Ok, so when it comes to snow I turn into a six year old and get majorly excited! Most of this excitement is when the snow is falling, and I can't help but sit by my window and take in the view. I honestly think falling snow is one of the most beautiful things to look at <3 But when it comes to going out in it, I have to take advantage because there have been times where I just wasn't well enough, and it feels like I'll never make up for those torturous years where all I could do was look upon the snow from afar and not go out and play in it.
The past few years we have had more than our fair share of snow, and I was starting to fear that this would be a rare snow-less winter, but yesterday the snow just didn't stop falling and by evening it was pretty thick. I've been out a few times, which has resulted in very tired legs and a very tired Sarah so I think I've had my fill for now. But this is yet another thing that has made me happy this week!
Now if it could just disappear before I have to go out for my CAB appointment tomorrow that would be great ;) Shaky legs on icy ground isn't a good combination!
Recently I've been coming to post blogs on here, writing them up and then saving them as drafts, never to see the light of day. I've figured out the main reason behind this is because I wanted this to be a serious blog, with proper topics and well argued points, but frankly I just don't have the energy right now ;) I'm just getting over a cold (which are hell when you have M.E!) and I'm just about to start my DLA appeal (many attempted blogs ranting about the government, but I can't justify posting a blog post that is 100% RAGE) so I want to focus my mind on happier things ;) Here are some things that have made me happy this week :)
1. The Hunger Games trailer got released this week! A brand new shiny one. I loved The Hunger Games when I read the series last year, and since then friends of mine have read it and everyone seems to be hooked. I honestly can't wait for the film!
2. Charity shop bargains! Recently St Leonard's Hospice opened a charity shop near where I live, and so I popped in for the first time this week. The shop is lovely, and had a great selections of things, especially books! I'm a huge bookworm but due to previously mentioned DLA appeal don't have the opportunity to buy every book I would like at the moment. But when I went in I managed to find a load of books that interested me, for 50p each! And I'm supporting charity :) why not stop by your local charity shop?
3. My volunteer job! Back in December I started a new volunteer job for AYME who I've been volunteering for for over a year now. I love it, and it's a great way to build my skills and keep me busy whilst I'm still to unwell for paid work :)
4. A Storm of Swords: Steel and Snow. I got the Song of Ice and Fire box set for Christmas, and am currently on the third book in the series :) they're pretty big books but I'm struggling to put this one down at the moment, so gripping!
5. F.R.I.E.N.D.S. So the show may have finished years ago but this show is my pick-me-up, no matter how many times I've seen the episodes, they still have me crying with laughter! There is something funnier than Friends, though. That's right - Friends bloopers!
That's all for now, but I'll try and do more posts like this in future <3
I've posted an M.E Awareness video by the lovely Daisy before on this blog, and she has made another brilliant one so here it is!
I find it hard to express just how much this video resonates with me, because I literally feel everything written on those tiny slips of paper, and often struggle to put into words the things which this video says. I'm so grateful to Daisy for all the great work she does raising awareness, because she often says exactly the things I want to but in a way I never could! This part especially -
M.E makes you feel like the world wasn't designed for you
This is so true, and is something I've been thinking about a lot recently. Last week I was at the hospital and as usual, I stopped by the shop there to pick up a few magazines. One of them is a well-known women's mag which I read regularly, usually when I need change and have to break into a fiver/tenner to get it! But I enjoy reading it each time. Only this time, I was reading this magazine and it really struck me just how irrelevant to my life it is. I'll explain.
Most women read these sorts of magazines because you can relate to them, and I have been able relate to them in the past. But when you don't live the life of an average woman because illness is holding you back, you suddenly realise just how different your life is. Let's take a look at the average topics covered in a women's magazine -
Career- well I can't work, as is the reality for many other sick and disabled people. Tips on how to boost your career or make the most of your office hours really don't apply to me. I would love to work, but it's just not possible with my health problems, and so reading about where I should be in my life or how empowering a job can be is only going to get me down.
Fashion and beauty - I like buying clothes, don't get me wrong. But right now my outfit choices are 99% based on what will be comfortable for whatever task I'm doing that day, or more frequently what is the warmest outfit I own so that I don't freeze and end up in even more pain with my joints? Add to the fact that I'm living on pretty much no money at the moment because the benefits system is a joke, then it is very rare I get to spend money on pretty lovely clothes. As for beauty, I barely have the energy to bathe and brush my teeth as it is. I can't spent hours primping and preening and wasting valuable energy on the many stages I should be going through to maintain perfect skin.
Relationships - M.E is a very isolating illness, meaning meeting new people can become difficult, and most of your time is spent alone or with family. I know plenty of people with M.E who are in relationships and so this isn't a blanket thing, more a personal one. But relationships for me have to come pretty low down the list of daily worries.
Fitness and exercise - I've actually become a lot more body conscious since getting ill, but there is really very little I can do about it. I cannot exercise, I can't join a gym or go jogging or swimming or whatever else they're advising. I really wish I could.
So I sit there thinking to myself, when did women's magazines become escapism? Surely they're designed to be the opposite; to be relevant to every day life.
This is just one example. Another thing I used to struggle with was listening to the radio. Especially stations aimed at a younger audience. I'd listen to shows where people were ringing in, worrying about exam results and uni, thinking "that should be me". People would talk about going out on the weekend, and again that's something I can't do.
Everywhere you hit brick walls where your life doesn't permit you to join in with the rest of the world. From not being in education, to not being able to get into your favourite shop because it doesn't have a disabled ramp and you can't face asking them to go and get the portable one. But we muddle on because we have no choice, this is our life and we're stuck with it.
This is probably a bit rambly and I'm not sure I've gotten across everything in the way I hoped, but I just wanted to get it out there.
First post for 2012! My little blog is over a year old, I feel so proud. I really am an awful parent to it, though ;) But I am back, and hoping to blog again more reguarly once I can get my inspiration back. 2012 will see a new M.E Awareness week, and so I should really start coming up with plans for what I'm going to do!
The start of the year is going well so far, with me settling into a new volunteer role and trying to back into a routine after Christmas, and the year ahead is shaping up to be a good one, so hopefully I'll have a chance to blog about all of my experiences along the way.
So hopefully I'll be posting again soon, please bear with me if I don't post for a while, health comes first and my brainfog has been an obstacle lately ;) so maybe shorter more frequent posts on more topics I'm really passionate about is the way to go! We shall see :)
Here's a "thing worth sharing" to echo the one in my first post, DJ Earworm's 2011 mash-up :)
I woke up today (after sleeping in late, something which has been creeping back into my habits lately!) to find that there is an M.E story doing the rounds on the web, and so I thought I should blog for the occasion! The article can be found on the BBC website via the link below, please take a read.
"A study following 2,855 pupils at three schools, published in the online journal BMJ Open, found 28 missed school with chronic fatigue syndrome."
"The researchers looked at every pupil between the age of 11 and 16 at three secondary schools in Bath. The 461 pupils who were absent for at least a day a week in a six-week term were investigated further."
We already know that M.E/CFS affects around 25,000 young people in the UK, which works out at around one student per secondary school. This is something that doesn't come as a surprise to me, and from my own personal experience I've found myself being someone who attends a school where somebody else suffers from M.E/CFS as well as myself, and through speaking to teachers I became aware of previous students that had attended the school who had suffered from the illness, too.
As for the figures about students who are absent from school - again, I'm not surprised. After all, that was me 5 years ago. Attending school whilst having M.E is one of the most difficult things I had to do in my life and one of the toughest periods of my illness so far. Many students who have M.E will be unable to attend full time; I myself went through several attempts at part time schooling, the most being 2 hours per day and the least being 5 hours per week. Of course there were times where attending school at all was completely impossible, and so there were months, literally, where I wasn't in school at all. Eventually in Year 11 I was given a home tutor to complete my education as attending school became too much for me.
Battling the symptoms of M.E every day is hard enough, but school presents all kinds of issues on top of that. The daily symptoms of crippling fatigue, muscle weakness and pain, joint pain, headaches and sore throats are combined with the struggles of keeping up with peers, in an attempt to live a "normal" life. With M.E sufferers missing large chunks of school through illness then it is easy to get behind, meaning time spent at school has to be subsidised with catching up on all the work you've already missed, as well as battling to stay on top of the current workload. On top of that, schools are a hotbed of germs and bugs, and with many people with M.E suffering from low immune systems, one cold caught from a schoolmate can be enough to set you back weeks if not months. For me, walking around the school building became increasingly difficult, and during my time at 6th form I would often find myself coming home only for my legs to give way from underneath me after a mere hour at school.
So much more research needs to be done into this illness, as more and more people become aware of the wide reaching consequences living with M.E comes with. Missing out on school during your teenage years can have a huge effect on people, not only from an educational point of view but a social one as well. School is where we make friends, or where we see out existing friends on a regular basis. M.E is an extremely isolating condition, with many sufferers becoming housebound and at worst bedbound. This is no existence for a teenager, and I hope people will see the news today and realise that we need to be doing more to help these people - not cutting funding and leaving sufferers to deal with their illness on their own. On top of that, in light of these figures then I hope schools themselves will look into this illness more and put in place plans of action for M.E patients. Teachers and school nurses should be educated and fellow students need to be supportive.
I'd urge anyone who is struggling with school whilst living with M.E to contact the Association of Young People with M.E for help and support - details can be found at http://www.ayme.org.uk/
Today marked the first day of officially validating your NaNoWriMo word count, so I can now post this as an officially verified winner! They even added an extra ten words to my word count once I'd validated, cheers all round. So now I've printed out my winner's certificate and added a winner's t-shirt to my Christmas list, what does the future hold? Have I caught the writing bug? Will I be signing up next year?
I can safely say that I enjoyed the experience, which was probably down to the fact I went in with such low expectations and came out with a 50k novel. I've dabbled in writing before now, but never to this extent and it certainly made me consider doing more writing in the future. It also reassured me about going on to study English someday in the future which has become an ambition of mine recently. Plus, I've already started planning out the sequel to this story, as well as beginning the editing process of my NaNo novel. Oh and I've started an entirely new story, too! So it's been a positive experience overall.
Of course I have the advantage of not having an awful lot going on in my life at the moment, so who knows whether I'll have the time/energy/opportunity to be as successful next year, but I'll certainly be giving it a go!
Writing is a mind field of a profession where if I'm to take it seriously, then I have to prepare myself for disappointment. But for now I'm just going to enjoy writing as a hobby and enjoy crafting something I can be proud of at the end of the process. Already I'm proud of the characters I have created, the story that ended up just how I wanted and the amount of words on the page. And I've done all this whilst battling M.E symptoms which makes the achievement all the more staggering for me.
If you haven't validated your word count yet then do it now! :) just go to the "edit your novel" option and click the link.
I can't think of a thing worth sharing right now so I might edit one in later, shh ;)
So I promised to blog about my progress during NaNoWriMo and I didn't. Well, that paid off because today I passed the 50k word count at finished my novel! I'm sure I'll document my experience more fully in blog posts to come but I thought I'd note down some of the things I have learnt on the way.
I can write 50k words in 15 days, who knew?!
Planning my chapters was a complete waste of time. I went off chapter plan on day one and didn't even look at it the rest of the time.
Characters are the most important thing. If I hadn't spent the time and effort thinking about my characters that I did, I would have gotten nowhere.
Music is the best inspiration. I downloaded Spofity mid-NaNo and found some songs that helped spur me on.
Writing that much is going to send your brain into overload. At one point I spelt gesture with a 'j'. I'm still embarassed.
Writing is fun! So much fun. I can't wait to get stuck into more stories. I hope I never lose the love I've found for writing during this month.
I'm sure there are loads more things to say about this month, but I'm too frazzled to remember them. If you haven't given NaNoWriMo a look before and are wondering what it's all about, then I'd recommend it to anyone. It's a great experience. So my ultimate "thing worth sharing" is this wonderful website.
The past few years we have had more than our fair share of snow, and I was starting to fear that this would be a rare snow-less winter, but yesterday the snow just didn't stop falling and by evening it was pretty thick. I've been out a few times, which has resulted in very tired legs and a very tired Sarah so I think I've had my fill for now. But this is yet another thing that has made me happy this week!
