I thought it would be an interesting exercise to spend a couple of days really tuning into my body and document every physical sensation, and some of the accompanying thoughts, to develop total awareness of my natural coping strategies dealing with my EDS symptoms. It was an eye-opening experience as it made me realise just how much I have been operating on auto-pilot for so long, just getting through each day as best I can without really being aware of HOW.
Some of these symptoms have been going on for YEARS! I’ve had the migraines since I was 17, the weak bladder ever since I was born (and having 3 full-term pregnancies hasn’t exactly improved that!), the lower back pain since I was a student in the early 90s. But a lot of the more ‘minor’ aches and pains I was never really fully aware of until now!
Woken up by B at 6.10, achy as usual, burning pain in arms. Particularly bad night sleeping as have a chest infection too. Feed B lying down in bed, as I usually do, as this meets both our needs – his for milk, mine for rest.
Ian gets up with B today so I can go back to bed. Even lying in bed holding the phone to type this is exhausting and painful for my arms.
Feeling guilty that I don’t have the energy to look after my family properly, and because I snapped at B earlier because he’d been sucking all night then he screamed because I had to get up and go to the toilet. I felt guilty about having needs of my own and being an inconvenience to him.
Lying on my side is painful as my hips and thigh muscles hurt with any pressure on them. Lying on my back is painful as my lower back hurts. It’s difficult to find a comfortable enough position to drop off to sleep. Rolling over in bed is painful as my joints feel so stiff, so I use the curly parts of the metal bed frame to pull myself over.
Getting up is painful as all my joints feel stiff. I have to get out of bed by slowly rolling onto my front, getting up onto all fours, crawling to the edge, and then climbing backwards off it. It takes much longer than it used to, and when I finally get out of bed, I walk like C3PO as everything is so stiff and painful!
Standing up needs to be done slowly or I get light headed and feel faint. Standing up sometimes, even if I’m slow, causes painful banging in my head. If it’s a good day, I can stand for a bit and brush my hair, although that is still painful on my arms and shoulders as it means raising them, and my hands hurt holding the brush. But some days, I don’t bother as I can’t spare the energy and I’m not going out anyway.
I don’t usually bother getting dressed on days when I’m not going out. It takes too much energy that I need to look after myself and my baby, so I just wear a dressing gown, which is painful to put on but once it’s on, it’s the most comfortable item of clothing I have as it places no pressure on my painful joints. Clothing is often uncomfortable for me and finding things that are easy to put on but don’t look like old ladies things is quite hard. I tend to wear soft loose yoga trousers and t-shirts when I do have to dress as they are easy to put on and pull down when I go to the toilet.
Trousers with buttons and zips are hard for my hands to undo when they are feeling particularly stiff and painful, so you don’t see me wearing jeans anymore! Undoing them takes so long, I risk not getting them undone in time, as EDS has always caused me to have a weak bladder, even when I was a child. So when I need to go, it becomes urgent very quickly.
Sitting on the toilet, I tend to cross my arms and hunch over to rest my upper body on my legs, to reduce the strain on my neck and spine. Twisting to get toilet paper causes pain in my side and shoulder. Pushing the flush button causes pain in my thumb and up into my wrist. Sometimes, just moving a part of my body makes a blood vessel burst open and cause pain, swelling and bruising;
This is my hand after I’d just moved it whilst sat on my sofa using my laptop. I felt a sharp pain, looked down and straight away it started swelling and bruising. This can happen quite often on various parts of my body, but especially my hands and toes. The pain and bruising will then last for a couple of days.
I don’t always brush my teeth in the morning if I am having a really bad day, as it takes extra energy and standing up for any length of time often makes me feel light-headed. I sometimes have to brush them by sitting on the toilet lid so I’m not standing up.
I take my baby downstairs by getting him to walk to the top of the stairs, sitting down, putting him on my lap and bumping down the stairs on my bottom. It makes my knees and hips hurt, but that’s still less painful than if I carried him downstairs in my arms, which I cannot do now he is heavier without causing considerable pain, and I worry about lightheadedness coming on and risking losing my balance and falling with him in my arms.
I sit on the sofa and often prop my head up on a cushion to minimise strain on my neck, to reduce the chance of a migraine, which are frequent and extremely debilitating. I often rest my arms on cushions too as they constantly ache.
Getting up off the sofa is painful and difficult and I have to use my elbows to push and wriggle myself forward to the edge before I can get up.
If baby needs a feed, I get him to climb up as much as he can to minimise the strain on my arms. If he can’t do it all, I have to grab him under the arms and drag him the rest of the way. Feeding requires several cushions to prop up my arms as they are painful holding him.
We have a bed in our lounge set up so I can lay down and rest with him when he is napping. He bedshares with us to minimise the effort and strain on me of having to get up to him in the night to feed him.
Breakfast is usually cereal as it’s quick to prepare and I can sit down to eat it anywhere if I get light headed and feel faint. Chewing hurts my jaw joint and makes the back of my head throb. When I am on my own at home, I usually have food that requires minimal energy to prepare, so cereal for breakfast, crackers and crisps, and apple for lunch. Dinners are often easy things that can be thrown in the oven and left to cook themselves, as I sometimes feel well enough to quickly throw pies or chicken portions in there before needing to sit down again. My other half has to do most of the proper cooking now though, and chops any fresh veg we need when he gets home from work, or I sometimes get my older children to do them.
I have given up ALL my hobbies – I used to do cross stitch, but my hands and neck are too tired and achy for that now. I don’t read as much anymore as I often find it hard to focus and concentrate with the EDS-related brain fog. I spend my days either lying on the bed in the lounge or sitting on the sofa with my head and arms propped up with cushions, supervising/entertaining my toddler as best I can and where possible, keeping my brain active watching documentaries, and online learning videos, or working on my laptop. Despite my physical challenges at the moment, I am still determined to use my knowledge and try to earn money in any way I can. So I am building a website where I can sell online courses to improve peoples’ lives. I am a passionate believer in education and everyone making the most of their potential, so I ‘walk my talk’ by still doing what I can to further my mission whenever physically possible. I have even worked laying on the bed in my lounge with my baby breastfeeding to sleep next to me and my arm supported with a cushion so I can carry on typing one-handed!
On good days I still try to work on my website and I try to message people on Facebook as I no longer have the energy to meet up with them. I don’t speak to people on the phone if I can help it. Not even my sister, who also has EDS. My brain has become quite slow at times to take in verbal information, so I prefer all my communication to be in writing so I can go back and reread what has been said. Talking takes a lot of energy too, so I save as much energy as I can for caring for my family and getting through the day. Socialising has all stopped except for my sister who sometimes comes over when she feels well enough. She understands if I have to lie down whilst chatting, but I feel too embarrassed to do that in front of friends so I just don’t invite anyone round.
Ian heated up some stew for our lunch.
15.20 – noticed neck aching and migraine starting, took 2 paracetamols with caffeine, these took about 30 minutes to take effect but did clear the pain somewhat and stopped it getting worse.
Ian offered me a cup of tea and a chocolate for supper but the neck pain was making me feel sick so I declined.
I get overheating episodes or feel the cold more than normal, as EDS often causes dysautonomia, resulting in the inability to regulate autonomic systems, including body temperature. I can go from so freezing cold I am bundled up under several blankets in my lounge, to VERY suddenly needing the window opened as I am overheating so badly I feel like I can’t breathe and am going to pass out.
Woke up feeling sick and with stomach pain. Sometimes I feel sick when I am hungry so I probably just need to eat. I have to crawl around a lot on my bad days as standing up hurts more joints and causes too much lightheadedness. My knee joints are getting painful as a result and the skin is very dry and cracked.
Coughed this morning due to my chest infection and my chest muscles in my left side hurt, and I also subluxated a rib. I usually fix this by wriggling around rotating my side and rubbing it until it pops back into place.
Breathing in causes pain across my upper back, just below my shoulders.
I prepared B’s cereal and made a cup of coffee for me. Lifting the kettle is painful on my hand and finger joints so I minimise the pain by only filling it with just enough water. Pouring the milk from the bottle causes pain in my hands and in my upper arm due to the strain of the weight on my muscles. Carrying the full cup to the table hurts my hand and finger joints. Lifting the cup to drink from hurts my hand and my shoulder. Tipping my head back to drink as the liquid gets lower hurts my neck.
Feeling in too much pain as yet to make myself breakfast so I take my supplements (opening the flip-top tubs causes pain in my thumbs, the twist tops are actually easier) whilst drinking my drink, hoping the drink will ease the hunger sickness in time for the paracetamols to work so I feel in less pain and able to stand a little in order to make breakfast for me. One of the supplements gets stuck, causing burning pain in my throat. I need to eat something to push it down but still being in pain means I just grab a handful of dry cornflakes from the box on the table from when I got B his breakfast. I take a sip of coffee to wash that down and then one of my overheating episodes starts. I feel heat whooshing through me and the sweat starts to rise. I feel a desperate need to tear off my own skin, can’t breathe properly, and feel stifled and almost panicky as I can’t escape my own body. I have to open the back door and sit in the doorway to cool myself down and feel more comfortable.
Sitting back down at the table I look at the mess in the kitchen. Washing up that didn’t fit into last night’s dishwasher load is piled up on the worktop. It looks awful. The dishwasher needs emptying and refilling but I haven’t even managed to have any breakfast yet, so I have to ignore the awful guilt I feel about not doing it yet, and leave it. Maybe I’ll feel well enough after breakfast, when I feel well enough to have THAT…
I suddenly notice that our cat with special needs has peed on the kitchen floor. She was accidentally shut in here last night. I desperately want to clean it up but now B is crying in his high chair and he is the higher priority. I need to clean him up and get him sorted first, with pain, and having had no breakfast yet.
As I’m cleaning him up, he does the baby sign for milk. So now I have to add feeding him to the list of tasks I must do before I’ve even eaten….
I painfully lift him out of the high chair and put him down on the floor, steering him away from the direction of the cat pee! We walk to the lounge and I figure maybe if I can distract him with something on TV he’ll stop wanting milk for enough time for me to get some breakfast. I feel guilty using the TV as a babysitter but if I’m going to do a half decent job of keeping my energy levels up enough to care for him all day, I need to eat. I feel frustrated with how this condition has brought it down to a toss-up between caring for his needs or mine, especially when in order to care for his needs I HAVE to care for mine.
I put something on TV and by the time I have walked into the kitchen, he has joined me again. He opens the under sink cupboard and gets out the feather duster he likes playing with. At least it keeps him happy and distracted from wanting milk whilst I make my breakfast.
Today, I have a smoothie. I usually only manage to have cereal but have also noticed it makes me even more tired, probably an intolerance to grains or something, so if I feel up to it, I try to make something healthier. Bananas are easy to peel and throw in the food processor. Reaching up in the cupboard for the cocoa powder is painful on my shoulder joint and reaching up with my arms triggers another episode of palpitations and overheating (I must make sure everyone knows to put it on a lower shelf!), and spooning out the tahini is painful on my thumb. Twisting the on button of the food processor is painful on my thumb. I manage to make another drink too.
But at least breakfast is finally made. Only an hour and a half after we first woke up!
As B has already finished his breakfast, and because the kitchen still needs cleaning up so I don’t want him playing in there, I have to take my breakfast into the lounge and sit on the sofa. But as soon as I sit down that will be his cue to want milk too. So I have to figure out how I’m going to cope with that too. I can’t carry the food processor bowl (scraping it out and putting it into a proper serving container wastes too much valuable energy and causes pain that is unnecessary – I am reduced to only those tasks that are absolutely necessary in order to survive and care for my family) and the cup in one trip, as it hurts my wrist to pick it up with one hand, risking dropping it and spilling everything that’s taken so much effort to make in the first place! So I will have to make 2 trips, which annoys me as that’s more wasted painful steps and energy just to get my breakfast. I sit down and rest after carrying the food processor bowl into the lounge and decide to leave the drink. It’s not 100% necessary right now and maybe eating the food will give me more energy so I can more easily carry it.
It’s now 8.20 and B is still in his night nappy, we’ve been awake for 2 hours, I’m not fed, not dressed, the kitchen is still a total mess. I feel such a failure at all this sometimes, but feeling negative isn’t going to improve anything and probably just make me feel worse so I try not to think about what a shit job I’m doing of just living and focus on the fact that at least we’re all still alive…
I decide to sit on the bed in the lounge. B can’t climb up there so it buys me the 11 minutes (yes, I timed it!) I need to shovel my breakfast in as quickly as I can! It makes my arm and shoulder ache like hell to not rest between each spoonful, but it’s a price I have to pay to get nutrition into me whilst caring for a baby too!
I leave the bowl and spoon on the bed as it’s out of reach of B and I’m not wasting valuable energy or steps taking it out to the kitchen unless I need to go for other reasons. I still have a drink waiting in the kitchen, but once I’ve changed B’s nappy, I’ll have 3 reasons for a journey, which makes it less wasteful on my limited resources. It’s a long time until Dom, my first arrival home to be able to help me, will be back. He gets home about 4.10. It’s now 8.37….
B’s nappy is changed on the floor. It’s hard for me to get down there but even more strain and pain to lift him up somewhere so it’s the lesser of 2 evils! It’s so hard when he refuses and runs away though. It takes me pain and energy to get down on the floor and when he runs away, I potentially have to get back up again and retrieve him. With my other 2 children, I’d have turned this into a fun game and chased him around the room giggling! Now, there’s so little energy for fun and I hate that. I need to get the practical stuff done in an efficient manner so it minimises the pain I feel and the energy I use. Because being in constant pain can make me irritable and grumpy, and I have to work so hard to stay positive and cheerful, that takes more valuable energy. He’s just a little baby, he shouldn’t have to pay the price of having me being irritable with him just because I’m in pain. It’s not fair. Nothing about this condition is fair though, so I just have to suck it up and get on with it as I usually do.
I put out the nappy mat and get the nappy and washable wipes tub out too so everything is within reach. I call B who is across the room and try to get him to come over. He’s busy playing and doesn’t want to stop for something he doesn’t like having done anyway. I sit and wait, resting my head on the sofa as my neck is aching, and eventually, he wanders over for a cuddle. I put my arms around him and as I snuggle him I gently lower him to the mat. It’s the easiest way to get him laid down.
I used to be a staunch washable nappy user. I don’t like disposables. But this condition doesn’t allow you to have principles! I’ve had to compromise and mix disposables with washables. Washables need changing more frequently so on days when I am in more pain, feeling more fatigued, and am on my own, I use disposables. Such a waste of money, especially when I can’t work like I used to, to earn money to pay for them, so it eats into our weekly budget. The effects of having a health condition are far-reaching!
I don’t change B’s sleepsuit and dress him. It takes too much energy and pain, and we’re not going anywhere so there’s no point when I need that energy for more essential activities like supervising him.
9am He finally gets his milk! My neck starts aching again and a migraine feels like it’s starting, plus I’m feeling sick and stomach cramps again. I prop my head and arms up with cushions to minimise the pain whilst I feed him.
Can’t take any drugs though as already taken some. I play some singing games whilst B is feeding. Moving my mouth to sing hurts my jaw. We have a little repertoire of favourites that we do during a feed. I try to do the hand movements but even pointing to the ceiling makes my upper arm ache. I feel so frustrated that even playing with my baby in an adapted way hurts.
9.40 B finishes and gets down to play. He wants to read a book. When I feel well enough, I like to take him to the library and get him some new ones, but that has been a few weeks ago since Ian took the last lot back and I haven’t felt up to going into town since then.
10.05 ish B does a poo, so another nappy change! I also push myself to clean up the cat pee at last and disinfect the floor around the area. My neck, shoulders and knees crackle like popping candy as I move to do it!
I also put my breakfast stuff in the dishwasher although bending down at the waist has my back screaming in pain at me, and my head throbbing. I tell them to shut up as I have stuff to do!
I notice as the day advances, I start to get my humour back a little bit and I can make a joke and laugh about my condition. It’s my usual coping strategy but sometimes even that is hard to crank up when I feel particularly pained or fatigued.
I push myself to get the dry washing off the rack so I can sort and fold it as an activity with B. I put the empty box on the kitchen floor, drop the clothes into it, then push it into the lounge with my foot when all the washing is in it, as it hurts my shoulders and neck to carry it. I then have to sit down on the sofa to rest as I’m feeling breathless. B enjoys pulling out all the clothes and throwing them over the floor so at least he’s happy and entertained! He brings me the Nemo flannel he uses in the bath and we play with it for a few minutes.
I have another overheating episode and desperately need the window open to cool me down, so I stand up to open it. Yet another wave of nausea, breathlessness and lightheadedness washes over me and I worry that I might faint as I’m opening the window so I have to lean over and rest on the windowsill, but at least the cooler air helps to ease it a little.
Thankfully B is still happy with the washing whilst this happens but when I sit down again he wants more milk. I’m sitting anyway so I might as well give him some!! At least he’s easy to supervise when he’s on my lap, and I know he is happy when he’s having his milk.
It’s now 10.48….
B has some more milk and I sing to him whilst he’s feeding. He’s been awake since 6, which means so have I, and part of me guiltily hopes he’ll have his nap soon so I can sleep too, as I’m already totally exhausted.
I need to blow my nose, so painfully reach for the toilet roll on the table next to the sofa whilst B is plugged into me. The pressure in my sinuses from blowing causes my head to throb. B pops off and whilst I’m blowing my nose, grabs the toilet roll and starts shredding it off. I feel too exhausted to stop him. The lounge now looks like this:
My slippers are abandoned where I took them off when I was overheating.
The TV is now back on too; the worst of it is, I know how the research about TV watching for under 2s says it has detrimental effects on their brain development. I never let my other 2 children watch TV when they were this little. But this bloody condition doesn’t give a shit about my baby’s brain development, even though I know far more than the average parent and would love to feel well enough to do with B even a fraction of what I did with my other 2 children. I feel guilty and like a really crappy parent on my bad days, and I have to carefully transform my thoughts to tell me I am doing my absolute best with the situation as it is right now, which is all any of us can do in life.
Anybody who has ever parented a toddler knows how much energy they take to be supervised and entertained. I have to keep so much energy in reserve to be able to do this necessary supervision that I daren’t spend any of it on doing high expenditure activities with him that aren’t directly related to keeping him safe.
I need the toilet (and thank goodness for having a downstairs loo!) so get him to come with me as it’s safer than leaving him alone. Walking there brings on another overheating episode and another wave of nausea and lightheadedness. I’m relieved to sit down, even if it’s just on the loo!
When I’ve finished, and I stand up and wash my hands, I still feel nauseous and dizzy. B has pulled a load of toilet roll off by the time I’ve finished. I feel too crap to care. It’s only clean toilet roll. I’ll use it up next time I go.
Getting him to leave the toilet and return to the lounge is challenging. He wants to play in there but I need to sit down again. I like to find a win-win in every situation if I can, so I sit on the hall floor whilst he plays then, because it’s easier than standing up again, crawl back into the lounge on my hands and knees when he’s ready to go back in.
It’s now 11.26…
I feel so awful I sit on the bed and rest my head on the end. B starts climbing over the back of the sofa however and looks in danger of falling off so I ease myself back up to be ready to move him. I call him to be careful and he gets down, which I’m relieved about as it saves me getting up. I decide to lay on the bean bag on the floor so I can engage with him more as I’m on his level then. We can play better that way and I can still hopefully rest – another win-win!
But first, we have to clear space on the floor…
Getting down off the bed stimulates yet another wave of nausea, a quite strong one this time that I have to stop what I’m doing and look for a container to be sick in if necessary. Once I have a receptacle close enough at hand, I push through the nausea to start putting the clothes back in the box. During this, I start coughing and cough up some phlegm (yuk, we call it!). Thanks to B’s handiwork with the toilet paper earlier there is some to hand I can grab to spit it into – there are always blessings if you look hard enough- which saved me getting up to get the roll, more energy saved, and more pain not experienced!
When enough of the floor is cleared I lay down on the beanbag. I feel yet another wave of overheating, FGS.
Then I notice B has a snotty nose, which means painfully sitting up again to reach more tissue. Or, joy of joys, there is a washable wipe from the laundry within reach!!!
I wipe the snot then feel completely exhausted and my whole left side aches from the effort of reaching up my arm. I start feeling breathless too, even though I’m lying down and feel like I’m gasping for air. B kindly decides that this is the moment to drop a heavy toy on my nose! One of the negatives of lying on the floor is being in the toddler drop-zone!!
11.52 and I need the toilet AGAIN! Bloody weak bladder! This is why I try not to drink much – it makes me need the toilet more and that’s more effort to get up and go! If I drank the recommended 2 litres of water a day, I’d either need catheterising or just sit on a commode all day!!
As it’s almost 12, I decide to give B some lunch – maybe he’s too hungry to nap. Thankfully he has some leftover fish pie in the fridge from dinner last night. He is usually happy to eat cold leftovers so I give him it straight from the fridge. Lifting him into the high chair is painful but I manage because I have to. I also remember that I was supposed to email Dom’s teacher and make a mental note to do it (which isn’t worth the paper it’s written on as I promptly forget again [sigh…]!)
He doesn’t eat much and neither do I, but I’m glad of the respite from supervising him for a short while, as I know he’s safe and not going to be hurt whilst he’s strapped into the high chair. On my really bad days, I guiltily wish I could keep him in there all day, so I can rest more, but I couldn’t do that to him, and he wouldn’t let me anyway! He’s a free-range, strong, independent little boy and he likes to explore and learn. It’s harder on me to cope with him having free-run, but it wasn’t his choice to be born to someone like me, so I refuse to stunt his growth and development just to reduce my physical suffering.
And now he’s fussing so I guess that means lunch is over… 😕😒
12.45 Toilet again 😠
12.50 gave B another feed.
13.04 thank GOD he’s asleep, now I can sleep too…
15.39 Woken by Dom arriving home from school 😲😲 That time went quickly and it took me a while to drop off to sleep too as I felt quite agitated because I felt unwell, and my neck felt painful so I couldn’t get comfortable.
Actually felt the best I’ve felt all day when I woke up though. Went to the toilet with minimal pain and breathlessness, and was able to make a cup of tea without too much pain too – YAY!
15.56 – 16.16 managed to finally finish sorting the washing! Able to sit upright on the floor and got it all done 😊😊 Dom half kept B occupied whilst I was doing it.
Then I sat and had my cup of tea with a chocolate biscuit as my nausea had subsided at last.
Sat and read my emails on my phone whilst drinking my tea then at 16.40 actually felt well enough to make dinner, which makes me feel really happy as all I want to do is to provide and care for my family properly. Only going to put some rice and frozen veg onto boil and some chicken portions in the oven as that’s not too tiring and doesn’t involve standing for long. My happiness doesn’t last long though! Opening packets and tins hurts my fingers and wrists. Pressing the ignition button on the hob causes pain in my thumb. I bend down to get the frozen veg out of the freezer and when I stand up, I get all light headed and breathless AGAIN, and have to lean on the worktop to recover. This isn’t enough though, so I have to sit down at the table instead. I’ve also started to feel shaky again. I’m so bloody sick and tired of feeling sick and tired 😠😠😠😠😠
Dom is watching TV in the lounge, and B is in the kitchen with me, emptying out the kitchen cupboards and playing with what he finds there.
17.06 – Alex home. He says hello, dumps his bags in the hall, and I ask him how his day has gone. “Fine”, and then he immediately disappears upstairs to his room. Won’t be seeing him again now until dinner is ready…
I realise I still haven’t emailed Dom’s teacher and add it as a task in my phone this time so I WON’T forget to do it.
I felt well enough to try to dish up dinner but feel lightheaded and faint during it, and lose balance, stumbling to the right. I manage to grab hold of the worktop to steady myself and stop myself falling.
Dinner is tiring and I eat one handed with a fork in my right hand as I feel too tired to use both AND hold my head up. I prop my head up with my left hand. I put my cutlery on Alex’s plate at the end as mine has some bits for the cats to eat and when he gets up I ask him to put the stuff in the dishwasher. He apparently resents putting MY stuff in there… Always nice to know that your teenage children care so much about you, even when you’re ill 😔
B needs a bath. I sit down on the stairs and bump myself up them on my bottom. I have to sit on the floor to run it as I’m feeling too tired to stand, and I rest my head on the side whilst it fills as my neck is aching so much again. Ian brings B upstairs and undresses him, and lifts him into the bath. I wash B’s hair sitting on the floor too, with one hand, resting on the edge of the bath as I feel breathless and lightheaded again. Ian lifts him out of the bath and carries him downstairs again. I follow in my own time as I’m very slow!
I push myself and crawl around on the floor clearing up the toys whilst Ian dries and dresses B in a clean sleepsuit, because I hate feeling useless and doing nothing to help. I then sit down to feed B some milk.
Ian had made me a cup of tea so when I sat down to feed B, I drank it. Even with resting my elbow on the arm of the sofa, as I lifted the cup, I had pain in my wrist and in my upper arm and shoulder, and the longer I held the cup, the more it hurt to the point that I actually felt my heart rate speed up to cope with it!!
When Ian took over settling B I had a bath to try and ease some of the pain I felt. It was uncomfortable to take my pyjama top off as my shoulders popped, but it was quick and after a quick rotation, it eased off.
19.50 got in the bath
I laid in the bath looking up at the mould on the ceiling and feel guilt and shame that I can no longer clean it off. At one time I could have done that AND plumbed in the bath I’m lying in!!!
To wash my hair, I sink down into the water so my hair is submerged and get it wet. Then I can slide back up again by pulling on the handles so I can apply shampoo. Flipping the tops open hurts my thumbs though. Reaching up to shampoo my hair hurts my shoulders and makes my upper arms ache so I use one arm at a time and swap sides when that one starts aching too much. Then I slide down and submerge again to rinse, and repeat the same process with conditioner. I’ve rinsed my hair in skanky bath water, it’s true, but at least it’s cleaner than it WAS, and I feel better psychologically for having at least washed the grease off!
20.40 finish. To get out I have to roll over onto my front, pushing up with my right hand (which hurts my wrist joint), to be able to sit up, then use the grab rail to pull myself up. Sometimes I have to ask Ian for help, which is why I only have baths in the evenings now, as that’s when he’s available. Drying myself hurts my wrists as I press the towel against my body, and shoulders as I reach around myself. I climb out by bending down and holding onto the side. My right ankle pops as I put my weight on it. Putting my pyjama top on makes my wrists hurt as I pull the sleeves into position, and my shoulders hurt as I pull it over my head. Putting my dressing gown on causes my right wrist to crack.
I tell Dom it’s bedtime. He still likes to have snuggles before going to sleep but these days he snuggles with me in our bed then gets into his own. It strikes me for the first time in nearly 14 years that one of my reasons for co-sleeping with my babies is just how much less pain it causes me to lie down next to them in our double bed and feed them to sleep rather than having to hold their weight in my arms, rocking them, lifting them into a cot etc. I had intuitively chosen this as the way for me to parent, without even being consciously aware of what a coping strategy it is for my joints!
My rib muscles are hurting as I recline on the bed to wait for Dom. I then forgot to document everything from here on!
It’s been an exhausting and painful couple of days, as usual, but the second day was a positive one too as I actually got some things done. Still, it’s very eye-opening becoming so aware of just how much I have to push myself just to get through each day and the thoughts I have, about myself as a Mum and comparing myself negatively to how I was with my older 2 children, and how I used to be able to do so much.
I remember reading something once that was a quick guide to tell whether you were treating yourself badly or not: all you have to do is ask yourself if you would speak the same words you are speaking to yourself to a 4-year-old child. If it would sound unkind to say these words to a child, then you are probably being too hard on yourself!
This exercise has really given me greater awareness in just how hard on myself I am, mentally and emotionally, and that if anyone ELSE was dealing with all these physical challenges (even without caring for a toddler too), I would be a lot kinder to them.
It’s also important to my children to model the same care and compassion I would want THEM to treat themselves with if they were unwell, particularly as they have the same condition as I do.