Forget the boom and bust?

 If you are diagnosed with M.E and are referred to a clinic in your area, one thing they will teach you is all about trying to avoid boom and bust and learning to completely redefine the word pace... you've  rolled onto one side now DON'T ROLL OVER AGAIN FOR AT LEAST ANOTHER HOUR!! This is the only real "sound advice" you are given. And that's if there is a clinic in your area. In many areas there isn't and you simply have to rely on the information that your gp does or does not have.

 

Anyway... So what is boom and bust? And why should it be avoided? Boom and bust is a term that in relation to chronic illnesses such as M.E, Fibromyalgia and POTS (to name a few) is where you have a burst of activity as a result of feeling more energized and having a better day. Perhaps "overdoing it" because you want to make the most of having that much energy or wanting to get a task done, especially if you have been wanting to do it for a while but not been well enough to. It can be so frustrating lying there unable to do the simplest of tasks as all the things you want to do build up. Consequently you can then experience bust, a crash to earth as a result of the activity. Where your body feels physically and mentally assaulted. Bust is also known as payback or post exertional malaise, which is a defining symptom for M.E patients. This is because the mitochondria, the powerhouse in our cells that turns nutrients into energy, is defective. This means that once you have used up your energy it can take a long time for it to build back up. When experiencing bust some will of course feel silly for having essentialy made themselves feel that way. Feeling it is all their fault they are suffering as they are. But of course it isn't your fault. It's the illness. And the fact that you are ill is certainly not your fault.

 

So the question is should we avoid the boom and bust? The thing is each time we use up our energy we don't know just how much our body will react. Sometimes just walking to the bathroom and back will wear you out as much as a trip to the supermarket. Unlike our phones that easily tell us how much battery we have left our bodies don't. The fact that we are always at the mercy of our symptoms helps blur the lines even more. Predominantly our energy is used on things that we cannot really avoid just simple household tasks or things we need to do to look after ourselves. Especially if we live alone. And yes we can often 'over do it' because like I said the temptation to do as much as you can while you can is one we will often fall prey to. We can of course get help but unless we are completely bed bound then the ability to do things for ourselves is one that at least makes us feel that little bit more normal and not completely useless, because we often feel that we have lost our independance. However although they are necessary, these are only the smaller things, although of course to us they can also be big achievements and although they say life is made up of the smaller moments and I can see the truth in that statement I'm not sure that quite applies to household chores and making sure you eat and drink. If experiencing boom and bust can be so easily done by these smaller things then what about the bigger things? Should they be avoided at all costs?

 

It is the bigger moments that can really leave their impact, whether that be positive or negative. Sadly we can't really control some of life's sadder events or know when they are going to happen and of course that is going to cause a lot of post exertional malaise and much grief. Therefore in those incidents it is highly likely we will use as much energy as we have and ultimately boom and bust. Moving on to the more positive big moments/events that create fond memories and make up much of our achievements. From graduating, getting married, having children to the holiday of a lifetime or a gig you have always wanted to go to. When you have a chronic illness getting to achieve these things can seem impossible. Your head is full of questions and doubt. I will leave school/college with no qualifications. No one will want me now that I am sick and need a wheelchair. How will I ever even meet someone when I hardly leave the house? And when I do I am always accompanied. You worry that travel will be too stressful and painful and that you won't have the control you feel you need. That you are far away from where you feel safe and comfortable in an environment you are not used to. You also feel like you would let others down. That they may have to miss out if you need to leave early from an event and feel bitter towards you. You often think it's probably too much effort and too much risk, and therefore not worth it. And of course that ultimately you will experience post exertional malaise afterwards and feel like you have been in an accident not at an enjoyable event. And that's no fun at all! Consequently your quality of life can be poor and you feel like you are missing out on so much that life has to offer.

I was reading through an old blog post the other day called reminicsing, in which I was looking back to the time I was more moderately affected and the time shortly before I was officially diagnosed. In it I said " I remember being on holiday just before my diagnosis and telling myself that although my life was about to dramatically change that if I could still steer it in a good direction and make new memories then I had to make the most of things when I could. I'd try my best to not just be defined by illness and keep developing the condidence I'd gained."  This is certainly a philosophy I still try too live by. Even if it's not one I can put in to practise that often. 

 Recently I went to the theatre to watch Pasha Kovalev from Strictly Come Dancing. Words cannot describe the effect that man has on me, haha. It took a lot of resting beforehand and lying very still to have enough energy to go. This is another thing a clinic would advise against, oops! I was so very thankful that on the day I did actually feel well enough. Going to the theatre brings up a lot of other complications for me such as noise and light sensitivities but luckily I coped well. I had packed sunglasses just incase. Naturally when you are at a dance show you are going to want to clap along and applaud and when Pasha tells you to dance you're damn well going to shimmy for him. However I caught myself thinking a few times, perhaps I shouldn't be clapping as much or doing the wheelchair boogie. That I would have hell to pay for it in the coming week. But that thought quickly got lost as I was emerced in enjoying the show. After the show I wanted to go wait at the stage door to meet the dancers. Again I thought Siân you probably shouldn't push your luck here and just get yourself home and back in bed. But if you have a choice to meet Pasha and he is meteres away what are you going to do? I think you can already tell the answer to that from the photo above and let's just say it was totally worth it. I had an amazing evening. This was in part due to the beautiful message of the show, which was all about positivity and Pasha wanting to make sure his audience went away feeling uplifted.But also that because for a few hours I felt less like a poorly person and more of a normal person. So full of life and happiness I very nearly cried, but I didn't want to shed any tears on such a good night, even if they were happy ones. If I hadn't have been in a wheelchair I could very easily have believed I was. And that was such a wonderful feeling. 

The point I'm trying to make without gushing too much is that opportunities like that don't come around that often, especially for us. For me personally I try and grab them. Whether it be from a trip to the theatre to hoping to be well enough to go on holiday. I have to plan very carefully and be over prepared for every situation, but I try not to let that detter me. It was my choice to book the tickets and give myself that opportunity and one that could very easily have not worked out by not being well enough to go but at least I had gave myself the chance. I know some people will think that if you then don't get to go that you are going to be really disappointed and hateful of the illness; and yes it would be disappointing but it still hurts to know an event is happening and doubt stops you from booking. Sometimes you simply need to take a risk and hope it pays off.

I'm not going to lie and say that it didn't hurt or cause PEM afterwards because it did. That is the nature of the illness and something I expect. Suprisingly it wasn't nearly as bad as expected so I got lucky there. Plus as I recovered I got to relive the night many times in my head and that made sure I had the biggest smile on my face. The great memories outweighed any pain.

So maybe booming and busting is a bit reckless and not advised but it's up to you to weigh up that risk and decide if you want to be more responsible for not causing yourself extra suffering or more responsible for your happiness and quality of life. Perhaps I am coming at this from the perspective from a former sufferer of depression and anxiety who feels the added pressure of maintaining my happiness. And perhaps you would choose differently. I really can't say I blame you. Payback can be a bitch and be really hard to deal with. I'm lucky I have people to help care for me 24/7 that can help me through the worst of it but I still dislike being reliant on them for basic care on those horrendous days. I don't wish to force this opinion on anyone. We each have a responsibilty towards our health. I only wish to say that we all deserve to be happy. And if we have the power to control that sometimes then it can be worth taking.

Siân
X

* Please note that booming and busting should only be on ocassion and that pacing for the majority of the time is still important for maintaining your health. Also note that this post is not an advise post and that each individual should take responsibility for their own health and decisions. I am only expressing my opinion using my experiences. However I do wish that you can all be as happy as you possibly can. Having a chronic illness is hard and finding ways to keep positive are important.

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

X

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

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

Princess Interview with Princess Emma

When were you diagnosed? Were you ill for long before then? I was officially diagnosed with ME in June 2013. I became poorly in 2005 when I got Glandular Fever halfway through university. I never felt "right" after that !

What did you do before you had ME? Before I had ME I was a primary school teacher. I had been teaching for 8 years.

How did ME first present itself in you?
After getting glandular fever in 2005 I seemed to pick up every bug and virus going including swine flu. I kept going to the doctors as I didn't feel well but didn't know why an the doctors seemed reluctant to help. I would always feel exhausted and aching but at first assumed it was the fact I was a teacher so I forced myself to keep going. I changed doctors and thankfully my new doctor actually listened to me and began running blood tests etc as he felt I had ME. In February 2013 I became very unwell at work and ended up going to hospital. My mum described all my symptoms to one of the doctors and she asked if I had ME.

What is the biggest thing that you miss that ME has stopped you from doing?
The biggest thing would be having to give up my teaching career. Working full time was impossible. I could just about manage part time which I was reluctantly given by my employer who was asked to follow my occupational health report. Sadly I was told I would have to return full time or there would be no job as they couldn't have me work part time (despite other staff being part time due to having babies) so I had to leave. While I miss my friends and the children, there are aspects I don't miss. I had no work life balance and in a strange way ME allowed me to get more of my life back (as crazy as that sounds). I now work in social media and blogging, working part time and from home. A complete change of job and for less money, but I am happier and the job suits my illness.

How do you remain hopeful and/or happy?
I remain hopeful and happy mainly due to the wonderful people I have in my life. My closest friends have been amazing and are always there for me and very understanding of my ME. They often spot I am flagging before I do (I'm stubborn) so they force me to pace myself and they plan regular stops for me if we have a trip out. As one friend said "I don't mind sitting down and drinking tea, we are getting old and it's a great excuse for a natter". What I also love is that they don't see me as their "sick friend". They treat me as they always have done so I feel equal and I am always included. My online friends are also a great support and I love catching up via Instagram etc. My two cats are a great comfort to me too.

What were your reasons for joining The Princesses and ME/ Team Princess?
Apart from the fact I love princesses, I thought it was a great way to raise awareness. I have also made some lovely friends as a result of being part of Team Princess and I hope when our health is better we can have a princess get together.

Do you have any specific plans for what you are going to do for the event?
I will be dressing up as a princess and may attempt photos of different princess eg sleeping beauty, Cinderella etc.

If you had 3 wishes what would they be?

To find a cure for ME so my friends and I could be better.

To get married and have a family.

To be well enough to go on a roller coaster tour across America.

Which Disney Princess do you most relate to?

I always wanted to be Ariel when I was little, but I can't swim so I'd make a rubbish mermaid! I can relate to Beauty from Beauty and the Beast because I am caring and I like to see the good in people.

Thank you Emma for taking part in the interview. You can learn more about Emma and her story on her blog The Adventures of Little Me. This year Emma is raising funds for Invest in ME.

Get in touch if you would also like to join The Princesses and M.E this year and also if you would like to take part in an inerview to share your story.

Queenie x

Princess Interview with Princess Charlotte

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

I was diagnosed in October 2012, just over a year after first becoming ill.

What did you do before you had ME?

I was a Reception teacher.

How did ME first present itself in you?

Chest infection/sinus infection that wouldn't go away, followed by complete bodily melt down.

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

Dancing and listening to music, reading books, independence, walking, being able to go wherever I want whenever I want...... to name but a few.

How do you remain hopeful and/or happy?

I remind myself of the many reasons I have to be grateful. I also think back to how I was at my worst point and celebrate how far I have come both physically and mentally. Getting upset or angry will not change my life or make me well so I  am determined to enjoy myself as much as my limited energy will allow. I laugh more now and feel happier and more confident about myself than I did when I was healthy.

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

It just seemed like a fun thing to do and a great chance to make friends.

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

I have my costume at the ready although I still need a few accessories. I'm thinking outside the box this year because I'm not really into princessy stuff.  I'll be active on social media  for the day as I'll be on my own so won't be able to go out.

If you had 3 wishes what would they be?

For me and my spoonie chums to get well.
A cure for ME.
To be happy.

Which Disney Princess do you most relate to?

I'm not really into Disney and relate much more to badass swashbuckling princesses. If I had to choose a Disney princess, I'd go for Jasmine from Aladdin because she sneaks out of the palace dressed as a commoner so she can have adventures.

Thanks Charlotte for taking part in this interview. You can hear more from her on her blog The chronic ills of Mookpixie. This year Charlotte will be supporting Action for M.E and you can donate to her from April 12th.

Stay tuned for 2 more Princess interviews next week. If you would like to take the interview then please get in touch.

Queenie x

Princess Interview with Queen Siân

 

Yes I am doing an interview with myself but I thought I might as well kick off this series of Princess interviews with my own experiences. Lead from the front, as it were. I already have a few interviews from other Princesses to be uploaded soon, however if you want to join Team Princess and do the interview too then let me know. 

 

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

I was diagnosed in September 2011, 4 months after I collapsed and fell asleep for 3 days, needing to be admitted to hospital. However I have had a chronic illness since the age of 14 and suspect that with hindsight the years before I was diagnosed I possibly had mild ME.

 

What did you do before you had ME?

Before I got ME (or definitely knew about it) I was living my dream doing an MA in stage management at drama school and stage managing a production. At times I felt like I needed to pinch myself. I felt so lucky. I had fought some tough mental health battles to be there too and was feeling happier and more confident than I ever had. I used to get quite anxious about going out on nights out etc as I always felt a bit of an outcast with not drinking because I could not tolerate alcohol. But I finally overcame this too at that time (the anxiety not the drink intolerance) and managed to start enjoying what felt like a more normal social life. Sometimes I look back and think what absolute rubbish timing but there really is no good time for something like this to happen.

 

How did ME first present itself in you?

In the months before I had been admitted 6 times in 6 weeks with severe abdominal pains. However with no diagnosis and being told nothing was going to explode I carried on working, getting in at 8.30am and sometimes not leaving until 10pm. I also fell down the stairs, twisted my ankle and a week later got an infection under my eye, causing my face to swell and needing to be admitted before the infection spread to my brain. It was obvious my body was trying to tell me something and I knew I had to try and slow down. However after going to the Summer Ball the next day I felt a real sense of foreboding, rather like the onset of a panic attack when you just feel you on the edge of doom. I knew I had to try and get home and so I phoned a taxi and jumped on the next possible train. I just about managed to stay conscious throughout the journey but as soon as I got into my brothers car I could no longer keep my eyes open. I was like that for 3 days, trying my best to communicate but not having the energy to even open my eyes. My GP came round to the house and did a series of reflex tests non of which I was responding too and so he called an ambulance to take me into hospital. When I was first admitted they were worried it could be meningitis as I was wincing at the lights and had pain in my neck. However after learning that I had been at my Summer Ball they starting questioning what I had taken. A junior doctor mixed up the levels of 2 paracetemol in my system given to help the pain in my neck as being enough to overdose and so of course I questioned all the more, especially with my recent history of mental health problems, and a psychiatrist was called to evaluate me. I felt so scared and upset because they were suggesting it was self inflicted when I was in fact at my happiest and of course I could not defend myself properly. Luckily the junior doctor was soon put right for her error. It was certainly the most vulnerable I've ever felt. They diagnosed it as burn out and suggested I get lots of rest to recover. So that's what I did, only things only improved a little and 4 months later I was officially diagnosed with ME.

 

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

To be honest it's the little things more than the big things. Don't get me wrong I certainly miss being able to work and be able to go to the theatre often. However it's the little things that you have to face every day. Loss of independance is certainly a big gripe. Needing to virtually be babysat 24 hours a day. Not being able to even make your own breakfast or lunch and feeling like a pain in the backside for having to ask others. Then there's the loss of some dignity, having to get help in and out of the bath or shower and sometimes to help you on the commode, or just to lift your pants back up. They're things that I know I have to tolerate to be able to get by but I do certainly have times when I think to myself this completely sucks.

 

How do you remain hopeful and/or happy?

Honestly in some ways I think having had experience of mental health troubles actually in some way helped me to cope with this. I might not have my physical health but I have my mental health in a good condition. Hope, and happiness are two things I've been speaking a lot about on my blog lately. I think most of us are predisposed to just keep on hoping, no matter what life throws at us. We learn to see the good things more than the bad and even go out and make those good things happen. I try to take each day at a time, live only in the moment an to laugh as much as possible.  Plus I have some great people in my life, my amazing family and my spoonie sisters.

 

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

Well I founded it, with the support of some of the other Princesses. I wanted to do something to raise awareness on ME awareness day to show what ME really is and try to get it onto more peoples timelines and feeds on social media. The more people that at least see it, the better. One of the things that a lot of people face when they are diagnosed with ME is "what on earth is that? I've never heard of it." So getting the name out out there is just part of the battle. Also just to show that behind the illness are some very strong women.

 

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

Overseeing everything and being attached to my phone for most of the day, making sure we get our message out there. I'll probably be filled with pride and possibly shed a few tears too.

 

If you had 3 wishes what would they be?

 

★ That a cure for ME can be found and everyone that has it can get better and those that will get it in the future won't have years of suffering
★ To be happy as much as possible
★ To be able teleport/ apparate travelling is so draining and painful. I love it, I just wish it was easier. Then I could see people more often and meet more of my spoonie pals.

 

Which Disney Princess do you most relate to?

It has to be Sleeping Beauty. I have always been a sleeper who loved a lie in. However since getting ME some days I can sleep for 20 hours straight. Although that's probably about all we have in common, I wasn't raised in the wood by fairies or pricked my finger on a spinning wheel, as far as I am aware. I'm probably more akin to Sleepy the dwarf. I would say I'm also a mix of Belle in that I tend to go against the grain and love to have my head in a book; also like Cinderella I'm a grafter and like Rapunzel I go after what I want.

 

I hope you have liked this post and that you get to know a bit more about myself and other Princeses that will be taking part in this series of interviews.

 

Queenie xx

Team Princess 2015

 

It's time to start polishing those tiaras ladies (and gents!) because Team Princess are back for more this year. I made the announcement a few weeks ago and have been getting some great responses so far and lots of people wanting to know more. So it's finally time to let you in on all the details for this years Team Princess and how you can join in or show your support.

Team Princess aka The Princesses and M.E started last year after myself and a group of friends had compared ourselves to some Princesses of the Disney/ Fairytale variety. I have to say some are up there with Princess Kate too, and that's no bad thing at all you goddesses. However back to fairytale world, some of the similarities included:

 

Sleeping for a very long time like Sleeping Beauty

 

Being really uncomfortable in our beds and the slightest things annoying our conditions like the Princess and the pea

 

Feeling like we've been locked away  in a tower like Rapunzel

 

Wanting legs that work like Ariel (find me Ursula now!)

 

Being out past midnight is way too late for us to stay out like Cinderella and just like her brainfog would probably mean we left something behind

 

We have a large propensity for hope

 

The bed head of Princess Anna from Frozen (anyone else love that moment and think hey she's just like me)

 

And we are in search of a fairytale

 

However for us that doesn't mean being rescued by Prince Charming; although he's welcome to come knocking. Our ultimate fairytale would be finding a cure for this illness that has locked us away from the world. That would be an absolute dream come true. However to do that we need to raise as much awareness as possible, educating everyone about the true nature of this illness and the disabling nature it can have on the lives of sufferers and those closest to them. There are more than 250,000 diagnosed cases in the UK alone. 250,000 lives that have been altered drastically and 250,000 who are waiting for an effective treatment, better consistency of information from health care professionals worldwide and of course the chance of a cure to come charging our way.

 

Last year Team Princess raised over £4000 for the charity Invest in ME, a charity that is very much at the forefront of trying to find tangible answers through biomedical research, drugs trials, plans for a centre of excellence. This felt like such a huge achievement for us all, especially considering the majority of us are mostly bedbound/housebound. What's more in doing so we created closer bonds with each other, creating a real sense of sisterhood (and Allan), friendship and team work. Without these bonds life would be much duller, much harder to cope with but having people that completely understand and working alongside you to make a change was one of the best achievements.

 

 

Moving on to Team Princess 2015. This year things will be a little different, we want to expand on all we achieved last year and broaden our horizons. Whilst above I talked about some of our similarities with fairytales there are many attributes of real Princesses that ME princesses emulate. Princesses are known for championing causes closest to their hearts and for their charitable nature. ME sufferers and their supporters not only battle living with illness and disability on a daily basis but also to be taken seriously. You'd think that having been recognised as a neurological condition way back in 1969 by the World Health Organization would be enough to give the illness credibility but it seems this fact gets overlooked all too often. So you will see that a lot of the time it is the sufferers themselves having to convey the realities of trying to survive with ME, not medical professionals as it should be, with some exceptions of course.

 

In the spirit of really wanting to champion our cause as much as possible we want to open up to supporting more ME charities both in the UK and other countries. That way any international Princesses (hi Jac!) can support charities that are making a difference in their countries and will benefit them more directly.

 

Therefore The Princesses and ME will be a unity of anyone that wishes to take part but within that there will be a number of Team Princess' that will fundraise on behalf of that charity. However it's important to note that there is no competition. To do this, we will be setting up team pages on Justgiving, and similar international sites.

 

In the UK, on www.justgiving.com the following charities are available to fundraise for:

 

Invest in Me
ME research UK
ME Association
Action for Young people with ME
Action for ME

 

In Australia, on Www.everydayhero.com.au the following charities are available:

 

Emerge
Change for ME
The ME/ CFS society of WA

 

Please note that the information above is based on the people that I know have already expressed an interest in getting involved. Other charities in other countries are also available.

 

Also note that fundraising is not mandatory. Understandably, not everyone has the energy to do so. All we ask is that you are supportive of the Princesses that are. However for those that do I will offer as much help as I can to set up pages. Our main aim has always been about raising awareness of the illness and sharing the truth about what it is like to live with it.

 

So what do you need to do to become a Princess?

 

1) Declare your interest. Contact me on our facebook page or Twitter @how2dealwithME and let me know if you would like to get involved. Also let me know what country you are from so that I can research other charities and fundraising sites should you wish to fundraise.

 

2) Start planning your outfit. You can dress up as little or as much as you want to. Totally depending on your health and your wishes. Last year Princess Sami left hospital in a paper crown made by her children. However if you want to use this opportunity to embrace your inner Princess then certainly go for it. You deserve it!

 

3) Decide whether you want to support a specific charity and which one and also let me know which one you have chosen. I will provide more info on setting up pages very soon, once I have any idea of what charities everyone would like to support and set up the groups that you can join as an individual fundraiser.

 

4) On May 12th, M.E awareness day, dress up as a Princess, or a Khaleesi if you wish. Those that are feeling too bad on the day please don't push yourselves too much. Health first. Once you are Princessified simply post a photograph of yourself to social media, stating why you are dressed as a Princess and the awareness you are trying to raise of ME using #theprincessandME and #TeamPrincess.

 

5) Direct people to the fundraising pages of either yourself or other Princesses in Team Princess.

6) Also let me know if anyone would like to share their M.E story as part of raising awareness, either through your own blog posts, which I will link on our facebook page or a guest blog on here. I would love to do a few Princess interviews on here. Also let me know if you are going to share your story with the press.

 

 

Last year, Team Princess was made all the more special and comical because ME sufferer Allan Dickinson embraced his inner Princess, or should I say Tywysoges (it's Welsh for Princess), and dressed up, accessorizing with a rather fetching pink wig. Sadly Allan passed away a few months after, and his death affected us all deeply. This year in planning for Team Princess 2015, we always knew that we wanted to honour Allan's memory in some way. First of all, we decided that we would wear something pink, it doesn't have to be the whole outfit, just something with pink on it to represent Allan. Then a short while ago I was contacted by Allan's son Michael, who said that he would like to be involved in this years efforts. Michael doesn't have ME but he is willing to dress up as a Princess for the day to help raise awareness and fundraise for ME charities, with the support of his daughter Milla who will also be dressing up. Of course this bought on lots of tears but it is a privilege to have Michael and Milla as part of the team.

 

Hopefully this blog post has covered all you need to know for now. I will soon have more information on fundraising and help to set up pages. Any more questions though please do ask.

 

Keep your heads up Princesses, don't let those tiaras slip.

 

Queenie xx

M.E's Top Model

Copyright: Hayley Eszti Szucs

Remember not long ago I wrote a post about disability in fashion and another about the work I was doing with Models of Diversity to get disability represented on the highstreet and catwalk? If not, please do go take a read of them here and here. You might even remember I featured the above image of my friend Hayley, another M.E sufferer, blogger, pressure group member and as of last week headline maker. 

Last week she was featured in 4 national news papers, The Mirror, The Daily Mail, The Express, The Daily Star and disability magazine Able 2 UK to share her story of how she became ill and diagnosed with severe M.E (myalgic encephalomylitis) that has left her disabled and needing to use a wheelchair ocassionally.

The onset of Hayley's illness was sudden and shocking. Going from a healthy and fit young woman teaching children in Spain, to not being able to move or talk. She describes it as feeling locked inside herself, an experience that many severe M.E sufferers experience during a sudden onset of the illness or during a crash. Please refer to the articles for more information on how this feels or read one of my recent posts which describes an M.E crash, here. 

And yet at the time doctors had no idea what was wrong with her. All the tests came back inconclusive. Luckily she regained her speech and some movement but was left with pain, exhaustion, cognitive difficulties and seizures. Needing to lie in a darkened room and rely on others for basic care. Which meant moving back home to live with her parents in the UK. 



Copyright Hayley Eszti Szucs

M.E is an illness that has peaks and troughs so whilst Hayley was no longer needing to be hospitalised her condition still left her unable to lead a normal life, or the life that she had planned. As mentioned she now uses a wheelchair when leaving the house, but she needs someone to help push her as she does not have the strength to do so herself and this would leave to post exertion malaise. Luckily she can now mostly manage to do basic things for herself, such as feed herself and wash her hair. However she still has times where the symptoms worsen. Where she needs to lie in the dark or is unable to lift herself up in bed. And will suffer from post exertion malaise after doing something, which varies in severity and length of time, depending on what she is recovering from.

In 2012 she started writing her blog to document her story. In her first ever post she wrote.

 

"I want to share how I deal with trying to be 'normal' and young and continue to do what defined me as a person before I was faced with obstacles.I want to try and incorporate fashion, style and creativity within my blog too"

 

It has since grown into a space where Hayley can advocate for M.E awareness and for disability in general. Challenging people's perceptions of what disability means and how disabled people are represented in society.

 

For M.E awareness day (May 12th) 2014 Hayley published a blog post called the visual campaign, which you can read here. A series of photographs showing her both in her chair and out of it, aimed at highlighting the often invisible side to disability. When she is in her chair, she can be instantly identified as disabled but if she  isn't then society might never guess something was wrong. Despite her still being chronically ill and at the mercy of her symptoms in both situations. 

Over the course of her illness she has realised just how invisible disability is in many influential areas of society. That there are millions of people in the world with a disability of some kind but they are very rarely presented in the media. Or if they are it is separate from main stream marketing. Take for example the Paralympics. The games were meant to leave a legacy of encouragement and inclusion for disabled people but these games were still held separately and nor did they get equal media coverage.

 

It would seem that according to marketing and advertising disabled people have no interest in what they are trying to sell. And Hayley, like many other young women had found that although disability had meant her life was dramatically different that her intetests remained the same and yet people tend to struggle with the fact that disabled people can be interested in fashion and beauty. Like she said in her first blog post she just wanted to be normal.

 

Copyright: Hayley Eszti Szucs

Determined to tackle this attitude and continue the work of her blog Hayley joined the pressure group ran through Models of Diversity, keen to make a difference to the highstreet and the brands she bought from. As her blog has grown in popularity she has grabbed the attention of several stylists and brands who want to style and photograph her. Which altogether has lead to her decision to start modelling and be featured in the national press. In a recent blog post about her experience of being in the press Hayley clarified why she had made the decision to start modelling, saying:

"There was a comment on the Daily Mail article which said models are not important, which I couldn't disagree more with, ESPECIALLY disabled models. We need people to look up to, people we can relate to, and since I've needed a wheelchair and mobility aids myself, I have noticed how under represented we are in the media and in society. I'm doing this to help raise awareness and to show that we are not invisible."

 

The response to the articles has been immense. Especially from people with a chronic illness or disability and in particular those with M.E. We are used to seeing lots of negative press about the illness with incorrect information. Cosequently M.E sufferers get a bad reputation because of it. However since Hayley's story has been published she says:

 

 "The amount of people who have come forward since the articles were published and said how glad they are to see M.E in the press is ridiculous, there were literally hundreds and hundreds. We need to know that people are doing things to help combat the ignorance or misunderstanding of the illness. The illness can strike anyone, at any time just like it did me. I think it gives people hope that we are being seen and being heard and having M.E featured in several national newspapers is a damn good place to start with that!"

 

As you can imagine I am incredibley proud of what Hayley is doing and wish her every success. She has a few shoots and appearances lined up, so I'm wishing her plenty of health and wellness for them. I can't wait to see how this progresses. It would be fantastic to see brands using more disabled people in their advertising campaigns. And not because they feel they need to be politically correct or as a one off 'oh look how brave and inspirational they are' but because they recognise disabled people as valued customers.

 

Please do take a read of the articles and Hayley's blog too. 

 

What do you think? Does the media need to place disability in more influential areas? I know the world needs more Hayleys and I hope you'll all join me in wishing her every success.

 

Sian x

 

All photos in this post belong to Hayley Eszti Szucs and have been used with her permission.

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