Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: Essential Living Aids

For Anyone Who Uses The Family Bathroom…

…I feel I should explain the notice above the lock on the door.

It was an idea that came about from a friend a few weeks ago, after many close calls of me almost falling and the odd false alarm where my family thought they’d heard me calling for help but I’d been perfectly all right.

You see one night when I wasn’t particularly steady on my feet (well less steady than usual, that is) I decided, since I was in need of one, I’d have a shower. To be on the safe side I told my family I wouldn’t lock the door, ‘just in case’.

At this point I should point out the lock on the bathroom door is one of those which, if necessary, can be unlocked from the outside for such eventualities but not locking it means there’s less delay.

Anyway I went in the bathroom, got in the shower and a few minutes later heard a banging noise over the sound of the shower. I opened the shower door to find my Mum trying to open the locked bathroom door (thinking it was unlocked like I’d said it would be) because she thought I’d called for help. Dad was trying to find a coin or screwdriver to undo the lock with when I unlocked it, saying I hadn’t called and was fine. But I felt guilty for sparking such a panic, and for saying I’d leave the door unlocked but automatically locking it when I got in the bathroom.

That night I told the M.E. community on social media about this and one friend suggested putting a notice on the door saying ‘Do Not Lock’. Obviously being the only bathroom in the house we thought this might be a little non-specific and people would perhaps think they weren’t allowed to lock the door either. However the idea was in the right place and so the laminated piece of paper, white-tacked to the bathroom door was born.

The sign above the lock on the bathroom door

It reads “CLARE DO NOT LOCK WHEN SHOWERING OR DRESSING!!” It was made that specific so in times of very poor cognitive function I know I can lock the door at other times. I’m only really in danger of falling or getting into difficulty when showering or getting dressed, and I always make sure everyone in the house knows I’m in the bathroom at those times. It’s slightly odd announcing to the house that I’m going to get dressed or have a shower but right now it’s necessary; it also means they’re on alert for me calling should I find I can’t manage myself or get into difficulty.

The best bit about this notice is IT WORKS. Since putting it up there have been a number of times I’ve gone in the bathroom to get dressed or have a shower and I’ve automatically locked the door, then read the notice and unlocked it ‘just in case’. Fortunately there haven’t been any times when I’ve had to call for help because of a fall, however I do frequently call for help with drying the lower half of my legs and getting my trousers on. It’s just one of those things I can’t always manage by myself right now.

As well as explaining the point of this notice to anyone who thinks it slightly odd, I want this post to serve as a thank you to the wonderful person who suggested the idea. And if anyone else has similar problems perhaps this idea could help you too.

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Essential Aids to Sleeping

As a follow up to My Essential Aids to Living I thought I’d do a post on the things I use to help me sleep. Don’t worry I am still working on a post with more of my essential living aids but in coming up with that I realised I use a lot of things to help me sleep at night!

Eye Mask.

This is a fairly recent addition to my aids to sleeping but it has proved brilliant. Since changing my blind/curtain combination I’d been waking up early in the morning whenever it started getting light because of a gap around the bound that my curtains do not block. My eye mask solves that. It’s comfortable to sleep in for the most part, although I do struggle with it on very hot summer nights. Mine came from a pound shop as I don’t want to spend a fortune only to find I didn’t get on with it. I’ll be looking out to see if there’s one in a different material in the future but for now the one suits me fine.

Multiple Pillows.

It sounds stupid but I sleep propped up on 3 pillows and a V-pillow most nights as I find this supports me well. If I have a bad cold that increases to 4 pillows plus the V-pillow. I also sleep with a pillow beside me to help prop me on my side and I have a cushion between my knees. It’s taken me months, maybe years to learn that this is the best solution for me. However it does mean there isn’t much space left in my little single bed!

Meditations/ Deep Breathing Exercises.

I have a number of meditation audios and apps designed to send you into a deep sleep. For the most part they work. However I do find it a struggle to listen to them; I have a pillow speaker but that isn’t exactly comfy to lie on, and depending on where I lay my head the sound can be muffled and very quiet. So now I mostly use deep breathing exercises or follow one of the meditations I’ve used before if I can remember it easily. I find focusing on my breathing and the movement of doing so can send me off to sleep when I’m struggling to get my mind to switch off. And of course it’s an option when the pain is bad since focusing on breathing moves my attention away from focusing on the pain.

Memory Foam Mattress.

I was sceptical this would help me sleep, especially in hot weather but I honestly don’t know how I’d sleep on any other mattress now! I’d had a memory foam mattress topper prior to getting the mattress but when I needed a new bed it was decided I might as well get a memory foam mattress and I have to admit it was one of the best decisions ever made. Not only is it more comfortable but I find it more supportive and it seems to have reduced the amount of pain and stiffness I wake up with in the morning.

A Selection of Duvets and Blankets.

Currently I have a single light summer duvet on my bed because of the recent hot weather here in England. But I find I sometimes wake up frozen thanks to my poor temperature control, so I keep a selection of blankets on the floor next to the bed which I can grab in the night and put over the duvet if necessary. Layers like that mean I can easily remove them if I then become too hot as well.
During the winter months I have a thick double duvet on my bed. It may seem strange having a double duvet on a single bed but I’ve found it really beneficial because it drapes so much further down the side of the bed it protects me from any draughts. Again this reduces my pain levels and prevents me from getting any additional aches and pains from sleeping in draught!

No Screen Time Before Bed.

This is one tip which I don’t always abide by but when I do I find it really helps me get a better night’s sleep. Turning my phone onto silent and not using it or my tablet or laptop for an hour or so before I go to bed makes a big difference to the amount and quality of sleep I get. I particularly noticed this when I was quite ill and struggling to use my phone, and also fairly recently when we had no internet; no internet meant no social media and as a result I used my phone considerably less. I slept much better although it didn’t make too much difference to my energy levels I felt better knowing I’d had more sleep.

A Cup of Water on the Bedside Table.

This has been routine for me since I was a kid, but I do find it helps me at night now. I often wake up with a very dry mouth and need a drink but if I get up and get one I struggle to go off to sleep again. Having a cup of water on my bedside table solves this, and also means I don’t have to struggle down the stairs in the night. I just have to prop myself up in bed and have a drink, then I can happily doze off again.

I hope this post has been informative for all and helpful to some. I’m sure I’ve forgotten something off this post but having spent days trying to work out what it is I’ve decided to leave it as it is and if I think of something else I will be sure to post it later on!

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My Essential Aids to Living

Well today is my 9th ME-versary and I didn’t know how to mark it. Looking back on the year things have improved drastically as I said in yesterday’s post. So on today’s ME-versary I’m feeling much more positive than last. After 9 years of being ill, I’ve nothing to really grumble about – I’m moving in the right direction – and no one wants to read a blog post full of moans anyway!

Bearing this in mind I have decided on a post I hope will be useful to some, and give an insight into my life for others. So without further ado I present to you…My Essential Aids to Living. A post full of all the things I need in order to have a bit of independence and get out of the house. Some are shop-bought, others are ingenious ideas but they all help me in some way.

The Perching Stool

My perching stool post washing up.

For any task that requires standing for a length of time I often require my perching stool. Ironing, washing up, preparing food, sometimes even just making a drink can involve me needing to have something to sit on as it doesn’t take as much energy as standing. Besides there are occasions when my legs absolutely refuse to support me! I recently discovered  when washing up or preparing food it’s much easier to have an open cupboard in front of me rather than wedging my knees against the cupboard door!

 

The Shower Stool
My shower stool in the shower.
Another vital aid is my shower stool. Without it showers would be a lot more difficult, if not impossible at times. Again it’s needed to save energy, since sitting takes less energy then standing and also because my legs often give up on me after a short while standing and falling in the shower is not on my ‘to-do’ list! This stool is not just used in the shower though, I often sit on it when washing and dressing as well as when I clean my teeth. It’s been a life-saver for me on a number of occasions especially in the evenings when I am at my worse.

Chunky Handled Cutlery

Our polka dot chunky handled cutlery.
This is a fairly recent discovery of mine. I find chunky handled cutlery much easier to grip and therefore use than the smaller handled stuff most of my family used to prefer (I’m slowly converting them!). It means the occasions when I have to ask my parents to cut my food up have become less frequent. The number of times I drop the cutlery I’m using whilst eating has also dropped dramatically. It may be a small thing but it’s made a huge difference to my life!

One-Cup Hot Water Dispenser 

My one-cup hot water dispenser.

 

I must have had my one-cup hot water dispenser for almost two years now. I got one when it became very difficult for me to lift a kettle. I’d often come close to dropping it, my confidence in being able to make a hot drink dropped so low I wouldn’t attempt when there was no one else in the house. As a result we got me this little beauty. I can safely lift a jug of cold water (it’s less dangerous if I drop or spill that), pour it in and let the dispenser do its magic! I have had a few near misses when I’ve forgotten to put the cup under the nozzle until the last minute but nothing disastrous yet and it gives me a small piece of my independence back.

Large Handled Mugs

My large handled mugs for cold drinks.

Something I discovered early on in my illness is that glasses were more dangerous than anything else – they just slip through my fingers and I end up very wet! So we’ve had to invest in a number of mugs with suitable sized handles; not always an easy task when buying a mug without going to a store! But after a number of years we now have a collection of useable mugs for me. I’ve got some large mugs – often described as latte mugs I believe – which I use for cold drinks.

My large handled mugs for hot drinks.

I always have one of these filled with a soft drink whether it be day or night as it helps keep the dizziness at bay as well as soothes my constantly sore throat.The ‘normal’ sized mugs are used for any hot drinks I have throughout the day. The advantage of having this large handle is I can have my hand around the mug (if the drink is cool enough of course!) and my fingers through the handle meaning it’s almost impossible to drop the mug completely and I’m less likely to spill my drink down me.

Jumbo Foam Curlers on my Toothbrush Handle
My toothbrush complete with foam curlers.
What can I say?! I was having trouble keeping a grip on my toothbrush for months. My hygienist and I were coming up with weird and wonderful ideas (including pipe insulation and drilling a hole through a tennis ball) when I saw this posted on a chronic illness page so thought I’d give it a try. It really has made an amazing difference to my ability to hold the toothbrush and clean my teeth, something I really do my best to take care of. It may look daft and I now require a pot just for my toothbrush as it won’t stand in the pot with my family’s due to it’s chunky size but it works! It’s made my life that little bit easier which makes a big difference.
Crutches
My crutches for downstairs and going out.

I have a potentially strange setup with my crutches. I own two pairs; one provided by the NHS, the other bought off the internet. I’m betting you can tell the difference from my pictures! Currently I have one pair, my posh web-bought pair, at the bottom of the stairs. These are used around the house and garden when necessary as well as when I go out. This pair has some comfy grips on the handles which reduces the pain of using them for a lengthy period. They are also have an open cuff meaning wearing a thick coat isn’t a problem!

At the top of the stairs.
In my room.

I keep my NHS pair upstairs. When I’m very bad they’ll both be at the top of the stairs if I’m downstairs, or in my room with me if I’m up there. Currently because I’m not too bad I have one at the top of the stairs and one in my room. This means if I get up in the morning and find my legs aren’t great I have one with me for support or if I get upstairs and find I need a bit of support there’s one there to grab too. If at any time I’m going upstairs and feel I’ll need both when I reach the top, I ask my parents to get the one from my room and put it at the top of the stairs with it’s partner! My NHS pair also have pipe insulation and sweatbands on the handles so they don’t hurt my hands quite as much; I used to get horribly sore and blistered hands from using them so we had to come up with a solution for that and of course pipe insulation was the obvious answer!

The Folding Walking Stick

Folded,
Upright.

Whenever I go out without my crutches (a very rare occasion right now) I carry a folding walking stick in my handbag, ‘just in case’. It has it’s own plastic bag to keep it folded up and any dirt out of my bag! However this is starting to fall to pieces and I will have to see about getting a new bag, maybe even making one. This stick has been a regular in my handbag since around 2009, when I was at my best but still occasionally needed some support when walking. The best part of this stick in my opinion is that not only does it fold up but it has a jazzy floral design AND gives me an excuse for a large handbag! In recent years it has had a bit of a break since I’ve required my crutches more, so it’s been left resting in a handbag under my bed.

 

The Helping Hands
My Posh One
I have two helping hands but only my ‘posh’ one is pictured as this one provides me with much help than the cheaper one I first bought. Although that one is still kept and is in my room should I need it upstairs! My ‘posh’ helping hand has been a vital help in reaching things on the floor and sometimes even getting my trousers on! It means I’m less reliant on my Mum when I find myself too stiff and in too much pain to bend and dress my bottom half. However it really isn’t much use for getting socks on! Believe me I’ve tried in the past without success!! The only problem is my family use it for all other sorts of things and I often can’t find it because they’ve used it somewhere else and not put it back where I left it!
 

The Dark Sunglasses

My dark glasses.

The must have accessory for any person with ME. For me it’s been a struggle to find any cheap sunglasses for this purpose – wearing glasses all the time and not being able to see without them I can’t just go out and buy any old sunglasses. While my eye sight is still changing each year I refuse to buy prescription sunglasses on top of the price of my glasses. So I have  two of this rather unstylish pair which fit over the top of my existing glasses; one lying around the house and another in my handbag, as you probably guessed! I find these help not only for the sunlight outdoors but sometimes for the sunlight indoors, the main lights and also the fluorescent lights many shops and doctors surgeries have. All of these hurt my eyes and can leave me with horrific headaches. I even use them when on my laptop or tablet whether I’m studying or just browsing the web!

The De-Tangler Brush
 
The brush fitted as a lid on the pot.
The brush and pot.
After hearing I was struggling with brushing the knots out of my hair my best friend picked this up for me. Designed with little ones in mind this de-tangler brush makes it a lot easier, and less painful to get the knots out of my hair. It seems to take the strain off my wrist allowing me to de-tangle my hair without causing an awful lot of wrist pain. I also seem to have less weakness when using this brush. Not only that but it comes with a storage pot for hairbands and clips! Being such a girl this really does come in handy!   

 

And not forgetting ‘Bob’ my Wheelchair

Meet ‘Bob’ with an extra cushion.

Yes I’ve named my wheelchair ‘Bob’! I figured since I rely on it so much to get out it might as well have a name and is often referred to as ‘Bob’ and as such a male! He is the best wheelchair I’ve had by far (I’ve had one other but used a total of 4 during my 9 years of M.E.) I can even manage to self-propel myself a little bit these days which gives me a little bit of independence in shops. Without ‘Bob’ I wouldn’t be able to get out much at all; I can just about make it up the road to the corner shop on crutches at the moment and even that takes requires a long rest afterwards!

‘Bob’ can even hold crutches!

 

We’ve even modified ‘Bob’ slightly, well made some additions so he can hold my crutches for me! It’s amazing what you can do with some pipe clips, velcro, scrap material and the tops of some old bunk bed posts! Thanks to my Dad’s innovation with that little lot my crutches can now be secured to the back of ‘Bob’ whilst I’m sitting in the chair meaning I don’t have to hold on to them as we go along! I don’t always take my crutches out with ‘Bob’ but when I do this modification has proved very useful! Particularly when shopping.
I realise this has become an extraordinarily long blog post, I’ve been working on it for a few weeks here and there so it’s not all been written in one lump. But this only covers the absolute essential living aids that get me through the days, weeks, months and in some cases years! There are other things which help and it’s not that these aren’t now an essential part of my life it’s just that mentioning everything would turn this into a colossus blog post I’m sure many of you wouldn’t have the time or energy to read. As it is this post is already long, (I’m sorry if it’s too long) but I hope it’s been useful to my spoonie readers and insightful for rest of you! All of these things have now become essential for me to live my life, without them I would be even more reliant on other people than I am now. A slice of independence when you suffer from a chronic illness like M.E can really mean a lot, probably more than most people imagine.

 

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Top Tips for Long Tutorials (or any tutorials really)

Anyone who follows me on Twitter will likely know that on Saturday April 19th I attended the final tutorial for B203. For most people this would be seen as a normal thing, just another appointment to make space for, nothing to be majorly proud of. But not for me. For me the fact I managed to get to the room, lasted for the duration (almost 6 hours) AND enjoyed myself was nothing short of a miracle. I hadn’t been to any tutorials since the first one in October and they were 3 hours long. So to say I am proud of myself is an understatement.

I learned a number of things that day and they weren’t all related to my course, however there was some really useful tips for revising for the exam! One major thing I learned is that not all ramps are wheelchair friendly; again we had a room at a hotel in Chelmsford (not the ballroom this time round tho!) Getting into the hotel wasn’t a problem, it was entering the allocated room which proved challenging. The ramp was at a 30-40 degree angle. Far too steep to get a wheelchair up or down without the occupant being flung from the chair!! This we learned the hard way with my Dad attempting to push me up or down the ramp, me ending up halfway out of the wheelchair before we realised that the ramp was too steep and the foot pedals of the wheelchair were getting caught. In the end Dad rolled the wheelchair up on it’s two back wheels (with me in it, of course!). But that shouldn’t be the case and that ramp should be less steep so the room is easily wheelchair accessible.

Anyway I thought I’d put together a list of things I did to help ensure I was able to last the day, as well as things I’ve thought of since that would have made coping that little bit easier:

Make sure your tutor is aware of your illness and how it affects you.

I’ve always made sure to be open about my M.E. to my tutor and fellow students on my Tutor Group Forum. This way there is less explaining to do if you have to leave early or have a break; in fact throughout my tutorial my tutor regularly checked if I was okay and asked if I needed a break!

If necessary go in your wheelchair.

Not only does it conserve energy on walking to the room but it also ensures you have a chair you know you can sit in for a long period – I don’t know about anyone else but I find certain chairs much more tiring to sit in than others. Taking my wheelchair means I know I can sit for a certain amount of time without too much problems.

Take cushions for the chair/wheelchair.

If these make your wheelchair more comfortable, or are likely to make the chair there more comfortable take a cushion (or two!). I only took one for my wheelchair and in hindsight I’d have been better with two or perhaps a different cushion to support my back for that length of time. 

Take some spare painkillers with you. 

You may end up looking a bit strange, popping pills mid-tutorial. But if it means you’ll be able to stay longer who cares?! Two and a half hours into my tutorial I found I needed some painkillers as my back was starting to ache from sitting up so I took some paracetamol which I generally always have stashed in my handbag. It meant I didn’t have to go home early. 

Take a packed lunch, drink and snacks.

While most people will probably pop out to get something to eat during the break, or take their lunch out to the cafe area (if available) I found it best staying put in the room with my own packed lunch. Not only did it mean I didn’t have to use energy moving to another part of the hotel, it was also quiet with no hustle and bustle so I was able to have a short rest as well. Some of my fellow students stayed at the beginning of break to keep me company and some came back once they’d got some lunch from local shops. But I was still able to get a short rest in between; this I think was quite vital to my ability to stay the whole time.

Bring some headphones for your smartphone or an MP3 player with you.

This is something I didn’t do on the day but wished I did. During the break I was alone in the room for 15-20 minutes while everyone else went out to get lunch etc. This time wasn’t unwelcome as it gave me time to rest with no noise but a relaxing track on my MP3 player would have been just as good (and may have made that time seem less long).

Only take the minimum amount of books needed.

Obviously the best thing to do is to check with your tutor what you are required to take, but then only take that – the more books to carry and organise, the more energy you’ll consume. So anything your tutor doesn’t think you’ll need, and you’re only taking ‘just in case’ leave at home! It’s taken me a couple of modules to realise it is not necessary to take the majority of my course books with me! I only take what my tutor says they plan to cover at that tutorial.

BUT…
Doing all this doesn’t mean you won’t suffer for attending the tutorial. It will hopefully minimise the effects. I’ve suffered more than I expected to but I always knew 6 hours was pushing my luck! However it was totally worth it as I got so many tips for my next assignment and for revising for the exam. 

That’s all I can think of for now, if there’s anything else I’ll be sure to revise this list! I hope they’re of help to anyone facing a tutorial with a chronic illness even if it isn’t M.E.

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