A Day In My Life...May 12th 2015

As I've done for M.E. Awareness Day the past two years, today I'm going to share what it's like to be me for the day.

Up until a few weeks ago this would have been a much more positive, less symptomatic account but unfortunately after receiving the news that my Nan had passed away my health took a nosedive so this account isn't what I was expecting to be writing:

I wake feeling unrefreshed, after about 9 hours sleep. My body feels heavy and almost everywhere hurts. I slowly sit up and wait a few moments before attempting to get out of bed; too fast and I feel faint. I gather together the things I expect I'll need downstairs for the day: clothes, my phone, a book, a blanket and often a cuddly toy friend into a bag and make my way downstairs leaning heavily on the hand rail for support.

I get my own breakfast, standing leaning on the worktop for support, then I get washed and dressed with the aid of a helping hand or parent to dress my lower half. After that I get on with a few hours study, currently this is done from the sofa when possible. I take regular breaks within this period as my concentration doesn't last for that entire time.

I get lunch in the same way as I got breakfast, before taking an hour or so rest, normally watching the Australian soaps on TV. I often spend the rest of the afternoon doing something which takes little energy but is productive; this could be putting photos in a scrapbook, planting seeds, blogging or knitting, it all depends on how I feel. 

Evenings are my worst time, my parents will cook me dinner which is eaten on the sofa, I'll get into my pyjamas often requiring the help of one of my parents to change my bottom half. I'll lay on the sofa reading a book, listening to music or play a game of cards with one of my parents.

Come ten o'clock it's time to head back up the stairs to bed. This is often a struggle, my legs are incredibly heavy and painful so lifting my feet onto each step is incredibly difficult. For this reason one of my parents has to help me up the stairs. I get into bed, write in my journal before trying to get comfortable and letting sleep claim me. 

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I can handle with no negative effects on my health. Anything more and I pay the next day.

As always it's taking some time to get used to needing so much help again. It's been a while since I've needed help getting showered and dressed and I am forever grateful to my parents for helping me out at times like this. I'm hoping things will pick up in the coming weeks and months, but for now I just need to cope with how things are and balance my activity levels in order to get myself improving again.

Some things haven't changed since last time though, so I shall quote from my post back then:

"...when people visit I always put on a brave face, an act so they don't see just how bad the ME is. I don't do this for my sake, but to protect them from the truth. There are some who see the 'real' me now but it's taken a few years for me to 'drop the act' for them. And if they themselves are having troubles or stresses the 'act' of being better than I am and not letting on how bad I really am comes back to protect them. I don't want to add to their worries."

Remember I'm spending today dressed as a Princess to raise money for Invest in ME a small charity funding vital biomedical research into M.E. If you can afford to sponsor me you can donate via text by texting PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!

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!

What you want and what you get....

Growing up I was always told:

"What you want and what you get are two different things"

I never realised how true this saying is. Not until I started living with M.E. Nowadays this saying sums up most of my life. I want to be healthy, lead a normal busy life. Instead I've got M.E. which doesn't care what I want, I have to do what it wants or else.

I've already done a post on my reality at 21 and I don't want this to become a repeat of that. Instead I want this post to be a more positive take on things. The way I try to live my life; focusing on the positives and developing from the negatives. I may not have all I want but I make the most of what I get. Some examples:

• I want an unlimited supply of energy. I get a very limited supply. But that means I prioritise what gets done; sometimes this means anything that can be done wearing pyjamas is done wearing pyjamas!

• I want a normal range of mobility. I get reduced mobility. So any aids I use have to be prettified like a fashion accessory. A patterned walking stick. Coloured parts of my crutches. Pretty cushions for my wheelchair. That kind of thing.

• I want to be completely independent. I get a little independence on my 'better' days. Small things can be done independently; thanks to a water dispenser I can make a hot drink myself, foam curlers on my toothbrush handle mean I can clean my teeth, a tangle teaser brush means I can brush my hair. This all varies from day to day but without things like that I'd have to rely on others to do these things and more for me. Independence means a lot to me. One day I'll be able to walk to the local shop on my own again.

• I want to spend time with a lot of friends. I get to spend a limited time with one friend at a time, generally in a quiet environment. But we always have fun. And then there's all the wonderful friends I'm in contact with constantly online, despite not having met in person.

Do you see what I mean about what I want and what I get being two different things? My list of wants extends far greater than that, and I'll grant you there are a few superficial things on that list but most of it, most of it is just everyday things people can do. Things that ME has taken away from me.

But saying that ME has also given me a lot of things. I've discovered things about myself I didn't know. Thanks to ME I'm stronger, wiser, more appreciative and probably more understanding than I would've have been without it. I've learned I'm strong enough to deal with whatever this illness throws at me, even if I don't feel it at the time. I do things that seemed impossible at a certain point in my life. I've become even more determined than I used to be. Determined not to let this illness beat me!

So I'm in a wheelchair, why can't I wear a dress?!

The weather is gorgeous and I'm going out. I've got the clothes picked, a lovely dress I've had in my wardrobe a while but no opportunity to wear. But I'm going to be using my wheelchair. Shouldn't be a problem should it? Wrong.

You see this dress sits above my knees. So to keep my modesty, not embarrass myself or give anybody a shock I need to sit with my legs together. Simple I hear you say? Think again. Have you ever looked at the position of foot pedals on a standard wheelchair? They're not ideally suited to this. Take a look now:

Now do you see my predicament? The place I need to put both my feet is actually thin air. I could of course sit at an angle, squeezing both feet onto one foot pedal but I suspect after a while this will become uncomfortable. Another potential way round it is to sit with my knees together but feet apart; one on each foot pedal, but again this will cause pain after a while.

So what's the solution? Should I not wear some of the lovely dresses I own simply because I'm in a wheelchair? Do I need to change my shopping habits and dismiss a truly nice dress simply on the basis of it's length possibly being inappropriate to be worn in wheelchair? I hope not. Surely there has to be a way around this.

I suspect the solution is going to involve my family making modifications to my wheelchair...once we come up with a suitable idea! Watch this space.

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.