Laura’s Pen lists ten things that become normal when you’re chronically ill, which really aren’t normal, such as having to rest after a bath…
I was talking to my doctor about my shoulder and neck pain and, to stress the level of pain I was in, I told her I had to sleep on ice packs and then replace them during the night. But then I mentioned in passing that it had been about a year since I had been able to sleep on a pillow. The shock on her face spoke volumes. “Without a pillow?” she sputtered. “I couldn’t do that.”
Well, of course I had no choice, that is, unless I wanted to not sleep at all and cause myself more pain. But what I realised then was I was doing something abnormal but had been doing it for so long I considered it normal.
I don’t know how many of my fellow Lyme, ME and Fibromyalgia sufferers have to sleep without a pillow, but what I do know is we and other chronic illness sufferers (including those of my other conditions endometriosis and PoTS) are doing a lot of things that wouldn’t be considered “normal” by the general population but are so everyday to us we get used to them.
So to help any “normies” out there get a picture of what really goes on in the lives of the chronically ill, I’ve compiled a list of things that have become normal for me, that aren’t very normal at all…
I think most people I know with ME have some degree of sensitivity to light. A lot of us wear sunglasses whenever we are outside, rain or shine, hot or cold. Again, a lot of us wear them in shops due to the strong flickering lights they have in there. Some of us even wear them inside our own homes (I have been known to do this on occasion).
Apparently I have abnormally large pupils which means my eyes are more prone to sun damage and I should wear sunnies whenever outside. But abnormal pupils or not, I am one of many chronically ill people donning the shades to step into the rain.
2. Having to lie down after having a bath
I tend to have lukewarm baths because otherwise I am a mess afterwards. My POTs means that when the heat gets to my skin all the blood vessels dilate but they don’t go back very easily. Meaning all my blood is where it shouldn’t be and not feeding my brain properly. It is very common for me to stand up from a bath and find my eyes are blacking out and my limbs going wobbly. These are called pre-scynope symptoms, which basically means pre-fainting.
Regardless of how warm the bath is, I need a good lay down afterwards as it’s exhausting. This is a common complaint in ME also, regardless of whether baths make you dizzy. Don’t get me started on showers.
3. Wearing expandable clothes
I know a lot of people will have experience of bloating. I’ve long had to buy school/work trousers in two different sizes because of the bloating I get around my period, which I now know to be a symptom of my endometriosis.
But it is very common in most of my conditions (and a lot of other people’s) to have very unpredictable bloating, I.e. You have no idea when it’s coming but it happens so often you have to be prepared at all times. My bloating has actually improved a lot recently, but unfortunately I’m finding I get pain from wearing trousers that actually fit well by the end of the day, and have a feeling I’m not alone in this.
4. Forgetting what “not tired” feels like
I can’t remember what it feels like to wake up and feel refreshed. I can’t remember what it feels like to have been awake an hour and not feel like I want to crawl back into bed (if I’ve managed to get up yet). I can’t remember what not-tired feels like. I’ve tried.
I remember that I used to get up in the mornings begrudgingly but get out of bed and get on with my day and forget about that first-thing grogginess by the time I had breakfast. But I don’t remember what that felt like. It’s been so long, the sensation of not being tired is something my mind and body have forgotten.
There is a condition called Raynauds syndrome that pops up a lot in my list of chronic illnesses. It is condition that affects blood flow to the extremities, particularly in response to cold. And it can cause a lot of pain and discomfort, especially when you start to get them warm and get the blood back in them.
It is worse in winter (think wearing gloves inside or warming them with hot water bottles/hand warmers) but that doesn’t mean that when the rest of my body thinks wearing a nice floaty maxi dress is a good idea, my feet don’t think they’re in a block of ice. It makes for some interesting fashion choices.
6. Being constantly in pain
At any one time some part of me will be in a fair amount of pain. More likely it’s more than one part. You learn to distract yourself to a certain extent, but that’s not always possible. This is where things like sleeping on ice packs, taking pain killers, constantly having hot water bottles and microwave wheat bags on, and not using a pillow come into play.
You may be aware the pain is not normal, it reminds you of its presence constantly, but your pain management methods become normal and everyone has their own unique combination of pain battling techniques. Unfortunately this often only takes the edge off!
7. Not wearing a bra because it causes pain
This is quite a common complaint in the land of Fibromyalgia. For me it is because of my shoulder pain but for many it’s because the underwire or straps cause them an abnormal amount of pain or even a soft bra restricts and hurts too much. So while a lot of people (women, mostly) take their bra off once they get home, those with chronic pain may not be able to wear one full stop.
8. Using aids associated with the elderly when you’re certainly not old
Let’s start this by saying these are not aimed just at the elderly, they are aimed at anyone who has a disability or needs assistance with these tasks. But if I say: mobility scooter, wheeley shopping bag, dosset boxes or shower seats to you, you might imagine someone elderly using them. And actually, these preconceptions make it harder to accept using something like using a walking stick yourself. But actually, they can be essential to help you do some of the basics in life.
9. Having about five bazillion alarms/reminders on your phone
Two reasons for this one. You have brain fog so your memory isn’t up to scratch and you have to take a lot of pills at different times. One 30 mins before food, one with food, one two hours after food, you get the picture. Also you need a dosset box so you can remember if you actually took the tablet or not when you panic half an hour later that you have forgotten it despite the alarm. This stuff wouldn’t be easy to remember if you were well. Although you wouldn’t need all the pills if you were well..
10. Wearing clothes in layers at all times
Is it hot in here, or is it just me? It’s just me. Oh. Better take a layer off.
Five minutes later: blimey! Is it cold in here, or is it just me? Oh…yeah..it’s because it’s the middle of winter and I’m sitting here in a vest.
And repeat.
It becomes obvious after not very long of this that wearing layers is the way forward. You have to be able to have a hot flush and strip down without flaunting your bits to the neighbours. Cardigans will become your friends.
I’m sure the rest of you must have some more suggestions. Please comment with them below!
Lots of love from,
Laura’s Pen
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