Me, Myself and M.E: May 2015

Sunday, 31 May 2015

Youtubers on Mental Health

As May is mental health awareness month I wished to write at least one post on the subject. I wish I could have wrote more but May is one busy month! A kind of follow on from my mini series of mental health related posts back in January. If you would like to have a read of these posts I will link to them at the end of this post. I wanted to share with you some of the videos that are out there where YouTubers talk about mental health and highlight the important role they are playing in raising awareness of these conditions.

It is only within the last year that I have fully come to understand what an impact Youtube is having on modern day society. I readily admit I always thought it was an online version of You've been Framed, a place to post funny videos, mostly of animals, or home videos (no not that kind!) of people doing awful cover versions of well known songs. Little did I know that Youtube is now a genre of entertainment all to itself, that vlogs are becoming the new reality television and that there are people making YouTube videos as their full time job. From people vlogging their daily lives to beauty and fashion advice. Where were these videos when I was a teen, teaching me how to pluck my eyebrows properly and how to apply eyeliner??

However on a more serious note, YouTube has also become a place for advocacy and awareness. Just the other day I was watching some interviews about new M.E research (not that that is related to mental health of course) and I thought to myself, how great is this? During my YouTube initiation I've come to learn that many of the Youtube big names have mental health conditions such as anxiety. I think the mistaken perception is that given they make a living out of making videos and posting them on the internet that they must be extremely confident and comfortable. Therefore to learn that they suffer with anxiety and panic attacks can come as a shock. Some people sadly might not even believe them. However it's important to realise that no matter how much we think we may know people we only really know what they choose to share. These are real people who choose to share parts of their lives with their audience and although it might be scary to share I think that by sharing the fact they struggle and are open about it is actually just what needs to be happening in order to break down the stigma and isolation of these conditions. As well as let others know that these conditions are common and there should be no shame in admitting that you suffer too.

Zoella

Starting with the Princess of YouTube Zoella. Below I've shared 3 videos from Zoella on the topic of mental health. It's well known that Zoe suffers from anxiety and panic attacks and has done since her teens. I'm not sure though people understood just how much it affected her until her vlog "Sometimes It All Gets A Bit Too Much" https://www.youtube.com/watch?v=AX92z4Bny50

where she filmed herself during a low time and letting herself be more vulnerable in front of the camera than ever. Before this Zoe had filmed a video about 2 years ago on anxiety and panic attacks "Dealing with Panic Attacks & Anxiety" https://www.youtube.com/watch?v=7-iNOFD27G4 In this video Zoe talks about having suffered from anxiety and panic attacks for 9 years and how it got so bad that she isolated herself, too scared to do things that could cause her to have a panic attack and consequently turning down a lot of opportunities. To the point that she actually just wanted to stay in all the time for fear of having a panic attack. When she sought help from her GP she found them unhelpful, which is sad. Please remember though that if you are seeking help for anxiety or any mental health issue your GP is usually a good first point of call. They see hundreds of patients every week with the same symptoms and will only prescribe medication if it is really needed, there are plenty of other ways they can help. And if you don't feel comfortable with them ask to go to another GP. In light of this Zoe talks about how she helped herself to control her anxiety and start living normally again. Anxiety is an illness that you have to really dig deep and work hard to control and it really is not a case of snapping yourself out of it. Even with the best help in the world, from doctors and even medication, ultimately you are the one that your success depends on. Learning to be stronger than that voice in your head that says "no you can't" or "what if?" More recently she has also filmed "Anxiety Q&A" https://www.youtube.com/watch?v=Sjuk3WMZByo in which she answers viewers questions about what anxiety and panic attacks are and what they are like to experience. As well as questions from other sufferers asking for her tips and advice on how to cope. It's a great comprehensive video that sheds a lot of light on the condition. Zoe has recently been named as online ambassador for MIND (a mental health charity) in recognition of all the awareness she has raised and how she has got people talking about mental health.

Pixiwoos

"What Anxiety is like for me" https://www.youtube.com/watch?v=Ty74fmcNUFE

In this video Sam talks about how she deals with anxiety and how she worries it's getting worse. Mentioning some of the situations that trigger her anxiety. She speaks about not being worried about seeking help if you feel your anxiety is becoming worse or having a bigger impact on your life. This video is also informative for non sufferers that may or may not know someone with anxiety as it is also from the perspective of her sister Nic. Discussing how she has found ways to help when she knows Sam is feeling anxious and the signals she picks up on. Having someone with you that really has an idea what you're going throgh can be invaluable. It's not easy for those that don't suffer to really understand however hopefully this video will provide an insight into things you can discuss during calmer times in order to help.

Ingrid Nilsen

"Working through travel anxiety" https://www.youtube.com/watch?v=sgGMN8f6Hs4

I wanted to include this one because it speaks about the kind of anxiety and nerves that a lot of people will be able to relate to, that of travelling. Let's face it travel of any kind can be stressful but air travel can be all the more so. Whether it's the crowds at the airport, the stress of security, fear of not having control or claustrophobia, air travel can bring about anxiety. In this video Ingrid has cleverly edited the video so that you follow her from leaving her house, through the airport and and onto the plane with a voiceover of all the tips and advice she has for reducing anxiety during each stage, which you can see her use. I think it's a video that could really help anyone that feels stressed when it comes to travelling and inparticular for anyone with anxiety and panic disorder. Just a sidenote if you do suffer from anxiety or panic attacks and need to travel you can request special assistance, requesting that you board the plane separately (first or last depending on the airline) so that you don't put yourself in a situation where a panic attack could manifest, especially if waiting makes you worse. This is also useful for anyone with learning disabilities such as autism. Don't be made to feel like you shouldn't be using the service because you don't have a physical disability, you don't have to declare your condition when you book the assistance. Making sure you are comfortable and as calm as possible is what matters most.

Jonathan Joly

"Draw My Life" https://www.youtube.com/watch?v=qnKVnFlRkAk

Anyone that watches the Sacconejolys vlogs will know that Jonathan or Joffee Jokes as heis also known seems like a great person to hang around with, someone you'd be guaranteed to have a good laugh with. However from a very early age Jonathan suffered from depression and felt very isolated and insular, as a result he was horribly bullied. In this draw my life video he talks about that time and how he had to go to a specialist school for children with emotional needs. He also talks about how he has tried to turn his life around and found ways to keep the depression at bay even though it has been a real struggle at times. I think because of this struggle he is super appreciative of all that he has today and is a real champion for life's underdogs. I wanted to include this video because I thought it included some great lessons on learning to never write yourself off and how deserving of happiness you are.

Sprinkle of Glitter

"Self Harm Your Questions Answered" https://www.youtube.com/watch?v=22_kotDLxdY

A video breaking down the stereotypes about self harm. Such as the types of people that self harm and why. Sadly we see all too often trends pop up on social media where cutting is used for attention and in a way a horrible bullying tactic. The "cut for Zayn" hashtag inparticular caused much upset, set up to encourage fans to self harm after hearing the news that he had left One Direction and post photos to social media so that he would see how much he had hurt his fans and consequently return to the band. To be honest that is something that I find scary about todays society. Social media has bought about a whole new all encompassing social pressure. But at the heart of this issue was a vindictive plan to guilt trip him. A young man who was already clearly struggling and felt leaving the band was best for his own mental health. This trend showed no sympathy for him or indeed for those that were upset he had left. Those vulnerable enough to not understand the seriousness of cutting could easily have got swept along.

This video explains that self harm is far more than cutting yourself to seek attention as the above trends suggest. Often it can be a cry for help but given that self harm is often covered up and hidden it is far from attention seeking. Louise explains more about the different ways people self harm, that people don't just harm themselves through cutting; who is likely to self harm and why they would do this. Importantly it also gives first aid advice gleaned from the British Red Cross should you ever be in the unfortunate situation of finding someone that had self harmed. As well as what you can do if you want to help someone you know to get better and get help.

Links to Mental Health Charities:

www.mind.org.uk

www.rethink.org

www.time-to-change.org.uk

www.samaritans.org

Links to my January Blues posts:

January Blues Introduction

Signs and Symptoms

Why do I feel so bad?

Where can I get help?

What help is available?

I need help now!

Please remember it's important to talk about what's happening and there are people out there that can help. Asking for help is a sign of strength not weakness.

Sian

Tuesday, 26 May 2015

A royal day!

The above photo look familiar? Yes that's me as me. Recreating the inspired drawing Princess Charlotte (the first one not the new baby one) drew of me. May 12th seems so long ago now and yet I am only just getting round to blogging about the big day. In case you are in need of some context and wondering why on earth I have a helmet on my head and I'm holding a spoon, May 12th is M.E awareness day and myself and a group of other sufferers all dress up (as much as we can) as Princesses all in the name of raising awareness and for charity. The event is called The Princesses and M.E a play on The Princess and the pea story about a Princess that could not . As a collective we are known as Team Princess. You can read more in my blog post.

This year Team Princess were able to raise money for every single registered M.E charity within the UK and one in Australia, which to me is an incredible achievement. Our current total is £5858.24 a fantastic sum that will really have a positive impact on the services that the charities are able to offer for sufferers and their families such as helplines, forums, legal advise, leaflets and brochures. As well as helping to fund biomedical research into the illness. Slowly the tide is turning in the M.E world. More research and trials are being done to find definitive answers as to what M.E is. Due to this research one thing is clear, we have more proof than ever that M.E is a physical and neurological illness. Too long has it been wrongfully labelled psychological and not gained the respect it deserves. And it is with due credit to the charities that these studies can be afforded.

Of course raising money is not the sole purpose of this event, our biggest goal is to raise awareness. Within the M.E community we all know too well the injustices this illness has faced and are all too aware that the impact of them mean those outside of the community either don't know about the illness at all or if they do then the chances are they believe the misrepresentation that M.E is just tiredness and not at all serious or deserving of charity. Every time I write a sentence like that an image of me wanting to slap Ricky Gervais comes into my head. I wonder why? ;-) Therefore it's really important that we share the truth. Share our stories. Educate others about the true nature of this illness and the lives it's tearing apart. We deserve to be respected! We deserve hope! And awareness is the key to achieving this. I'd like to believe that the more this illness is shouted about that as a result we will get better funding, an allocated budget of its own to fund treatments and research. Did you see the recent march on the Whitehouse calling for more funding? That day I felt hopeful.

Below are photos of all the members that were well enough to get dressed up on the day (or during awareness week) and share their stories in the hope of one day getting that fairy tale in the form of an effective treatment or a cure.

We were also suppported by mini Princesses who wanted to join in the fun.

Oh and one Frog Prince!

As well as some real life furry mascots that got roped in whether they liked it or not.

There is a pooch under that tshirt

This years event was also tinged with sadness as we remembered a dear friend who sadly passed away last year. Allan wowed us all when he dressed up as a Princess for last years event. It always make me smile when I think of him going to h&m to buy tights that matched his dress. In honour of Allan we all wore something pink to ensure that he was still a part of our team. We were also blessed to have Allan's son Michael and grandaughter Milla (pictured above) join in the fun this year to raise money in Allan's memory.

Princess Jac our Aussie Princess took awareness to a whole new level when she campaigned to get the Adelaide oval lit up blue for M.E awareness. What an incredible achievement.

It's been great to get feedback from our auction too. To hear stories of items being given as gifts. One of our sweet hampers was donated to a special needs school to be used as a raffle prize at their Summer Fair. I think the number of raffle tickets has increased thanks to all the children seeing the hamper in the office and getting very excited. Thank you to Geoff Allen our resident Prince Charming and Aly Bentham our Fairy Sweetmother for making this possibe.

I really could not be more proud of everything we achieved as a team. This group of people and the majority of the M.E community as a whole are the reason I feel more hopeful each day that change is coming. It's hard that so much of the campaigning is patient lead, because of course exertion makes us so unwell. But at the same time it brings out that inner strength, fight and determination, that is so powerful. We will be heard!

I'm so excited already for next year and all ready planning ahead.

Queenie X

(Oh no this will be my last blog post signing off as Queenie until next year. I'll still wear my crown most days though. As should you.)

Saturday, 23 May 2015

Oi, it's time to listen!

Well what a week it was last week (or the week before now)! For those that don't know the 11th - 17th of May was M.E awareness week. A week that saw a patient group use up all their feelings of anger, neglect, injustice as well as their hope for a better and healthier future to raise as much awareness of this dreadful illness as they possibly could. And boy what a fight we put up! As a patient group we know that there are very few people on our side, thanks to decades of misrepresentation in the media and a lack of interest by the medical world. How can it be that an illness that in it's severest form can leave patients extremely disabled and dependent or even fatal gets so little recognition? That millions of sufferers are just left to suffer. Therefore when it comes to awareness week those of us that can, put as much effort as we possibly can into raising awareness and fighting for our cause. So in celebration of all this awareness I wanted to write a post with an overview of some of the campaigns, awareness videos and blogs that played a huge role in getting this illness more awareness during awareness week.

The Princesses and M.E/ Team Princess

Obviously I'm a little biased about this one, because in case you didn't know it's one I organize, supported by a great team of princesses that all want to do their best for the cause. After the success of last years event, Team Princess were back this year. Raising awareness by dressing up as Princesses and posting our photos across social media. We also held an auction on May 12th. You can learn more about the event by reading my blog post, here. This year we raised funds for every registered M.E charity in the UK and one in Australia, something we feel proud to have achieved. Our current total is just shy of £6000. You can see more on our Facebook page.

1 weekend 2 perceptions

Here on my blog myself and my friend Ali from All about M.E, wrote colab blog posts about our recent meet up. Both documenting how we experienced the weekend and how much of an effect it had on our symptoms. We wanted to show how M.E can vary from patient to patient and the different triggers that we have. Obviously us being well enough to meet up at all means we're having a 'good' day but from reading about what our bodies and minds are experiencing during this time, you'll soon learn that good really doesn't mean symptom free. You can read my post here and Ali's here. These posts were also a part of Sally's May 12th blog bomb.

Sally Just ME's #May12thblogbomb

This is a campaign for bloggers to unite and bomb social media with M.E awareness related blog posts. Bloggers write their awareness posts to be published on May 12th, M.E awareness day, and Sally brings them all together on her blog and by sharing across social media. This is the second year of the event and again the response was fantastic from bloggers wanting to share their stories in the name of awareness. Also it's a great way to discover new blogs to read and perhaps develop further friendships. You can see an inventory of all the posts that were a part of the blog bomb here.

Laura and Michael's blogathon

Staying on the blog theme Laura and Michael of lauramichaelandme.blogspot.com are blogging every day throughout awareness month. This is a big undertaking as one blog post alone can take weeks and a lot of effort to write. I'm really glad they are getting a great response. They are also raising money through justgiving for Invest in ME, which you can donate to here. They are also celebrating 2 years of blogging. Read all their posts here.

Meg Says and Hayley- Eszti's M.E awareness video

Meg and Hayley are two sufferers that try as much as they can to advocate for M.E and to speak out on behalf of those that are simply too ill to raise awareness themselves. Youtube is fast becoming a great new way for sufferers to raise awareness and to educate a whole different audience of people that may never have heard of the illness before. Or if they have then they might only have heard the negative things. Meg has a beauty/ lifestyle youtube channel called Meg Says and I believe that in putting an awareness video on this channel allows her and Hayley to really target those who know nothing about the illness and bring it to their attention. I think one of the scariest things when you are first diagnosed is not having known about it in the first place. The more the illness can be talked about and bought to a wider audience the better. You can watch the video here.

M.E awareness video by Leanne, Holly, Natalie, Bridget and Holly Michelle

Another chatty style awareness video made by 5 sufferers talking about the real side of M.E. What it's really like. What it means to have M.E and what that feels like. As well as an overview of how it's diagnosed, a list of symptoms and the few treatments that are currently available. There's also a section on the things people say to M.E sufferers born out of the widespread ignorance about this illness. I particularly liked how they ended the video by saying " I have M.E but M.E doesn't have me" and how they were now stronger and braver than ever for all that they are facing. Go ladies! That's so true. We are warriors. You can watch the video here.

#NowyouseeME

This was a social media campaign by The Association for young people with ME. It involved posting selfies along with #nowyouseeME to show the faces of M.E and to help make M.E more visable because all too often M.E is only seen behind closed doors. Given we are too sick to open those doors the majority of the time. This could be a good or a bad day selfie. You can also donate to them by texting AYME01 and the amount (£1, £3, £5 etc) to 70070.

Blue Sunday

Oh Blue Sunday, one of my favourite things about awareness week. Why? Simply because it involves cake. Blue Sunday was founded by my dear friend Anna who writes the blog Me, myself and I and has just celebrated it's 3rd year. Anna wanted to hold a tea party to help raise awareness and to fundraise for the ME Association, however she was aware that by doing so she could be alienating her friends that also suffer with M.E as they would be unable to attend. This is when Anna had the idea of a virtual tea party. Where she could document the events from her tea party but also ask people from all over the world to join in by simply enjoying a drink and a tasty treat, from the comfort of their own homes/beds and posting a photo to social media using #bluesunday. Again uniting sufferers and breaking down the isolation this illness often brings. Those that wished to could also contribute a donation of what they would usually pay for a drink and cake at a coffee morning or cafe to her justgiving page, which you can view here.

Please note that these are just a few of many campaigns. Many people have done sponsored walks, rides, cake sales and dyed their hair blue all in the name of awareness and charity. Of course all this awareness is incredible for our cause but it being so prominent has of course hurt too. Being reminded more than ever of the horrors of this illness and how betrayed we feel. Then of course there's the post exertional malaise that is racking the bodies of those that have campaigned. However it certainly has not all been in vain. Thanks to everyone that campaigned in any way they could, even if it was simply by sharing an article or retweeting a link, more people now know the truth about this illness. An incredible amount of money was raised for M.E charities to help them to continue to offer the vital support they give sufferers. A propotion of the money raised will also go towards research, on trials to discover biomedical evidence that will give us much needed answers, an idea of what treatments will be effective and one day hopefully a cure.

A big huge thank you to everyone that campaigned and supported a campaign.

Sian

Tuesday, 12 May 2015

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

Sunday, 10 May 2015

Princess interview with Princess Emma

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

I was diagnosed by a hospital consultant in June 2010 but I had been extremely poorly since December 2009.

What did you do before you had ME?

The year I got ill felt like the start of my life, I gained self confidence, had fun with my friends and a summer job filling in for an opair. After finishing my A-levels I went to uni at the London College of Fashion which was a 3 hour round commute. So I was a very busy girl!

How did ME first present itself in you?

In September 2009, one week into uni I had a really bad bout of sinusitis. I felt so awful that on my 19th birthday I was in bed by 7pm. It lasted about a month, then a week after being well again I had a flu jab, and after that is when I noticed sometimes was really wrong. Apart from feeling flu-like the first most worrying symptom was the agonising pains in my legs. It's only now when I look back that I see that earlier that year I had a few symptoms when I was dealing with finishing my A-levels. I would go shopping for art supplies but get bad headaches from the lights in shops, it seemed to stop over the summer though.

What is the biggest thing that you miss that ME has stopped you from doing?

Being a normal adult, finishing uni and being independent. All the milestones healthy people have the opportunity to take, first proper job, moving out, travel etc. I depend on my mum and family so much I feel like a child at times. It makes me sad to think how much I've missed out on.

How do you remain hopeful and/or happy?

I've always believed that I will get better. That thought has kept me going. I try to take every day as it comes and generally have a positive outlook if I don't think too hard about my situation. My mum and my cats, my friends and online friends help so much. I do struggle a lot with the boredom but being able to focus on my blog helps that.

What were your reasons for joining The Princesses and ME/ Team Princess?

I've always wanted to fund raise for ME Research UK and raise more awareness, last May I discovered Team Princess and loved the idea which is why this year I'm joining in. I love how it's something we can do without leaving home if we can't.

Do you have any specific plans for what you are going to do for the event?

I'm planning on taking blog photos of my princess outfit this week in a beautiful local location. I'm so excited about sharing my dress and tiara or should I say tiaras! I also want to explain the illness more on my blog. Lastly I have been making personalised original watercolour illustrations to sell which has been fun.

If you had 3 wishes what would they be?

1. Firstly that anyone who suffers with a chronic illness would wake up tomorrow feeling amazing, healthy and free of pain.

2. Secondly for everyone in this world to get along!

3. (Thirdly for 50 more wishes, with reminder when getting low!!) but if that's not an option I would wish for my friends and family to always be healthy and happy.

Which Disney Princess do you most relate to?

Rapunzel - I feel like I'm locked away by this illness but able to watch everyone else live.

Thank you Emma for taking the time to complete the interview. You can learn more about Emma on her blog Emma's Looking Glass. She is fundraising for ME Research UK and you can donate to her at
https://www.justgiving.com/emmaslookingglass/?targetdevice=desktop.

I hope you have enjoyed this series of Princess interviews. Thank you to all that took part and helped raise awareness by sharing your stories. You can keep up to date with all the latest Team Princess news, on our facebook page www.facebook.com/meprincesses. On May 12th we will be running an auction of some great items to help us raise money for our chosen charities. There are some great items on there so be sure to take a look. Bidding opens 7pm Tuesday 12th May. You can also support us on our justgiving page, http://www.justgiving.com/teams/teamprincessall donations are greatly appreciated and mean the better chance of a fairy tale for all of us Princesses. We want a cure not a curse.

Thank you again

Queenie x

Thursday, 7 May 2015

Why I'm fundraising for AYME

Today's post is all about why I made the decision to choose the Association for Young People with ME to fundraise for as part of The Princesses and M.E event. Although in saying that I also want to highlight that although I have chosen this charity personally, as my justgiving charity, I have no prejudices against the other M.E charities out there. Far from it. These charities are a much needed lifeline to us sufferers and our families. The fact that as a group we can support every registered M.E charity in the UK and one in Australia through this one event is an incredible achievement and something I feel very proud to be a part of.

AYME is a charity that actually I have not previously had much to do with. Mainly for the obvious reason that I'm not classed as a young person anymore. The majority of the time being at the centre of this illness's cruelty and seeing all the aids I have around the house I feel a lot older than I am. Zimmer frames are only for the elderly right? However there are far younger sufferers than me relying on these aids to help them. Illness and disability are not just the burden of the elderly. Even though stereotypically we associate them together.
When we think about youth, we think of health and energy and that feeling of having the world at your feet. Of course we all know that severe illness can strike at any age. We might know people who have or have lost a child to cancer, cystic fibrosis or muscular dystrophy. However these are illnesses that are well recognised or the site of a wheelchair makes them an automatic symbol that something is very wrong. It fills us with a strong sense of injustice. And I think the word injustice is a strong candidate for why I chose to fundraise for AYME in particular.

I could literally cry when I think of the injustice of this illness as a whole, in fact I do regularly and I let myself cry and get angry because feeling those things when life is unjust is normal. This illness is relentless and cruel, literally debilatating. What makes it all the more worse is that there is very little that can be done to help in the form of treatment and we're a good while off a cure. Therefore you often feel like you're basically stagnating. You can manage some of the symptoms somewhat with medications but overall you are left at a stand still and have no where to turn to for help. Because there is very little help. Not enough biomedical research has been completed to start giving tangibe solutions. And medical professionals are not educated sufficiently about the illness despite seeing hundreds of patients with the condition. It can vary greatly between GPs and even so called specialists. Finding someone that will believe you and give you the correct advise can be a struggle and every time you see someone it can feel like a big gamble. Leaving thousands of people lying in dark bedrooms in pain, for days, weeks even years on end. Some so bad they need to be catheterized and tube fed. Their sensitivity to light and sound so strong it can cause physical distress.

As an adult this is hard enough to deal with. Generally people of my age have full time jobs, morgages and children. They have independance and lots of choices and options. Honestly, I would love to be where most of them are. Grumbling that Monday morning has come around too fast after a great weekend of socializing and going out. Dragging myself to work on a dark morning to do a job that they might not love but do to pay the bills. Then coming home tired after a hectic day but still able to drive home, cook tea, do some chores and get ready for bed. Or even go for drinks on a Friday after work. Okay, I have always been of the opinion that a career and a pashion combined is ideal and that's what I had. But right now I crave that normality that so many people take for granted.
When I think of people that are younger than me, young adults, teens and children with this illness it devastates me. They should have an abundance of energy and be looking forward to a future full of possibilities. Rather than feeling that they will be stuck in this child like state for the foreseeable future. Wondering if they will ever get to experience the rights of passage most of us in wealthy countries experience. Your first day at high school. Your first disco. Graduating highschool. Going to college. Your first relationship. Learning to drive. Going to University. Getting a job. Your first pay packet.

I have some personal experience of being an ill teen. Not with M.E but something else. What was different about my situation though was that I had a recognised condition. With M.E as many people know, it is an illness that far too many don't believe is real. Or if they do that it's not possible for children to have it. Casting so much doubt on the patient and putting them and their families through turmoil. I've heard so many stories about schools not helping make things easier for them to manage some schooltime. Concerned about their attendance record and the effect that has on the school than health. What makes this harder is the struggle to get a proper diagnosis, which means that the school have less understanding. Sadly a lot of doctors believe their illness is psychosomatic and therefore refer them to psychologists for treatment. Sadly, some parents have even had to battle social services, told that if their child does not show signs of improvement or up their school attendance then they will be put into care. That the parents are a danger to their child and cannot look after them to the detriment of their health. Some young people have even been locked away in mental health wards to cure them. When in reality this has made them far worse. Read my post about a young Danish woman called Karina Hansen for more information. I cannot begin to imagine the horror of trying to protect your sick child and have to fight to keep them when all you have done is nurture them. Watching their child become shadows of their former selves, old before their time. Having to treat them like babies again.

This is why charities like AYME are so important. They provide a wealth of info on their website for a broad range of people to gain information about the illness. They help children, teens and young adults to find others like themselves and to chat securely. Offering them a chance at friendship with people that will not judge them and break the isolation associated with living with this chronic illness. As well as those closest to the sufferers, to communicate with others in the same situation. AYME also provide information for parents/ carers need help with all kinds of matters from trying to understand what their child is going through, how they can best help them and acting on their behalf. To help with getting their school to understand the situation and how they can make suitable adjustments. And sadly help in those dark times when legal advise is needed.

Donations made to the charity allow AYME to provide these much relied upon services to young sufferers. They fund the information and helpline telephone and email service, as well as National Support Workers that provide help for sufferers and their families in crisis with 24/ 7 emergency support. As well as support a team of volunteers that help support others with ME, they can even use their experience to gain recognised volunteering awards.

To find out more information about AYME or to become a member visit their website www.AYME.org.uk.

To find out more about the Princesses and M.E event see my Team Princess 2015 blogpost. You can donate to me on www.justgiving.com /Sian-Wootton1
Or you can text AYME51 and the amount in £s you wish to donate to 70070. It would mean the world to me.

Sian x