and I hated it.
I had already been using aids to help me with washing for a couple of years, since I was 24 – a bath lift, a shower stool, getting someone else to wash my hair (usually Charlotte). That was hard enough to accept, especially because I still consider myself to be young (ish, at least!) so it was a blow to my already low self-confidence.
But then, in May 2019 when I was aged 25, I completely lost my ability to walk for over a month.
Suddenly, my ability to wash and dress myself had gone completely. I couldn’t even get to the toilet on my own – I had to be wheeled in and out of the bathroom, although thankfully I could transfer onto the toilet seat myself most of the time. Not always, though. Sometimes, I was too physically weak to even pull my trousers down by myself and I had to have help.
It was mortifying. I was beyond embarrassed, but at the same time, I was so exhausted both mentally and physically that I just… accepted what was happening to me. I never turned away the help because I really needed it – it was that or wet the bed, frankly, and I knew which one I’d rather. Sucking up and accepting minor embarrassment was so, so much better than the alternative.
But while I was still able to physically go to the toilet, I was no longer safe enough to have a bath or a shower on my own, even with my aids. I couldn’t stand up without my knees shaking and my ankles screaming in pain, and I fell more often than not whenever I tried, so I was rarely, if ever, out of bed. There was no way I could safely get myself onto the bath lift, and definitely not into the shower, which had a step up and a corner stool.
To be honest, even if I had been able to physically get in the bath, I wouldn’t have been able to wash myself. The thought of moving my arms that much was horrifying when I was so beyond fatigued that I could barely raise my own head or twitch my fingers.
So, three months went past without me having a wash beyond a few wet wipes in bed.
But what does any of this have to do with the importance of pyjamas, I hear you cry? Bear with me. I’m getting there.
The horrible thing about not being able to wash isn’t just the smell or how gross you feel or how icky your hair is – for me, it was the mental deterioration that accompanied it. I felt disgusting, inside and out, along with feeling useless that I couldn’t do a single thing for myself. When I was lying in the same bedsheets in the same pyjamas in the same position for weeks on end, it was beyond disheartening, and I struggled to do anything to make myself feel better because I desperately just wanted to move. To see anything other than the same four walls.
I couldn’t do that, but, slowly, I realised that there were things I could do, if I accepted help.
Charlotte (my partner) and I started to have carers coming into the house.
Now, our journey with care was far from smooth, and I’m sure we will both go into it in much more detail at some point, but for the sake of this post, I’m going to skip to the part where I have the carer I have now, who comes in to help me with personal care and also keeps us on top of the housework and is generally fantastic (we call her Mary Poppins, and with good reason).
Suddenly, I had help. I was washing and getting dressed. Sure, I wasn’t on my own, and I wasn’t even really doing most of it myself, but it was happening. I was clean. I was in different clothes.
The first time I had a bath, after three months of nothing and then two months of occasional washes at the sink when I could manage it, I was on the verge of tears. I would have sobbed hysterically if I was on my own.
Nothing, absolutely nothing, can describe the feeling of clean after so long without it. I was inhaling the scent of shower gel for hours, running my hands through my (not greasy!!!) hair, and rubbing my face against my clean pyjamas, which probably makes me sound very strange, but it was blissful. I was clean.
My ability to walk came back, slowly. A lot of my acute issues seemed to be caused by a run of nasty infections, and when I finally got on top of them I started to recover. I was able to spend some time downstairs, move around the house with a zimmer frame rather than being wheeled, and even go out to doctors’ appointments occasionally in my wheelchair with Charlotte driving. I regained some of my energy. I was able to read and write again, occasionally and with lots of rest, and I slowly started to feel like myself again.
But I still have my carer help me wash and dress.
That probably sounds odd, right? What self-respecting 26 year old would have someone else get them dressed, rather than just doing it themselves if they were able? The answer is: conserving energy. When I insisted on washing and dressing myself, not only could I not do it very often (showers were a once-a-week thing at most, and I used to get dressed every 3-4 days-ish, which meant just changing into another set of pyjamas) but I also exhausted myself so much that I could barely do anything else all day.
With help, though – I could write. I could have conversations. I could watch TV and actually follow the plot. It turned out that not using up my small allowance of energy on getting myself washed and dressed every day freed up my ability to do things I actually enjoyed. Things that made me feel like I was living, not just surviving.
As Charlotte once put it: if going to the gym every morning made you unable to go to your job, wouldn’t you just… stop going to the gym?
So I did it. I stopped going to the gym. I let someone else help. Between Charlotte and my carer, I now wear clothes almost every day (ACTUAL CLOTHES) and I have a wash three times a week, and it feels amazing. And all it took was letting someone else take over for me, so that I am able to spend my precious energy on things I actually enjoy.
So: fluffy pyjamas. Yes, I’m getting there. As wonderful as it is to wear actual clothes most days, I should mention that they probably aren’t the sort of clothes that most healthy people think of wearing. Even with help taking the clothes on and off, my body is still riddled with pain and weakness, and that dictates what I can wear more than I would like it to. Gone are my days of fancy outfits and carefully-done hairstyles; I now reside almost exclusively in baggy jumpers and stretchy jeans, I sport a short haircut that requires almost no brushing, and I never wear a bra.
Yeah, literally never, and if I absolutely have to (dysphoria sucks sometimes) then I wear the softest of sports bras that I specifically researched to be good for my poor inflamed ribs, and I get someone else to put it on and take it off for me, because I do not have the fine motor controls for those piddly straps.
What I’m trying to get at here is that I realised the importance of comfort and cosiness over looking ‘acceptable’. When I was younger, still at university or regularly seeing people, I felt very self-conscious about looking as ill as I felt, so, more often than not, I would dress up. I would deliberately wear heavy jeans even if the weight made my hips cry, and put on a shirt and jacket rather than a hoody so that I looked more suitable than if I’d literally just rolled out of bed feeling like death warmed up (which was usually the reality).
And it worked, for the most part. They don’t call them invisible illnesses for nothing; hardly anyone had any idea that I was crying on the inside from pain and exhaustion simply by being outside and dressed, because at least I looked, for want of a better word, normal.
But when I went through my period of not being able to wash or dress at all, my attitude changed completely. I was so desperate to feel comfortable and good and clean that it didn’t matter what I wore, so I always went with the easiest options – soft tracksuit bottoms, stretchy leggings, elasticated lightweight jeans, baggy warm jumpers, and, yes, fluffy pyjamas. The feeling of soft, light clothing against my skin was so much more delightful than the heavy, horrid feeling of ‘presentable’ clothes that I vowed right then and there that I was never going to go back. And, for the most part, I haven’t.
My wardrobe now consists largely of soft jumpers and floof. (Floof is what Charlotte and I call extra fluffy clothes; I have a pyjama hoody made out of deliciously soft fluff which you can see here):
Do I look ridiculous? Absolutely. But have I still answered the door like this? All the time. Pretty sure my neighbours now know me as the person who lives in strange fuzzy items, and the postman has given me more than a few odd looks over time.
But I don’t care. At all.
I’m comfy.
Being comfy is a rare occurence in a chronically ill life. I’m nearly always in pain no matter what position I’m in, and I’m so fatigued that my body is sore and my eyes itch and my muscles scream at even the slightest exertion. So I will leap at any chance I have to make myself even slightly more comfortable, because trust me, it matters. It matters a lot.
Quite often, my carer will help me change out of one set of pyjamas and into another. Even when I do wear clothes, they have to be comfortable enough that I could sleep in them, in case I crash and can’t get changed again that day, even with help (which does still happen. No one wants to help a ragdolling person get changed, trust me, it isn’t pretty).
So are fluffy pyjamas really that important? Yes, yes they absolutely are. I’d go so far as to call them a lifeline. I know I’d be lost without them, and the thought of forcing myself into something physically painful to wear just for other people’s sense of decorum now sounds ridiculous to me. And yet, it’s how I lived for seven years with chronic illness, until I finally decided to just stop caring and wear what I was comfortable in instead.
It’s okay to be sad about this, of course. It’s natural to be frustrated and upset when you’re this sick, and I had a hard time saying goodbye to some of my once-favourite items of clothing that I loved to wear out, but just cannot tolerate anymore. But the reality is that, for me, the sense of comfort and cleanliness and delight I get from wearing clothes that actually help me get around and get more out of my day is so, so worth it. Plus, I get to look like a fluffy animal a lot of the time, and it’s cute and an excellent way to get more hugs out of Charlotte.
So: embrace the fluffy pyjamas. Trust me, you won’t regret it if you do.