Wednesday, 25 May 2016

#MillionsMissing

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#MillionsMissing is a global protest held today, dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of pounds are missing from the research and clinical education funding that ME should be receiving. And, millions of doctors are missing out from proper training to diagnose and help patients manage this illness. 



Here's a picture of my pointe shoes, which I'm hoping will tell a story just by themselves. A lot of you probably know my story now, I blogged a bit about it on ME Awareness Week earlier in the month, but I'll do a quick summery for those who don't know to go with my above #MillionsMissing photo. Before 2008, I was a very academically bright, sociable, sporty young girl + was in training to be a professional dancer. I spent up to 7 hours a day dancing as well as keeping on top of school work, sport clubs + socialising. September 2008 I became ill + everything snowballed unbelievably fast. I became wheelchair bound, started crawling around the house and then at my worst I was in hospital paralysed. I've spent most of my 8 years being severely affected, but I'm so lucky compared to some of my friends. ME has made me miss out on so much, from university to simple things like being able to walk to my local shop which I haven't done in 8 years. 

As I was discussing with one of my friends the other day, social media like Facebook is often a 'highlight reel' of our life, so you don't see me, or others, when we are poorly as it's not the kind of thing we want to share. This is why I think this idea of the shoes is an amazing campaign and I have no doubt it's going to grow year on year. There's so many poorly people stuck behind closed doors that people don't know about. It's time there was more awareness, understanding + funding to go in to supporting and diagnosing ME sufferers. 

Kate x


http://millionsmissing.meaction.net



Tuesday, 17 May 2016

The Anxiety Bucket

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As some of you may know, it's mental health awareness week. I wrote a blog a few months back for timetotalk (which you can read here), and because of the (unexpected) incredible feedback, my psychologist asked me last week to try write something on anxiety. Originally, I wrote this post so only she could view it but I don't think having a mental illness is anything to be ashamed of, and with my main goal of helping other people, I've decided to publish this today.

There's a saying that when things get too much, your bucket is full and therefore the smallest thing can cause it to overflow. This bucket represents my anxiety and the tiniest thing can tip me over the edge - resulting an overflow of uncontrollable emotion.

Of course, everyone has different sized buckets, so how quickly we fill them depends on each individual. But, for now,  lets say I have a normal sized builders bucket. Carrying an empty bucket around is a pain and awkward, but, somewhat manageable.  Now, carrying my bucket around 1/4 filled with water is getting harder. Lifting it up for a few minutes is ok, but the longer I hold it, the heavier it feels. Although the bucket isn't necessarily heavy, I'm aching by the end of the day. The longer I hold onto it, the harder it gets. A heavier bucket interferes with everyday life, I cancel plans and can't do certain activities with it, and the amount of time I can carry the bucket around gets shorter, and harder. Now, my bucket is almost full. I have to tread very carefully so that I don't spill any of the contents. It's crippling to walk around with, so I'll stay in bed and can't to do anything. This is the only way I can describe my anxiety.  On some days, my bucket will only be 1/4 full. I can function relatively well, but at the end of the day I'm still exhausted from carrying even the smallest quantity around all day. Despite it only being a small amount, I can only hold onto it for so long and even though the anxiety is the same, it feels like its getting heavier and heavier by the hour until I crumble. On my bad days, my bucket is already full so I feel almost paralysed by it. Having such a heavy weight to carry around all day seems totally unmanageable and it gets too much. 

The tiniest thing can tip my bucket. It's already full from every day life, so one small stress can tip me.  I also have to take into account my ME. My ME, physically, means that I am not as strong as I used to be, but emotionally too. Because of my ME, this 'bucket' is so much harder to carry around and I'm weaker so can't handle as much. For example, I (embarrassingly) cried to the point of sobbing and then collapsed on the floor in the chemist last week when they told me I needed to call the doctors about my prescription. I had a panic attack the week before because the fuel light came up on my doctors car whilst she took me out to try get me back into the community. It's that ridiculous. I have panic attacks every day. Sometimes they can be smaller attacks but other times I go into psychogenic seizures.

It's not just the panic attacks I have to deal with, I have generalised anxiety too which is there all the time. I can't describe my anxiety, all I know is its a similar feeling to when you accidentally miss a step on the stairs, but constant. It stops me from doing an awful lot of everyday things, from going to people's houses to eating. I challenge it everyday in the hope that one day I'll wake up and it'll be a little bit easier. And I'll continue to do so. I have a high level of medication to help control it, on top of therapy and panic CBT each week, which helps me to manage my condition as well as 'empty the bucket' in a controlled manor so I can have a bit of relief. I've been to some very dark places with my anxiety, and I'm not going to lie, having back to back 4 hour panic attacks whilst I'm confined to my bed is always going to phase me, but I'm trying hard to work with my team to help me get back on the right path. My anxiety doesn't just effect me, and thats what frustrates me. I loose friends because I'm too scared to go new places, I miss out on incredible opportunities because I can no longer travel, but most importantly to me I miss out on key moments of my families life like taking my nephew out for the day because I'm sat shaking in bed. And the fact other people have to go through this too, with such a bad stigma attached, is what really gets me.

So, if you've managed to read all of this + made sense of even half of whats going on in my head - thank you. It's time people talk more about mental illness in the hope that one day everyone will be understanding. I'm taking steps to try explain it to my friends more + I'm sure that anyone who suffers will join me in doing the same. More + more people are becoming a lot more open about their battles with mental illness and I think that's the first step in not just helping other people, but helping ourselves.

Kate x

'Sometimes it takes an overwhelming breakdown, to have an undeniable breakthrough'


Wednesday, 11 May 2016

'So you're ill... every day?!'

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'So you're ill...every day?!' she says with a confused look across her face. 'Yes, every day' I reply.

I don't know if the words 'every day' feel like they're big enough when describing how long I've been unwell for. I could say I have been poorly 24/7 for the past 9 years, which is a pretty big chunk of my life, but let's be honest - we don't want to depress the poor woman who's only trying to understand.

Today, on the 12th May, is ME Awareness Day. A condition which is largely misunderstood, but is also now becoming increasingly common. Back in the early days of my diagnosis it was rarely heard of, but even though the condition is now more recognised,  the stigma attached is still very apparent.

'So, what is ME?'. My reply, 'I get tired a lot + I have a lot of pain'. I don't know why I give such a short + vague answer. I obviously don't want to lecture poor soul to death but I also don't particularly like talking about the impact it has on me. Anyways, it's hard to put into words.

I don't think I can even begin to list the symptoms of it never mind the treatment I require. For example; this week. I've seen a physio, a psychologist, a gastroenterologist, an acupuncturist, an occupational therapist, a gp and a social worker. I've had x-rays, tubes, needles and had fainting, multiple dislocations, seizures + meltdowns. Despite being ill for so long I get new symptoms + complications every week, and although I have number of other chronic + life limiting conditions, the majority play hand in hand with my ME. I'm a medical mess, but to think most of these things have all stemmed from one illness is astonishing.

What you see definitely isn't what you get with this illness. It's invisible. Which makes the understanding of it ten times harder. Most people will just see me on my occasional appearance at the pub on a Friday night. The amount of planning I need to do just to go out for an hour is insane. It literally takes me a weeks notice to work out how I'll manage to get out on a Friday night. I know if I go out on Friday I can't do anything else that day and the day after it - literally. Everything needs to be planned to the finest detail, from working out if I can walk from the car to taking my tablets at a certain time so my pain meds kick in whilst I'm out. I'd go into detail expanding this, but it'd be a rather long blog post so I'll stop there.

As with everyone, social media tends to only portray life's 'best bits'. The only glimpse you get that I'm ill is the occasional wheelchair picture. I don't want to be too negative + show you at my worse, because it is quite frightening. I watched a video not so long ago taken when I was screaming in agony from a seizure and it's not something I'd want anyone to see let alone experience. I want to help people gain a better understanding about my conditions, but not terrify them in the process. I usually post (a lot) of photos of me with my make-up on, smiling + outside. But it can be a false picture and maybe it's up to me to be a bit more realistic with things I share. I've learnt though, I don't have to explain it to everyone. It doesn't matter if some people think I'm that 'well' all the time, the ones who care, ask.

So, to my final question, 'Are you going to get better?'. This is the most common question, and in all honesty, I don't know. I'm aware I'm a complex case + I've been ill for quite a long time with very slow progress. I've been told no and I've been told maybe. And that's all I can really say. I think the most important thing is focusing on now + how you can support your loved one going through ME. It could be a long + bumpy road, but even a small gesture like a text to check how they are can brighten up someones day. One of the toughest things to understand is that ME fluctuates so much, so what can work one day might not work another. But, talk to us, we can tell you more about how to help + explaining more complex, but necessary things like pacing and the spoon theory.

I do still struggle a lot, but I'm so thankful for where I am today, even though I know I have a long road a head of me. I've been very severely affected to the point where I was paralysed and couldn't even feed myself, but I've also been well enough to travel to London to see my friends for a weekend. I currently still have a very high care need, with both agency staff/hospital + my family looking after me and supporting even doing the tiniest tasks like helping me get ready and cooking.  I know now I relapse about twice a year and I just make the most of what I can do at the moment. ME has taught me a lot, from who my friends are to learning to love new things. It's all a journey for myself and all other ME sufferers, so I hope you can join us in supporting us both now and to find a cure.


Kate x

www.ayme.org.uk
www.smileforme.org.uk
http://www.itv.com/news/tyne-tees/update/2013-05-08/teenager-with-m-e-says-shes-accused-of-exaggerating-her-illness/