Sunday, 18 May 2014

Am I invisible?

Photo source, pinterest

As the blog is now a year old I want to reflect on some of the reasons why I started this blog and what I've gained from it in the past year. I started this blog at a time when my illness was becoming more severe. A time when I was very scared to be honest. I didn't really know where to turn. Yes, my doctor could send me for more blood tests and try and rule out anything else. Check for signs of muscle wastage etc. Anything 'more serious' as they like to term it. Well to me it was serious. I was loosing more and more strength in my legs and the length that I could walk for was decreasing rapidly. I was needing to use the surgeries wheelchair to get into the doctors. Of course I already knew I was sick and had my life turned upside down because of it. Unable to work, only being able to do things on good days and then paying for it in increased fatigue for days if not weeks after. However I was now facing losing even more. My legs were literally being taken from under me.

When I was first diagnosed I knew of a local support group and had attempted to join in some of their gathering but was simply unable too. It seems somewhat redundant to have a support group when the very illness that the support group is for stops you from attending. I'd also attended M.E clinic but since being discharged it felt as though I was left out in the wilderness and as I explained in my year in review post I had gained no insight there that the illness could do this. The world felt like a lonely and scary place. 

Around this time I was reading a book by Ali Harris called 'The First Last Kiss' in which a young woman starts a blog to help her to deal with her life being turned upside down. I won't give away details, you know I hate a blurb, and also because I don't want to spoil it if you haven't read it, which I recommend that you do. Before hand I knew a little about blogging and it was something that I would have attempted as part of my journal work for my masters degree but I had associated it with people that had stories to tell, tales from their busy and exciting lives. Neither of which I had at that point. So what would I even write about? Who would want to read about how I spent 18 hours asleep had some painkillers then went back to sleep. But after reading this book it made me think that maybe I did have a story to tell. In the trailer for the Canary in a Coalmine project there is a woman filming herself shaking uncontrollably due to building noise and she says to the camera "I think someone needs to see this". And that resonated with me so much in deciding to write this blog. Much like in the book I wanted to share the nitty gritty details, the things no doctor could tell you. The things people could do with knowing in a way. It felt like the only way that people would know the truth about the illness.

On top of this, I had always found writing to be a good form of therapy. To get my feelings down on paper and out of my system as it were. I'd always found this cathartic. So if no one else read the blog then  it didn't matter as it was just as important for me. To help me cope with the changes that were hapenning in a positive and constructive way.

So as my illness became more visible to the public on the ocassions I could leave the house and more sick person paraphaneilia started to appear around me the more visible I decided to make the profile of this illness. I said from the beginning that if I could educate just one person about M.E then I would feel humbled. In the past year of writing this blog I'd like to believe I have educated a few more. It's always great to get a comment from someone saying that they had never even heard of it and now thanks to me sharing my experiences they do. If more people could recognise an M.E sufferer if they saw one then that would be great for awareness. I don't think someone who see's me in my chair automatically thinks "oh, there's someone that suffers from M.E." More than likely they would look at how old I appear to be and think "I wonder what she did." When I can get out, sometimes I like to dress up a bit more or put on more make up than I used to which I think further adds to the public's confusion. There's no obvious plaster cast or pregnancy bump or a headscarf covering up a bald head to give them a clue as to why I'm in a wheelchair. If someone saw a photo of you with a feeding tube (not that I have one but I know sufferers that have) they would probably think it was due to a digestive disorder. Not that you physically do not have the energy to chew. If someone saw someone with sunglasses on, on an overcast day they would probably think that you're wierd or trying to channel a celeb,not that even the minimal daylight is too bright for you to process and trigger migraines. More on the publics perceptions soon (well hopefully soon.)
Most would probably say they'd never even have heard of M.E. Or at least not known the full effects of it. I had only ever known it was a medical condition but no details about it.

And so I decided to step out of the invisibility cloak. To reach out and find other sufferers that were also in hiding. At first I didn't know just how much of an online community there was. I had read a few blogs but they seemed to peter out once they'd recoveted somewhat. As I began to share my blog the more I discovered that there were many more sufferers in exactly the same situations. Plenty more people brave enough to share their stories. And so the world became smaller again, less lonely. If I wanted to talk about my illness all I had to do was go online and there were people who understood. If I felt cut off from the world then I could find friendship online. That has been one of the greatest gifts from blogging. In a way it's given me a social life again but one that I can manage. One where I can just be completely myself and not doctor my illness so that it is more publically acceptable. Of course I'm not saying that   having 'normal' friendships and social interactions should be replaced by this. They are still very important. But it is nice to have a shared understanding that no one else can. 

So am I really suffering from an invisible illness now? I'm talking about it more now to help raise awareness and of course with the wheelchair etc people know something is wrong. But like I said unless they knew me well they'd probably never think it was M.E. The only way I'd say that my illness is currently invisible is due to the more bedbound and housebound times. No one sees the really bad days apart from my family who I rely on as my carers. And recently that changed a little when I decided to post a photo and a description of my symptoms the day after M.E awareness day when I suffered from really bad Post exertion malaise. I know some people will have just ignored it, just scrolled through to a more intetesting status. I know some people will think that I was attention seeking or wanting sympathy. But there were others that took time to read it. People that I thought may comment or be in contact didn't but on the other hand some I never expected left lovely comments. I wasn't asking for sympathy or attention it was my way of fighting. Those that know me well know that I'm pretty determined and although my cause has changed and I have limited energy to use I'm still determined. Those photos and all my statuses or tweets about M.E are my way of saying "oi listen and take notice of this illness!" My way of doing what I can to help our cause. Like I said earlier as long as I'm helping to raise awareness too then I'm very grateful.

This is a topic that I could write so much about and I will write more on other  posts. It's long overdue that this illness was made more visible. It's by making this illness more visible in what little ways we can that will get this illness noticed. It's not until this illness is noticed that we may be taken seriously. The government may give us more funding and funding to find a treatment that will be effective not just for more psychological treatments that make no inroads what so ever. To make sure that clinical services are offering equal programmes across the country not a postcode lottery depending on what healthcare professionals are interested in M.E in your area. Making this illness visible is our biggest fight at the moment and one all us bloggers and advocates are trying our best to change. If awareness week taught us anything, it's that there are many many sufferers desperate to be heard.  However being ill there's only so much we can do. We're the only ones that know what it's really like but we need someone healthy to champion our cause. To put in the muscle and energy that we can't to make this illness more visible. 

Sian
X

Friday, 16 May 2014

The Princesses and ME

Photo source: Pintetest

Finally I am getting round to posting about our The Princesses and M.E event on Monday 12th May, which was M.E awareness day. Just to recap, the reason  behind the Princess theme came from joking around about Sleeping Beauty having nothing on us M.E sufferers. And just like the Princess and the pea we can often be hyper aware of the smallest of things. The clothes on our skin. Each crease in our bed sheets. When we can sleep that is. Although lucky Auroura got whisked off by Prince Charming and lived happily ever after. Well as much as a handsome Prince wouldn't necessarily be unwelcome, finding some long lost answers in the form of clearer diagnostics, research, an effective treatment and the wish that my heart makes, a cure, would be a very happy outcome for us. 

Photo source: Sian Wootton

So here I am all Princessed up for the ocassion. Mastering the stairs at the best of times isn't easy so doing it in that dress was rather challenging. Definitely not to be attempted in heels as well, hence the Cinderella esque photo. She may have left her shoe behind but for us sufferers it's our previous lives and very often our brain cells. Contrary to popular believe the object in my hands in the top centre photo is some knitted peas not a frog. They were given to me as a gift. Below is a montage of all the other Princesses that managed to dress up on the day. Great effort ladies (And Allan)!

Photo source: Sian Wootton
Photo source: Sian Wootton

Photo source: Sian Wootton

And of course most of us don't have wicked witches that send us into a 100 year sleep by making us prick our finger on a spinning wheel. We are far more likely to prick our fingers on these...

Photo source: Sian Wootton

M.E Awareness day this year was just epic. I still have lots of blog posts to read. So many people joining forces to raise as much awareness as they possibly could. Even a retweet can generate so much awareness. Despite our suffering people really did show that things need to change. That they want a better life for themselves and other sufferers. Unfortunately not everyone was able to participate as much as they had hoped but that in itself shows the depth of the illness. The event was never about pushing ourselves too far, just doing what we could. Having said that I did go a bit too far. I got a bit carried away with the joy of organizing something again and being part of such a lovely and dedicated group of people. 

Photo source: Sian Wootton

The above photos show me all made up in Princess mode and on the right is me that night, seriously suffering from Post Exertion Malaise or Post Princess Malaise. I was exhausted, in pain, couldn't talk or swallow and completely bedbound the next day. I decided to post this photo on my instagram and Facebook to try and raise a bit more awareness. I wanted people to see what M.E actually looked like. Like I said in my invisible illness post, it wasn't about seeking attention or sympathy but showing the truth to raise awareness. It was great to receive some lovely comments. Heck it was great people even read the post!

Photo source: pinterest

In total The Princesses and M.E raised over £4000 for Invest in M.E, which really  amazed us all. We now have two matrix slots for the Rituximab trial and the rest of the money raised will go towards more biomedical research to try and find where abouts this nasty disease is hiding in our bodies. That way we can target it and hopefully eliminate it. 

It was great for me to be organizing events again. However it was a gift to be part of such a dedicated team. I think it was the proudest I've ever been. Here's a group of seriously ill people, many of whom are mostly housebound and yet they have so much to give. It's one thing I will be grateful to M.E for. Bringing some really inspiring people into my life. 

So all in all it was a great success and loads of fun getting to be a Princess for the day. Thank you to all the Princesses, whether you were able to dress up or not and a HUGE thank you to everyone that donated. That money really will make a difference. Now to think about next years venture!

Sian x

Monday, 12 May 2014

But this is ME

photo source: pinterest

I refuse to be defined by my illness. M.E might be having a big impact on my life but I refuse to let it become my life. I'm still all the things I was before and more. Stronger even for having battled through and kept my humour throughout.

photo source: Sian Wootton

I'm still determined and dedicated. It's just had to be redirected a little. Now I use it to get better, to find the good in each day. I'm dedicated to raising awareness of M.E and mental health issues. Fundraising too, to get a much needed biomedical research. To find answers, treatment a cure. So that not only existing sufferers will benefit but also so that those who will develop the illness do not face such hardship, disbelief and their lives thrown upside down.

photo source: Sian Wootton

I'm still caring and thoughtful and willing to help others in whatever way I can. One of the hardest things in accepting this illness for me was realising that I could not be there for others as much as I would like anymore. I need to think of the effects every action will have on my health. However, I will still do my upmost to do what I can. Comforting those that need it, lending a shoulder to cry on, an ear to listen. I'll often send little gifts to friends when I can. Perhaps something I've made. Sometimes just making people smile and laugh can be the greatest gift and as you can see from the collage below I can be quite creative with this artform.

photo source: Sian Wootton

As you can see I can be a bit of a joker. Laughter is just so important. If you can make someone else laugh then you are giving them a great gift. If you can make yourself laugh despite your struggles then you are stronger than you may think. I always try to find things in each day to laugh and smile about, no matter how bad it's been. It reminds me that I can take some control. My body might be rebelling on me but my mind can help me cope with that. I'm also keeping a memory jar, writing down good memories, things that made me smile or laugh and putting them in a jar. Then on New Years Eve I can read through them all and be reminded of all the good things that happened. Not just of another year being ill.

Photo source: Sian Wootton

I'm an avid reader. I've always loved reading but it used to just be a ten minute thing before sleep. Now I read when I can. One of the biggest symptoms of M.E is brainfog, not being able to think straight. Your mind just shuts off, or you can completel forget the word for something. It's frustrating, but I think that reading when I can has helped me to keep my brain more effective. Since becoming ill I have also started a new hobby of making jewellery. I thougt that it would be too difficult what with being clumsy and shakey but actually it forces you to focus on those fine motor skills and I have completely fell in love with it. It's so rewarding to make something and to see other people wearing your creations. It's a symbol of 'keeping going' again looking after my mental health and finding new things that I can do, when I'm able rather than thinking of what I can't do.


photo source; Sian Wootton

I have also noticed that my style has changed since becoming ill. I've certainly become much more girly. The clothes that I wear when I'm not in my pyjamas have to be more comfortable. Jeans are out. Dresses and leggings seem to work well for comfort and being sat in a wheelchair I don't have anything digging in to my stomach. I make more effort with my appearance now. Why? Because feeling good on the outside can influence feeling good on the inside. I'm not talking about feeling better M.E wise but just feeling less grotty and more human. Of course then you can face the old "oh but you don't look sick" but you have to do what you can to help yourself cope with the constant rubbish. An M.E friend of mine developed lipstick Tuesday, where every Tuesday you put on a bit of lippy and look a bit more glam no matter how bad a day it is. It's since developed into Chipper Tuesday where it's not just lipstick but anything that you can look at and instantly feel uplifted. A pair of cute socks for example or painted nails. It's really important to have these small gestures that can have a good psychological impact. 

So that's a little bit about the person behind M.E, there still is more to me and just being ill. I'm still the same and probably much stronger and determined because of my struggle. I wish I hadn't learnt to be this more improved person through illness, but it is pointless to think like that. I cannot change what happened but I can help myself to cope with my lot and I will try my upmost to raise awareness and fundraise to get answers for this illness. 

You can help by sharing this post or donate if you can at https://www.justgiving.com/Sian-Wootton/

Thank you so much for reading, I hope people understand a little more about this illness now

Sian  xx

This is M.E

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

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

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

photo source; Sian Wootton
There can be days when you can get out for a hour or so, for me that's using a wheelchair as I can't walk far or stand up for long. Days where you're not too fatigued or in too much pain.Days when you get out for the sake of your sanity. Completely fed up of staring at the same 4 walls. Days where you will put on a mask to try and at least look a bit less sick. 
But with M.E the biggest symptom is Post Exertion Malaise, meaning you will get a big spike in symptoms after exerting yourself. Getting out of the house, even sat in a wheelchair, can make you very ill for days after. Sometimes exertion as simple as going to the bathroom can have just as bad an effect. Leaving you feeling like you have literally been hit by a bus (I used chocolate to demonstrate ;-)). So again you need to find the balance in maintaining good mental health and some 'normality' and not making yourself worse.

photo source; Sian Wootton
And if it's not my body reminding me I'm ill all I need to do is look around me.  My bedside table has a box full of things that I need close by to help relief symptoms or just so I don't have to waste precious energy going searching. 
From baby wipes to keep me cool and fresh to lip balm to help cracked lips.

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

photo source;Sian Wootton

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

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

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

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

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

This is our chance at hope
Sian x

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




Tuesday, 6 May 2014

Anyone want to have tea with ME?

This is just a quick post as I've been feeling extremely rough the last few days (after getting excited over some fab news of all things) and I need to preserve my energies for next weeks fundraising and awareness events. I will continue with my travel series as soon as I can after the awareness and fundraising posts.

However I just wanted to let you know about an event that one of my lovely fellow ME warrier Anna had organized to help raise awareness of the illness and money for the ME Association. She will be holding an actual tea party at her home with friends and family. Not wanting her Spoonie friends to miss out though she will also be hosting an online tea party. You can see the events Facebook page here.

So if you would like to join in it's as simple as well cake. Get yourself a cup of tea and as much cake as you want and log on to social media to post a photo of yourself enjoying your cake with the hashtag #bluesunday. Keep up to date with the goings on of the actual tea party on the event page and chat to other sufferers on there too. Why not chat to someone you've never spoken to before? Expand your circle of spoonie friends. You could even be in with the chance of winning a prize just for posting a photo and of course loving cake. Or you could also win by making a donation. Donations can be made through justgiving here.

Remember to tell your non spoonie friends that you're taking part too. To get the message across for ME awareness. 

Lady Anna, rest well this week and enjoy the day. She will also be sporting some lovely tea party themed jewellery (if I do say so myself) that I made her for the ocassion. See photo below.

Hopefully see you there. I'm off to rest and make the very tough decision of what cake to have.

Sian x