Princess Day 2016

Just a short post to show off some photos from International M.E. Awareness Day on May 12th, the day I spent dressed as a Princess to raise money for Invest in M.E. Research. I had a fantastic day but it was rather more exhausting than I expected it to be! So here's the photos:

Blue nail varnish!

First photo of the day, wearing my invisible crown.

A Royal selfish the old fashioned way of using a proper camera and a mirror!

A photo taken by my Dad.

A realistic depiction of how I spend most days!

Another realistic depiction of how I spend most days!

Having a good rest!

A MASSIVE THANK YOU goes out to everyone who has supported me in raising money for Invest in M.E. Research again this year. The current total of offline and online donations stands at £220 but there's still time to show your support my JustGiving page remains open at: https://www.justgiving.com/princessclarew

A Day in My Life....May 12th 2016

As is now tradition on International ME Awareness Day in this post I shall share what it's  like to live a day in my life:

I wake up (can you call it waking up when it doesn’t feel like you’ve slept?) at around 9am. I lie still assessing the pain levels in my limbs and torso. Worrying the tingling sensation in my legs won't subside when I venture out of bed. I slowly move to a sitting position, wincing in pain as my ribs make it known they're not happy. I tug the duvet off me, slowly swing my feet out of bed and drop them to the floor, sitting, waiting for my body to adjust to being upright; to minimise the risk of being overwhelmed with dizziness on standing. I gather the essentials and begin the trek down the stairs, slowly, literally taking one step at a time holding onto the rail.

I get my breakfast, and take my morning painkillers. Slowly making my way back up the stairs again to get some clothes for the day. I have a short rest before heading to the bathroom to get washed and dressed. I then sit with a cup of tea for half hour or so.

I get my study materials out ready to commence a short study period. Spreading them out across the sofa as I'm unable to sit at my desk for long. After about an hour (sometimes less) I stop. I get my lunch and have a bit of a rest before watching an hour of TV. Another rest follows, before doing another activity; sometimes studying, other times something less intense!

Come 4pm I'm starting to feel very fatigued and have another rest, just listening to what's going on around me. Decisions of what to have for dinner can be difficult, asometimes I sit out in the kitchen watching, occasionally helping make the dinner. I eat dinner on the sofa and take some painkillers with it.

By 7pm it's time to curl up on the sofa in my pyjamas. I might play a simple board game or card game with my family, or watch a single TV show. I have a hot drink and come 10pm I get ready for bed, take some painkillers and begin the journey up the wooden hill (stairs) to bed. I write in my journal, then find the most comfortable position and wait for sleep to claim me. 

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

Looking back in last year's post it's great to be able to see I've made progress even though these past few months have felt incredibly tough. I'm doing most basic tasks independently of my parents now and the stairs aren't as much of an everyday struggle as they were 12 months ago. Life still isn't easy but it's  good to look back and see how far I've come.

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

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

Remember I'm spending today dressed as a Princess to raise money for Invest in ME a small charity funding vital biomedical research into M.E. If you can afford to sponsor me you can donate via text by texting MEPC92 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. MEPC92 £4 to 70070) or head over to my JustGiving page:http://www.justgiving.com/PrincessClareW If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!

ME: An Explanation of Sorts

Most of you will already know I've been chronically ill with something called M.E. for almost 11 years now. But you may not be aware of just what that means. So I'm going to try and explain it.

Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome (C.F.S.) is a chronic illness of unknown origin. It affects every aspect of life and the severity varies significantly from person to person and sometimes from week to week in a single person. There are a multitude of different symptoms associated with M.E. and not every person with the condition gets every symptom, I'm going to list those I have personal experience of.

• Post Exertional Malaise (P.E.M) - exhaustion and pain which hits anywhere between 24 and 72 hours after an activity. This can often leave you wondering why you feel so awful if you've forgotten you did something 3 days ago!
• Muscle and joint pain.
• Unrelenting fatigue, not relieved by rest or sleep.
• No temperature control: my body can go from freezing to boiling in a matter of seconds and vice versa no matter what the actual room temperature is.
• Orthostatic intolerance; dizziness/fainting when changing positions from lying to sitting, sitting to standing or from sitting upright or standing still for too long.
• Tingling/numbness in limbs and extremities; like pins and needles that won't go away.
• Sound sensitivity; a 'normal’ conversation or rustling of a crisp packet can be too loud!
• Light sensitivity; meaning screen time has to be restricted and sunglasses worn indoors.
• Chronic headache.
• Chronic sore throat.
• Food intolerances; milk proteins and alcohol.
• Difficulty concentrating/brain fog.
• Inability to find the right word, or string a sentence together; fortunately my family have become fluent in 'M.E. speak’!
• Sleep problems; sometimes insomnia or difficulty sleeping, other times a constant sleepiness where staying awake for a few hours a day is an immense challenge.
• Freezing cold extremities; no matter what I do my hands and feet are often frozen, even in multiple socks!
• Diminished dexterity; I can't always grip things so holding a glass or a pen can be a huge difficulty. Lifting heavy items such as a kettle is a no go too as I'm liable to drop it!
• Short-term memory problems; I can't always remember what I did a few hours ago, what I went into a room for, where I put my phone just a moment ago etc.
• Loss of appetite; sometimes I struggle to eat enough to keep my body going, I know I need to eat but I'm simply not hungry. Other times it's harder to describe: I feel really hungry but after eating just a small amount I feel full. I can't eat a big meal without getting very dizzy/feeling faint afterwards and I struggle to eat after 7pm. The general rule is to eat little and often but I often forget unless reminded!
• Excessive sweating; possibly the most visible symptom I get with this illness. It doesn't matter if I'm not or cold you can bet I'll be sweating. This can be rather embarrassing when it leads to wet patches under my arms etc. but there's nothing I can do about it.
• Heat intolerance; particularly noticeable in summer if I spend too long out in the heat I come out in red blotches. On the rare occasion I can cope with a hot shower (it usually has to be warm as otherwise I end up feeling faint) my feet and knees, which are under the water the most due to sitting down, turn bright red.
• Burning sensation or itching in my feet. Another odd one, my feet can be freezing cold but feel like they're burning to me
• Muscle spasms, random muscles twitching can be rather painful and at times result in injury when it leads to the limb colliding with the wall or other object!
• Muscle weakness; my legs in particular won't always support my weight and shake when I stand or walk. It is also noticeable in my hands and arms when I find myself unable to open bottles and packets.
• Sensitivity to movement in the room, another odd one but if someone or something is moving too fast (this can mean at 'normal’ pace) it makes me feel nauseous and really ill.
• Trembling sensation on the inside, this one is difficult to explain but when I'm tired it can feel like I'm trembling but when I put my arm out it's perfectly steady hence the description of feeling like I'm trembling in the inside.
• Poor balance; this needs little explanation as I regularly trip over thin air and test gravity!
• Feeling of being touched when there's nothing there; this can be really creepy when it feels like there's a spider crawling across your back and there's nothing there!
• Sensitivity to clothes/anything touching my skin, certain materials can feel like razor blades to me; especially labels!
• Joints are tender to touch.
• Nausea.
• Muscle and joint stiffness; sometimes it's not the pain that makes it difficult to walk it's the stiff muscles and joints which don't want to move.
• Blurred vision, often when I'm tired my eyes can't seem to keep up with anything that moves fast; things blur but after a few seconds clear.
• Eye aches; too much reading or screen time causes the muscles behind my eyes to ache. And by too much sometimes that isn't a lot.

I don't suffer all of these symptoms every day, and some days they're worse than others. But a good portion of them are always present. Every day I have to force myself to do basic tasks; it's surprising how much energy and how many muscles even the simplest tasks take, something you don't realise until you have a very limited energy supply and painful muscles!

I force myself to get up and downstairs everyday; mainly because the bathroom is down there! I also force myself to get dressed almost every day; there is the odd day I end up staying in my pyjamas but it has to be a REALLY bad day. Sometimes getting dressed is all I manage to do.

Living like this day in, day out, seeing small improvements only to have them wiped out by relapses, is draining. It takes every ounce of strength to keep positive and hang onto hope. The work of ME charities like Invest in ME provides that thread of hope that the cause of this illness will be found and in turn if not a cure then a viable treatment. But to do this they need funding. That's why on May 12th, International ME Awareness Day, I shall be forcing myself to dress up as a Princess for the day to raise money for Invest in ME. Prettying myself up for this will take extra energy, the dress itself may actually cause additional pain from just wearing it, my studies may well take a hit not just on the day but in the following days as the Post Exertional Malaise kicks in (oh and I'm having a friend round in the afternoon!) Nevertheless if it helps fund the much needed research and keeps that thread of hope alive, not just for me but thousands of others like me, then it will be worth it. Please donate and share this if you can. It really does mean a lot!

I was a Princess for a day!

The title of this post says it all. On May 12th 2015 I dressed as a Princess for the day in order to raise money for the small charity with a big cause: Invest in ME. I was overwhelmed by the support I received in doing this, and the donations that seemed to flood in!

As promised here are some pictures from the day...

Just after getting dressed up

Smiling for the camera!

One may have been a Royal Princess for the day but one still had to study

A Princess Selfie

Having spent most of the morning switching between posting on social media sites and working on my End of Module Assessment for uni (not an advised combination by the way!) I was beginning to feel exhausted...

Beginning to feel pretty rough, mid afternoon

Overall it was a brilliant day and I managed to raise £207 in online and offline donations! I was (and still am) overwhelmed by the support and donations I received. SO if you're one of those lovely people who donated THANK YOU so much, you are amazingly generous people. If you're a bit late to The Princesses and M.E party then you can still donate by texting PCJW78 followed by £1, £2, £3, £4, £5 or £10 to 70070 (e.g. PCJW78 £3 to 70070) or by visiting my JustGiving page: http://justgiving.com/PrincessClare

Sadly all good things must come to an end, and my day ended with a bump. Tripping over my own dress, breaking its strap and landing on the floor has only served to cause a certain amount of laughter in my household and a fair bit of pain (on top of the flare in symptoms for being so active online for the day) At least no one can say I didn't suffer for my fundraising event!!

The Reason Awareness is SO Important

M.E. is a debilitating illness yet often sufferers find themselves being called liars. No one believes someone could have all the symptoms M.E. can cause and there be no treatment for it. It is an illness that baffles the medical profession too. Society is faced with a debilitating illness that no one knows much about, and so people don't want to believe it is real. Instead sufferers are faced with being told, among many other things, that it's all in their head, they just need to get out more, they should exercise more, they're doing it for attention, told that it must be nice to be able to stay in bed all day and not to have to work.

No one wants to believe M.E. is real. That one person could suffer so many debilitating symptoms for so long with no real medical help is a terrible thought. Yet to not be believed because the amount of symptoms suffered and the debilitation caused is heartbreaking for many. Do you really believe anyone would want to live a life like this? To struggle to sit up without coming close to fainting? To have to rely on others to help shower and dress you? To spend most of your time inside, unable to cope with more than one visitor at a time?

If you really believe someone would want to live a life like this then I feel sorry for you, I really do. Living this life is not the picnic you obviously believe it to be. I wouldn't wish what I suffer on a daily basis on anyone, but I need to be honest with you. This life is hard. Not having the energy to do the things you love. Not being able to do the most basic task, while watching other people complete it for you with ease. Not seeing your friends for months on end because you're simply to ill. Watching everyone else your age going out and getting on with their lives, while you just lie there waiting to see if you'll ever be able to do what they do. To be in so much pain you can't sleep, but knowing that not getting any sleep will only serve to make the pain even worse.

There is very little the medical profession can do for people with M.E. Some treat the symptoms, as they can't treat the illness as a whole without knowing the cause. Some recommend exercise which often makes the person suffer even worse symptoms. Some medical professionals refuse to believe that M.E. exists. To find a cure, or even just a treatment we need biomedical research into the cause, research that is not readily forthcoming.

No this life is not a picnic. It isn't one anyone would choose to have. And I've only highlighted a few aspects of it in this post. Because of the stigma attached to having an illness such as M.E. and the way it is perceived both by the general public and unfortunately by some in the medical profession, being honest about the true extent of what you go through can be incredibly difficult. When posting anything this honest you have to be prepared to get unhelpful comments, suggestions that it's all in your mind, things I've already mentioned in this post and so much more.

But without people being open and honest about what they go through on a day-to-day basis how are things ever going to change? This is why one week a year I bombard my social media pages and often this very blog with posts about M.E. You see there is one week in May dedicated to raising awareness of this debilitating illness. And I for one always do my very best to make the most of that week, getting as much information as possible out there for everyone to see. I hope this year some of you shall join me, either by creating your own posts or by sharing some of the ones you see on social media sites. And of course by wearing a blue ribbon or anything blue on May 12th for ME Awareness Day; if anyone asks about that blue item do your best to explain it's to raise awareness of a debilitating neurological illness called M.E.

We're not expecting miracles but a little bit of understanding, education and awareness goes a long way. So if you get sick of seeing the M.E. Awareness posts during that week in May, stop for a minute and think, really think about how it must feel to be having to post things like that in order to raise awareness so people actually begin to believe just how unwell you actually are. To be spending your precious energy on trying to educate people on the struggle you face on a daily basis, when this means giving up doing something you'd really enjoy doing that day because you simply don't have the energy to do both. This is not the life anyone would willingly choose to live. Remember that.

Fundraising on May 12th

As I've mentioned in a previous post I'm going to be fundraising for Invest in ME on May 12th by dressing as a Princess for the day! To say I'm excited about this is an understatement; finding a way to fundraise when you have so little energy is rather difficult, so this is a big thing.

I've been overwhelmed by the support and donations I have received so far on my JustGiving page: I reached £50, half my initial target, in under a week! If you've been following my progress on the JustGiving page, Facebook or Twitter you'll know I shared a photo of my homemade, hand knitted tiara when I reached that halfway point.

My hand knitted tiara, complete with blue sequin jewels

I also received a wonderful fundraising pack from the charity I am supporting; Invest in ME. I will proudly be wearing the sash as part of my Princess costume!

My Fundraising pack from Invest in ME

The reason I am fundraising for an M.E charity is because we need research into the cause if we are to ever find an effective treatment and hopefully a cure! I also want to raise as much awareness about M.E. as possible, since it is still a misunderstood illness and the attitudes towards people who suffer from it can be very hurtful. Raising awareness and educating everyone about M.E. can only improve this!

I've promised that if I reach my £100 target before May 12th I'll give you all a sneak peek of my Princess dress! So if you want that sneak preview, and to help me smash my £100 target please text PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or£10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare

Severe ME Awareness: My Part

I mentioned in my previous post about Severe ME Awareness, that I aimed to be taking part in two campaigns I'd come across which involved taking a photo of myself and posting it on social media. I'm happy to announce that despite a challenging week, which saw me unable to use my right arm for a few days due to muscle weakness, I have managed it! So I thought I'd share my photos and the links to the campaigns again in case you want to find out more.

The Black Dress Selfie

This campaign asks that you wear black dress on August 8th. Something I have managed to do today. Even better it happened to be a Little Black Dress just like the one in the info graphic! If you follow me on Instagram you'll have seen a slightly different photo to this one, owing to the fact Instagram wouldn't let me use this one due to its size. More information on this campaign can be found here: http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html

My Black Dress Selfie.

Black Dress Selfie Info Graphic

Stop The ME Cover Up

This campaign requested particpants covered up partially or completely with a message promoting awareness of severe ME. I took this photo earlier in the week (pacing myself you see!) but coming up with the message was a little more difficult. I'm hoping what I came up with does the job. More information on this campaign is available at: http://sallyjustme.blogspot.co.uk/2014/08/living-death.html and http://stonebird.co.uk/archive/aug8/

My photo for the Stop the ME Cover Up campaign.

Please let me know if you've played your part in any of these campaigns, or any others you've come across! I'd love to see your photos too.

Severe M.E. Awareness

I recently came across a couple of campaigns to help raise awareness of severe M.E. They both struck a chord with me and I plan on participating. But first I thought I'd share them with you in the hope you will also participate and help us raise awareness of severe M.E. Both campaigns are easy to participate in and won't take much time or energy; but you will need a camera and a social media account!

The first campaign I came across is The Black Dress Selfie.

The idea here is that on August 8th you wear black dress, posting a photo of you in the outfit on social media along with the Black Dress Selfie info graphic, provided below. If you're female and have a Little Black Dress, all the better. But if you're male or don't own a black dress, don't worry just get a little creative; in my view 'Black Dress' could also mean wearing a black outfit.

More information on this campaign is available here: http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html

The second campaign I've come across is Stop The ME Cover Up

The idea of this campaign is to raise awareness of how ignored severe M.E. is. So for this one participants are asked to take a photo of themselves totally or partially covered up, with a message promoting awareness of severe M.E. This can be something simple such as the name of the campaign; Stop The ME Cover Up, a phrase which describes the current level of awareness ("Out of sight, Out of mind" springs to my mind!) or something more revealing about the affects of severe M.E.

Stop the ME Cover Up

More information on this campaign can be found on these sites:
http://sallyjustme.blogspot.co.uk/2014/08/living-death.html
http://stonebird.co.uk/archive/aug8/

I plan on participating in both campaigns on August 8th, I hope to post my photos both on here and on all my social media accounts. I'll be using the hash tags #BlackDressSelfie #BlackDressDayForSevereME #StopTheMECoverUp along with my usual #ME #MEAwareness and #SevereMEAwareness hash tags. I'd love to see your selfies for this cause too! Let me know if you get involved!!

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!

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.