2014: A year to be proud of

Is it just me, or has this year just raced by? 

It doesn't quite seem possible it's been whole year since I welcomed in 2014, stood under a canopy of umbrellas straining to see the London fireworks as they reflected brightly off the buildings surrounding Trafalgar Square. 

And yet, here we are. It's December 30th and I've spent the best part of my day littering my bedroom floor with discarded dresses in a decidedly futile attempt to decide on an outfit for tomorrow night. Do I want to be comfortable or glamorous? Comfortably glamorous? I get back on you on that one.

Naturally, as the year draws to it's close, we cant help but look back. We ask ourselves not only where did those months go? But also how did they go? For me, it was pretty up and down. A roller-coaster of a year. But that's life with ME. There's been bad times, terribly bad times, but as I look back I can see there's been so so many good times. In fact, for the first time in a number of years, I can confidently say this year's been better than the rest. 

While my year may be ending with ME once again in tow, it doesn't feel quite so bleak. I'm still unwell, and there's a chance I may still be unwell when I wave goodbye to 2015, but things are certainly on the up. My health may not have improved as much as I may have hoped, but I've got a better outlook now, I've got better coping mechanisms and I've got better control. 

In the spirit of positivity I've taken a look back on some of my greatest achievements this year, some of which I'd have never thought possible. Seeing them written down, I couldn't be more proud of myself for how far I've come this year, how much progress I've made and how much stronger I am. Even if 2014 hasn't been your year, tucked away somewhere, maybe on a rainy afternoon in April or a warm summers evening in July, there will be something, however small, that you've achieved. You don't have to shout it from the rooftops with glee, you needn't even note it down, but think about it, just for a second; what have you done this year to make you feel proud?

1. Graduated. Graduating is a fantastic achievement at the best of times. But to do it all with an incredibly poorly body and still get a 2:1 is something I'm pretty damn proud of. I'm not going to bang on about this too much as I've already done that here.

2. Travelled to America for 3 weeks. Though nothing, not even a particularly bad relapse, would have kept me from heading to America to be reunited with my boyfriend after three months, I'm incredibly grateful my body behaved itself when the time came. Though it was tough and I needed a lot of down time when I returned. I managed it. Three weeks of back-to-back sight seeing and a trip to NYC. If that doesn't show progress, I don't know what does! You can read all about it here.

3. On the road again. Though I passed my test over 2 years ago, I've had neither a car nor insurance in that time, so I've driven very little. I'm finally insured now on mama's car and though it's been stressful at times, I'm so glad I've got the freedom of driving now. I'm even getting a little better at parking.

4. I worked. Ok, it was an internship, but it was in a proper office doing proper things.  A year ago I'd have never thought this possible, or at least it was simply a dream. Though only two days a week, the internship was tough and showed me I'm not ready for work just yet. But I made it to the end. I had a wonderful experience,meet some great people and even got a certificate.

5. I got me a blog. I'd thought about blogging for a long while but never had the guts to just go for it. In June this year I took the plunge and decided to give it a go. I'm not the best at blogging. I always forget to post, but next year I'm going to try to be better *news years resolution*. Anyways, it's still only a  baby, but I'm proud of it.  

Wishing you all the happiest new year!

Alice

x

The benefits of being a realist

Listen up my darlings, I'd like to tell you story. 

Do you watch Modern Family? If you're a regular reader of my blog, you'll know I'm a huge fan of the show. Recently, in true spoonie style, I've rewatched the whole show again. From the start of season 1 to the end of season 5, my bofriend and I have watched every episode in preparation for the new series. Through our manic and incessant watching we've come to a great, life changing realisation. We are Claire and Phil. I'm the naggy woman cringing at my partners jokes and he's the kinda guy who might bring an Alpaca home, just because.

Why am I telling you this adorable but seemingly irrelevant tale? Because just like Phil and Claire, Jamie's a dreamer and I'm a realist- or as he'd say, I'm a pessimist.

I'm not. A pessimist. But I will admit I am a realist. It's hard for me to look at things and see the positives if the negatives are so glaringly more likely. I'm not a risk taker and I'd be a terrible gambler. I'm just no good at betting on the little guy, the underdog, the slim chance. I'm not gonna tell you the glass is half empty, but I will be the one to point out that it's no more likely to be half full. And while I hope and pray that one day I will recover fully from this horrible illness, I can never lose sight of the fact that chances are getting slimmer with every passing year. 

I know this may sound depressing, and like I'm not giving myself enough of a chance, but honestly that's not the case. Infact, thinking realistly rather than positively has been my best coping mechanism as of late. Sound crazy and counter productive? I know. But let me explain.

When you suffer from an illness as widely misunderstood as ME, you begin to notice that while people aren't prepred to begin to understand your illness they are exceptionally willing to give advice. Advice on something they know literally nothing about. One of the more common pieces of advice is that if I thought more positively I'd get better. Would you tell an amputee that if they had more positive thoughts their leg would grow back? No. No you wouldn't. So shutup.
Anyway, while positive thinking will not cure ME in any shape or form it does help many suffers avoid depression and get by day-to-day. I am in many ways one of these people. I focus on the little things that make my life great, I surround myself with people I love and I'm forever grateful that I manage a (sober) night out every once in a while. But I believe thinking too positively is a hindrance rather than a force for good- especially for a chronic realist like me.

Last year I met with an ME specialist for the first time. In the letter he sent regarding our meeting he noted that my prognosis wasn't great. The only upside? I had no unrealistic expectations of my recovery. The main thing helping me get better was not an unwavering faith in the cause, but the understanding that I might not.

This goes against everything I'd previously been told. And to be honest I think it's helped more than everything in my recovery.

If I spend my days assuming that I will certainly one day fully recover, I'm constantly striving towards a potentially unachievable goal. Something both highly unsatisfying and demoralising. However if I accept I may never fully recover, the smaller milestones become unfathomable achievements. 
They say that when you lose something you have to go through a period of grieving for what you've lost before you can fully move on with your new life. By having a realist attitude towards my illness, that is what I believe I m doing. I have days where I grieve for the life I've lost. The career and Independence I'll probably never have. But in accepting I may never fully recover, I've also come to appreciate the future I would never otherwise have had. A future that may be slightly less conventional and societally acceptable-but an awesome one all the same.

I'm not saying you should follow my lead. If you've got the mental strength to fully believe you will recover then I envy you, I do, and I wish you the very best. But next time you're not feeling so positive- don't feel guilty. Embrace your inner realist and your new future- you may be surprised by the life you uncover.

I'm gonna leave you with my favourite Modern Family quote, just because it's beautiful.

x

*I'd like to note that I am not downplaying the importance and brilliance of positive thinking, or encouraging negative thinking, at all. I am simply sharing my own beliefs and experience of what works for me.

Health and Halloween

October is always one of my favourite months of the year. The nights get longer, the weather gets cooler and mumma starts adding dumplings to our dinner to fatten us up for the winter. 

It's always a super busy month for me as its full of birthdays, oh so many many birthdays. Growing up, this meant sweets at school more or less everyday day; now it means lots of lovely meals out with friends and family, cocktails and wine. After a month full of baking cakes and writing cards for other people I get to celebrate my own birthday at the end of the month- I turn 22 on the 26th October, put it on your diaries folks. 

As well as all the autumn cuddles and birthday parties, October brings with it... Halloween. I freaking love Halloween. In less than 2 weeks, I will finally get the chance to wear the costume I've been planning for weeks, and I cannot wait. But before then, I'm gonna snuggle up with a nice hot chocolate and a toffee apple and force my boyfriend to watch Hocus Pocus. It's one of my favourite ever films, and as far as I'm concerned, it's just not Halloween without it. 

10 words that have a different meaning when you're chronically ill

As you may or may not know, I'm an Essex girl. And while my home county may get a bit of stick for it's high proportion fake-tanned women (and men) and rather recognisable accent, I wouldn't wanna call anywhere else home. For this reason, articles like this one unashamedly fill me with a little bit of joy- even if they aren't always 100% accurate. After a bit of a browse around the Buzzfeed website, I discovered there was one of these lists for a variety of counties, countries and groups- Manchester, New England and students to name but a few. But was there one for us chronically ill spoonies? No there was not. 

Over the years I've lost count of the times a well meaning friend has informed me that they 'get tired too' or that a little exercise would do me good because it helped them when they were ill... 
No, no, no, no, no. 
It's difficult to explain to others that their tired is not my tired, their pain is not the same as my pain, and exercise for me is walking to the postbox, not spending hours at the gym. While I keep a calm exterior and politely nod in agreement, all I really want to do is throw a childish tantrum and scream IT. IS. NOT. THE. SAME (but being a mature twenty-one year old adult, I do not do this).

I know my illness is hard for those around me to fully understand and luckily for me, following my diagnosis many of my fiends took it upon themselves to find out as much about M.E as they could. But if you're still wondering just how different life can be or just what the hell I'm talking about a lot of the time, here's a little taster...

A bit about M.E.

 I've already told you a little bit about me, but now I think it'd be useful if I introduce you a little more to the illness that's prompted the writing of this blog- M.E.

M.E, or to use its rather long and hard to pronounce full name, Myalgic encephalomyelitis, is to be honest, a bit of a minefield. The vast multitude of symptoms and lack of a definite cause make it both hard to diagnose and hard to understand.

 Back in my pre-diagnosis days, I scoured the internet in a desperate attempt to self diagnose the illness that I believed was staring my doctors right in the face. The problem was, with so many varying symptoms, there was so much to rule out- anaemia, Lyme disease and thyroid problems to name but a few. 

I knew that for number of years I'd been a lot more tired than could be considered normal, but what I didn't know was that so many of other, seemingly irrelevant problems I had day-to-day all had the one underlying cause, M.E.

Therefore, believe me, I know how confusing it can be. Before I could even begin to get those around  me to understand this 'new' mystery illness I was suffering from, I had to fully comprehend it myself. So now, with a fair few years of M.E know-how behind me and a number of the symptoms experienced at one time or another, it's my turn to help you. Whether you're looking for a bit of information or simply just reassurance that you aren't alone, hopefully I can be of some use :) So here it is, my short but unfortunately not so sweet guide to the gloriously unique illness that is M.E!