Into a New Year

While I’m not making an official goals or resolutions this year, I am hoping to live with a little more intention while still focusing on improving my health.

I was lucky enough to stay with my parents over Christmas, and without doing so I doubt I would have realized just how far I’ve come over the past few years. While there, I was able to go out most days using only my walking stick. Of course I didn’t walk particularly far on any day, but it was simply that I was doing so much almost constantly that astounded me. I know I did way too much and am still dealing with a lot of the side effects, but a couple of years ago I wouldn’t have made it past a couple of days being so active without causing a severe crash.  

Since I’ve got home I’ve realized just how long a day can be when it is not filled with constant activity (whether that be going out or talking to someone). While at my parents I was so busy spending time with family and friends I barely had time to open my laptop, let alone find myself wasting days watching something on Netflix (and as they also don’t have television I never found myself flicking through channels), inspiring me to try harder to do that little bit more and slowly push myself into a more productive pattern so I don’t feel I am just wasting time.  The only question now is where I want to put my focus as there are still many things I enjoy doing (but I know I can’t improve my health if I try to be productive with all of them).

Have you made any resolutions this year? What inspired you to do so (or not)? 

Give it UPtober

So it is already October (I would say, where does the time go but unfortunately I know for me most of it has gone into using my little energy to battle illness and depression), and having come across GIVE IT UPtober on Facebook, I thought that it'd be a good idea to kickstart my month by joining in.

The general idea is to give up one luxury for the month and donate the money you would have spent to Invest in M.E. which is a great charity that uses most of its funds to do research into M.E./C.F.S. as so little is still known about it. Or you can just donate in support of those giving up things such as Facebook, or just because you believe in our cause.

I will be giving up Coca-cola. A few years ago I switched from diet cola to regular (I now mainly drink coca-cola life), and then cut it out of my life except for the occasional one at the pub. Somehow over the past few months it has slipped its way back into my life to the point of having mini bottles of the sugary stuff in my fridge. I need to stop drinking it as it's not really benefiting me in any way, and we really need research done so myself and the thousands of other sufferers can start living our lives again.  Despite the fact that both of those things are completely selfish, I am making myself feel extra virtuous by giving up a bad habit and supporting a charity by joining in to Give It Uptober.

If you wish to donate simply go to Just Giving, or text GIUT88 (£1 to £10) to 70070 E.g. GIUT88 £5

A Quarter of 2015

So over a quarter of the year has gone and I can’t help feeling I have done nothing with that time. I haven’t been meeting my yearly goals; I haven’t been writing blog posts; I am behind on my reading, and so on. However, I have to take into account that it hasn’t been a good start to the year. For reasons I don’t really want to share I was left without carers for a month or so. On the one hand it was a good chance to see what life would be like without them, on the other hand it became increasingly clear it made my life significantly worse. Thankfully that’s been sorted now (and the new care company so far seems much better) and I am beginning to come back from that awful experience which affected my depression as well as my physical health.

I finally feel there is a chance I can start moving forward again. Spring came and it motivated me, but then it seems we have jumped to summer and the heat is only making me more lethargic and unwilling to actually do anything.

There are many days when I feel like I’ve achieved nothing, but I have to remember I usually do some reading, have a shower, talk to the carers, do some cross-stitch, and get myself dressed which is way more than I’ve been able to do continually (every day) for quite some time. And every day I try and motivate myself to get a little something done, whether it be sorting out my flat (as I still haven’t fully unpacked even though I’ve been here 2 years), reading, or writing. It’s hard not to focus on the time ‘wasted’, but I know it’s the future I’m working towards, and though sometimes it feels like I do nothing, I still need plenty of rest to continue improving.

So I have to hope the worst of the year is over and I can start trying to get on with my life again (now I just have to work out where to put my focus as there are so many things I want to do).

How has 2015 been treating you so far? Do you see a difference in your life as the seasons change?

Birthday Presents Please

Somehow February has come around somehow I still feel stuck in November and way behind on any possible ideas I could have had.  But most importantly, it is now only a month to my birthday.

While I do feel birthdays should be celebrated loudly and with plenty of cake and sprinkles, that's not why I'm writing a post about it. Two years ago I asked you to donate to AYME for my birthday and got an incredible response.  This year, I'm hoping I will get at least half the enthusiasm of two years ago.

This year I am raising money for Invest in M.E. (IiME) instead of receiving presents. As it's my 27th, my aim is £270 but honestly, every penny donated means the world to me and will hopefully lead to some of my birthday wishes coming true. Admittedly, I don't expect M.E. to be cured over night; in fact I don't expect there to be a cure in my lifetime, though that won't stop it being my birthday wish each year.

I have chosen IiME because not only does it offer information and support to those with M.E. and their carers, but it also invests in very important research. Unfortunately, M.E. research isn't high on the list for investors, which is why IiME is different from other charities. I know research into the causes of M.E., even being able to diagnose M.E., is a long way off (as I said, I don't expect too many break-throughs in my lifetime), but without this research nothing will change.

M.E. is not fun to live with. It has taken almost everything from me; thankfully not my family and a few friends and I'm so grateful for that as I know not everyone dealing with this disability is so lucky. I am not able to work; or dance. I can rarely go out on a whim, go shopping in more than one or two shops at a time(without a wheelchair); or cook a proper meal. Even the things that keep me sane like reading, writing letters, cross-stitching, I can only do for a short period of time.

Because of this, I want to raise money for a charity that focus on researching M.E. in the hope that in the future no one has to live with this misunderstood and sometimes highly-debilitating disability.

I know my birthday wish is a big one, but unless you can magically disappear M.E. from the world, a few pennies is all I'm asking for in the hopes that one day it will become true. I don't care if you can spare £10, £1 or even just 10p - every donation will be the best present you could possibly give.

To donate, click here, click on the button at the top of this site, or donate by texting TEBD88 to 70070

Thanks for letting me ramble, and p.s. I plan to do this every other year with a different charity each time.

Happiness

I am now in my fourth year of being severely ill, but the progress I've made over the past year gives me hope that one day I will be joining the rest of the world outside my door once again.

But, and this is the hard part to accept, a lot of that hope of happiness hangs on the assumption my health will improve.  While I'm not unhappy at the minute, I don't think I can ever be truly happy while this ill. I'm not saying I need perfect health - enough to work part-time and be able to see my friends and family often is all I'm asking for.  But I need my health to be happy.

I'm sure this goes against everything we are supposed to believe. We are constantly bombarded with inspirational stories where people attribute their happiness to having lived/ living through illness and pain.  Sometimes I worry I should be happy because of this experience, but the truth is I'm not.  Being ill hasn't improved my life. Yes, I am more aware of how grateful I am for the little things like being able to eat what I want and having the internet, and yes, it has led to meeting new people, some of whom have become good friends. But that doesn't mean I'm happy with my life right now.

I'm sorry if this feels depressing, that's honestly not how I mean it to come across. I simply feel others need to know that being ill doesn't mean being positive all the time, or being happy that this happened to us.  It doesn't mean we are supposed to be inspirational and appear strong all the time.  It doesn't mean we are enjoying the fact we cannot work or even go to the shops when we like.  And I'm certain I'm not the only one who feels this way (and if I am then guess I’m more of a unique little snowflake than I thought).

My Past and Future

Perhaps it's because I'm so ill, I have a habit of romanticizing the past. 

With the way my life is now, there isn't much marking time for me. Seasons are changing and half the time I don't even notice because I'm sitting inside my cosy flat, only aware of the world I am a part of through my laptop screen.  

Today I watched a video that reminded me it is fresher's week at Universities across the country.  Worse, it made me remember a few years ago when I was at uni, one of the happiest times of my life.  I'm aware I was happy because I was fairly healthy and able to go out, I had wonderful friends, and later, a wonderful boyfriend. 

Of course, I wasn't aware at the time (at least not all the time) I would remember it as being the happiest time of my life. I had depression, and I struggled to balance my life.  But that time is what I now associate happiness with.  While initially being reminded of that time hurt because it's something I no longer have, and while I could spend all my time wishing I could back, the past is the past.  It's a time in my life I can never go back to; and honestly I don't want to.  

Instead, I'm focusing on my future. Right now my health isn't great, but every day I try and remember the hope I have for my future.  I know it won't happen overnight, and I know it's not something I can simply wish into happening, but every day I can use that hope to take a small step forward to the future I want, a future filled with happiness.  I can't even imagine what that future will look like, but I know it's going to be amazing.

And I'm so super excited at the prospect of new experiences, new friends, new love.

Moving...to the Sofa

For the past year or so I have done everything in/on my bed. It has become my place to sleep, eat, watch Netflix, go online, read, stitch, etc (you get the idea). This week I have finally moved over to the sofa. It’s less than three steps away (or it would be if that side of the bed was tidy!) so isn’t far. But to me the sofa is a whole new world to explore. The main reason I wanted to move away from living in my bed is to try and recondition my mind to know that the bed is for sleeping and resting only (okay, and acts of nakedness); I’m also hoping it will help with some of the back ache I get from slouching on a bed all day.

 So far it seems to be working, though it still feels unnatural to sit on the sofa ; it’s still a decision I have to make every morning.  But I have noticed I am already a lot more motivated, especially in sorting out the flat (progress is slow, but at least it’s being made). The only real issue is the window is now directly behind me so at certain times of day I have to shut out the natural light if I wish to see the screen of my laptop; and I haven’t quite worked out the most comfortable position even with all the cushions I have to help me.

Moving from the bed to the sofa might seem like a tiny insignificant step, but for me it is a step towards the life I want to be leading. They say the only way to create change is to do something different, and so here I am, sitting on the sofa.

A Miracle Day

Today I went to my local grocery stores (using my electric scooter as always). It doesn't sound a lot, but to me it was more like a miracle.

On Friday evening I went to the Scouts meeting as I usually manage every other week. On Saturday I spent 10 hours at a local event which Scouts was a part of. I don't even remember the last time I got up at 7 am. While there I mostly sat in the tent showing kids how to decorate biscuits. Though, to be honest, not many seemed that interested as there were bouncy castles right next to us.

If I had attempted such a long day a few months ago I would have been bedbound for at least a few days at the very least. And that's what I expected this time - I felt it would be well worth it to be a part of a Scout activity that wasn't just the regular meeting.  I am in a lot more pain and more exhausted than usual, but I am still functioning enough to make myself lunch without an issue and still managed to go out today.  I am planning on spending most of this week resting, but I have to admit I'm in a bit of shock at how little my weekend seems to have affected me (of course, I could be saying this prematurely as response symptoms don't always arrive straight away, though for me it is usually 2 days later which would be today).

I know I have been saying to people that I am slowly improving. It's something I am constantly telling myself as well, I think as I still can't fully believe it.  That's why it's so important to document when something like this happens, to show me as much as you that it's true and I really am improving.  Still a very long way to go before I can live any semblance of 'normal' life but I am stepping forward and that's enough for now.

Ricocheting Emotions

Over the past few months I have become increasingly aware of my ricocheting emotions.  While my anti-depressants help me not want to burst into tears every few hours, it seems that all my other emotions only know the intense setting, and the worst thing is that most of the time they are set off by something completely mundane.  It makes it so much harder when I know I'm being unreasonably upset, angry or enthusiastic, especially if I am around others (as the last thing I want to do is take it out on the few people I actually get to see in real life).  The real challenge, though, is that I want to feel.

In the past I have experienced complete numbness, and when I started feeling again I vowed I'd always do my best to never go numb again.  But I'm beginning to wonder if the state I'm currently in - flicking between extremes of emotions that can change without any warning - is just as bad. I have gone from one extreme to the other, and as it's something that affects how I look after myself (if I'm upset all I want to do is eat crap for example), I think it's time I tried to find a middle ground. The only problem is that I have no idea where to start.

If you also suffer from hormonal-type emotion extremes I'd really appreciate any ideas on how you keep it together.  For me, the most important things are warning those I'm with if I suddenly feel upset or angry; and focusing on the fact that each emotion will pass, and while they are important, they are not the whole picture.

My Weight Issues

For most of my life I have taken pride in the fact that I had no issues with my body. Growing up, I wasn’t the skinniest or fattest (though I was the shortest), but I was happy with who I was and how I looked – I honestly didn’t care what other people thought.  And for that reason I haven’t written much about how weight-gain due to M.E. has affected me emotionally. I have been ashamed of my feelings, because I haven't been happy with my appearance.  However, after reading this post by Katie Brook, I knew I had to also share my story, to enable others in this position to know they are not alone, so here it is.

Four years ago I started to seriously struggle more with my health, and consequently started doing less. I stopped dancing and I only went out to go to classes at University. The next year (just after I finished University) I became ill and since then have been severely affected by my M.E. I stopped going out unless it was in a wheelchair. I didn’t even cook most evenings anymore, or stand up in the shower.  But my diet didn’t change, and so I started putting on weight.

I didn’t even notice at first, as despite everything I was still able to focus on the positives, and I kept the belief that this was just a temporary blip.  But a year went by and nothing got better. My boyfriend and I broke up, and I became more depressed.  This was when I first started not liking my body anymore; and the worst part was that I felt guilty for caring about something so shallow.

I continued putting on weight and became even unhappier with my appearance.  To be honest, it isn’t the weight that bothers me, so much as struggling to find clothes that fit (being short and round is not helpful for this), let alone anything that looks flattering.  And I constantly struggle with the guilt. I have guilt that how I look bothers me, as I know it shouldn’t.  I have guilt because I know I am lucky to be able to eat whatever I want, when many with similar health issues have to use their little energy on eating the right foods for their body.   I have guilt as I know I should and could eat healthier, but I can’t find the motivation to bother sometimes (though my diet has greatly improved over the past year, I still have a long way to go till I’m happy with it).  And the guilt feeds the depression, which makes me crave unhealthy foods, and so leads to a downward spiral I am constantly trying to pull myself out of.

I know I’ll probably continue struggling with my physical appearance for a long while, but once I started to accept that my feelings were okay, it suddenly became a lot easier to focus on improving my health, rather than my weight.  I now accept that I''m doing the best I can and I am happier than I have been in a long while. 

Hot Weather and Determination

At some point over the past few weeks, Summer seems to have arrived. Unfortunately, it has taken with it much of my motivation.  In short - I don't really like heat, I am a Winter person.

However, I am determined to not succumb to doing nothing when I am able to do a little.  My mind never seems to stop buzzing with ideas and plans these days, which is something I want to take advantage of, but I'm also hoping it won't be long before some of these plans turn into reality. I am not the best at sticking with something, as once I get started there always appears something else to think about, but I'm doing my best by taking a few small steps each day which will hopefully build and lead me where I need to go.

That said, I'm also planning plenty of time for resting, even though this weather isn't conducive to it. The danger is partial resting; which isn't really resting, but feels like it is as I'm lying down, but as I'm watching or listening to something at the same time it is actually low-energy activity.

Does the weather affect you in a similar way?

Sunday Shout Out: M.E. Myself and I

As you will know, this past week was M.E. awareness week. I didn't get to share much of what living with M.E. means for me, though I'm sure over time this blog does that for me.

Today I want to share with you someone who has written and created some incredible awareness for such an invisible disability.  Anna is a fellow M.E. sufferer, as well as blogger. This past week she not only posted some very moving pieces, but created and organised #BlueSunday raising immense awareness and donations for The M.E. Association which funds much needed research.

Anna's blog, M.E., Myself and I, is one of the most heartfelt blogs I read, and I honestly believe that everyone has a lot to learn from her.  If possible, please pop over to her Just Giving page and make a donation in her name. If that's not a possibility right now, then I sincerely hope you will visit her blog and/or follow her on Twitter. Whether or not you live with a chronic disability, Anna is a voice that deserves to be heard and listened to.

Playing Catch-Up

Today is M.E. Awareness Day and begins M.E. Awareness week. I was planning on having some helpful posts put up this week, but last week I was so ill that everything in my life has fallen behind.  In some ways this explains how M.E. affects my life more than any 'inspirational' story I could come up with.

With M.E. any periods of not-complete-awfulness are spent trying to catch up with the world (job, friends, driving, etc).

Even when I'm starting to see improvement (finally), and believing there is hope (finally), it is so easy for it to be ripped away again. I spent most of last week lying down or asleep; not watching anything, not listening to anything, only getting up to go to the toilet and get food (and I know I am lucky every time I am able to stand up) - in general I just existed day after day, waiting for life to be able to try and catch up with the online world (as I have already fallen so deep I no longer know if I can ever catch up with the real world).

Obviously I'm lucky that not every day is this bad any more, but M.E. means that for the rest of my life any semblance of life I've built could (and probably will) come crashing down around me at some point, and once again I'll fall behind.

Tired

I am so tired.

I am tired of living in my bed. I am tired of not being able to have a job. I am tired of feeling like shit. I am tired of being depressed. I am tired of being angry. I am tired of struggling. I am tired of doing nothing. Mostly I'm tired of living a life of existing and surviving.

Life wasn't supposed to be this hard. I wasn't supposed to be trapped inside my body unable to live a 'normal' life. I wasn't supposed to have to spend all my energy on fighting myself just to keep on living.

So yes, I'm bloody tired.

I also know that wishing this wasn't my life isn't helping anyone. Most of the time I am able to accept that; this is the life I have to live.  But every now and then it's okay not to be happy with the situation I'm in.  Every now and then it's okay to hate the life I've been stuck with.

Tomorrow will be a new day, a new start. Today I'm hate this existence for it isn't living. Tomorrow I will remember I'm able to live, at least a little bit, and that will be enough - tomorrow.

Treacled Mind

While I wouldn't necessarily classify today as a 'bad' day, it definitely isn't a 'good' day. My first thought was it felt like my body was in a vat of treacle as I have to struggle through every movement. However, this isn't exactly right, as while my body is heavy, it can move like usual. Instead of my body moving through treacle, it's my mind that has to use the effort it would need if I was stuck in treacle (just to clarify, this is all based on assumption as I've never actually been stuck in a vat of treacle!); every movement requires almost all my concentration and mental energy regardless of how it physically feels.

I don't have these days too often, and yet when I have them I find I am more inspired than usual. The prolonged stillness and struggle to even form thoughts somehow leaves space for the really interesting stuff to rise in my mind. Of course, I then have to decide whether it's worth the pain and struggle of writing it down (I am trying to get into using my dictaphone but I'm really bad at remembering to check it afterwards) as otherwise it will quickly sink, being swallowed by the treacle encasing my mind.

A Momentous 'Coffee'

Yesterday I went for a 'coffee' (actually I had a chai latte but it was way too sweet so I got an iced drink) with a friend.

It doesn't sound like a lot, but to me it was a huge deal. To go for a coffee meant getting the bus by myself and then relying on my legs to get me to Costa, back to the bus stop afterwards and then home when I got off the bus, not to mention sitting and chatting for ages. I also managed a walk around Poundland as well (where I picked up some very cute cupcake cases) which is in incredible.  I know it probably wasn't my smartest idea as I am planning to go out tonight, and already I am feeling the pain from doing too much; but at least I now know I can do it.

I know I have been improving since moving into my new flat, though sometimes it feels as though I am taking steps backwards instead of forwards. I have known it, and am hopeful, but yesterday was the first time I imagined that I could really get my life back the way it was before.  I know I still have a long way to go, but I'm starting to really believe it, as opposed to simply acknowledging it.

Of course I will likely always have to be aware of my M.E. - it isn't a disability that disappears completely - but I'm starting to imagine a life with a job and a social life (that isn't retained to Twitter) and I can't wait to be 'normal' again.

So going for a coffee may not be a big deal to everyone, but for me it is another hurdle I've finally managed to cross.

Sunday Shout Out: M.E./C.F.S. Diary Pro (App)

One thing that is often recommended for those of us living with chronic disabilities such as M.E. is to keep an 'energy diary'. Basically this means staying aware of how much we are resting, and how much low/medium/high activity we are doing. Of course, this varies from person to person, as everyone's energy level is different - for example, taking a shower is a high-level activity for me now, but I know that for many people showering isn't something they would classify as difficult.

Anyway, I was advised to do an energy diary when I was first diagnosed; and I did, for a couple of weeks. Honestly though, I found it annoying having to remember to write things down and highlight the colour etc.  Recently I became aware that as my health has changed so much, I should start keeping an energy diary again. I resisted starting one, as it's not a 'fun' thing to do, and if done on paper, it does cut into my available energy.  So I Googled to see if there were any apps I could use to keep track of what I'm doing, and was amazed to discover one that is actually designed for people in the same situation as myself.

M.E./C.F.S. Diary Pro is an app where writing down what kind of activity I'm doing is as easy as pressing a colour-code button and then tapping the half hour block it correlates to. Not only can you then easily see how much of each thing you've been doing (for example, I can see I need to rest more often), you can add in how bad your symptoms are and access graphs showing the data over time. Of course, I wish the app was a little more adjustable to the individual case, but it is still definitely worth the £4.99 (though it's on offer this month as the new, updated version has only just been released).  I am certain I will be using this app for quite a while, and it's much easier than having to map out what I'm doing via pen and paper, as it requires very little effort for me to just press a few buttons instead.

Do you keep an energy diary? Have you found it useful? I would also love to know if there are any other apps other spoonies have found useful.

Hibernating and Gentle Stirring

If you follow me on Twitter, then you'll know that the past few weeks haven't been my best. My M.E. has reared it's head, causing me to struggle to do the few things I had previously been able to do without much issue (such as going online, making breakfast and lunch, etc).

Just before Christmas I was beginning to see a slight improvement in my health, and was beginning to have hope that one day I would return to a 'normal' life. This has made these past few weeks all the harder, as to be honest it has been disheartening to go back to not even being able to read as much as I would like, whenever I'd like.  In a way it felt like taking a step forward, only to take a step back. Thankfully I have had the support of many wonderful 'spoonie' friends, who have made it possible for me to fight the downward spiral my depression, frustration and anger was taking me.

Michael Nobbs made January a month of hibernation. I hadn't intended my January to follow suit, but my body clearly had other ideas. Now that my emotional and mental state have come back to positive, I'm planning to join Michael's month of gentle stirring in February (can't believe that tomorrow is February, it seems far too soon), by committing to working on a project for 20 minutes every day.  20 minutes may not sound a lot to some people, but to me each 20 minutes of work will likely need to be followed by 90-120 minutes of full resting, and of course, 20 minutes is better than none.  If you'd like to join in, you can find out more here, and I would love it if you let me know in the comments.  The project I will be working on is one I started last year, and feel it's time to continue and hopefully finish. I hope you will understand that I won't be sharing the specifics here just yet, as from experience I have discovered that I have a much better chance of finishing if I don't talk about it much.

On the plus side of the past few weeks, I have had plenty of time to think without planning or hoping or dreaming, which has left me feeling open and ready to be filled with new ideas. I've also been watching Charmed on Netflix (I'm just starting series 3 so no spoilers please), and wondering why on earth I waited until now to give the show a chance (actually, I know it was because I read a few of the books when I was a teenager and hated them).  I've also been watching White Collar when I've been feeling up to it (shows like this use more energy than you'd think, as it requires me to actively pay attention the whole time to actually enjoy it), and have a very long list of films and shows I want to watch in the future.

Overall, I don't think this was a wasted month, as it's given me the time to recover from the holiday season (admittedly, I'd like to have recovered earlier, but that's life with M.E.) both physically and mentally, and I'm back to hoping and dreaming about the year to follow.

A Musing, A Ramble and Thoughts on M.E.

For those of you living without a chronic disability, the chances are you won't really get excited in the same way I'm about to.

Today I started reading the next book on my ever growing TBR (to be read) pile. It's a women's literature book and I've only read the first few chapters, but I just had to share a few sentences. The first sentence is from the end of the first chapter:

Five years ago Eileen had been diagnosed as suffering from M.E. and ... there was a limit to what she could do.

Eileen is the main character's mother, so while she's not (so far) a big part of the story, she is in the main group of characters in my mind. So when I read the above sentence, I actually had to stop and reread it. Surely I had got it wrong. Surely the author didn't mean the same M.E. that is the debilitating and life-changing (and not usually in the good way) chronic disability that I live with.

And later on:

Eileen wasn't getting enough rest, and if that went on for too long, Harriet (the main character) knew her mother would be stuck in bed for days. ... Just as soon as she started to feel well and her energy levels increased she invariably overdid it and was back to where she'd started, feeling ill again.

And my favourite:

...before M.E. sneaked its way into her life and sapped her energy...

So why did these references surprise me so much? Because, other than books that are specifically written about M.E., I have never come across it in fiction before, and definitely not so casually added to the story. And as you know, I've read a lot of books.

While this book isn't 'new' (2004), I can't help but feel a surge of hope at seeing M.E. included in a book this way. It marks, at least to me, the idea that people in general are becoming more aware of it. When you live online, talking mostly to people with chronic disabilities, it's easy to forget that the rest of the world doesn't have much of a clue of what is happening to us.

In some small way it also felt like a validation. I know it shouldn't have, I know what I live with and what it has done to my life and to others' lives, but seeing it in print made it suddenly seem more real. While this may not be a bad thing, especially if M.E. starts to be seen as 'real' by many who currently disagree, it has made the little bit of hope that this is just a bad dream die a little more. Just to be clear, I'm still hopeful and positive about improving. And I'm not so blind as to think that I can just wipe these years out of my mind. But it is pretty overwhelming and ignoring my reality is sometimes the only way I can cope.

Okay, so this post ended up going in a completely different direction from what I planned, but hey, that sometimes happens. And if you're curious, the book is 'Love and Devotion' by Erica James. Is it bad that I'm thinking I'll have to read more of her books just because of this?

Long Days and Changes

I stayed with my parents over Christmas and New Year, and since I've got back, the days suddenly seem extremely long.

When I was with my family I spent most of my time chatting or watching things, or going out (thanks Kaz for pushing me all those times in my wheelchair), and of course rested when I was near collapse. Now it is back to just me, alone in my flat.

I realise that probably sounds a lot more drear than it is. It's just that I can't work out why I now seem to have a lot more hours than I did before visiting my family.  I am resting just as much, more actually; but the rest of the time I am (mostly) more focused on achieving what I can between rests.  Even over the weekend where I pretty much slept the whole time to recover from my 'holiday', the days seemed so long.

On the one hand this is kind of nice as I have a lot more time to play with (I know I don't really, but that's how it feels), and therefore I've been doing a little more. Of course the consequences to doing more, is that I'm in a lot more pain than I'm happy with.  I guess it'll take me a little while to rebalance myself.

However, I am trying to be more aware of my time. After all, the definition of insanity is doing the same thing and expecting a different result (or something along those lines). While I'm not claiming in any way to be sane, I do want to instigate small changes into my life. Now my health is starting to improve I want to make sure that continues, but I also want to make myself ready for when I find I am able to join the rest of the world (getting a job, learning to drive, etc). I don't think it will happen this year (and that's not me being pessimistic for those of you into positive thinking), but I do feel this year is going to be a major stepping stone to my future (okay, technically every moment is a stepping stone to the future, but you know what I mean).

I plan to do a few posts on the changes I'm making, but other than that I honestly don't know what else will find its way onto this blog, so I guess we'll find out together.