Tuesday, 29 July 2014

A year in review

Photo source: Pinterest

Today marks one year since I started this blog. So happy blogaversarry to me! Where's the cake?! I wanted to do a more in depth post about my reasons for starting the blog and what I've learnt along the way but my brain feels rather numb at the moment. Still recovering after last week. I've been trying and trying to write but my head just won't get into it. So for now I am just going to do a mostly photo based post about my year in the blogging world. 

photo source: Pintetest

I have explained what it's like to have M.E and tried to put it in ways that a non sufferer will understand. Trying to put across that it is much more than just tiredness and that it is a real illness that can have severe and disabling effects.

photo source: Sian Wootton

I have also explained about Fibromyalgia a painful conditon that many M.E sufferers also get, causing painful limbs and hypersensative nerves that can make the simplest of touches to cause pain. A duvet can feel like it's made of bricks. Read my post here.

photo source: pinterest

I have some posts about the things that I learnt at M.E clinic, which thinking back now and knowing the severe side of the illness personally I think in no way was I prepared for it and was therefore left a bit vulnerable at a very scary time. Again, this only goes to show how much more awareness and funding is needed into this illness. What's more it's why starting this blog has been an education to me too as I've been able to discover more as well as share my own experiences. I was actually by the clinic the other day and I wanted to go in and tell them all to use social media to get 24 hour support and understanding. However whilst there I learnt a bit about keeping activity diaries, which you can read about here, to try and establish an activity baseline. Also about the importance of diet and some ways to help you to shop for food and prepare it when you have limited energy and I have created seperate tabs on the blog with tips to help save you some spoons. Read my tips for preparing and cooking here and my tips  on food shopping here.

Photo source: Sian Wootton

Despite everything I have been very lucky to have been able to get away on holiday. Thanks mainly to knowing the resort and people there well but also with a big helping hand from special assistance. Honestly people may moan about Ryanair but their special assistance service is a credit to them. But planning a holiday when you're ill comes with many things to think about and when you don't have much energy to give it can seem an impossible task. That's why I put together a series of posts, a kind of step by step guide to all things holidays when you have a chronic illness. I still have a few more posts to go and then I will collate it all and create a new tab so you can get all the info in one place but do check out some of the posts so far.

Photo source; pinterest

Christmas is a difficult time in the spoonie calendar. So much to do so few spoons to do it with. So actually for me last year I started planning for Christmas in around August (honestly). I should probably start thinking about this Christmas soon. Buying gifts as and when and helping to spread the cost a bit better. Again I provided some tips on how to cope with the holidays when you're chronically ill, which can be read here. I was fortunate enough to get this post as a guest blog on Pajama Daze, a great chronic illness website with blog with lots of positive encouragement for spoonies. Despite having little energy I had a lovely Christmas with family. My Mum needed to open my presents for me as I didn't have the strength but I had some really thoughtful gifts, including 2 spoon necklaces.

Photo source: Sian Wootton

Since becoming ill I try to read as much as possible to keep my mind active. Earlier in the year I shared with you all some of my favourite reads from last year. Read the post here. One of which was Molly Caldwell Crosby's Asleep, which is fascinating. Could this be the origins of M.E and why was it forgotten about? I hope to read it again soon and I'll be writing a blog post about it.

Photo source: Justice for Karina

Earlier in the year marked one year since severe M.E sufferer Karina Hansen from Denmark was forcibly removed from her home and the care of her parents. Having refused psychiatric help knowing it would not help and because the psychiatrist in question did not provide a treatment plan, they thought she was safe. However they managed to twist this around to an act of neglect and that Karina needed to be admitted to a psychiatric ward to make her better. Sadly after a year she is still there and significantly more sick but despite that they refuse to see that their treatment is making her more severely unwell. Please read more about Karina's story here. This is why M.E needs to be recognised as a severe illness by not just a few but by all, especially within the medical profession. M.E has been classed as a neurological illness by the World Health Organization since 1969 yet it still has so much disbelief. This is why raising awareness is so important and is a challenge to us sufferers.

Photo source: Pinterest

On May 12th it was M.E awareness day and I was absolutely staggered by the amount of awareness initiatives going on; mostly by sufferers themselves. It was just incredible to feel a part of a group that were giving it all they could to  raise awareness and fundraise for various M.E charities. People that don't have a lot to give due to the very illness they're trying to raise awareness of but are doing what they can to make a difference. For me it felt like we were giving ourselves a chance, fighting to be believed so that we can get the research and funding we need to find treatments and with any luck a cure. 

Myself and a group of close friends that have got to know each other through social media all embarked on a big canpaign to fundraise for Invest in M.E. We shared our stories, shared articles etc. Then on May 12th we all dressed as Princesses to show that being stuck in bed is far from a fairytale and we might be royally demanding at times but that is due to our illness making us unable to do much for ourselves. I hope to have a post about it soon. Yesterday we found out we have raised £4000, which is just staggering and can help make a big difference. The support we have received has been truly amazing. It was incredible to be a part of such a dedicated team, who all did their best with what little they had. It's amazing how those who have so little to give are actually the biggest givers. 

So there we have it one year of blogging and I've not covered it all here either. I have really enjoyed it. I'll speak more indepth about what I've learnt etc in another post but this blog has certainly been a lifeline in a way. So here's to many more posts and a huge thank you to all that have read my blog. It means the world.

Sian xx

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