Consciously or not, pajamas and lounge-wear gradually become important topics, and important assets, when illness has you stuck in your house or stuck in bed.
Strategies gradually arise for rotating pajamas and for layering them with clothing, should the need arise (say, for grabbing groceries, rushing to the pharmacy, or picking up kids).
As trivial a topic as it may seem, we eventually find that we are not alone in devising and adapting these strategies, nor are we alone in dramatically adapting our standards and expectations, at least some of the time.
As a Lyme patient, there is a sad irony to recently proposed legislation in Montana to make yoga pants illegal, because if we instead spent this political energy ensuring timely diagnosis and care for Lyme disease, I would be far less dependent on attire such as yoga pants in the first place. I’m sure I’d still be irritated (and rightly offended) by the proposal, but I would be less logistically impacted by the outcome.
The pajamas-all-day topic gets long strings of discussion going when it occasionally arises in on-line Lyme support groups (particularly on facebook). This is admittedly more the case in the groups that are all or mostly female. Still, whether they post about it or not, patients of both gender have to deal with, if not consciously think about, this topic and related adaptive strategies.
Our Feelings About Clothes?
How do you feel, in the midst of illness, when you think about your clothes? Again, this sounds trivial (and it is, compared to the rest of what we deal with), but I get caught off guard now and then by my emotional responses to an act as seemingly simple as getting dressed.
I have loved reading people’s thoughts, frustrations, and humorous tips on this topic in support groups. I would really love to hear more from people willing to share about any aspect of your thoughts, feelings, or experiences with this aspect of illness (Lyme Disease or any illness).
And I’d love to see pictures, from the braver among us. Looking good, looking bad, changing size, how it all makes you feel….anything.
I’m sharing a bit of my own thoughts and photos here in hopes of following up with whatever people will share publicly. It is certainly easier in a closed support group to do so. And I can’t say it’s not embarrassing to post about (there are certainly more important things to write about). So there may be no takers. But it has been surprisingly uplifting over time to see the good, the bad and the similar to help maintain perspective and encouragement.
For those with thoughts on this that prefer anonymity, there are a few poll questions at the end of the post, in case I follow up on this and find myself needing some supporting or enlightening numbers.
My Clothes and I….
But, as a Wildlife Biologist, I also worked in the woods, and tended to end up buying field clothes or thermal layers when I shopped (even if my intent was to buy something business casual or something more fashionable).
Clothes are a hard topic now. My weight changes constantly and it’s an understatement to say I haven’t had the same life as I had before. I’ve been able to do field work during some stretches of my recovery, but none of my pre-Lyme field or office clothes fit (or are within six sizes of my current size). I had to re-buy clothing for work when I returned to work during my second year, and then my weight continued to change.
Over the course of my five years of Lyme (3 years misdiagnosed) I’ve luckier than many Lyme patients in the length of time I was able to keep working, and the amount of time I’ve been able to be somewhat or sporadically active. But still, I’ve spent a great amount of time in bed, and most of the past year in my house. After five years, it is time to consider acceptance, but I am still balancing how to accomplish that without letting go of my certainty that I will get better. It’s a combination of those that I need to find peace with, but it is a struggle…and that all gets tangled up with issues like clothes and getting dressed.
Which is why it is sometimes emotionally difficult to get dressed. And always logistically challenging.
Clothes aren’t a priority, until I suddenly have to go somewhere. Day to day it’s the logistics of alternating pajamas and lounge wear. It’s a good day when the two are rotated. It’s a bad day when I don’t feel well enough to ever change out of pajamas, or when I’m behind enough on laundry that the two become one.
In the interest of (mostly) full disclosure, I’ll note that I am, as usual, in pajamas today. The day I started this post, I was ‘dressed’, meaning bottom of the drawer yoga pants that haven’t been my size for years and a night shirt from the previous night layered with a scruffy hoody for warmth.
As was the case that day, I need a shower. I will pretty much leave it at that. Except that now begin the big decisions about whether or not I can handle a detox bath before I shower, and whether or not I will remember to make myself some bad coffee, so that after all the bathing and showering I have the brain power for the pharmacy, or any doctors that return calls today. Which will be fine clothing-wise, because I have plenty of clean outside-the-house clothing, oddly enough (or not, since I’ve been home).
My Lyme Weight…
Not working makes it somewhat easier to deal with the weight fluxuations that I still experience, though they are still not easy to deal with when money isn’t there to spend on clothes. When you are housebound or even semi-house-bound, clothes shopping is also not where you can (usually) spend your energy. Occasionally, thrift store shopping is a good distraction and a good way to gauge my stamina.
It seems that most people change weight during Lyme Disease, and most change pretty dramatically. Though it happens in both directions and varies over time, from what I read of people’s experiences. In my case it was weight loss, which is not as fun as it sounds.
It was very scary the first couple of years, and no matter how little I had to lose or how scary I looked, I was always losing more (at my lowest I was around 40 pounds under my pre-Lyme weight). I got catty comments from a few (select) people at work, which was hard because I was already seeing sides of people I didn’t want to think were there, and that was just one more hurtful (and highly insensitive, under the circumstances) thing to have to process.
Even in Lyme groups there are occasional comments from people trying to lose weight that undermine the fears of those that are losing weight beyond their control. But the comments are not maliciously intended. We all realize that it is hard and can be scary in both directions.
Your Best, Your Worst, Your Thoughts?
That’s an awful lot of words used just to get to the point, but I wanted to be fair and say a bit about my own current and previous lack of style. In Lyme groups, people are very open about their pajamas and hygiene and even occasionally with photos (but quite a few more photos than usual lately).
My hope is that at least a few people will share some stories or tips or thoughts….or photos. Even (or maybe especially) photos of you looking great. (Someone started a thread in that direction in a Lyme group the other day, and the responses there were incredibly uplifting, so both sides of the coin are important).
If I get stories from others, there will be a follow up to this. This is a topic I really like hearing patients talk about because it reminds me in a very tangible (and non-symptom and non-pain related) way that we are not alone in all of this.
Aside from commenting here, you can also share via post or message on Invisibly Lyme Montana’s facebook page (or by tagging me (Angela Daenzer) in one of the many related facebook threads if we are in a group together).