Monday, 28 November 2016

Kate's 12 Days of Christmas

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Well, it's been awhile since I've been blogging. But, I'll get back into the swing of it once I have a bit of extra time (and energy!) on my hands. I wanted to share with you my little project though, which links to my little doodle I've done above...

Christmas can be an amazing time of year. Full of festive spirit, gifts and family love. But, there are a lot of people out there who find Christmas difficult. This might be because they don't have family around, money can be tight or they could be homeless on this cold winter period. There are so many people out there who need some help, but there is support available. Whether this is through charities, individuals volunteering or donations - they too can need a helping hand.

My (pretty incredible) friend Danielle is doing 25 Random Acts of Kindness over the Christmas period. I love doing things like this, so decided to do my own (slightly more manageable) 12 days of Christmas RAOK's. Most of these things cost very little money, and just take a few minutes, so I'd be over the moon if anyone joined in. Even if it's one thing, it honestly can make such a difference.

So, here is it, my 12 Days of Christmas.


1 - Support Post Pals by creating a Christmas package for a sick child
This literally can cost you the price of a stamp. Postpals supports seriously ill children in the UK by sending letters & gifts to the ill child and their siblings. I've wrote many cards before, and from being on the receiving end of getting post from friends when I was very unwell, I know what a difference it makes. There's even a guide online as to what to say, what the 'pals' interests are and any extra information. It's an incredible charity, so consider writing an extra card when doing your Christmas post this year.

2 - Put some extra food in the shop and donate it to a local food bank
This one is pretty self explanatory. Nowadays, there is local food bank collections in supermarkets so it's so easy to pick up an extra few tins or toiletries to donate.

3 - Support local businesses
Buy a Christmas gift for someone from a local business or attend a local Christmas fair, Even talking to local traders can help so much.

4 - Say thank you
It sounds easy, but how often do you thank the people who help you. Whether its the pharmacy that dispenses your medication each week or a friend who's always there, thank them for all they do.

5 - Donate loose change to charity
There's always charity pots by cash desks these days, so pop in spare pennies - it all adds up!

6 - Volunteer for a local charity
I've helped some local charities over the past month and you get a proper buzz out of it. Do a little bit of research on smaller charities in the area too - these often need the most help!

7 - Making up an art pack for an art based, mental health organisation
I have been to Chilli Studios and it's an amazing place. It helps people with mental health problems use art and provide a safe place for recovery. Like all services, it relies on donations and grants but honestly is an incredible project. So, Danielle and I are going to make up an art hamper to give to them to help them continue the good work they do.

8 - Handmake a Christmas present for someone
There's something special about receiving a handmade present, which is why I've decided to make a few of my own this year

9 - Give a present that lasts - sponsorship gifts
There's lots of gifts you can give which leave a lasting effect to those who receive them. One example is (my own, sorry for the plug...) Project Parent which allows you to sponsor a box for the year for £10. There's lots of other sponsorship projects, like sponsoring an animal, child or local project. 

10 - Pay it forward
The pay it forward campaign is an easy one. If you're in a coffee shop, for example, the idea is you pay for your order and for the person behind. Mum & I did this a few months back at Starbucks and the lad we gave the free coffee too was so so happy!

11 - Use your hobbies/talents to make a difference
I'm doing a piece of textile work for Canine Partners to hopefully auction off. I struggle with knowing what to create and having a focus like this has really helped. Whether it's making crafts, cake for a coffee morning or anything else - it all matters.

12 - Let your friends/family know you love them
I think a lot of people, myself included, take people close to you for granted. And I know I need to make sure they know how much I appreciate them. Whether it's a quick text, hug, or letter - I'll try let them know I'm thinking of them.

I hope that some of you can join in with similar activities. Like I say, the cost for some of it is only a stamp so anyone can do it. And either way, I hope you all have a very, merry Christmas.


Kate x




Friday, 2 September 2016

ThinkBig Digital Awards

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It's been a little while since I've been blogging - but I have exciting news! I took some time out, due to a relapse in my health, but I wanted to share with you my latest achievement.

I found out in July I had been nominated for a O2ThinkBig Digital Award. For all those who aren't aware, o2thinkbig funded £2,800 and provided training & support for me to set up Project Parent. If you're 13-25yrs, and would like to improve your community, they can help you with training/costs/opportunities - all you need is an idea! 

I was one of a handful of people nominated for this years awards. Unfortunately, due to health reasons (as always!) I wasn't able to attend the awards myself. But, the team have been amazing including me, so my parents traveled down on my behalf & I recorded a video to be played on the night. My parents said the night was amazing, they met so many inspirational people and heard so many stories. And, to my shock, I won 'Most Inspirational Project' of the year! 

My parents came back buzzing and it really kick started them into helping out again. It didn't hit me until a week after that I just won a national award, as I was struggling a lot with my depression, but now I'm very proud.

I can't thank o2ThinkBig enough for all their support and work. I've actually been chosen as a Think Bog Champion which I'm so excited for, so I owe a lot to them. Also, I have an amazing little bunch of volunteers who I couldn't do without. From packing boxes to doing marathons to raise money for Project Parent, every little (or huge!) thing counts.

I nearly stopped Project Parent this year after an awful meeting with a funding group (who basically slated me but that's another story...) but now I'm keen to get going with it all again. I'll continue and work hard for all the opportunities I've been given, whether that's Project Parent or just helping in the local community, so I hope you can do the same. Even better, send me your stories. I love knowing how people make a different.

Il leave you with a few photos of my newspaper article, Gemma Brown did an amazing job getting the story out and it was such a sweet write up - so major thanks to her!

Love as always, Kate x

Wednesday, 29 June 2016

Surviving concerts - the disabled guide

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Today, I feel rough. Why's that? I only went to go see Beyonce last night! It's not often I get to go out never mind do anything big like go to a gig, so I'm obviously feeling a bit fragile today. It didn't go exactly to plan, with the Stadium of Light selling more disabled tickets than they had space for, so I decided it'd be good to put a few little tips together for those of us in wheelchairs going to concerts.

  1. The tickets. Firstly, the area a you go to more than likely have a designated disabled bay for wheelchairs. If you can transfer to a seat, I always recommend considering just staying in your chair as steams seats are usually plastic and extremely uncomfortable so do nothing for pain. Also, on occasions I have transferred they've had to take my wheelchair away and store it st the other end of the arena which is a nightmare to get if you need the toilet/at the end.
  2. When you get the tickets printed, double check that you've got the right ones. Twice have we been told we had disabled ones and they accidentally put us on normal seats!
  3. Check there Carers policy. Usually you can have 1 Carer stay with you and get a free companion ticket, but the policy for this depends on each place.
  4. Parking. Usually there's a limited number of disabled bays close by so if you get there early you'll get a spot. However be careful, as because they're so close you usually get stuck at the end with all the people leaving the arena so it can take a long time to get out!
  5. Check what time your actual act starts and finishes. Beyoncé last night started at 4.30pm but she wasn't on stage til 8 (well, 8.30 with the Queen Bee being late). If you've got limited energy like myself only go for the act you really want to see and be prepared to leave early if you get fatigued.
  6. Plan everything you need. Ear defenders, sunglasses, raincoat (if you're outdoors of course!) with blankets, supportive cushions, medication for if you're out at your usual meds time + extras for pain... Ect 
  7. Have fun. Be mindful that you're going to feel rough for the next few days but enjoy yourself. Don't forget to take a photo of your achievement for if you're feeling rough for the next day/week to remind yourself why you did it!
Send me pictures if you see anyone exciting!
Love Kate x

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/


Thursday, 10 March 2016

Importance of Self Care

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Whether you're ill or not, self-care needs to have a part in our lives. The constant buzz of devices nowadays and the stress of having a million things to do can sometime get too much. So here's 5 ways to calm down.


  1. Take a bath. Putting your favourite bath bomb in, lighting a candle and fully relaxing for 15 minutes is something I rarely do. I've started adding magnesium and epson salts to my relaxation bath to try get my muscles to participate, but just being able to stop for awhile is lovely. When you get out, moisturise to continue the relaxed feeling.
  2. Switch off. Lets face it, we are addicted to our devices. Phones, laptops, tv's... I know my mind is constantly buzzing and even when I am bored I find myself refreshing facebook. So just turn them off. Simple. Half an hour of no eletricals and you can relax or actually talk to people face to face. 
  3. Have a cuppa. Personally, I love a good cup of tea when I'm feeling poorly or stressed. There's loads of flavoured ones out there to help with different problems too. 
  4. Read a book. I know my concentration is bad so I tend to read a lot of self care books or sometimes children's stories. Get something you're interested in; crafts, baking, colouring...ect 
  5. Pets. Animals have a (mainly) calming attribute. Stroking your animal for 10 minutes is a good way to focus. Don't have a pet? Borrow one. I borrowed a friends dog for a day when I was poorly, it's a good idea! 
Everyone has different ways of coping and managing their own emotions and responses, so find whats right for you.

Kate x

Wednesday, 3 February 2016

#timetotalk

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Today, February 4th, is #timetotalk - a national day focusing on mental health by Time To Change.

I want to do a story that most people can relate to - so whilst this might not be the most important issue in the campaign or go in depth about how serious mental health problems can be, maybe it could gain a tiny amount of recognition for how it is to cope with them.

How many of us judge people by what they look like? Whilst I know a lot of people would like to think they don’t, we go by everyday of our lives passing judgement by appearance. This could be anything from labelling someone as a ‘chav’ because of the way they dress to something more complimentary such as ‘you’re looking well today’. But really, does an exterior appearance really resemble what’s happening on the inside and are we right to jump to conclusions over what a person is feeling from this appearance?

I’ve had two comments made to me in the past year which really stuck with me. ‘You smile too much to be depressed’ and ‘you’re too beautiful to be in a wheelchair’. Both of these comments link in with my point on physical appearance and both anger me at just how stereotypical they are. To make matters worse, the first comment was made by a medical professional when I was in a psychiatric unit - so these comments aren’t just coming from the average person on the street. 

So what does depression look like? Is it a sad guy, dressed all in black, with a tear stained face and a blank expression. Does that mean that people anxiety always are puffing in their paper bags and shaking, or, eating disorder sufferers are skin and bones. No. Fair enough, a small minority might fit this description, but most of us don’t. The fact that 1 in 4 people suffer with mental health problems means that of course people are going to present differently, many of which you would have no idea are affected.

Okay, if I was to ‘look ill’ externally from my mental health, here is what would happen. I’d have a tube from my nose from the days I couldn’t even drink because I was so anxious. I’d have black bags under my eyes from the many rows of sleepless nights where I have constant panic attacks. My hair would be gone from the stress. My head would be physically battered, bruised and scarred. And that’s just my face. I think you get the picture. 

Some days I wish I looked like that. The days I really struggle, I think it’d be easier than having to sit and explain to people what’s going on. I probably wouldn’t feel like I had to convince medical professionals I’m ill, people might be kinder, people may understand. Why don’t I look like that? As well as the amazing power of make-up (thank you MAC gods!) it’s not as simple as being able to express externally what you feel internally. And, I guess it’s probably for the better. You could say the same thing about all invisible illnesses really, which is why awareness needs to be spread.

I smile a lot. Sometimes to stop people asking questions, sometimes to try cheer other people up and sometimes, because I want to. The reason why I don’t look depressed today is because I’m fighting. I’ll wear make-up. I’ll push myself to socialise. I’ll get all dressed up for a hospital appointment because that might make me feel a bit better about myself today. And yes, some days I will look on the verge of a meltdown because I am, but very rarely do people see this. 

All I ask is that people do less judging, and more talking. And in return, on behalf of the people battling with mental health problems, we’ll try be more honest. I won’t always say I’m ‘just tired’ or ‘okay’. 

Everyone has a brave face. Some people put it on when times are tough. Some people have to put it on every day.


Kate x