Spoonie in the city

The last few years I've shared with you some of my travel experiences and even compiled a whole series of blogposts full of tips and advice on how to cope with going on holiday as a chronically ill person. To read a round up as well as links to each detailed post from the series click here. With advice from researching and planning your holiday so that it tailors to your needs to surviving the airport and plane journey. However the only holidays (besides a weekend a few hours by car) I have been on since being poorly have all been beach type holidays (although I never actually went to the beach once) and have all been to the same place. Sometimes to the point of the exact same room. Familiarity and knowing you'll be comfortable there is something that I have stressed in my research and planning posts because it really is important. And for that reason as well as finding a place that feels like a second home were we are treated like family we haven't strayed from it. Of course this too was new at one point, but back then I was right at the beginning of my diagnosis and able to do a lot more. My parents had a holiday booked and I really didn't think I could cope on my own at home whilst they were away and so I ended up going too. Turns out it was a good call. Also I understand that for you, if you have not been on holiday as a chronically ill person before then familiarity is not something you'll get straight away. However my tips teach you that by doing your research and getting to know as many details as you possibly can, when you get there you already feel you know the place to some extent. Perhaps even before you book. Only book when you are 100% in your choice of hotel, resort and flights and you get a sense of that is a place where you can relax and have a good time. 

Due to me only going on the same sort of holiday and to the same place the majority of my tips so far have mainly been orientated around beach/ Summer holidays, based on my experiences. Although many of them can still be applied to your holiday of choice. At the beginning of the year an opportunity arose to break those boundaries and step away from the familiar. Some members of my family moved temporarily from the UK to Brussels in Belgium and as I knew I would miss them like crazy (they have twins that were 4 months at the time) I started to think about going to visit them.

I love city breaks. When I was healthy I used to love going somewhere that had so much to do and see. I was not really a fan of beach holidays and sunbathing for hours on end, feeling quite bored and like I wanted to be doing something. However of course that really does not comply with the chronic illness lifestyle and so I learnt to love beach holidays. I'll be honest it wasn't hard. When you're already used to lying around all day, able to do very little, getting to do that in glorious sunshine, where they understand the need for a siesta, is an upgrade. In fact the heat and mediterranean air made me feel much better, correcting my sleep pattern and reducing my pain levels, so that was a nice bonus. You can read about my holiday experiences here, here and here.

Therefore going back to try cope with a city break was one that felt rather outside my comfort zone. Or my 'I'm a sick person I'm not sure I can cope with that' zone. Such a party pooper. Of course despite being chronically ill I'm still me, and with that there is still that love of cities. Therefore you can see my conundrum. I understand that this city break was a little different with me going to visit family and yes that did make the decision to go much easier, indeed without them moving there I doubt the opportunity would have arose. However it still came with a host of new challenges. One of which being that we didn't actually stay with them in their apartment. As you can imagine a spoonie living in a small space with 2 4 month olds may prove difficult. Also I needed to make sure I had the equipment that I needed to be able to wash etc.

 Them living there certainly did make me think about how I could at least try and test the waters. Here, was a chance for me to experience something new and exciting. I had told myself at the start of the year that I wanted to experience as much as I could if I could do so and here was a great opportunity to do just that. I want to be as happy as I can possibly be. At the end of the year I want to look back through my memory jar and scrapbook and be reminded of all the great memories that I have despite the majority of my time being spent in pain and bedbound. They're already looking quite impressive, which is such a joy. However in order to make this experience possible and less imposing I needed to tailor it as much to my needs as possible and be armed with all my coping techniques. This included things like:

Finding the right hotel that catered for disabled guests, was close to were my family lived and was in a relatively quiet area. Also a hotel that did room service just in case I was too ill to leave the room. This is were Google maps and Trip Advisor were really helpful

Practical flight times

Booking special assistance

Being picked up when we got there and taken to our hotel

In grasping this opportunity not only have I made some priceless memories but along the way I have picked up some tips and advise for coping with a city break as a chronically ill person, which I can share with you. In my next post I am going to share a bit more about the trip and how I coped. Then I will do a separate post of tips and I also have a funny post that I've been trying to get done for a while now in relation to the trip. 

Hopefully be back soon. If you can think of any tips you would like to know regarding travelling with a chronic illness please leave a comment.

Siân

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.

The legacy of mental illness: Are you okay?

Firstly, apologies for the sporadic blogging of late. As you will know I've been busy campaigning with Team Princess and that took a lot of brain power so lately my head has been a bit spaced out. Just today I tried to bring up the app screen on a bar of chocolate. Maybe I shouldn't admit this on a post where I'm writing about convincing everyone my mental health is fine but oh how I laughed at myself. On a good note while my brain is fuzzy, on days where my health has allowed all my energy has gone into living life to the fullest that I possibly can. More on that in the next post. So I hope you'll forgive the absense. I hope to be back to a blogging schedule soon, because I do miss it. Anyway on with the post....

When you have suffered from a mental illness in the past the chances are you will feel haunted by it long past your recovery. Some how no matter how positive, happy and confident you become there is often a nagging in the back of your mind "remember me? This could happen again." And for all we know it could happen again. An addict will always be considered suseptible to weakness and retriggering a habit and so they learn to avoid temptation as much as they possibly can. However with mental illness, even those that were triggered by addiction, it's very hard to avoid circumstances that could lead you to be more suseptible again. As they say, you can't stop life from happening. Avoidance stratergies for non addicts is futile to a full recovery, because you are still living in fear and not fully overcome the issues that bought on your condition. However of course the more we open ourselves up to the world the more of a chance we may feel we have of giving all those past feelings a green light to come interupt us once more.

There is also the prejudice of having a history of mental illness on your medical records. Sometimes doctors will see that and focus too much on it. Even if your symptoms are physical and years could have passed since you have suffered. When I was admitted to hospital after collapsing and being pretty much asleep for 3 days back when M.E hit me, because it was relatively close to my serious bout of depression where I had gone to A&E a couple of times or been sent for psychiatric evaluations at the hospital (yes I know that sounds bad but it really isn't when you desperately want help) they could obviously see this on my recent medical notes. Because of this once they had ruled out things like meningitis they began suspecting it was of my own accord, that I had overdosed or drank myself into oblivion, or just shut myself off from the world. I had been to a Summer ball the night before I collapsed, so of course this lead them to believe the former even more. Even though I didn't have any alcohol or drugs either for that matter so they could obviously see that in my blood work. It also helps that the junior doctor actually knows the difference between 2 paracetemol for the pain in your neck and enough paracetemol for an overdose, rolls eyes. I had to be asssessed by a psychiatrist again, although all I needed to say was I was not suicidal that I had been having the time of my life then bam my physical health knocks me down. Luckily that was it and he probably felt like they had wasted his time. No matter what you say though, because that is on your records they are going to ask about it. It's going to be a line on enquiry, or possible diagnosis until they have more answers. And that can feel really unfair. It can be upsetting because you feel scared and overwhelmed by these physical symptoms and those you go to for help will in part think it's all in your head. To be fair they have not seen the progress you have made, or how happy you have been, but it still feels like a kick in the teeth. You want to shout " you know why I'm doing okay now? Because as you can see from my records I sought help."

I know that I have all the tools and tricks to lead a positive life now that I consider myself to be recovered. Making sure that I choose to be positive as much as I can and make opportunities happen. Not bottleing things up and being open about my feelings. However I also know that depression can take control even as I fight to keep it a distant memory and that's not because I'm personally not strong enough, because in all honesty I think I am. It's our brains chemistry. My most serious bout of depression and anxiety took me at a time where I should have felt elated. I couldn't really understand how it was happening. And that in itself is a scary thought. To not have control of everything that goes on in your head. Therefore I know all too well that these conditions can creep up at any time and that I am not unsuseptible to their power. However having suffered in the past as well as knowing that that is a part of me and one that has left it's scars, I also know the warning signs and symptoms to look out for and be able to get help much quicker should I need to. Most importantly I know that I have overcome this before, that I had the strength to do so and that that strength has improved every day that I live depression and anxiety free. I feel that should I ever suffer in that way again, and there's always that chance, that I could handle it. Of course if it does happen I don't really know how I will respond but knowing that until that time, should it happen again, I feel I could cope and come out the other side stronger is a great safety net. 

We never know what is going to happen in life and therefore we really don't know how we will react in certain situations that may crop up in our future. Of course sadness is part of life. It may or may not lead to depression. But we can't live in fear of feeling emotions and sadness in particular, because we need to experience release. Avoiding those feelings will potentially cause more chance of us being suseptible. Having feelings is no bad thing.  

So I would like to say that yes I have a history of mental illness. It took over my life in a way that scared and overwhelmed me. But how am I now? Honestly, stronger and happier than ever. I know how to keep myself in check and all the warning signs I should look out for. As well as what to do should they arise. I know that it's ok to feel sad, frustrated or hard done by, especially as I have a chronic illness that has left me predominantly housebound. I worried when I was first diagnosed with M.E that I would be a sitting duck for depression. I even visited my local Mind and booked an appointment with my former councellor. But so far so good. 4 years later and I only had that one counselling session to express my anxieties about being diagnosed with a chronic illness and the effect that might have on my mental health. In the last few weeks I've also finally been weaned off my anti depressants. I haven't really needed them for a couple of years but have kept on them due to the interaction of my other medication working well for sleep and pain levels.

So if I tell you I'm not feeling good today generally I mean physically and that is probably an underestimation for feeling absolutely shockingly awful. I don't mean I feel depressed or down. And if I did I would certainly tell you, so that I can get things off my chest. So don't jump to the conclusion that not feeling good means I feel down. Accept that I will tell you if I feel sad or worried. And I will of course seek help if I feel I need it. I know my situation means I could very easily get depressed with living with a chronic illness. However, I let myself get angry and upset when I need to, allowing myself to vent. It might seem mad to actually say I'm happy, happier and more confident than I have ever felt but it's true. And I am so very grateful for that. I really do not want to experience what I did again but if I ever do please ask me if I am okay and please listen to my anwers. I promise I'll be honest and I promise I'll get help.

Sian X

Youtubers on Mental Health

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

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

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

Zoella

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

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

Pixiwoos

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

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

Ingrid Nilsen

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

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

Jonathan Joly

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

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

Sprinkle of Glitter 

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

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

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

Links to Mental Health Charities:

www.mind.org.uk

www.rethink.org

www.time-to-change.org.uk

www.samaritans.org

Links to my January Blues posts:

January Blues Introduction

Signs and Symptoms

Why do I feel so bad?

Where can I get help?

What help is available?

I need help now!

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

Sian

X

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.)