Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: ME-versary

13 Years with ME

I can’t believe today marks 13 years since I got diagnosed. Yes it is May 13th and my 13th ME-versary! A day of mixed emotions remembering the feeling of relief that day 13 years ago at finally getting a diagnosis, of someone saying they know what’s wrong. Then as the years have passed I’ve realised that actually no one truly knows what is wrong with me; if they did there’d be more support, a treatment and maybe even a cure.

On that front everything this year seems to be going at a fast pace, not just in terms of how fast the year is going (how is it May already?!) but also my referral to the CFS Clinic, made at the beginning of March & first appointment was the end of April! Super speedy. And now I have a further two appointments already made. This is the first form of support I’ve had, other than a GP, in 9 years.

The first CFS Clinic appointment went well & gave me cause to be optimistic; they actually listened to me! Since having a diagnosis of ME so many doctors have just brushed aside my concerns about new symptoms as ‘just being ME’ and left me to manage things on my own. I’ve lost count of the number of times I’ve left a doctor’s office on the verge of tears, despondent at the lack of support. I know there’s not much they can do for ME, but a bit of support goes a long way. This was the first time in a long while I left the office of a medical professional feeling optimistic.

I’ve had to have another blood test, in addition to the one I had back in March. This time I didn’t faint mid-test though, my body waited until afterwards! Maybe that’s progress!

I don’t know if any of this will lead to anything, but right now knowing there’s someone there who will listen to me at these appointments and offer support is help enough. It’s hard to explain but having had almost nothing in the way of support (medically) for the past nine years, virtually anything the clinic offers is better than what I’ve previously had – the starting bar is already mightily low.

It’s also come at a time when my health has deteriorated, this blog post has taken me days to write because I can’t type, or even think clearly enough to put a sentence together for very long. It’s been written literally a paragraph at a time over almost two weeks. My legs frequently feel like they’re going to give way beneath me, and my arms aren’t much better when I try holding onto things for support. The pain levels have increased, as has sensitivity to noise and light – ear plugs & sunglasses are my best friends! I can’t manage much activity each day and require help with simple tasks again. It’s taking time to get used to, to adjust to a further reduced level of independence.

I’m not expecting a miracle treatment or cure but having some support is wonderful! Here’s hoping this time next year, maybe, just perhaps, things might be a little easier than they are right now.

But this anniversary isn’t all about focusing on the continued lack of understanding, support and treatment, it is also about celebrating the person I’ve become as a result of having this illness. Through the years I have found I am stronger and braver than I ever thought possible, I have survived bouts of such poor health looking back I’m amazed at how positive I managed to remain. That’s not to say I don’t have my moments of feeling sad & frustrated about all that I’ve missed out on, am unable to do and how uncertain my future looks. But for the most part I remain positive and try to achieve things despite the limitations this illness imposes. The biggest of those during the last 13 years has been my degree; possibly the most challenging thing I’ve taken on in life if you don’t include the challenge that being chronically ill presents!

So today there shall be cake & smiles even though I’ve been ill 13 years and it seems I’m no closer to recovering. I will make the most of what I can do and enjoy that.

Besides my wonderful friend over at the-slowlane-me is hosting a Blue Sunday tea party, and so cake is definitely a must, I may not be able to join in personally but I’m there virtually! If you want to support her in raising money for the ME Association then please join in, details can be found here: https://twitter.com/theslowlane_ME/status/995576623310213120?s=09

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10 Years

A lot can change in 10 years. 10 years ago today I was preparing for a hospital appointment the next day. Little did I know that hospital appointment would mark the beginning of so many things; being believed by a doctor, being diagnosed with a life limiting illness, being disbelieved by people, being sofa bound, being housebound, being cared for and so much more.

I’ve spent a decade with M.E. now and slowly but surely things are changing. Word is getting out that it’s not just ‘all in the head’, that it is a physical illness. The support networks available now are truly amazing.

10 years ago we had only just got broadband, there was only one computer in the house for the whole family to use. I was too ill to go out, I couldn’t go to school so slowly friendships dropped away – lets face it at 12 if you weren’t at school for a few months you could be easily forgotten – I ended up isolated. It felt like I was the only person in the world going through what I was dealing with. But gradually the internet grew, I got my own PC I discovered charities for people with M.E., people going through the same thing. Nowadays the internet is my lifeline. I have a personal computer, smartphone and tablet. I’ve found communities of people suffering from the same illness, the same symptoms, people who I can talk to about living with a chronic illness. The support they offer is truly invaluable. Without them I would once again feel isolated. I can honestly say the internet has changed my life for the better.

The past 10 years have seen their highs and lows, there’s been improvements, relapses, little blips but I’ve come through stronger than ever. I’ll admit this time 10 years ago I really couldn’t see myself getting better, I couldn’t see a way through the pain, exhaustion and other symptoms I was experiencing especially when no one would believe I was ill. But slowly and surely, by taking one day at a time I’ve made it through. I’ve seen some highs – walking into the town centre, doing some shopping and walking back unaided in 2010 – and I’ve seen some lows – a massive relapse in 2013 sending me to the worst I’d suffered with M.E – but I’ve kept going.

I honestly don’t know how. Looking back at just the last 5 years I can’t fathom how much has changed and what I’ve achieved. Two courses at the local adult education centre, starting my degree, going from walking unaided to being sofa bound again, keeping going with my degree, improving from sofa bound to walking with crutches, getting two thirds of my way to a degree. I’m sure there’s a helluva lot more I could mention, but these are the things that stick out for me in those five years. Pure determination not to give up, plus some brilliant support from friends, family and the online community has got me through.

10 years ago I’d never heard of M.E. or CFS I got thrown in at the deep end and had to learn about it through having it, and my family had to learn about it through seeing me suffer and helping me. But things are changing, slowly articles are appearing in the media accurately describing what it’s like to have M.E., the symptoms and effects it has on peoples’ lives. Sadly there are still many inaccurate articles published but the tide is turning; people are beginning to have a rough idea of what M.E. is, no matter how sketchy that idea is it’s a start.

I don’t expect things to change overnight, heck if there’s one thing I’ve learned in the past 10 years it’s that you have to be patient to see improvements and changes, attitudes towards M.E. are slowly changing, research is being conducted and days like today are playing a big part; Today is M.E. Awareness Day. A day when people with M.E. spread their stories through social media, local media and any other way they possibly can. It takes a lot of courage and precious energy to do so but we do it because we need things to change. We don’t want any future sufferers to have to go through what we have been through and are going through. We want the diagnosis to be there for them, the support to be there for them and ultimately if not the cure than the treatment to be there for them. This is the day we spread awareness of our fight for that.

With this in mind I’d like to remind you that I’m spending today dressed as a Princess in order to raise money for Invest in ME who are a small charity doing a fantastic job at raising awareness and funding much needed research into M.E. If you can spare even a pound to sponsor me I would greatly appreciate it. You can do so by texting PCJW78 followed by your donation amount £1, £2, £3, £4, £5, or £10 to 70070 or by donating online at http://www.justgiving.com/PrincessClare I shall of course post all the photos on this blog in the coming days but in the meantime head over to the Facebook page or @ALifeWithinME on Twitter!

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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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Today’s an Anniversary of Sorts…

Well I hadn’t intended on writing again so soon but today is proving a bit difficult and I thought I’d share with you why.

Today May 13th 2013 signals 8 years of me officially being diagnosed with ME. It’s not an anniversary to celebrate, nor one to mourn. So just how do you behave on the anniversary of a diagnosis with a chronic invisible misunderstood illness like ME?

Other years this day has come and passed without me paying much attention, or looking back on the past year and seeing how far I’ve come – how much better I am than I was a year ago. I guess that’s probably why this year it’s proving more difficult – I am in fact worse now than I was a year ago, much worse in fact.

This time last year, ok I wasn’t at my best but I was walking mostly unaided, walking into town and generally able to lead a much more normal life than I can now. I was still limited in what I could do but to me after being housebound/bedbound between 2005 and 2009 it was still something to make the most of and enjoy – I was almost normal!

Now I’m really struggling again, it all went downhill in October 2012 and has pretty much continued until now! Virus after virus, infections, allergic reactions and pressing uni deadlines have all resulted in a couple of quite severe relapses as you may know if you’ve been reading my blog during this time.

I’m just finding it hard to comprehend that it’s been 8 years since I got ill, 8 years since I was diagnosed, 4 years since I last had any support from the hospital. I’m now almost bedbound again. I rarely leave the house unless absolutely necessary because it leaves me incredibly exhausted and in so much pain.

Each year in the past 8 years I’ve been able to look back and identify at least one symptom that has improved, no matter how slight and seemingly insignificant that improvement might be! But today I’m looking back and realizing how many symptoms have got worse or come back again. I can’t identify one thing that has improved in that sense. Which I think is why I’m finding today so difficult.

Isolation is getting to me as well at the moment – only getting out for necessary appointments which absolutely exhaust me is disheartening. My home is becoming a prison again and there’s seemingly nothing I can do to prevent this, I need to rest to get better and the only place to rest is in these four walls.

Oh well, on a more positive note…

I’d like to include a MASSIVE THANK YOU to everyone who took part in ME Awareness Day yesterday – be that posting and sharing on facebook and twitter or taking part in sponsored events. And to all of you taking part in ME Awareness Week THANK YOU too!
Together we can and will raise awareness and understanding of this devastating illness.

Thank you for reading my ramblings and current struggles, feel free to comment or tweet me. Bye for now!

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