British Summertime

There's no denying actually having a summer and having no university work to do is amazing, but there is a downside to all this heat we've had in England. That is; heat and M.E. like many other chronic illnesses, don't mix too well.

To begin with I found the heat quite nice, my pain levels reduced and I felt a bit better. But once it started reaching 30C it became very draining and my energy levels plummeted. The humidty and changes in air pressure have my pain levels all over the place with storms occurring quite frequently. I know I'm not alone in finding this, and some of my friends have struggled with the weather more so than me. So why am I blogging about it? It's not that I want to complain, although it would be the typically British thing to do, it's that I want to make people aware of the impact a significant change in weather can have on someone with M.E.

Now if you're reading this as a perfectly healthy individual, recall how you feel in 30C temperatures and above. Sluggish? Sticky? Unsure of what to do with yourself? More tired than usual? What do you normally do to alleviate some of these things? Do you shower to relieve the stickiness being hot has created?

Now imagine having M.E. where you live with limited energy levels everyday and have found they've dropped even more due to the hot weather. To add to that you're sticky because of the heat. You normally manage some low energy activities during the day but since you're energy levels have dropped even further you can't do as much as you were. So you have to rest. You can't relieve the stickiness being hot has created by having a shower because you simply don't have the energy to shower. You're reminded of just how limited your life has become. Suddenly  summer doesn't seem quite as nice as it once did.

I never thought I'd be one to say I missed the typical British Summer of temperatures in the mid-teens to low twenties, I always enjoyed the hotter weather. But as I've discovered in recent years, the impact on my health is far too great for me to enjoy a very hot summer. So a typical British Summer (minus all the rain perhaps?) would be ideal for me. Instead I'm running on emptier than normal batteries, less spoons or whatever other analogy you can come up with to describe very low energy levels! However that's not going to stop me making the best of my time off, even if I do end up doing less than I planned.

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.

What's in a name?

Have you ever wondered why I titled my blog A Life Within an Illness? Yes? Well today I thought I'd explain.

It might seem like a strange title but to me it makes perfect sense. You see no matter how well I am - and by well I mean how mildly/moderately/severely affected by M.E. I may be - I always have to live within certain limits if I'm to maintain that level of activity.

So to avoid a boom and bust cycle I have to carefully manage my activities no matter how much better I feel. Do too much and risk pushing myself back to more severe symptoms for an unknown period of time; could be days, weeks, months or even years.

Therefore to me I'm living my life within the limitations of M.E. It hasn't taken everything away from me but I have to live within the limits it sets. My life happens within the limitations of my illness. Hence the name A Life Within an Illness.

For me this name signifies I want to make the most of my life within the limitations I have. It's not that I'm living within the illness itself, just within the boundaries it sets for me. A positive take on a situation that can be anything but.

Right now I'm finding those limits very restricting, especially since I'm back on crutches unable to put weight on my right knee or bend it for any real amount of time. The pain is making me tire more easily, but also making it difficult to get a decent sleep. Using crutches to hop around is putting extra stress on my arms & upper body which after a number of days is starting to take its toll. I'm having to rely on my family to carry things from room to room for me. But things will get better again, for now I have to live within these limits. I'm still managing to do things albeit sitting down resting my leg straight, and for that I'm grateful.

I will make the best of living my life within the limits of my illness.

Meditation

The one thing that really helped me get through the tough few weeks I had leading up to my exam is practicing meditation. I've come across a couple of fantastic smartphone apps which have really helped me so I thought I'd share.

Andrew Johnson's Relax Lite and Power Nap apps (definitely available for Android) are free and I downloaded them just to try. I've been suitably impressed by them and will now look into buying some of the other meditation apps Andrew Johnson offers.

The guided meditations in these apps are of perfect length to do during a break from revising or at the beginning of the day. Come the end of the meditation I feel relaxed and energised (now don't take that too seriously - it doesn't miraculously mean I can do everything I want!) Without them I think I would have been even more of a mess during those few weeks - before I started using the apps I came very close to giving up on my degree, the stress of recent events, combined with my health declining among other things, had me wondering why I ever thought it was a good idea and thinking it was an impossible feat.

But things changed. I can't say it's all thanks to the meditation apps but they certainly helped. They allowed me to take time out from constantly stressing, to relax and when I finished one of the meditations I felt calmer and more in control, positive about what I'm embarking on. It didn't seem totally impossible like it did before the meditation.

All in all I honestly don't know what state I'd be in now if I hadn't chosen to try these apps in those few weeks. They are quite honestly some of the best meditation apps I have come across! Well worth a try if you're feeling stressed or want to try your hand at meditation - anyone can do it.

Book Review: A New ME by Barry John Evans

This is the first time I've written a book review on this blog. In fact it's the first book review I've written since school when it would be set as homework. But having read this book, I felt I had to review it and share it. It just had to be done. So here goes:

A New ME by Barry John Evans.

This book is written by a young ME sufferer and describes his experience with the illness; the years leading up to a diagnosis and the ways he's found to cope in the first year. The adaptations he's had to make to his life and the limits that have been placed on him due to ME.

I downloaded the book on my Kindle one afternoon, and began reading it in the evening expecting it to take me a good few days to read. But as soon as I started reading I was hooked. I couldn't put it down. For the first time in months I sat and read a book for a few hours, cover to cover (can you say that if it's on a Kindle?!) This just goes to show how well written the book is. At no point was I tempted to put it down, in fact I struggled to pull myself away from it to get a much needed drink, that's how hooked I was.

As someone with ME I can relate to a lot of what is described in the book. The loss of friends and feeling it must be something about you that's caused it; not knowing how to answer that innocent question of 'How are you?' that comes to be dreaded. Not only can I relate to it as a sufferer but the way in which the book is written, people without ME who read this book will gain an insight into what ME is and the things sufferers have to cope with; not only the symptoms of the illness itself but all the other things that come with it; adapting to the limits it imposes, the lack of understanding from the medical community, government agencies and society as a whole. This book gives a valuable insight into all that and more.

All in all this book is a fantastic read for anyone interested in reading about ME and the experiences of a sufferer. I can imagine the energy it must have taken to write and the symptoms that had to be fought in order to ensure the end piece was as well written as it is. For that the author deserves a massive well done and virtual pat on the back (I'm sure a real pat on the back would hurt too much). So Well Done Barry!

A New ME by Barry John Evans is available at:

If you want to read Barry's book, it is available from Amazon in paperback or on Kindle via the following links:

United Kingdom 
 
Paperback http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1

Kindle http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me

United States

Paperback http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 

Kindle http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040

The book is also available in other countries too, just search the Amazon site for your country for 'A New ME by Barry John Evans'

If my review isn't enough to convince you, Barry has created his own video explaining about the book on YouTube which you can find here.

Plus 10% of the profits go to the ME charity Invest in ME

A final few words from me...

I can't mention enough how much I enjoyed reading this book or how much I can relate to a lot of what is written. I'm proud to be able to call Barry my friend and wish him all the best in the future!

Christmas in June...why not?!

So this week I ticked another thing off my bucket list of things to do this summer. I built a gingerbread house! I got a kit to do it at Christmas but because I was still studying I couldn't actually make it at the time. Six months later, study free and I've finally built it! Who said Christmas was just in December? I'm enjoying my Christmas gingerbread house in June.

It took me most of the day to complete and I ran out of icing! Plus by the time I'd 'massaged' the bag of icing to get it to the required consistency (as told to on the box of the kit) my hands were essentially broken anyway, so my icing wasn't as neat as it could have been! 

Still I enjoyed myself and it is rather tasty. Although a little tough for a tired jaw to chew. It will soon be gone and hopefully next time I buy a gingerbread house kit (or attempt to make one from scratch) I'll be able to do it at the correct time of year. In the meantime I shall just embrace Christmas in June.

Medication, Intolerances & ME

I thought I'd give you all an insight into another aspect of life with M.E. That is the world of medication and intolerances. Again this is all my personal experience and no doubt other people have different experiences.

Medication
I've never been on a lot of medication since getting M.E. I was on strong painkillers (naproxen) for a number of years but after realising they were partly to blame for the spaced out feeling, brain fog and fatigue I was experiencing, with my doctors consent I stopped taking them.

Since then my doctor has been reluctant to put me on any other strong painkillers due to the potential side effects. Instead I take paracetamol and ibuprofen for the pain when I need it. And by when I need it, I mean I only take it when the pain is at its worst; it only ever takes the edge off and I don't see the point of taking something if it doesn't really help.

I take a multivitamin most days since my diet is really quite poor, I eat the best I can but some days it's a real struggle to eat at all so I just eat what I fancy, and not what is healthy. The multivitamin helps boost my weak immune system and means I pick up fewer viruses and infections!

Then there's Omega 3 Fish Oil. I take this each morning and find it really helps reduce my brain fog and headache for the day. I find it very noticeable if I forget to take this one in particular.

Finally I take an anti-histamine during hayfever season, nothing to do with the M.E. other than the fact it helps reduce the hayfever symptoms and therefore the amount of stuff I have to cope with!

All in all I'm of the opinion that unless something has noticeable benefits I won't take it. For all I know it might in fact do me more harm than good. I'm not saying this approach is right for everyone, far from it. If my doctor prescribed me something they were sure would help, I wouldn't dismiss it straight away, I'd give it a try. But what's the point in taking painkillers that don't help ease the pain? 

Intolerances

With M.E. comes the risk of certain intolerances. In a sense I'm lucky I only have one or two of these. But they do make eating out difficult. Currently I am almost intolerant of alcohol; I can have one or two sips before I start feeling quite dizzy and suffer as a result, so I tend to avoid it.

The more troublesome intolerance I have is fresh dairy and milk proteins. This is a difficult one to explain but I shall do my best. I should say I only found this out by a process of elimination! After eating any fresh dairy products or something with 'milk proteins' listed on the ingredients I get quite ill; nauseous, upset stomach and lethargic.

For this reason I now have to avoid anything that is fresh dairy and also have to carefully check ingredients of other products that contain milk. Easy enough I hear you say? Wrong. You see I can tolerate dried milk powder, dried whey powder etc. It is literally the fresh stuff and milk proteins my body dislikes. Although this gives me the benefit of not having to exclude everything that contains milk out of my diet, and means I can still enjoy a nice cup of tea made with dried skimmed milk, and ice cream if made from dried skimmed milk, reading the ingredients of items whilst shopping is not all that easy. Especially since the Allergy Advice will list milk if it contains milk powder or dried whey which I can eat. I have to check the ingredients list for 'milk proteins' or 'proteins from milk' or however else it could be worded.

When it comes to eating out things are even more difficult. How many dairy free desserts do you see on a menu or even in a shop? How many main courses come in sauces which may contain cream? Or have cheese on them? Sandwiches are most often made with buttered bread or an unspecified margarine which may or may not contain fresh dairy products. If I ask people they do their best to find out for me but even then they don't always know. If I choose something but ask not to have the dressing/sauce whatever aspect that might contain fresh dairy or milk protein, I can't always guarantee that special request will be met. There's always an element of risk when selecting an item off the menu, unless I stick to something I'm sure is fresh dairy/milk protein free.

Parties, barbeques and family gatherings also pose a problem. I don't like to be troublesome and have to request a dairy free selection but then again I don't want to make myself ill by unwittingly eating something that contains fresh dairy or milk proteins. So I have to carefully select what to eat from the selection available or take something dairy free to add to the buffet. (Luckily for most family events we contribute something, so this isn't a problem).

All this makes going out that little bit more difficult. If I really wanted to play it safe I wouldn't go out anywhere and where's the fun in that? A food intolerance like this shouldn't be something that restricts me that much. The rest of the M.E. symptoms do that as it is, why should I let this extra thing restrict the bit of fun I can still have?!

My Reality.

Generally I like this blog to be a positive take on life with M.E. but for me there's no escaping the reality of this illness and the impacts it has on my life. I choose to focus on the things I still have and can do rather than the things I've lost. But I guess for all those folk lucky enough to have little or no idea of what M.E is, me focusing on what I can still do may not show the real impact of this illness. With this in mind I have decided to do a post on the things I can't do. The stuff I generally avoid focusing on. I don't like to dwell on what the life of a normal 21 year old is like, it only serves to make me realise all I'm missing out on.

At 21 I imagined I'd be graduating from university, regularly be out with friends, have learned to drive, perhaps even have a job too! But for me that isn't the case. For M.E. has taken that away from me. I lost my teenage years to this illness and I'm still unable to lead a normal life.

There's no parties for me, I can't cope with the noise, the lights, the crowds. Alcohol is almost a complete no go these days, I've never been able to drink much but last year's relapse has left me almost intolerant of alcohol; just a small glass of wine leaves me dizzy.

I rarely go out, and when I do it's only to local places at quiet times. Again going places when it's crowded although possible makes me very ill afterwards. I always dreamed I'd rarely be home when I was 21 but instead it's the total opposite! Much like my teenage years.

This year most of my friends are graduating from university. Something I always dreamed of doing. And it's something I will do...just not at the 'normal' age. I'll be few years behind them. But I'm lucky I'm able to study at all. At one stage the thought of doing a degree was unimaginable. But thanks to The Open University I'm able to study from home, part-time, making it possible for me to do my degree. Albeit slower than my peers and with a lot more obstacles in my way!

I had always imagined come 17 I'd learn to drive, yet here I am at 21 and I still haven't managed it. When I was well enough to in 2010 I didn't have the funds and since then I've relapsed and to be perfectly honest even on my better days now I wouldn't trust myself to drive. It's a dream of mine to learn in the future, in an automatic since that should make it easier! But for now it's another thing that's been put on the back burner thanks to the M.E.

As for a job. Well I always thought even in the early years of being ill, that come 21 I'd be able to have a small part-time job at the very least. I'd be earning a living and able to pay something towards living with my parents (if I hadn't already moved out). But alas my life took a different direction and I'm unable to work, heck I only just manage to study at times!

And then there's all the other things almost every healthy person doesn't think twice about, things that pre-illness I didn't think twice about either.

• Standing in the shower, even having the energy to shower!
• Washing and dressing.
• Walking unaided.
• Running.
• Trips out.
• Holidays.
• Lifting a kettle or even cup of water.
• Brushing your hair.
• Sitting up.
• Shopping for food & essentials.
• Doing the washing.
• Cooking a meal.
• Enjoying the sunshine.
• Being out in the fresh air. 
• No pain.
• No unrelenting fatigue.
• No constant headache, sore throat or brain fog.
• The strength to open a bottle of milk/get the lid off of the toothpaste/open a crisp packet etc.
• Able to tolerate the sound of opening a crisp packet!
• Being able to hold a pen to write.
• Climbing the stairs.

Having to choose between studying or having a shower; washing up or getting changed. These are everyday decisions for me. If I do one I often can't do the the other. Or I can do the other as well but it will make me very ill in the following hours and days.

I could go on but this really is getting a bit depressing for me. These are things I either can't do at the moment, haven't been able to do for a while or are everyday struggles for me. Struggles that often no one sees because they happen behind closed doors. These are things that no healthy person has to think about, they take them for granted. I'm guilty of that too. It's taken having M.E. for me to realise how precious these things actually are.

At this point I'd like to make it clear that I don't begrudge any healthy people of all they can do. For making the most of their lives. I admit, I occasionally feel a little bitter and sorry for myself that I can't do all a healthy person can. Especially if it's something I dream of doing. But for the most part I'm happy for them. They have the abilities and opportunities I've been denied through no fault of my own, and they're making the most of them. That's the way it should be.

I don't want my friends to feel they can't discuss their lives with me, at times their stories are my only connection with a 'normal' life. I don't blame them for excluding me from events because they realise I won't be able to cope with it. It hurts a lot to have to turn down an invite to go out because of my health, it hurts more when no one understands why I've had to say no. Luckily these times are few and far between nowadays as my friends begin to understand.

I don't think a healthy person can ever truly understand how hard it is to accept you can't do things, everyday things, when you have a chronic illness like M.E. but I'd like to think that by writing things like this post, providing an insight into life with M.E. and the decisions that have to be made, things will change. A basic understanding will be had.

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.

Season Greetings...(and apologies!)

Well it has been a long time since I last posted, sorry about that! Life has been hectic and surprise surprise my health has suffered a bit. With Christmas coming up things are even busier but I'm forcing myself to take a step back so I can enjoy the festivities on the day.

Soo I guess I should update you all as to what's been going on?! Read on only if you want to - it could get quite long!

Health wise it's been a bit of a yo-yo! Doing more than I should then consequently suffering for it. I'm still trying to establish my baseline again. I've had days where I've been unable to stand unaided; got out of bed and just crumpled in a heap on the floor, even walking with aid has been challenging. Luckily those days have been few, but it takes me by surprise and knocks my confidence quite a bit.

I managed to get my Christmas shopping done, even though it did result in the next day being one of those days mentioned above!

I've also rediscovered the impact a change of routine has on M.E. with my sister spending more time downstairs I've been 'socialising' more - there's more voices to take in, movement to cope with, more sitting up etc. and it was more exhausting than I expected. So I've had to spend more time on my bed resting. Amazing how such a slight change can have a big impact!

Uni wise, things are proving to be a struggle. I've had to request audio versions of the course materials (which should be on their way to me very soon) as the sheer amount of reading is leaving me with very tired painful eyes that can't focus. I didn't manage to attend my second or third tutorial - I was without a wheelchair for the second one as a wheel bearing had collapsed and it took almost 3 weeks to get the correct part! The third one I missed on Saturday as I had to make the difficult decision as to whether to risk the 'payback' lasting into Christmas, especially as I've been recovering from a cold. I decided it wasn't worth the risk and I'd like to be able to enjoy Christmas with my family.

I got my first assignment back as well - 65%, and also the second - 62%. Not bad considering my health and I always do slightly worse on business courses than on I.T. courses. I'm happy with it as long as I pass! Just managing to study and pass is an achievement, the level of pass doesn't matter to me.

Oooh and I got my final results back for my previous module - GRADE 2 PASS!!! Really pleased, didn't do as well on my End of Module Assignment as I'd hoped, scoring 78% with borderline fail on some components but again it's a pass and a high grade one at that! (The only grade higher is distinction)

Anyway I think that's you all up to date for now, I aim to post more regularly in the new year.

Merry Christmas! I hope 2014 brings good health, and lots of happiness for you all.

Time's Flown!

Well it's been far too long since I updated this blog! A lot had happened this past month so let me begin...

I had an absolutely AMAZING birthday! I went to Hylands park with my family for lunch, they have a lovely little cafe there called Huttons Courtyard Cafe. The weather was lovely and we managed to sit outside as inside was too loud (as per usual with my M.E). We had a nice stroll, okay I had a nice wheel..., through part of the park and got some lovely photos. Determined to go back again one day, and walk round a bit of it. In the evening I went to my grandparents for a yummy buffet meal, with them and my aunt, uncle & cousins. I really enjoyed myself even though we had to leave early because I was so tired. I got some brilliant presents and were spoilt rotten!

The next day I went to Tom's for the afternoon and dinner. Had a fantastic time! It was lovely to spend time with him again. Can't wait for the next time! He's introduced me to the addictive world of Yankee Candles!! The journey there and back wasn't as tiring as I expected although when I got out of the car I could barely walk I was so stiff, but that soon wore off.

I spent a couple of days resting as inevitably I suffered a bit of payback from all that excitement and activity! Then had dinner at my best friend's on the weekend and got even more gifts! It was an amazing week, and I am so thankful to everyone who made it so!!

Since then I've had to start my new Open University module, Business Functions in Context. That's proving tough going with the workload being quite heavy. I managed to make the first tutorial which was very local to me and had a great time. I had to go in my wheelchair as I wasn't sure of the distance. That made me even more nervous about it, but everyone was lovely. They'll be more about that on my other blog very soon I hope...! http://lifewithmedoingadegree.blogspot.co.uk/

Right now I'm going through a bit of a dip and this weekend has been the most painful I've had in a while. I've been managing (just!) on ibuprofen and paracetamol but it's been tough. I'm also recovering from a sprained foot, which I did about 2 weeks ago now; by standing up! It's healing well, but I'm still having to wear a support on it during the day or else it gets very bad in the evenings.

Went to the dentist last week and have got to keep an eye on my gums as they bled a lot when I had a clean up & polish with the hygienist there. Strangely they hadn't been bleeding and still aren't bleeding when I brush. So at a loss to what the cause is. I'm very wary of it all because of my dental condition which although is under control leaves me worrying about stuff like this!

I think that's you all up to date...unless I've missed anything! Sorry it's such a long post but like I said A LOT has happened!! Hopefully, I'll be able to update this again soon. Hope everyone reading this is as well as possible!

Well Here I am!

Well thought I might start a blog, so here I am.

A life within an illness, is going to be my place to vent, rant, share my achievements, disasters and everything else that goes on in my life.

I suffer from an illness called Myalgic Encephalomyelitis (M.E.) which is also known as Chronic Fatigue Syndrome (CFS) and other names.

No one knows the cause, there is no known cure although pacing seems to help many people.

Personally, I've found pacing works wonders but also that it's hard when you've relapsed to find the minimum I can do without feeling really ill afterwards!

I plan on updating this as often as I can...even when I'm really ill.