Chronic Bed Head

Once upon a time, when I was little, I used to love holidays where I could stay in my pj’s all day. Those times were rare, because unless you were sick, my parents thought you should always wake up, make your bed and get dressed. So when I was sick, or perhaps on holiday for school and could lounge in my pj’s all day long without speculative glances from my parents I loved it. Fast forward to 2018, when I am 43 and should be out working and being active and here I am living in pj’s or some variation of comfortable clothing that I can get away with exiting the house without looks. Not that I probably couldn’t go out in my pj’s; I have worked in retail and I could tell stories on what I have seen people shop in. My child-self, looking into the future would dance up and down positively glee-full seeing a future of “every day is pajama day,” while the adult me wonders what the hell happened. There are adults out there who are envious too, even if I explain the reason why I stay home and the reason why I stay in pj’s all day and I know it’s because their inner child is starry-eyed at the fantasy of trotting around in pj’s from sun-up to sun-down. But the reality is not as exciting. In fact, I’d trade my pj life for going out to work if it meant I would no longer have chronic pain.

So now you might be wondering, if you don’t have chronic pain/illness, what is it like to stay in bed, stay in pjs (or some pj variant) all day long? Let’s start with this: I don’t eat bon-bons all day, I don’t watch soaps or chat with my friends on the phone (because 99% of them work) and it’s not a lazing about in luxurious comfort all day long either. In fact, let’s start with that.

• Staying in bed, in my pj’s all day is probably the farthest thing from comfortable. So much so that I joke about it regularly casting myself in the role of the Princess and the Pea, because I can never get quite comfortable anywhere, regardless of where. The bed, the couch, the chair..nothing is ever perfect, because my pain does not come from an old mattress or saggy chair, it’s me. So all I can do is try to make myself as comfortable as I can and even so, I have to get up and move every 20-30 minutes and go through the entire process of attempting to get comfortable all over again. It’s frustrating and maddening at times.

• For any that think someone with chronic pain socializes all day long from bed is very misinformed. I do keep in contact with people via Skype and various other social media, but it is in no way a replacement for actual human contact. The majority of people I do chat with are also chronic pain patients and are very lonely. Chronic pain is itself, very isolating and very lonely.

• It is a preparation for war when I am in bed, fighting through crippling pain. There’s the heated blanket (which hands down is the best investment I have ever made), there’s my five pillows that I prop and stack however I can to get comfortable and it changes every 30 minutes or so, my computer so I can write and work on ideas for future articles and my blog and there’s probably an ice pack on any given day to try and launch a two-front assault on the pain, my diffuser with essential oils that make me happy, the lamps on the night table are used instead of the overhead light because too bright can give me a migraine, my cat Neptune nearby, the two dogs probably on the bed with me and honestly, if I could fit some stuffed animals on the bed I would. When in war you need all the ammo you can get your hands on.

• When I deem that it is a stay-in-bed kind of day (or week) , I do all my work and writing from my bed making myself as comfortable as I can. I am grateful that I have something to keep me occupied and that makes me feel useful. There are those of us out there who aren’t physically able to tackle anything, even if they want to. I think it is unfair to target them as lazy when none of us asked for any of this.

If there is any departing message I could leave with those who do not understand what it is like to hurt so badly that you can only tolerate extremely soft, lightweight pj’s or leggings and soft, loose, t-shirts, or how it is to hurt so badly that staying in bed is the only way to get any relief, even if it is for 30 minutes at a time, is that we come to our bedroom, our sanctuary, because we have to. I think if there was something that helped our various symptoms, that made us feel well enough to leave our bedroom, we would hop on it and take it because not only would we be able to venture out of our bed but we’d have our life back. That is something we all want.

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