Saturday, 6 December 2014

Make a difference at christmas...

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I've been thinking a lot the past few days. Probably because I've been stuck in bed again. But it made me think. A lot. Not all good, but some very important things... At least to me.

I don't like banging on about my health, mainly because it's boring and it's just a thing you get on with. But I was so poorly this week I felt like I was back to square 1. I was stuck in bed, struggling to talk, unable to sit up, getting help with absolutely everything and paralysis started in my legs again. Not what you need when you're a dance teacher. Anyways, I'm doing so much better now, currently sat up on my recliner and dressed, so improvement is steady and good. Phew. But when I was lying in bed, I was wandering how in the world I managed to cope when I had severe ME, and how those who are still suffering are managing.

2 of my best friends have very severe ME. Jessica, who I met when she was having her first trip outside in her hospital bed in years, runs a charity from her bed. A charity from her bed. The girl who took 8 years to be able to sit up spends her precious energy on making severely ill people smile. Inspirational or what. Next, is my super friend Merryn, who I literally adore. She came up to see me a few years a go, and I managed to go see her too, but unfortunately she's now in 'life threatening' condition in hospital and has been for 10 weeks. She's literally the most lovely person you'll ever meet and we laugh so much, and every single day I think of her & how she can cope with such bad symptoms. I don't know what you do when you're that poorly, you just battle through it I suppose. Anyways, going a bit off topic, I had about 4 days experience of a fraction of what they suffer, and it was awful. I'm so thankful for my health and where I am now, I know I've taken some steps backwards but gosh look how far I've come.

I spent 2 years having my christmas presents opened for me as I didn't have the strength, and one christmas I was so poorly I couldn't enjoy it. But I wanted to share some ways you can make a difference at christmas to people who may be a bit less fortunate - either money wise of health wise.


  1. www.postpals.co.uk  Postpals is a charity set up by another bed bound ME sufferer Vicki. You can send cards and presents to children who are seriously ill and help brighten their day. I once sent all 50 letters one time, so I'm sure 1 would be possible for most. So I know a lot of people are writing christmas cards, just taking a minute to write an extra card for someone who'd appreciate it so much
  2. Donate supplies to local food banks. Our current campaign for Team V is on this topic, and how easy it is to put an extra few things in your shopping to give to people who may need it,
  3. Donate unwanted christmas presents. This is quite an easy one, you always get a gift which you're not so sure of, so donate them to charity or set up a stall and sell them with proceeds going to a cause. I did this last year for my own charity which features in the next one..
  4. Set up your own charity. If you've got a good enough idea, go do it. I got funding through 'Think Big 02' to set up my own charity for this Christmas. It's going really well and I'm hoping to apply for a larger grant next year. Fingers crossed.
  5. Support your local community. It's an easy one, go along to events and show some interest. We did a onsie walk at dancing so there's some really fun things to get involved in!

I think I could go on forever tonight, but that'll do for now, I must rest. My point just wanted to be how easy it is to make a difference at Chritmas and remember those who aren't so fortunate.

Kate x

Sunday, 26 October 2014

Reflect and Rest

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My mind is the type which never stays quiet. I'm the type of person who worries endlessly about tiny things which don't really matter & I will think things through over + over again. Why? It's a personality type I guess. I know a lot of people who are similar. Having this mind constantly on the go I don't seem to get time to reflect on things. I'm not very good at resting either for the same reasons. But tonight, as I sit here typing away when I've been sleeping all day, is time for reflection.

Lately I have been asked 'so what are you doing now?' or 'what have you been up to?'. I've had old friends from school who I've bumped into, who are nearly finished uni or have jobs now. However, some are still not on the path they wish to be on. Some are looking for jobs. Some are just 'plodding along'. And some, like me, have had some unexpected twists in their paths. 

It's not until I start with my list that I realise just how much I've achieved. People seem amazed by my journey, where I was viewing it as I hadn't reached my destination yet. I don't even know myself where my destination is in all honesty, but I guess that's life, finding yourself.

So here's my list, top 5 things I've achieved whilst being ill:
  1. Getting my associate in ballet teaching. This allowed me to fulfil my dream of becoming a dance teacher. One which I thought was unlikely to come true even when I was well.
  2. Staying in education. Yep, I'm still doing my a levels, but hanging on in there for 5 years is pretty decent. Discovered many new talents and opportunities on the way too.
  3. Volunteering. I have over 1,700h voluntary work now and I mentor new leaders. I absolutely love what I do & I made some amazing friends from it too.
  4. Discovering myself. Although this one is not yet complete, I have discovered new talents and love for things which I never thought I would. I didn't have a clue I could sing, or draw, or do textiles.
  5. Proving people wrong. I can't count the number of times I've been told 'you can't do this' 'you won't be able to do that' 'you're too ill for x/y/z' and almost every time I've proved them wrong. I've become pretty good at adapting to situations and challenges now.
I think it's important for everyone to recognise their achievements once in awhile. Also, seeing things in a different manner helps too, after all, it's not about the destination - it's the journey.

'Comparison is the thief of joy'. I believe this is one of the most negative and demoting things which can happen. You have your own journey. Chances are, your destination isn't the same either. So why say 'oh she has done this' or 'I have done that'. Trying to be 'better' than someone doesn't necessarily matter. Jealousy is a horrible thing, and I make friends with those who are thankful and proud of everything you do. As long as you're happy with where you are and how you're doing, there's no need to compare. Just reflect on your journey and focus on what you want to achieve.

Never dim anyone else's light so you can shine. Just shine.

Enough for today, please, if you read this, take 5 minutes away from your smartphone/laptop and think of all the things you have achieved and are thankful for. It will do your mind the world of good.

Kate x

Thursday, 23 October 2014

My Happy List

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I firstly apologise for my very neglected blog. I guess I used to blog quite a bit when I was really poorly as it's an easy thing to do from my bed, but since making improvements other things have taken over. Not a bad thing, just a change, and here I am, writing my thoughts to the world again.

I thought I'd start blogging again this evening, I'm not sure why, although I know my friend Alex has had quite an influence on me. I have so much I want to talk about, I miss sharing my thoughts and ideas, and I guess blogging helps me sort them out in my head too, kind of therapeutic ey.

I've been feeling a bit sorry for myself today, too much stress & not a good enough immune system. But after having my casual breakdown I managed to think of all the things which make me happy. Hence, my happy list. People forget with their busy lives to appreciate the things which mean the most to them, and I think it's important to try take a minute to show your appreciation for people, places, feelings.. whatever you have to be thankful for.

My happy list
I have narrowed this down to 10..

  1. Family. Can't even tell you how much they mean, that's all that needs to be said.
  2. Health. Although it seems a bit hard to be thankful for at this very moment in time, I looked at my posts from beginning my blog and I've seen how far I've come. One lucky thing. 
  3. Friends. Today I felt alone and that everything was happening around me. I started getting messages to say get better soon, and then I received a box of donuts (and who cannot be cheered up by donuts?!) from Alex and Vic, what beautiful people.
  4. Learning new things. I absolutely love learning. I'm one of these people who wants to learn, to gain new skills, and to be the best I possibly can. Today I started to learn 'Let Her Go' on guitar and it was amazing. So thankful for all the people who widen my knowledge.
  5. Teaching. Linking to the one above I love to help people gain skills that they never knew they had. Dance teaching has always been my dream job and how lucky I am to be able to do some now. Just seeing improvements in technique and confidence gives me my own boost.
  6. Singing. I love to sing. Getting my uke out and having a bit of a sing song session tends to happen once a week. Occasionally the piano gets played too. Music is magical. 
  7. Driving. I think it's mainly to do with where I live. I totally love to go out on a drive with my music on and windows down. I guess it's the freedom which comes with it.
  8. The unexpected. I guess this can be seen as a bad thing, but sometimes I love unexpected results. Today my best friend called out of the blue and it was lovely to talk to her. I love unexpected post, and bumping into people. 
  9. My camera. Whether it's my DSLR or my iPhone, I love taking pictures. I like documenting things which have happened, whether it's just on Facebook or in a scrapbook. One day I'm going to get a polaroid camera ..
  10. Plans. Yes, I do get stressed by plans most of the time, but I like making plans to see people or do things. I always think it's important to have something to look forward to every month, which I tend to do. 
Bit of a cheesy blog this one, I'm sure I'll share some of my deeper thoughts eventually. As for now, it's time to sleep.. I'll try make this a weekly thing!
Kate x

Monday, 12 May 2014

Sunday, 11 May 2014

Medication, treatments & adaptations

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I'll just let the pictures do the talking. These are all what I use either daily or weekly.

Weekly tablets
Monitors
Rising bed
Adapted bathroom
Legs need to be up
Downstairs bed & recliner to come
Yantra mat
Cupping 
Weekly accupuncture

Wheelchair
Walking stick
Crutches


Numerous hospital visits
Rails and high car
Remote controlled light

Here are just a few photos making the invisible visible. These all help me on a daily basis, and there is so much more, but I don't want to bombard you with photos! 

Kate


Sunday, 4 May 2014

Symptoms

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So, today il tell you about my story + symptoms for these conditions.

I used to be a very sporty child, dancing up to 7 hours a day + always on the go. In November 2008, age 14, I suddenly fell ill with tiredness + nausea, like nothing anyone knew. A year later I got my diagnosis of ME, after doctors putting it down to depression + refusing to look at me because I was 'too thin', and in that time my weight had plummeted. I remember crawling up the stairs because I was so exhausted, and I couldn't get out of bed. I was having 4 hour long panic attacks daily + my anxiety was terrible. I started having to use a wheelchair as I couldn't walk and then I had a bad relapse. This made me suffer with paralysis in my arms which lasted for a week. I now couldn't feed myself, brush my teeth, dress/bath myself or even sit up in bed. It was a scary time for everyone. I remember my physio holding me as I shook standing up for a whole 10 seconds for the first time in months, then taking my first steps with my crutches. From around 2013 I started to slowly improve and here I am today. Still need the wheelchair most times outdoors, can walk a short distance, I have more independence + still fighting every day. I'm SO much better than I was and I'm so grateful for it! Still quite a way to go in my story though..

I have a pretty impressive medical list, but ME and EDS are my main troubles ;) I also suffer from vasovagal syncope, heart murmur, gastritis, duodenitis, migraine, asthma, stomach bleeding (which thankfully has stopped), hiatis hernia and lots of things secondary to ME and my medication

Symptoms of ME which I suffer / have suffered from:
Exhaustion (I'm not talking 'I'm tired let's go to bed' exhaustion, I'm talking about crippling 'I can't move' exhaustion. They say having ME is like having to drag an adult around on your back everywhere..), pain (joints, nerves, muscle, you name it..), light sensitivity, sound sensitivity, paralysis, numbness, brainfog, loss of sight, spasms, dizziness, 'payback', memory + concentration problems, enlarged glands, headaches, recurrent infections, palpitations, sleep problems, anxiety, depression, muscle weakness, digestive problems, inability to control body temperature, bad balance, nausea..
Probably a lot more which I just can't remember right now. I still suffer from all these symptoms bar loosing my eyesight regularly. 

Symptoms of EDS I suffer from
Many of the symptoms overlap ME symptoms, but the extra ones I suffer from are being very hypermobile, joint instability (many sublaxes and dislocations daily), easy bruising and gastrointestinal dysfunction. 

I guess these are easier for me to show you than ME symptoms! Here's a photo of my current bruises, with no filter, on a small portion of my long legs. My legs bruise ridiculously easy, so bad It happens when I kneel down.


Im hypermobile just about everywhere. The worst of which is my hands but that was hard to take a photo with by myself. So instead you can enjoy my elbows which bend a bit too far.


So there's my symptoms. Everyone with ME is different so what I suffer from someone else might not, but it's quite an impressive amount to be dealing with on a daily basis. My next post will be on treatment which I'm sure you'll enjoy as it involved photos of me getting needles stuck in me ;)

Kate x

Thursday, 1 May 2014

Making the invisible, visible

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Hey :)

May is invisible illness Awarness month, and I am doing this blog to raise awareness for 2 conditions which I suffer from - ME and EDS.

What is ME? ME stands for myalgic encephamelitis and is a neurological disease. There's no cure + has many many symptoms from headaches to paralysis. Il explain more on the symptoms later

What is EDS? EDS is Elhers-Danlos syndrome. It's a connective tissue disorder and I have Type 3, which is the hypermobile category.

What am I doing for awareness week this year? Most of you know I usually do crazy things to raise lots of money, especially for ME Awareness week. Last year I  zip wired off the Tyne bridge and was interviewed by ITV, which was plain amazing! This year, my hope was to top it by skydiving, but my doctor informed me I'd 'literally break' and wouldn't sign the medical form.. SO, the next best thing is an indoor skydive my friend Brooke and I are doing to raise money for an ME charity! We are doing it in June (for health and exam reasons) but would love as much support as possible! 

What are you blogging about? I hope to do one blog a week for this month, so that'll be 4 blogs in total. 
Week 1 - symptoms + my story
Week 2 - medication, adaptations & alternative treatment
Week 3 - hopefully my first ever video blog
Week 4 - what I can do and what I've gained from having this illness

I hope this informs people about the illnesses and by no means do I ever do this for sympathy. I want to change people's views, open their eyes, and realise how lucky you really are. Never take anything for granted. Follow my blogs this month and show your support for all the sufferers out there.

Kate x

Sunday, 23 February 2014

Feel Good February

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Hello :)

I'm doing this post in my phone as I'm not so well at the moment, so I apologise if this looks different to normal! It's nearing the end of February, and my friend John started a project called 'Feelgood February' as part of a vinspired project last year. It was so good he wanted to continue it, and I decided I wanted to help out in my own little way to spread a bit of happiness :)

February 1st-7th
I wrote / texted nice messages to 7 friends who mean the world to me and needed a little pick-me up

February 8th- 14th
Valentines! I made 7 friends homemade friendship bracelets and sent them a little parcel for valentines day

February 15th-21st
I wrote 7 cards to charities which have helped me so much in the past few years

February 22nd-28th
I spoke to 7 people in the community I never met before. Highlights include making friends in Hexham with a man who cooked me some fresh chicken, and meeting Mike (pictured) and his owner which was amazing!

February 29th-31st
These last few days I planned my new charity project, applied for funding & gained supporters. This will hopefully make a huge difference which will go beyond these 2 extra days work :) All will be revealed soon! I also did an extra hour at Josies Dragonfly sorting their attic which I actually really enjoyed! Here's a quote in my T-shirt which I think goes well with this :)

I want to show you how easy it is to make someone smile and make a difference. You can do something huge or something little like send a nice text or give someone a hug. So, hope you enjoy my efforts & I inspire you to do something similar :)

Kate xx