Taking Chances

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Over the next two months things are about to get hectic. Admittedly things already feel hectic and that's from just trying to haul my ass through the pain of each day and make it out alive. On top of that I've been trying to change up my room. Hey I need a change of scene. I bought new furniture way back in January and only in recent weeks has it made it's way to my room. Trying to go through everything and throw away all those bills from 2010, and socks that are sadly not going to be reunited with their sole mate (see what I did there) has been arduous. It's frustrating wanting to get things organized, especially when you are surrounded by piles of stuff that has no place until you can put the new furniture in. And all that clutter is somehow oppresive and has it's own kind of noise that creates so much discord. I just want to get it done! However of course it's not that easy. I need to pace it. Doing too much on one day leaves me unable to do much apart from stare at all the stuff yet to be sorted for the next few days.

However this needs to be put on hold a little longer as things outside of the bedroom are about to get busy. Although ironically during most of that time I will actually be confined to my room a great deal more to be able to reserve as much energy as possible to cope with these events. In the next 6 weeks I have 2 big events going to watch Strictly Come Dancing and a holiday to Portugal. And after that it's my birthday. I feel a little overwhelmed but at the same time incredibley grateful. I know it's not going to be easy. I know things could go glitterballs up. I know it's going to take every little scrap of energy and I know it's going to give me horrendous post exertion malaise, making me very unwell. You should have seen me the day after getting the news I had Strictly tickets, fighting for breath and feeling like I had been ran over by the Strictly Express. I also know that maybe it's not the best thing to do in order to preserve my health and to try and avoid further setbacks. But I have said it before and I'll say it again life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance.

 More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been. And that's saying something. I've been of the opinion that it's our own responsibility to create our own happiness and give ourselves chances for a long time. Possibly because I've spent more than half my life now with one chronic illness or another. Or perhaps as I have previously suffered from depression, anxiety and self harm and told myself countless hideous untruths about how worthless I was and that there was no point being alive. Maybe that has given me a greater perspective as well as a healthy respect for my mental health.

People say wow you're lucky and I'm not sure how much I'd agree with that. Yes I have a horse shoe in my room and a four leaf clover in my purse but I don't feel lucky. I'd rather my luck granted me good health and more independance, the ability to work and be more social. These opportunities have only come about though because I applied or booked. I put myself in the frame to have these chances. And chances is the right word, because they are big chances. I'm taking a gamble and hoping that on the day I can get out of bed. There's a high possibilty I won't be able to. That they'll go the way of many other failed attempts and literally all end in tears. Many will say I'm setting myself up to fail. I see it as setting myself up to try. And being a tryer is one quality I will always admire in myself.

Like I said I know there is a high chance things could not work out. I have a full understanding of the reality of the situation. There are many precautions and stratergies that go into any opportunity. Planning to the nth degree to make things possible. And like I said I am fully aware of the reality that things might not work out, despite everything being carefully planned out. As well as the effect such mamouth efforts will have on my health. You can read more about how I manage to leave the house from time to time and the effects it will have in my blopost let me put this in a way you might understand, which I have linked below.

Living with a chronic illness and knowing there's no cure or effective treatment I think you become even more aware of how unpredictable life can be. You feel that most of your adventures are probably behind you. That your life will never resemble that of the average human being again, or what we perceive to be average/ normal. It's a mental health disaster zone in many ways. But the human spirit can be a powerful thing. Somehow you find the strength to get through each pain filled day, somehow you adapt and find ways to cope. Yes, you cry and you curse and ask why this happened to you but somehow you find grit and determination to tackle each obstacle that is thrown at you. It's amazing. I have the upmost respect and admire everyone that gets through each day with a smile on their face and hope in their hearts. Hope is so important. And I think that by giving myself these opportunities it is a way of retaining that hope for me. I have to find some kind of life in this half life existence. I can't have the every day freedom and pop to the shops when I want. Nor work in my dream job as I trained to do. To leave the house at all it's in a wheelchair and with a family member. I'm the woman still going on holiday with her parents, which I didn't expect to be doing at this age, nor does society expect it. However it's the way things need to be to at least make travel somehow possible. To quite literally broaden my horizons. I can try and go after the extraordinary every now and again. As the saying goes "Shoot for the moon, even if you miss, you'll end up amongst the stars."

Sian X

Related  posts:

Let me put this in a way you might understand explaining how mitochondria work and how being able to leave the house on occasion doesn't mean we're better.

Holiday Get ready with me how I prepare myself to go on holiday, step by step from 6 weeks before to leaving for the airport.

Forget the boom and bust? Another post on taking chances and making the most of opportunities if we are able.

The Memory Jar A way of documenting all the special little moments and trying to seek out the good, despite the often bleak existence of chronic illness.

  

Let me put this in a way you might understand

Let me put this in a way that you might understand a little better, what it's like to have M.E. I know at times it can be confusing or not what you'd expect. However, this is most probably because of a pre conceived perception of what you may think living with a chronic illness is and the sometimes conflicting things you might see on social media. No one's social media account represents them completely or documents everything, and the same is true of course of those with a chronic illness. On social media I tend to only post about the happier things that happen. My profiles and feeds (as well as those of many others with a chronic illness) may look like a highlight reel. The things that I've been lucky enough to be able to manage to do. Except of course during April and May when I go into campaign mode to raise awareness. I can well understand that onlookers will see some of the posts and think "well things are probably not that bad then." "She managed to go on holiday." Sadly they may even think I'm overreacting or worse that I'm faking. It can be a little like when someone pulls a sickie from work then post on social media that they've been on a massive bender. Before I post things I often wonder " what will people say/think if I post this? Should I even post it at all?" I know many people in the same boat that are so careful with what they post because they fear the backlash of nasty comments. How it may look as though we pick and choose the days we are ill or better. Or that old chestnut "funny how you can't work but you can go out."  It's true, we do have days that are better than others and days that are wore than others, but there's very little say in how we influence them. I'd like to think that those that knew me before I became ill, which is probably the biggest percentage of my Facebook friends, would know that these statements do not match my personality. However I understand most will be confused. I am confused a lot of the time too!

Anyway, in order for me to do the things I post about, such as going out for dinner, shopping, to the very big deal of going on holiday a lot goes in to trying to make that happen. Like I said there's not much influence we can have on the outcome but there are things we can try. In this modern age most of us won't leave the house without first charging our phone battery to make sure it works when we need it throughout the day. For someone with M.E to attempt being social or to attempt something around the house the same kind of thing needs to apply. We need to 'charge' ourselves up. Sadly, we can't just plug ourselves in. Put basically, for someone with M.E charging up means doing nothing, resting, and by nothing I mean nothing; limiting our activity even more to try and reserve energy and store it up to be used to get us through the event. In chronic illness circles we call this saving spoons. For more info on why we use the spoons analogy read my blogpost on the spoon theory.

 So if we know we have something coming up, a doctor's appointment (see not always fun stuff) or people coming round, the days before or sometimes even a week or more (depending on severity and the type of event) we need to try our best to conserve our energy to at least have a chance.

source: Pinterest

However we are never going to have 100% charge, in comparison to our old selves or a healthy person. Using the functional ability scale by The Association for Young People with ME currently I am actually around 30%. And that is at best! Those times you might see me out of the house, I am functioning at a maximum 30% (it's probably less especially by the time I've got ready and left the house) of a healthy 'normal' person. You can learn more about the functional ability scale here, http://www.ayme.org.uk/functional-ability-scale

This is because people with M.E aren't able to produce energy properly. The mitochondria in our cells, which is the bit that creates energy, is faulty and therefore cannot produce energy as it should. So imagine going to charge your phone and the maximum you can get is 30% of your battery life and that amount of charge has to last you a few days, a week or sometimes more. You'd be demanding a refund or a new one right? If only the same could be done with unhealthy bodies! Therefore even by resting before hand it doesn't mean we're fully fit and healthy when we leave the house and that we have a full battery to use.

 Also because we only have that limited power everything takes so much more effort. Talking for longer than usual may make you out of breath. Getting up the stairs might require a few stops along the way. Adversely the more effort we're using the more charge we're eating up. This is why mobility aids and other equipment are in some respects our saviours as they allow us to do things by minimising the effort it would require without them and use up less of that precious energy. This is also why you may be confused if sometimes you see us standing or walking and others we're in a wheelchair. We might be able to walk a little but not very far and it will exhaust us a lot quicker. Therefore wheelchairs and mobility aids allow us to hopefully do a little bit more. It's also important to know that that 30% charge has to last us throughout the event and even longer. Obviously the event is going to take up the majority of that energy and leave you with just the dregs, which is all you will have to run off for the days/ week/ weeks following.

Unfortunately because of the fault in our mitochondria we can't just eat something or have a quick nap, or a good nights sleep to restore us like a healthy person would. They may work fractionally but nowhere near as effective as they should be, due to the mitochondria not absorbing nutrition as effectively and turning it into energy. As well as because our sleep is rarely refreshing. You only start to slowly regain some quality of living as your body has the amount of quality rest, recovery and sleep it needs to recharge sufficiently.

Source: Pinterest

This is the part you won't often see because we're cooped up, house bound, bed bound, looking slobby in our pj's. Not only do our bodies not produce energy properly but M.E is characterised in particular by a symptom called post exertion malaise (PEM), which is pretty much as it says, although malaise might be too mild a word sometimes. Therefore as soon as you exert yourself (and exert refers to simply moving, talking or thinking,) you are then going to feel more ill as a result. Bummer huh?! So the bigger the exertion, such as a trip to the shops, the more drained of energy you will be and as a consequence of such a large amount of exertion you can feel extremely ill. Although because any activity is exertion sometimes the post exertion malaise can be just as bad after smaller activities. For example to get down the stairs might use up less energy and be a task we can manage on a day when we know our energy level isn't at it's best. However say our energy level is at 10% by going downstairs that energy quickly gets eaten up, leaving you at the very dregs again and feeling potentially just as bad as a bigger event. Just last night I asked for help to come down the stairs as I was getting sick of the sight of my bedroom, only to need putting back to bed 20 minutes later because I was so exhausted and feeling like jelly after the exertion of coming down the stairs. Nice kick in the teeth there !

Many people call this payback. I sometimes refer to it as a side effect from life. I don't get many side effects from tablets but I sure do after doing things. PEM feels like being ran over by a bus or walking straight into a brick wall. It hurts! And this can last for weeks. I guess the closest thing I can compare this experience with that is more relatable is that of having a hangover, but one without the alcohol and lasts for weeks. It feels like punishment. A from Pretty Little Liars has nothing on PEM (Who the hell are you?). Symptoms vary but can include extreme fatigue, exhaustion, muscle aches, muscle twitches, tachycardia, palpitations, breathing difficulties, cognitive problems, sore throat, unable to talk. See my post on what an M.E crash is like for a bit more insight on what we might experience, which you can read here .

However this 'charging up' to be able to do things doesn't always go to plan. Quite often life will get in the way, throw you some "drama" that you need to deal with that will use up that saved up energy and use it up quickly because you are stressing about it. Ironically one instance of mine where this happened was a faulty phone charger. Life can constantly throw things your way that you have to deal with in the moment as best you can, with what you can. A sick relative, an unexpected bill, something breaking, a cold or stomach bug. We're not immune to life's dramas. But all that stress and using up a lot of physical, emotional and cognitive energy is going to lead to some quite nasty post exertion malaise. But what can you do? You can't stop them. Then there are times you can be as 'behaved' as possible before an event and have no dramas beforehand but when the day comes you still don't have the energy and feel too ill to do it. Like I said, we don't get much of a say, no matter how much we try. We're chronically ill after all. Sometimes the energy you use up just to get dressed and ready can leave you too exhausted to actually go anywhere, except back to bed. It's happened so many times. You feel like Cinderella all dressed up with no where to go. That stings to be honest. To know you have given yourself the best possible chance and still it's not enough. But simply being ill uses up a lot of our energy, because our bodies are in a constant state of high alert. Pain is exhausting. Our nerves can be extremely sensitive. Being ill is exhausting and relentless; you're constantly reminded in some way or other that you're sick. So even though you may think "this is so unfair, I've done nothing" it's your illness that has been draining you of that energy.

So to sum up, if you ever see someone you know (or don't know) that has a chronic illness post about going out etc, know that this is certainly a rare occurrence. That they have probably posted about it as they are so made up to have been able to do something relatively normal. To escape the confines of their room or house. But know that this hasn't been easy to do and that there will be consequences as a result. Feeling extremely unwell, barely able to move, just because you did something as seemingly simple as a doctors visit or a meal out. There are times when we think is this little bit of normality even worth it for all the suffering that will follow? However these moments are important for our well being. To break the cabin fever. Because being predominantly bed bound and house bound is hard emotionally, and can be lonely.  I understand it can be confusing but just remember these moments are the exception not the rule. Little moments of trying to grin and bear it amongst the harsh realities.

I hope this has clarified things some what and put them in a way that is a bit simpler to understand. If you still have questions though please do ask. I'd rather answer questions from someone trying to understand than someone passing judgement without trying to understand.

Thanks for reading

Sian X

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.

A royal day!

Copyright: Sian Wootton

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. 

Copyright: Sian Wootton
Feeling Victorious

 

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. 

Copyright: Sian Wootton
Queen of Dragons

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.

Copyright: Alison West
Ali as Princess Anna

Copyright: Lisa Bennet
Lisa another Princess Anna

Copyright: Charlotte Green
Charlotte as Shera The Princess of Power

Copyright: Jenny Horner
Jenny as Sleeping Beauty with her faithful guard dog

 

Copyright: Sally Leadbeater
Sally in Sleeping Beauty mode

Copyright: Anna Jones
Our Queen of Cake

Copyright: Clare Wood
Clare representing Invest in ME, so impressed she made her own crown

Copyright: Emma Anderson
Modern day Cinderella

Copyright: Sarah Mill
Looking lovely

Copyright: Jenny Billings
When you are a Princess for the day, wear all the jewellery!
 

Copyright: Jo Hardstaff
Pyjama Princess!

Copyright: Laurna Thomson
Our Ice Princess

Copyright: H Grungy Parrot
Last minute princess

Copyright: Jane Shadow
Jane and her daughter had a special photoshoot

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

Copyright: Katie Anscombe
Princess Sophie

Copyright: Jane Shaw
Princess Emily and all her fiends

Copyright: Alison West
Costume change for Alison into Princess Elsa with her mini Princess as Anna

Copyright: Sian Wootton
The Princess and the Frog

Oh and one Frog Prince! 

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

Copyright: Helen McKaye
Princess Lucy

 

Copyright: Jac Oliver
Princess Poppy

There is a pooch under that tshirt

Copyright: Michael Dickinson
 

Copyright: Michael Dickinson

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.

Copyright: Jac Oliver
Princesses light up the night

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.)

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

1 weekend, 2 perspectives

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

 

 

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

 

Saturday

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

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

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

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

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

 

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

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

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

Sunday

 

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

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

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

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

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

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

Thank you for reading

Sian

Princess interview with Princess Emma



Copyright: Emma's Looking Glass
www.emmaslookingglass.com

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