Category: ME Awareness Page 12 of 13

My Essential Aids to Living

On 13th May 2014

In Essential Living Aids, ME Awareness, ME-versary

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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It’s time I ‘fessed up…

By Clare

On 12th May 2014

In A Day In My Life, ME Awareness

I’ve been blogging for almost two years, yet up until now I’ve only shared my posts with a friendly set of strangers – my followers on twitter – who are for the most part fellow Spoonies. My immediate family have had no idea I blog, nor have family friends or most of my Facebook friends. I’ve been too scared to tell them. Afraid of what might be said, the fact my posts are far removed from the everyday life of most people. What I count as achievements, might be considered trivial tasks. I didn’t want to face having a conversation about my blog posts unless it was in 140 characters or less on Twitter.

But since it’s reaching that time of year again – M.E. Awareness Day May 12th – and I’m still unable to do anything remotely incredible to raise awareness of this debilitating illness thanks to being its grips, I thought it’s about time I confessed all to my family, friends and whoever else reads this blog of mine. For the first time I plan on sharing this blog not only on Twitter and Google+ but on Facebook too. I will also tell my family who aren’t on social networks where to find it. A courageous step for someone who’s hid this for so long. But in the name of raising awareness of M.E. I’m giving up this secret.

Last year in aid of M.E. awareness I did a post titled ‘A Day in my life…’ and I thought this year in this post I’d do the same. Things have changed a lot since then, improved. Looking back I can’t believe how far I’ve come. This is just an average day. Not a bad day, or a best day. So here goes…

I wake unrefreshed, often after an 11hr sleep. My body feels heavy and stiff, like I have the flu. I lie in bed carefully moving my joints, assessing the pain and movement levels I have that morning. I slowly sit up before resting my feet on the floor and standing. I get my clothes out for the day and grab my magnetic bracelet, worn to help ease the pain. I walk to the stairs unaided, carrying my clothes, occasionally grabbing the wall or furniture for support before walking down the stairs holding onto the hand rail.

I get my breakfast, standing but often holding onto the worktop for support. After breakfast, I get washed and dressed – by myself. I have to sit down to dress my bottom half as my balance is atrocious. I clean my teeth sitting down, using my toothbrush with foam curlers on the handle so its easier for me to grip.

By now it’s mid-morning or later. I sit and have a cup of tea resting, before taking my study books out and studying for an hour or two with occasional rests so it’s more like half hour – an hour of actual studying!

Come midday I get up off the sofa (my favourite haunt) to get myself some lunch. Again I do this standing, often leaning on the worktop for some support. I sit with my feet up on the sofa having lunch, listening to the radio before watching an hour’s TV.

Mid-afternoon I often do another hour or two’s study, again with rests reducing the actual amount of studying I do.

Evening’s are my worst time of day. My parents will cook me dinner while I rest on the sofa, sometimes with music playing other times with the TV on. I’ll eat dinner and quite often if I’m able to I’ll help wash up, this time it will involve my perching stool whether I’m washing or drying up as I haven’t the strength to stand there for any length of time.

I’ll watch TV for a few hours or lie on the sofa chatting with my parents, before having a hot drink and getting ready for bed. I put my PJ’s on unaided, again sitting down to do my bottom half, and clean my teeth whilst also sitting down. I then get a cup of water (it has to have a handle as a glass just falls through my fingers) and have one of my parents follow me up the stairs carrying it. I write in my journal, snuggle under the duvet and wait for sleep to claim me; this can take anything from a few minutes to a few hours but it does eventually come.

As I said before 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.

Somethings haven’t changed since last year 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.”

To mark International ME Awareness Day 2014 I have created a new page on this blog dedicated to explaining M.E. You can find the new page ‘What is M.E?’ on the navigation bar at the top of any page on my blog. If my explanation isn’t enough and you want to know more, please see the Useful Links for ME page and follow the links to the charities where you will find explanations of ME, its symptoms, causes, treatments and how people live with it.

For now I shall leave you to get on with your, no doubt busy, life. Please feel free to share this blog to help raise awareness of M.E. – this is part of the #May12thBlogBomb on Twitter for ME Awareness – and of course leave a comment below or contact me via the link at the top of this blog if you want to!

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An M.E. event to make you laugh…

By Clare

On 3rd May 2014

In ME Awareness

So I realise there are a lot of M.E. awareness and fundraising events going on this month but here’s one that’s caught my eye, brought to you by a good friend of mine who has M.E. himself. Tony has spent a good few months putting this event together, despite being ill and I think he deserves some blog coverage from me and a little bit of love from you lovely people who read my blog posts!

What is The Zzz…Factor. The Best in Almost Live Lie-Down Comedy?
The idea of this event is to appeal to all you comedy lovers! Tony has created a website full of jokes, ready for people of all abilities to enjoy. You’ll find videos full of jokes, as well as audio versions and there’s even a place to try on silly hats! Jokes have been provided by the M.E. community and of course Tony himself. You can even leave your own joke for others to enjoy when you donate!! Finally you can vote for your favourite Zzz…Factor page from the foyer. What’s not to love?!

Where do I find The Zzz…Factor. The Best in Almost Live Lie-Down Comedy?
You’ll find this event at The Invest in ME Comedy Club website.

How do I get involved?
To get in to the Invest in ME Comedy Club you’ll need to buy a ticket by making a donation to the JustGiving page which you can get to via The Box Office

An ALL INCLUSIVE entrance ticket is ***ONLY £2 *** but the club will happily accept more if you’re feeling particularly generous!

With your JustGiving receipt you’ll be given the password to access the show. Enter the foyer, choose your show and then you can just sit back and enjoy! Afterwards don’t forget to vote for your favourite Zzz….Factor page!

Where does the money raised go to?
All funds made at The Invest in M.E. Comedy Club, Zzz…Factor event will go to an M.E. charity; Invest In M.E. You can find out more about this charity on right-hand side of the Zzz…Factor JustGiving page

I’m hoping you lovely readers of mine will come up trumps and make all the hard work my good friend has put into creating this event worth it. As I said I know there are a lot of fundraising events going on this month so I understand if you can’t donate. One thing to consider doing, if you can afford it, is to give the minimum donation to one or two events; that way showing your support for a number of people who have organised events rather than just one. I understand that money is tight for a lot of people at the moment and completely understand if you are unable to donate at all, if this is the case please share the event with your family and friends since the more people who know about it the better!

I’ll leave you to decide if you want to join in the fun. If you do ENJOY!

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On the up…of a fashion…

By Clare

On 30th April 2014

In ME Awareness, My Open University Journey

Soo I guess a lot has happened since I last posted about how my life was going. I’ll try and keep this as brief as I can.

I’ve recovered from the shingles; have a few scars and still get the occasional bout of nerve pain but I’m over it. And I’m now slowly getting myself back to some sense of ‘normal’ it’s taking time and it’s not without its obstacles (namely more bugs) but I’m managing to improve and feel more ‘stable’. I’m in control of the M.E. for the most part.

On April 19th 2014 I managed to attend a 6 hour tutorial for my Open University module – MAJOR achievement! You can read more about my experience and see my top tips for managing here.

My life has and still is revolving around my course work and studying. Although now it’s revolving around revision for my exam in June. I have been managing to spend the odd afternoon out in the garden tending to my vegetable patch – I don’t do any of the hard work but have planted some seeds and sit at the edge and weed etc. when I can.

I’m also making plans for the future and taking tentative steps towards it. I’ll post more as things take shape but the plan is to slowly start building my own business. Right now it’s only in the brainstorming stages and I don’t know if it is possible while I’m still doing my degree but a girl has to earn a living somehow!

I’m busy working on a post for M.E. awareness day; May 12th if you’ve forgotten! But in the meantime there is a group of lovely M.E.’ers who are spending the day dressed as Princesses to raise money for Invest in M.E. You can donate to their JustGiving page here: http://www.justgiving.com/teams/meprincesses and find their Facebook page here: https://www.facebook.com/meprincesses If you can’t donate please share their page with others as it’s not all about the money raised; awareness of M.E. is just as, important!! So please support #TeamPrincess in any way you can! Thank you!!

I think that’s all there is to say for now. I’m taking things relatively easy right now, I don’t want to go back to how I was and still have days which scare me. Actually I have moments in the evenings that terrify me, but they’re usually due to tiredness.

Anyway onwards and upwards from here. As always feel free to comment below or tweet me @SmilingClare

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