Make way, make way for Team Princess 2016

We're back!! And ready (as we can be) to take on M.E awareness day 2016 (Thursday May 12th) and build on the amazing achievements of the past two years. Team Princess have raised over £10,000 for M.E charities in the UK and Australia through our The Princesses and M.E events. That has gone towards funding biomedical research, drug trials and all the great services these charities offer to help support sufferers and their families. As well as helped to raise awareness for this much misunderstood illness.

Firstly who are Team Princess and what is The Princesses and M.E event?

Team Princess are a group of M.E sufferers and supporters that become Princesses for the day on M.E awareness day to raise awareness and fundraise for M.E charities. Individually each Princess is admirable, courageous, strong and brave. Even though they might not think so themselves. Facing adversity with optimism. As a group we're a sisterhood (including the men) that want the best for one another. Getting each other through the worst days and cheering for them on their achievements.

The Princesses and M.E event is held on May 12th, where members of Team Princess become Princesses and share photos to social media using the hashtags #teamprincess and #theprincessesandME. All in the name of raising awareness and raising money to help give sufferers support and hope. More details on how you can take part this year are below.

When I first had the idea I wanted to not only fundraise and raise awareness but also celebrate some of the fantastic people that I had got to know that shared a diagnosis and soon became friends. People who left me in awe of their determination, their strength, positivity in the face of adversity and their kindness. They were princesses in my eyes.

But I think the word Princess can conjure up images of diva strops (that's the illness not us), of being delicate, fragile and girly. That they are helpless and in need of rescuing, whisked off into the sunset to live a fairytale life. Yes at times we are helpless and feel no one can offer any genuine help, until rescue comes in the shape of a cure or at least effective treatment that allows us to regain a life we can only dream of. But what I see is far from fragile, helpless and hope-less, I see strong people facing adversity with courage and even humour. They're the kind of people that you want to learn from and get to know more. They're Princesses.

This year we want to ensure that that message doesn't get lost. That people don't just look at the photos and think "oh how pretty you look as a Princess." But see the reasons why you are a Princess and that for all you cope with you more than deserve to be a Princess for a day.

So on Thursday May 12th if you wish to join Team Princess and our The Princesses and M.E event what you need to do is:

1) Get in touch and let us know you'd like to take part. Either comment here, Facebook, Twitter or Instagram. Links to which are at the end of this post.

2) Set up a justgiving or btmydonate if you wish to set up an individual fundraising page. This is not compulsory and because many sufferers are too unwell to set up their own fundraising pages and keep up with them group fundraising pages for a number of charities have already been set up, to make things even easier should you wish to help Team Princess' fundraising campaign. You can simply share the links,(please note not all event pages for btmydonate have been set up yet but will be added as soon as possible). Here are the links (simply click on the page to go to the page):

Justgivng
Justgiving Team Page
Association for Young People with M.E
Action for ME
ME Association
Invest in ME
ReMEmber
ME Research UK

BT mydonate
Smile for ME
Hope 4 ME and Fibro Northern Ireland
Tymes Trust

I've included more details about our fundraising campaign below. And a guide on how to set up an individual page is available here http://howtodealwithme.blogspot.com/2016/04/how-to-set-up-individual-fundraising.html

3) On May 12th dress up as a Princess. Dress up as much or as little as you like, or are able too. Over the years we have had full costumes, rewearing of wedding dresses, wearing a gorgeous dress you already have, Kate Middleton fashion inspiration, pyjama princesses or simply wearing a crown/ tiara. And let's not forget our men in their full Princess attire. Remember to put your health first and if you are too unwell to dress up on that date then of course you can choose another date should you wish or prepare your photos in advance. The point is you're a Princess regardless of what you are wearing. It's not a competition. Even if you simply use an app on your phone like snapchat or pic collage to add a crown it will still help make a difference. And any men that wish to take part but don't want to dress up as a Princess then being a Prince is great too.

4) On Thursday May 12th (or another date if you are too unwell) share a photo of yourself as a Princess to social media and use the hashtags #teamprincess and #theprincessesandme Be sure to post to our Facebook page too.

3) Alongside your photos write: "Today is M.E awareness day and to help raise awareness I've joined Team Princess. I'm a Princess because..."

Post about the characteristics you share with well known Princesses. Who if you look beyond the girliness you'll find stories of bravery, courage and fighting for what they believe in. Qualities that show you're strength and even your sense of humour. Here are some examples:

I ride around in a carriage/ noble steed. Also known as my wheelchair.

I'm in search of a fairytale.

 I feel like I could sleep for 100 years.

Just like the Princess and the pea the slightest discomfort means a restless night.

Because I have help to do chores and put on my shoes. Sadly unlike Snow White and Cinderella the animals have not been very cooperative to training.

Like Ariel I can't walk on land and want to be where the people are.

Like Belle you want adventure in the big wide somewhere.

Because I have been locked away from the world but never gave up on hope that one day things will change.

I long for the day a fairy godmother will arrive and tell me there's a cure.

Like Cinders staying out past midnight leaves you worse for wear.

Brainfog means that just like Cinders we're likely to leave things behind.

One of the quotes you try to live by is 'have courage and be kind.'

Because I am brave and face the beast that is M.E each day. And just like Belle as each day passes I am learning to tame the beast and find the beauty that life still has to offer.

Being brave enough to try to change your fate like Merida.

You're a warrior, like Xena or Mulan, but battling against chronic illness.

Like Kate and Diana I champion a cause and campaign for change.

5) End your post with: "Myself and thousands more are desperately hoping for a fairytale, for a magic potion that will help treat and cure this villain of an illness. You can help us achieve that by helping us raise awareness and donating at..."

5) Link to either the teams fundraising pages or your own fundraising page.

And that's all you need to do to be a member of Team Princess. We'll be sure to share your photos across our social media too, to help raise awareness and ensure they reach as wide an audience as possible. If you don't want your photo on a certain social media then please let us know.

Once again this year we want to support the cause as a whole which means supporting and helping as many M.E charities as possible. Here in the UK fundraising pages are set up on justgiving for Action for ME, Invest in ME, ME Association, Association for Young People with ME, reMEmber, ME Research UK and on btmydonate for Smile for ME, Hope 4 ME and Fibro Northern Ireland and Tymes Trust. These will be group pages and be open from April 12th.

 You are also welcome to set up your own fundraising page, should you wish to do so, which can be linked to the overall team page on justgiving so that we can keep track of our overall total. Having your own page will be best if you plan to sell or giveaway items in return for donations. If you plan to do this or hold an auction please let us know in advance as there are rules and regulations that need to be put in place which you will need to be made aware of before setting up your page. Also please note that no online raffles can be held due to licencing laws.

 Princesses that wish to set up their own fundraising pages are free to choose which charity they would like to support. We also ask that you respect individual members of Team Princess' choice of charity if they decide to set up a personal fundraising page and understand that their decision is based on their personal experience with that charity and the way they have helped them to cope with their diagnosis. However by being a member of Team Princess you are also supporting the cause as a whole, promoting unity and wanting to help as many charities that do so much for us.

Princesses in other countries that wish to take part please get in touch and we can look into how we can help charities in your country too. We'd love to reach as many charities as possible to help sufferers worldwide.

We'll also be supporting a lovely organization ran by an M.E sufferer called Spoonie Survival Kits, which sends survival kits to help brighten a sufferer in needs day. Money will be raised for these through auctioning an item for each charity/ organization, which will be held on our Facebook page www.facebook.com/MEprincesses. Dates for this auction are still to be confirmed.

As recently announced Amanda Carroll's beautiful paintings, as seen above, will also be auctioned on our Facebook page on the weekend of 21/22 of May. Amanda wishes to raise money for the ME Association. Full terms and conditions for the auction will be available to view on our Facebook page.

But wait there is even more information and plans! In the spirit of wanting to create a postive atmosphere and celebrate the kind, generous pillars of strength many sufferers are, the ones we see as real princesses who help get us through the worst days, throughout May we're going to be holding giveaways. Where each week you will be able to nominate a friend(s) (that has M.E) that you think is a Princess and share the love by stating the reasons why you think they're such a good friend/ princess. Each nomination will then be entered into a draw to decide the winner.

There will be four giveaways in total; one on our facebook page, one on instagram, one that is eligible for international (outside the UK) entries and one in which we celebrate our wonderful carers who take so much care of us. The first giveaway, which will be on our facebook page, will start on Wednesday April 27th and they'll be drawn every Wednesday. The rules for each giveaway will be clearly stated with each giveaway announcement. It's so exciting to think about making people feel special and to be giving away prizes that will help brighten someones day.

Finally watch out for our promotional posters and please retweet/ repost/ share them to help spread our message and raise as much awareness as possible.

On our social media accounts we'll also be trying to create a positive space. M.E awareness week can be quite tough for sufferers. As much as it's amazing to see M.E being mentioned so much and people using what limited energy they have to help raise awareness, it can also hard to see so many posts on your social media feeds. It can be very in your face, a stark reminder of reality and all the adversity; that life has not gone to plan. Because as sufferers we know full well the suffering and devastation this illness can cause. It's almost like rubbing salt in the wound. As mentioned it's difficult because awareness needs to happen to reach people outside of the community but if you are in that community it can stir up a plethora of emotions. So we want to create a little bit of a sanctuary. A place you can reflect on personal achievements and strengths. How you've learned to keep a smile on your face. And a place to celebrate others achievements and give them the support and kindness they need.

We're very excited about this years campaign and cannot wait to see how much of an impact we can make this year. 

Keep up to date with all things Princess on our social media:

Facebook: www.facebook.com/meprincesses

Twitter: @teamprincess4ME

Instagram: @teamprincessofficial

Thank you for reading, and taking the time to learn more about Team Princess.

Queenie
xx

1 weekend, 2 perspectives

For M.E awareness day myself and Ali from All about ME beingamummywithme.blogspot.com thought that for our awareness post we would blog about our weekend meet up a few weeks back. Myself and Ali both suffer from Myalgic Encephalomyelitis and are severley affected. We decided to meet up half way for both of us which is an hours travel for both of us. By documenting our weekend and sharing it from both of our perspectives we wanted to show how even though we both have the same illness and had the same amount of travelling to do how differently we experienced the weekend. And to show how varied the symptoms we get are. This blog post is part of Sally's #may12thblogbomb. You can read plenty more awareness posts on her blog sallyjustme.blogspot.co.uk

 

 

This meet up was planned well in advance and actually took a while for us to find a weekend that neither of us had much on the week before or after so that we could rest before the weekend and rest and recover the week after. Also of course as we are both heavily reliant on our families we needed to fit in with them too. Ali, with her husband and daughter and me with my parents. We also made sure we both booked on a refundable deal due to the unpredictable nature of M.E and the chance that one or both of us couldn't make it. We booked to stay in a Premier Inn as it's a chain that both of us have used a few times and know are good. Familiarity and feeling comfortable when you have a chronic illness is really important. I even know by now to take an extension lead to be able to use my heat pad and charge my phone by my bed. 

 

Saturday

I wake up after only 2 and a half hours sleep, feeling completely drained and in desperate need of more sleep but I can't go back off because my stomach is growling for it's breakfast. I didn't manage to sleep until 7am due to a banging headache that wouldn't shift. It does make me panic that I won't be well enough to go. I message Ali to tell her I might not be able to make it until later in the afternoon after a rough night but fingers crossed I'll make it. After breakfast in bed, made by my Mum I try and get a few more hours sleep. It's difficult as my body feels like lead.

 I wake again at 2pm, still feeling drained and heavy and still like I could use more sleep. I start to panic I won't be able to make it. I lie back down for a bit and let my body come around and adjust. Trying to relax as getting wound up or upset will only make me feel worse. Once I'm able to sit up again my Mum brings me up some lunch. This helps me feel a bit brighter. After that I start to get ready slowly. I clean my face using first aid beauty facial radiance pads (great for when you're not near a sink) put on minimal make up and make sure I don't smell too gross. Luckily I managed a bath the day before. My Mum puts all the things that I need into my bag. I managed to pile some stuff together the day before but as a lot of the things are things I need close by I can't do much prepacking. Mum then helps me to get dressed and helps me downstairs and into the car. I put on my travel bands to help with the nausea.

It's only an hour's journey but today it feels a lot longer and the travelling on top of lack of sleep makes me feel more nauseous but I'm so glad to be on my way. I just try to sit quietly and rest without closing my eyes so I don't feel even more sicky. I feel lucky that I'm actually going. It's only my 3rd time leaving the house in 6 weeks, so I'm feeling thankful.

Luckily once we get there and stop moving I feel less nauseous. I am greeted at reception by the biggest hugs from Ali's daughter on her way back from the park and I am excited to see Ali. I should probably have had a rest first but sometimes you have to strike while the iron is luke warm, plus I can't wait to see Ali. Ali and her family come over to my room for cuddles and chats and I teach Lucia how to make barefoot sandals. We have only met a few times in person but we talk all the time, so it feels like we have known each other much longer. The great thing about having a friend in the same situation means you have an understanding that others can't really comprehend but it's also tragic because you are both suffering. My back hurts though from sitting up without any support.

 Feeling ambitious and hungry we head next door to TGI Fridays for dinner. When the two of us are in our wheelchairs we turn a few heads and also cause a bit of panic when getting a table. The restaurant is busy and the music playing is pretty loud. As we wait to be shown to a table I start to think "oh crap this could end badly." Music can often send me into a crash. Only the week before someone playing loud music made me start to feel like I was shutting down. But I try to push through and just hope that it doesn't happen and if it does well then I'm in company that will completely understand and know what to do. Luckily the music isn't too bassy so doesn't have as dramatic an effect on me. However it is hard to focus with so many different stimuli, the music, a lot of people talking, the conversation at our table, the waiters singing the birthday song every 5 minutes. Luckily myself and Ali get seated at a table in a corner so we are sheltered a bit and once our food arrives that pretty much has our full attention.

 

Once we're pogged and can't eat anymore the effects of the day and being in the busy restaurant take hold. I feel myself getting heavier, the pain in my back is nagging me, causing me to slump and my eyes feel like I'm straining to see. So we're wheeled off to our beds and say goodnight.

In my room I take my pain killers, my Mum helps me get ready for bed and I lie with my heat pad on my back. It's funny to think that the weekend has been about seeing Ali and we are in the same place, yet we are both in separate rooms lying on our heatpads, texting eachother like we would at home, miles apart.
It's only half 8, we could both be in the same room watching netflix and eating popcorn but Ali would have to be wheeled to my room and back, whereas it's best she stays put and lets her muscles recover.

You'd think with so little sleep I'd be able to drop off easily but I'm so uncomfortable from nagging muscles, all the activity in the restaurant having an effect and feeling too hot that I don't manage to fall asleep until 4am. I think also it can be difficult adjusting to a new setting, a different layout, different noises (I actually heard someone play Status Quo Rocking all over the world before they left the room. Just that one song!) different smells, especially a different bed seen as our beds are our nests in a way.

Sunday

 

My Mum wakes me up with a jolt at 7am, opening my door to get my phone charger. I hadn't realised she had my key, but this is something that we sometimes do in case I can't get to the door or need help. Needless to say though this makes me sick, achy and grumpy. Waking up with a jolt is never nice, waking up with a jolt with M.E feels like punishment. Luckily I manage to go back off to sleep for a couple of hours. When I wake again I think I'm not feeling too bad, apart from feeling quite hungry. Ali is already having breakfast so I text my Mum to help me get ready so we can go down to breakfast too.

I think the rush of adrenalin works out well at first. We go down to breakfast, in my chair of course. For the first 10 minutes I'm feeling okay. Even manage to help myself to some breakfast. Ali's daughter makes me laugh by bringing me a straw for my cup of tea, which is great as I'd actually forgot to bring one down. I normally use straws to help me drink, as I often find holding a cup/glass too heavy or my hands shake and wearing tea and burning yourself is not nice. Soon though I begin to feel really heavy and fighting sleep. I find it harder to concentrate on the conversation. My food keeps getting stuck in my throat as I find it hard to swallow and chew from the exhaustion taking over my body. I start to feel overwhelmed and uncomfortable. Feeling really hot and that strange sensation that comes over you before you throw up. I really don't want to leave but I can no longer stay there feeling totally overwhelmed and like my stomach might turn at any moment. Of course though when you are in a wheelchair and unable to propel yourself you can't very well make a quick exit. Just say "excuse me" and walk away.  I tell my Mum that I need to go back to my room. At first she doesn't quite understand and says we will when Dad has finished his breakfast. So I have to be a bit more forceful and say "I need to go back now." That lack of Independence and being reliant on others at times can be so frustrating. And communicating that "now" means "now" and not "in a minute," coming across a total diva. It's lucky though that Ali could understand that I wasn't being rude at all. That she knew exactly what I needed to do and could probably see all the signs written clearly on my face and body language. Interpreting them from personal experience.

Luckily Mum takes me back to my room so I can try recover before going home. I want to fall back asleep but as it's 10.30 and we need to check out by 12.00 falling asleep to be woken up suddenly will only make me feel worse. So I take some time to lie down and do some mindfulness and take some medication to stop me feeling as nauseous. However I decide it's probably best if we leave sooner than later so that I can get into my bed and recover properly.  It's disappointing though because I could spend an extra hour with Ali and I had said to Lucia that we could finish the sandals we were making. So I feel bad to let her down. I know Ali is having a rest though herself after breakfast. Mum packs up all my things for me and I text Ali to say that we are going to leave soon. Before leaving we obviously go say goodbye to Ali and family and have cuddles. It's clear I'm not the only one who's suffering. It's literally like getting a hangover without the alcohol.

My Nanna is always asking me what side effects I get from my tablets and I always say I get more side effects from life than I do from my tablets.

Because I feel so tired and already nauseous the journey back seems long and I feel really sick. It's hard to stop my mind from wandering to the future and how I will cope with things. Potential longer journeys seem impossible. It's so easy to just feel like  giving up because it's left you feeling so horrific. I have to try remember though that it's tiredness talking and I can only live day by day and keep as hopeful as possible. Because even though it's hard and the after effects wipe me out for at least a week, of complete bed rest, I need to focus on the smiles and laughter I've had that weekend. That is what life is about. It's just unfortunate that as a chronically ill person they come with such a price.

Now that you've read about the weekend from my perspective be sure to head over to Ali's blog post1 weekend 2 perspectives   to read about the weekend from her perspective, unless of course you have already done so. I hope both posts have been enlightening and have shown a little bit what it's like to live with myalgic encephalomyelitis. Remember this is us on relatively good days, on our worst days neither of us would have been able to leave our beds never mind be able to meet up.

Thank you for reading

Sian

Princess interview with Princess Jac

Today we're going International, to a land down under to speak to our Royal Aussie, Princess Jac. This year as Team Princess are supporting more charities, Jac will be fundraising for the Australian charity Change for ME.

When were you diagnosed? And were you ill for long before then?

May 1992 2-3yrs

What did you do before you had ME?

Student.

How did ME first present itself in you?
Recurrent viral infections including but not limited to upper respiratory, and chest, severe fatiguability and post exertional malaise, new aches and pains, new headaches, persistent sore throat. Some brainfog.

What is the biggest thing that you miss that ME has stopped you from doing?
Career goals. I wanted to be a doctor, ironically enough. And sport. I do miss my sport. And love. It's hard to find romance when you're mostly housebound.

How do you remain hopeful and/or happy?
That's an ongoing struggle. The friends who've stuck with me through a quarter of a century of illness, my mum and my little dogs (three over the years). And finding the little things that I enjoy that don't completely wipe me out.

What were your reasons for joining The Princesses and ME/ Team Princess?
The need to raise awareness as well as funds!

Do you have any specific plans for what you are going to do for the event?
Still in the planning stage.

If you had 3 wishes what would they be?
Health. Love. And woodland animals to help me with house/garden work.

Which Disney Princess do you most relate to?
Personality wise, probably Elsa from Frozen, but looks, Snow White or Belle.

Thanks Jac, for taking the time to do this interview and helping to raise awareness of what life with M.E is really like.

Queenie x

Severe M.E awareness day

http://www.mookpixie-infofreak.blogspot.co.uk/2014/08/black-dress-selfie.html?m=1

http://lifeintheslowlanewithme.blogspot.co.uk/2014/08/severe-me-awareness-day.html?m=1

"M.E that's that thing where you get tired isn't it?"

No, no it isn't. M.E is an illness. A neurological illness that has been recognised by the World Health Organization since the 1960's. Yet so many people have never even heard of it. Or if they have it is often false statements like the one above. 

I myself suffer from severe M.E. I have very little independance and am housebound about 90% of the time. Ok I might be writing this post from abroad but I'm writing it from a bed abroad and we come here to try and let the sun do some healing. And although my life has changed beyond recognition I know things could be much worse than they are. 

 

Severe M.E at it's very worst can only really be described as a living hell. Unable to move, almost comatose, not being able to recognize your closest family, being so senisitive to light and sound they cause physical pain, tube fed and catheterized. Being so desperate for release from the constant exhaustion and pain but being told there is no cure, no effective enough treatments only tablets that target pain in different ways. Expected just to accept that that is it and to deal with it.

Now imagine being that ill and the police turning up at your home and forcibly removing you from your sick bed and confining you to a mental health ward. As was the case with Karina Hansen. Read my post on her on the following url (apologies I can't do direct link at the moment)

http://howtodealwithme.blogspot.gr/2014/02/justice-for-karina-hansen.html?m=1

This case highlights just how much more awareness there needs to be of this illness. Recently things are changing somewhat. Most recently there is the story of Jessica Taylor a 23 year old girl with severe M.E who has been ill since the age of 14. Confined to a hospital for years in order to be tube fed. As a result she developed osteoperosis and was at risk of braking a bone if she moved. There has been some hope though for her as finally she has been able to withstand hydrotherapy sessions and developed her muscles enough to be able to lift herself up to sit in bed, to stand with assistance and to walk a couple of steps. You can watch the news article on BBC South East on following the link

https://m.facebook.com/BBCSouthEastToday

It is a positive news story for the awareness of severe M.E as it shows photos of Jess pre M.E contrasted with photos taken whilst she was at her worst. The main highlight of the piece is the fact that it has taken 9 years for her to be able to do these very very basic things again. How often do you sit up in bed and then walk to wherever? You probably don't even give those steps much thought. Now imagine not being able to do that for 9 years. It's pretty well unimagineable. Can you imagine even saying my biggest achievement this year was to walk a couple of steps?

However what is important to remember is that Jess is far from better. She is not cured.There is no cure for M.E. Just because she has taken those few steps doesn't mean that she can now walk everywhere. Taking those steps has caused post exertion malaise and it will take her time to recover before she can try again. She is still having seizures and at times is physically sick. However she is over the moon to be experiencing these 'firsts'. 

One of Jess' biggest achievements though is setting up the charity "share a star" which sends a star and other gifts to seriously ill children and teenagers. Having been in that position she knows the importance of having something to hold on to. You can learn more about the charity on the following link.

Lastly I want to share an awareness campaign that started over on Facebook by Janet Smart. The black dress selfie for Severe M.E Day is representative of those many sufferers suffering alone in the dark. It also represents a mark of respect for Sophia Mirza who died of M.E  after being exposed to mistreatment, that left her even worse. Today (August 8th) would have been her 41st birthday and hence why this date was chosen as an awareness date. The day before her death Sophia's mother promised that her life would be a lesson to others and swore to raise more awareness of severe M.E. Learn more about Sophia and her story on their website.

www.sophiaandme.org.uk

You can read some more about the black dress selfie on Sally's blog at 

http://sallyjustme.blogspot.co.uk/2014/08/blackdress.html?m=1

Details of how you can join in and help us raise awareness are on the following poster. Or simply share or retweet the poster. Or other awareness tweets or posts you see. If you care to share Sally's blog post or my own then please do.

My post is also dedicated to my dear friend Irene who passed away in February after 38 years of suffering with severe M.E. Missing her lots today.

I've included some more blog posts at the start of this posts by Anna and Chatlotte other severe M.E sufferers. Again my apologies for not being able to do direct links. 

Sian

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

This is M.E

photo source; Sian Wootton

Today is International ME awareness day and although I am dressed like a Princess ( post to follow soon) to help raise money for charity I wanted to show you how far from a fairytale M.E is. The photos above we're taken on Monday after I had received some really lovely news and got over excited, rushing to shout the news. For a short while I could run on adrenalin and push thoughts of M.E aside. Add that to my next door neighbours doing building work and constant hammering. Each blow literally felt as though it was hitting my body. Such is my intolerance to some noises. It literally made me shake and my heart palpitate. I tried to use ear defenders but they just made my head thump, making me nauseous. It affected me that much that I could barely hold up my phone.

M.E what an unfortunate set of letters, because I feel very far from me, who I was before, the me I'd love to get back. I think the following poem by Mama Chill sums this up perfecfly.

photo source; Mama Chill

M.E really is relentless. You very rarely get relief from one symptom or another. It's a bit like constantly feeling as though you have the flu. Until we find an effective treatment all we can do is try and find a good balance of medication for us. This usually means medication that helps combat some fatigue by helping us get better quality sleep and taking strong pain killers everyday. Trying to find a balance between being constantly sleepy or constantly in agony.

The collage below shows a bit of this:

photo source; Sian Wootton

There can be days when you can get out for a hour or so, for me that's using a wheelchair as I can't walk far or stand up for long. Days where you're not too fatigued or in too much pain.Days when you get out for the sake of your sanity. Completely fed up of staring at the same 4 walls. Days where you will put on a mask to try and at least look a bit less sick. 

But with M.E the biggest symptom is Post Exertion Malaise, meaning you will get a big spike in symptoms after exerting yourself. Getting out of the house, even sat in a wheelchair, can make you very ill for days after. Sometimes exertion as simple as going to the bathroom can have just as bad an effect. Leaving you feeling like you have literally been hit by a bus (I used chocolate to demonstrate ;-)). So again you need to find the balance in maintaining good mental health and some 'normality' and not making yourself worse.

photo source; Sian Wootton

And if it's not my body reminding me I'm ill all I need to do is look around me.  My bedside table has a box full of things that I need close by to help relief symptoms or just so I don't have to waste precious energy going searching. 

From baby wipes to keep me cool and fresh to lip balm to help cracked lips.

photo source; Sian Wootton

My room looks like a teenagers. Clothes and other things ( seriously so much paper) everywhere. From when I don't have the energy to put things away or want my Mum to leave me to sleep.

photo source;Sian Wootton

Most of the time I need to drink anything using a straw because I do not have the strength to hold a cup or glass. Or my hands are too shakey. Some of my friends even use toddler beakers, which makes me really sad. I usually take straws with me if I go out. Even to the dentist to help me use the mouthwash. If I forget then my Mum sometimes has to hold the cup for me. This often leads to some sympathetic looks from on on-lookers. If I'm in my wheelchair too then people just think it's part of being disabled but if I'm not then I can get some very funny looks. In the same vain sometimes my parents need to cut my dinner up for me, or even on very bad days I need to be hand fed.  

photo source; Sian Wootton

The biggest sign I'm ill though is that I have a commode next to my bed. It's been there since around this time last year when my M.E became severe and I developed Fibromyalgia too. A painful condition that affects the nerves, causing over sensitivity, the lightest touch or a duvet can feel like it's crushing you. You need extra help because of the pain in your muscles but you can't stand anyone touching you. Even socks with elastic feel like they're strangling your ankles. But I need the commode for really bad days, to help conserve some energy and not walking back and too to the bathroom. Especially as we don't have a downstairs bathroom. Also it's useful in the night in case I was unsteady and fell on my way to the bathroom. It's rather embarrassing and makes me feel like a toddler but just like my wheelchair it's a way to help me adapt to this way of life. The more I can adapt and make things a little easier the more energy I have to focus on getting better.

So these a few things about my life with M.E. This is my normal. It shouldn't be normal. A good friend recently passed away after suffering for 38 years. 38 years of feeling like you've ran a marathon everyday! 

And that's why raising awareness is a key. Raising awareness to get more people knowing the true impact of the illness. To get doctors interested in wanting to find answers to this medical mystery. Many medical students don't even get taught about it. To show the seriousness to get more NHS funding, not just psychological 'how to deal with it' methods. To research why people develop the illness and what changes in the brain and body occur. That way a treatment can be found. That way a cure can be found. That way people can 'live' again.

You can donate to any of the Princesses on this just giving page https://www.justgiving.com/teams/MEprincesses I'm on there too, and that money will go directly to Invest in ME for biomedical research purposes to help find those all important answers. 

This is our chance at hope

Sian x

P.S ANOTHER POST COMING VERY SHORTLY, SEE THE OTHER SIDE OF M.E