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…
1. Wearing sunglasses whatever the weather
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.
5. Wearing woolly socks in the height of summer
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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Related posts:
My symptoms: a complete list of my symptoms of ME/CFS, Lyme Disease, Endometriosis, POTs and Fibromyalgia
But you don’t look sick?! – A letter on why I hide my illness
Why I took to twitter to live-tweet a day in the life of ME/CFS, Endometriosis, Lyme Disease and Fibromyalgia
Goodbye 2016, the year of health revelations
Yes on wearing expandable clothes! People are like “I don’t get the leggings trend” and I guess they don’t get bloating either. And having to lay down after a bath or shower….
I live in leggings now! Apparently they’re in fashions again. I didn’t know they’d gone out of fashion, I’ve been wearing them since they were in fashion 15 years ago!
I have to wear layered clothing. Because I am oftentimes very weak, I leave clothing in several rooms of my house as I have to alter my dress every hour or so. I also keep small electric heaters near my couch and chairs in case I get severely chilled. Healthy people can’t believe my routine and think I am acting like “the princess and the pea”.
Spot On!!! Thank you!
This was a great article, and so true! Some of these may look and sound humourous to society, but are our norm. Sharing this to all my social channels, thanks!
I can’t remember what not tired or exhausted feels like either. It amazes me thinking back several years to before my health started to go south at all the things I used to do, how different my life was. As for no.10, I seem to be in countless layers constantly without ever heating up, but at least my body is consistent that way in always been cold. Great post.
Caz x
Socks! All the time! And multiple pairs of socks. My normal is usually 2 pairs of normal socks, then fluffy socks. I didn’t realise that wasn’t normal until recently!
Caroline-potsandspoonsblog.wordpress.com
absolutely love this! currently dealing with end stage liver disease, pancreatitis, heptic encephalopathy and diabetes. oh ya … I’m 33 yrs. old. oh, a day without pain would be sooo great. hard to believe it’s a norm.
I love this article! I have fibromyalgia and R.A. and can relate to almost every point in this article! It’s comforting to know I am not crazy and not alone! I don’t know anyone else who has fibro or RA so sometimes it’s very lonely
You’re not alone! I have both of those and several more. It’s a comfort to know I’m not the only one who needs to lie down after a bath. Oh, the looks I get wearing gloves in the grocery store. No way I’m going down the refrigerated or frozen aisles without my gloves.
Thanks Rebecca 😺🐾 I never thought about wearing gloves more but that’s the best idea. My hands hurt so bad in the refrigerated isles. Thanks sister !
I wear glove-liners (horse-riding shops; outdoor sports shops) instead of full gloves in the warmer weather. Or at home when I need to feel what I am doing, e.g. typing.
If RA refers to reactive arthritis I have both RA, Fibromyalgia, Dyspraxia, CND & IBS. I’ve forgotten what it feels like to not be tired & in pain, as well as what it feels like to be able to spontaneously be able to just do something (anything) when I want to, or to be able to plan longer than 24 hrs ahead & keep to plans because I won’t suddenly find myself too tired or in too much pain to do pre-planned things.
I have fibro and RA also. Sometimes I can’t decide which one is causing the pain. But pain is there all the time to one degree or another. Last week I saw the RA doc and he said that my ankles were swollen. The pulmonologist said that my ankles were swollen, the cardiologist said that my ankles were swollen. I had to laugh. So which organ system is causing the swelling? I vote for RA. Anyway. It is true that coping with the pain causes one to do some odd things. The secretary at school is a good friend and she believes that I stop by everyday at the end of the day to chat. Actually, it is to rest so I can walk to the parking lot and my car. Hang in. You are not alone.
I also have Fibromyalgia and RA. It is very lonely. I can relate to almost everything in this article too but some of it for different reasons. Like the socks thing. My feet do get cold while the rest of me isn’t but also my nerves often cannot handle most textures brushing my skin so I often wear soft fuzzy socks and soft fuzzy PJ pants. For my worst days, I wear my clothing inside out so that no seams brush against my skin either.
@selena I am so sorry to hear about all the health problems you’re going through. I’ll be praying for you sister 🙂
I can relate to every one of these! I have EDS, POTS and something like MS. Great post 👍🏽
Yes, great post!
Love this Laura. I can relate on so many levels. Great blog xx
I have often that the same that we take dysfunction and make it our normal. I often think about this when asked what you’re pain based on a scale of 0 to 10. I have gotten so use to pain levels at what was a 3 or 4 to based now more like a 1 because it is always there.
The other area that I find frustrating is we learn to live with new symptoms without running to the Dr until we have it so severe that it is apparent it is something else. I recently lost a friend to a fast growing cancer because she had gotten so use to dismissing a new symptoms and by the time it had gotten so bad it was too late.
Hi Machelle, thanks for the comment.
I totally agree, and doctors can often be dismissive when you go to them if your pre existing condition could already explain it. This is what happened with my endometriosis. I didn’t go to the Doc until I was absolutely desperate, was given hormonal contraceptives which did help but didn’t find the problem. Only got diagnosed because a year and a half later I got a new symptom that didn’t fit (and I again waited a while to go to the docs) and the surgeon was shocked how bad it was in comparison to symptoms I’d been complaining of – I had all the symptoms alright, I just wasn’t complaining of them because they’d become so normal by this point.
I’m so sorry about your friend. I think we all need to remind ourselves that new or suddenly worsening symptoms should always be checked out x
Wow…I just stumbled across this post via pinterest. I have been battling cronic periformis syndrome/back pain for about 5 years and lately have begun to have other cronic pain. Reading this post has made me feel “normal” again. I can actually relate to every one of these. Yet I have thought that I was alone in this…or crazy. Thanks for sharing!
I’m glad you feel a bit less alone on this. It’s hard when you’re isolated by an illness to imagine other people out there going through the same thing. I’m a member of a few FB support groups for my illnesses for this reason 🙂
So I’m scrolling through Pinterest and your post pops up. I think you are talking about me…Well sort of. I am a former endometriosis, PCOS, Indometrosis (cells inside double and triple monthly), pre-uterine cancer sufferer (hysterectomy in 2006 saved my life). I’ve had fibromyalgia for as long as I can remember (correlated with my life-long allergies and later puberty) but not formally diagnosed till I was 38 and suffering. IBS is a wonderful companion (insert sarcasm) to have all your life, genetics love me. As well as anxiety disorder/panic disorder and menopause, don’t ever let a Dr tell you it isn’t possible at 40 because it is, especially with fertility issues.
Anyway, loved this blog post. Thanks for confirming I’m normal for a chronically ill person. 🙂
It’s depressing how much I relate to this :’)
Absolutely!
As someone newly diagnosed with fibromyalgia &ME, after 5 years of being told by multiple doctors that there was nothing wrong with me, one of the things that I am finding hardest (aside from finally finding a way to tell my parents) is that in the intervening time I *had* to convince myself that the multitude of symptoms were normal, because I knew that I wasn’t imagining them, but otherwise I’d go crazy. Now I have to forcibly stop myself and think; is it normal? Or is it a message from my body that I have to slow down /stop/ go to bed for a month.
But the thing that gets me most? How am I supposed to know if it’s part of the new normal or if there’s something else wrong that isn’t related? Like the time I went a week with hypothermia before being serendipitously diagnosed, because it was pretty much “normal”
I was clothes shopping at Good Will and found some jeans with elastic at the waist. The labels were missing and I thought, ” The owner had fibro, too”
You mentioned socks in summertime. I can’t stand socks in bed bud my feet neeed extra cover than the rest of me. So I sleep under a sheet for the hot natured part of me and folded a the foot of my bed are the cotton cover, the bedspread, pillows on top and a fuzzy critter cover. When I forget and pull my feet out from under all that for comfort sleep I know quickly they have to be back under fast or they hurt from being cold, 🌬Just like winter. I can relate to having the pains, fainty feelins and learning to think their normal cause my first fainty spell I was 8. So mine goes back a long way. Anxiety, panic attacks, exhaustion from doing nothing,and others have shown up the last 30 yrs and because we own our business I forced myself to go and work and deal with upsetting inspections, paperwork that seemed Greek to me, tax prep, and no one to take my place. Not understanding I was ill 😷 and with so many symptoms through the yrs I didn’t put them together, but the commercial that says I used to be a doer hit home when I was so low depressed and exhausted from pain and no vacations except long weekend stacations so I had no time to regroup and like the other lady I was alone and everyone but me thought it was all in my head. Some even said upon diagnosis so it’s not in your head? So if u take this meds will u get well? Or well you just do what the doc says and you’ll get well? I haven’t been well in all of my 62 yrs so I’m not getting well it’s just gotten bad enough I had to do something , so like the lady and her bladder pal I went to a rhumatologist. I’m better but will never be well and have been sick all my life and just found out 3 yrs ago. I get the drift of being alone! I was there 59 yrs but not anymore. God bless anyone who has been dealing with this norelenting disease you need his help to make it through cause it’s by the grace of Hod I’m here.
I love your article but I couldn’t help but wonder from the minute you said you first symptoms if you might actually have Anklelosing Spondylitis? It has every symptom imaginable. My is too advanced so I can’t recover but I can stop its progress. My teen daughters had already started symptoms and like my beginning they were diagnosed with Fibromayalgia. We are getting them worked up for AS now. It affects your eyes, heart, and lungs. I am already in Congestive Heart Failure and on Oxygen 24/7 but it is starting to get under control. Good luck and all my prayers!
Hi, thank you for the suggestion but my symptoms don’t really match up with that condition. I have zero back pain for example. It’s turned out I have severe endometriosis and which actually explains all my pain issues and probably a fair chunk of my fatigue. I have it on my diaphragm which coincidentally causes right shoulder pain! I do think the Fibromyalgia was a misdiagnosis though so thank you for the suggestion, and I hope things get better for you and your daughter
Yep, sounds like home to me. I have Adrenal insufficiency and every day is a challenge to not let it label me. Thanks for making me smile😎 I thought I was the only one that had a wrap in 90 degree weather! I’ll just smile next time someone looks strangely at me.
Thank you for sharing your day with us. I have CRPS and can relate to a number of these including ice-block feet and layers!
I can relate to all of your points! Since I also have Raynaud`s, I started looking for a way to go to the grocery store without losing the feeling in my fingers, toes, etc. So after a lot of searching I found out here in Holland we have something called `Silver Handgloves` and `Silver Socks`. It has a small amount of silver woven into them, which works just like aluminium foil: it reflexes the heat. But make sure your feet (of hands!) Are warm before tou put them on, since they also reflect cold lol. You don`t want colder feet that you already have, right? So watch out! :p
Hi Laura, I related to a lot of these, like having to rest after bathing. I have various issues, so spend the majority of my time at home and feel very isolated. You mentioned that you belong to FB support groups, and I am wondering if you know of one for people with CFS or ME. I would appreciate a recommendation.
Thank you.
Hi Eddi, I’m a member of this group: https://m.facebook.com/groups/457124101063722
But I would note that finding the right support group is very personal, don’t be afraid of trying a few until you find one you like best. There are absolutely loads to choose from x
My favorite is that I have a mental map of all the bathrooms around campus that have faucets high enough that I can stick my head under them for a quick cool-off. People tend to look at me weird when I show up dripping wet for class though. 🙂
Great post Laura! I have endometriosis and Psoriatic arthritis, I’d say I’m so used to the constant pain that I don’t even realise it’s there but that’s bull crap! Hardest thing I’m finding is imposing limits on what you can do in a day and how much pain you suffer if you over do it. Also the bombardment of hormones is insane with endometriosis, it’s like constant PMT! Amazed my hubby is so understanding, he’s there to help me out of bed on bad days and he makes me rest at weekends to recharge and tackle the new week
It’s so nice to read I’m not the only one experiencing this. My jeans are always very stretchy. I can’t deal with normal jeans and belts anymore. The bloating just makes it impossible. And resting after a shower or bath is so relatable. For healthy people it’s just something you can do quickly but I need to make time for it and even plan it in.
Stretchy clothes are my life. Leggings are definitely the way forward for anyone with bloating, I’ve even considered maternity pants so when my belly bloats my trousers naturally expand like a pregnant bump haha!
Thank you for this article though. I recently started a medical claim process and it’s shocking when you stop and think about how many things we do that aren’t ‘normal’ that we don’t even realise otherwise.
So close to home I don’t know if I want to want to laugh my belly off or sit down and cry!