Wednesday, 27 December 2017

Random Acts of Kindness Advent - With Bearhugs


Merry Christmas!

Well, it's been a hectic month leading up to Christmas for me. Project Parent is at it's busiest time and I was volunteering with a few extra things, so it was really quite difficult to get some time to myself. As per usual, it's made me pretty unwell, but, I was able to go to my sisters for an hour on Christmas day which was amazing. Now it's time to rest and one of the things I wanted to get back into doing was some blogging. I wanted to share this lovely advent calendar which Bear Hugs set up again this year. It's about spreading a bit of kindness and I've loved taking part. I wasn't able to do them all in order due to being either ill or frantic with Project Parent, but I finally managed to cross them all out before Christmas.

1 - A simple one, I shared this on my social media sites.
2 - This day I was in bed, but I knew I would be because I had a stall at my first craft fair in years the night before. There, I took the opportunity to smile at everyone. It didn't take much effort, as I was genuinely so happy to be out in the community and with my crafts again. But it was a lovely hour out!
- I spread the word about 3 local charities (or charities to-be) which I either help with or use - Happy Faces, Chilli Studios + Calvert Trust Kielder. I did the same with 3 national ones - Post PalsSmile For ME + Spoonie Survival Kits.
- I took my hospital time to compliment a nurse
5 - I spent some extra time with my nephew Jack. We watched some tv in bed and snuggled in.
6 - This was a tricky one for me. I need to do it more often. I had a nice bath and put some body lotion on. But, then I ordered Jayne-Hardy's self care project (you can get it here) so I could plan in more time to be kind to myself
7 - I ordered a nice box of treats for a friend, Laura, who had a terrible day. When it snowed heavily she ended up staying at ours for 5 hours because the car broke down and it was all a nightmare. So I sent her a Bearhugs box to her address with some nice goodies in to cheer her up as a surprise the net day.
8 - I thanked my mum who'd gone out the way to get lots of the Project Parent shopping for me
9 - I told my carer she was great because I had a lovely morning out
10 - I sent a nice text to a friend
11 - I bought from a number of small, independent businesses over the Christmas period. 3 examples are Handmade by Holly who made a beautiful bear for my sister, Crafters Emporium who made some lovely hair ties and Mrs BArts who designed a giraffe coaster for my friend.
12 - I love hugs, but my boyfriend got extra hugs for dealing with me whilst I've been so busy and poorly.
13 - We sent 50 of our Project Parent boxes to Post Pals this year which was fantastic. I'll continue writing to pals when I have the energy.
14 - I helped mum tidy up some of the front room
15 - Instead of making a drink, I took a lady out for a drink who wouldn't usually go out and bought her a cuppa.
16 - I dropped little compliments throughout the day
17 - I let my Project Parent volunteers know I appreciate all they do and how fantastic they are
18 - I sponsored a number of causes over Christmas including St Oswalds, North East Pageant Network and Compingoo Christmas Appeal.
19 - I went for a cup of coffee in the lovely Elisa Rose cafe and stuck one of my friends 'spread the smile' posters on the toilet door. Look up on instagram to see their lovely work
20 - This one was a bit mixed up, as it says 'give feedback to a boss about good customer service'. I very rarely do this, but I did write in to tell a man who always helps me in paperchase out as well as telling Ringtons they are generally the most amazing people ever. But, then i got a package from a boss. I had been chosen from One Stop (nominated by my boyfriend, bless!) to receive a hamper at Christmas for my commitment to the community. I was so shocked, so it felt truly amazing!
21 - When writing my Christmas cards I was able to write little notes to people I haven't managed to speak to in a long time. It was really nice.
22 - I gave my mum my extra self-care book (as I ordered 1 then got 1 for Christmas!) as she needs some extra self-love too
23 - I sent a text to a couple of friend to let them now I was thinking of them
24 - I would like to send more RAOK post, keep in contact with people more, make sure I spend some time taking care of myself, put aside time/energy each week for my family and continue volunteering.

So, I really enjoyed taking part and I think it was a lovely concept. I hope everyone had a good Christmas and looks forward to what the New Year brings.

Kate x

Friday, 17 November 2017

The big one-zero


Children in Need night, for everyone, is emotional. For myself, it's always a little bit extra hard as 'ME anniversaries' do stick with you. This year marks a decade since a became ill; a whole ten years. And, being 23, it's creeping up to the stage where I will have been ill more of my life than I have been well.

Chronic illness life hasn't proved itself to be much less challenging despite the added years, mainly due to my number of complex complications. I don't document as much of it anymore, but we still have a lot of hurdles. For example, today I had to sleep all morning (prepped a lot of this blog in advance - organisation is one of my stronger points!) because I spent all afternoon in hospital sedated for doctors to take biopsies of my throat to try see why my swallowing muscles are getting so weak, when they are already pretty sure the results are going to come back as 'it's just Kate's EDS', which means no treatment plan. As per usual, I got in there and I was a 'very complex case' meaning they needed a consultant opinion and my blood pressure dropped to a lot lower than they wanted. A 5/10 minute procedure lasted 2.5 hours in total. Buy hey, all done for now. We, and I say we because it really is my whole family who battle this with me, just try to make the best of each situation and when I can do things, I go for it.

I've been through a whole range of severity with my conditions in the past years, from paralysis to hospitalisation for a month. But, the 'well-er' times, and even now when I'm not great but really am learning how to manage with my own body, I have a bloody great time. I have had experiences, opportunities and learnt things which I never even dreamed I could do. And I really want to celebrate today all the things in these 10 years which I've managed to achieve.

I'm not one to really talk much about my achievements. Yes, I'll promote some of the volunteering and causes I work with, but this is a post I can turn to when I'm struggling and think 'look what I did'. It's not meant to big headed, egocentric, or anything. This one is just for me.

Through a lot of my years with my conditions, I've just had to try 'get through' things. I still have to take each day as it comes, I still have extremely difficult days but now I feel like I have slightly more of a path which I want to pursue. I've found a love for volunteering, a love for art and a continued love for dance. I appreciate little things more, which everyone with a chronic illness will say. It was a good few months ago since I was last able to go for a 'walk' (well, wheel) in my chair in the fresh air and it's beautiful. Spending time with my family, my boyfriend and friends is precious. Life, and time, is precious to me. So, in these 10 years, here are the things I've had the amazing opportunity to do, learn and love.

I now see volunteering as a huge part of who I am and when I got asked the other day what I wanted to do for the rest of my life, the answer was simply 'I want to help people'. My volunteer journey started at a young age where I helped assist dance classes weekly, but really took off when I got poorly. In 2013 I was chosen to be part of the vInspired programme which I can hand on heart say changed my life. I gained confidence, I made a difference, I received a £1,000 scholarship at the end of it and I met my best friend. I then was chosen as one of only 12 in the UK to become a mentor for the programme, but didn't manage to attend many of the sessions because I was so unwell. They all became my family though and that was honestly a life changing experience. My next 'big' volunteering venture came from running Project Parent, which I speak about below, and because of the success I became a mentor for O2ThinkBig. I've also now become a trustee for Prudhoe Community Partnership. In between all these big voluntary opportunities, I volunteer for a number of causes regularly and just generally love helping out. I've completed 2,250 hours of voluntary work now which I've built up throughout the years which I'm pretty proud of.

Running my own projects
The first project I set up was in 2011 and was my own small jewellery and crafts business. I used to go around the local fairs and sell online, but when this got too tiring I cut down on this. To this day, I still craft but on a much smaller scale.
Inspired by this, in 2013 I set up a project called Crafts for ME. I was given a £500 grant and I gave out gift boxes of crafts to people who were poorly with the condition. The idea behind it was that it would give them something to occupy them but also help keep muscle strength through their arms for severe patients. Once the funding ran out, the project closed and I was planning my next idea.
In 2014, Project Parent was founded. Starting with a £300 grant from O2ThinkBig, I gave out 30 gift boxes at Christmas in Newcastle. The next year, I was awarded the top grant of £2,500 so we expanded to 5 hospitals across the UK plus 2 charities which help families who are in & out of hospital. Now, Project Parent is self-funded by the very hard work of myself, my team and our donors. We give around 400 boxes to 6 hospitals a year plus supporting the charity PostPals and involving local community youth groups.
In 2015, my mum and I made up Christmas gift bags for the women at our local inpatient mental health ward. We continued this last year with the help of Danielle, and this year, it's getting bigger. Through selling crafts (which are yet to be revealed) we are hoping to raise enough money to buy everyone in our local children's unit (yes, all 40...) a small filled Christmas gift bag. Only recently I became aware of how isolated our local mental health impatient unit is, despite being so close, so if it goes to plan - we'll see! Continuing with the mental health theme, with the help of 4 incredible girls we started up a community DBT group as the limitations of the mental health services are getting tighter. I ran 4 workshops myself, which was both challenging and so rewarding for me, and the feedback was incredible.

Crazy Activities (usually in the name of charity!)
Linking to my volunteering, I started fundraising. I started off with the Sport Relief Mile then advanced to the Great North Run, which I have now completed 3 times in my wheelchair (and walked/jogged/stumbled along the bit at the end!). I zip-wired across the Tyne bridge for ME North East and then did an amazing indoor skydive for them at a later date as no doctor would sign my off to jump out of an actual plane. I've zip-wired in Scotland with my friends, swam with dolphins, been on a king-swing at Calvert Trust... I'm still a bit of a thrill seeker!

The fact I managed to do my GCSE's was a miracle, as I had about 4 weeks home tutoring and only managed 15mins at a time. I still got amazing results, as I did with my a-levels. My A-levels actually took me 5 years and I did one year of this via online learning (which was documented by The Guardian as it was a new thing at the time!) and most of the other time through self study. I love learning though, so it was amazing. I got offers for the uni's I wanted; Durham, Newcastle + Northumbria but never managed to go because of my health.
Dancing has always been a huge part of my life, which is why giving it up was heartbreaking. But, with an awful lot of hard work, and a lot of adaptations, I managed to get my dance teaching qualification (with 97%!) and get my first job which gave my some incredible opportunities (not everyday you're with Chloe from Dance Moms or Twist + Pulse).
Project Parent won 'Most Inspirational Project of the Year 2016' - O2ThinkBig which was absolutely incredible. My parents represented me in London and it made all the hard work even more appreciated. The next year, one of my good friends nominated me for NTW NHS Positive Impact Awards. That was also so special too and just an amazing night.

Other highlights
There's probably a tonne I'm going to miss out, but from modelling opportunities, holidays, to my first guest speaker appearance I seem to always have something to be excited for. I've met some incredible people, been to some amazing places and done some amazing things.

A thank you
A thank you to those who have been part of this time, whether it was the whole 10 years or just bits of it. Thank you to those who make me smile on my bad days, take me out so I don't miss out on the worlds adventures and who keep believing in me.

A final note
These beads represent every medical appointment, procedure, admission..etc I've had since I became ill. I haven't got my beads for this year or through the last half of 2016 (so I have quite a lot to add!) but I guess this gives you a bit more of an idea of chronic life. Each bead represents a battle I've faced, but one I've got through.
It wasn't the life I had planned, but I have been utterly blessed with opportunities and experiences.

Kate x

'Fall down seven times, get up eight for ten years'

Sunday, 29 October 2017

Unrest - My thoughts


Unrest - My thoughts

'Unrest' is a documentary on ME. A very brave woman, Jennifer Brae, documents her journey through the illness and how she comes into contact with many who are in the same situation; suffering with the same awful condition just like her. Now, I'm not going to review the film as quite frankly, there are lots of people who have but I'm going to say this - it's incredibly moving and real.

I will mention certain parts that were particularly influential for those who haven't (or perhaps have!) seen it though who might think 'it's just a documentary on ME'. One, was how Jen was very emotional and open about thoughts of killing herself because her quality of life was that bad, then later on we were shown the horrific suicide rates of those with ME. The next, was how a young girl, Karina, was forcibly removed from her home and placed in a psychiatric unit because in Denmark they believed that ME was a mental condition. This isn't just happening abroad, this is still happening in the UK with people being sectioned. Finally, we hear about the complete lack of funding and continued understanding of an illness which is destroying an unbelievable number of lives.

Moving on, what I wanted to talk about was the Q&A session afterwards as well as some extra thoughts I had on the film. One topic which was brought up was the 'label' of Chronic Fatigue Syndrome vs ME. Chronic Fatigue Syndrome is used my medics, whilst as sufferers tend to use ME. There is an awful lot of debate around the subject, mainly because 'chronic fatigue' doesn't exactly do it much justice as it sounds like we are just a bit tired plus it has a lot of stigma attached, but personally, I think we just need to start working on the cure. Yes, the label might affect some people's views, which in turn may cause issues for funding and other problems... But, the real issue we face is fighting to get the support we need at the moment, the funding to do more research and more understanding around the illness. We should all work together, no matter what the label is at the moment, and have that as a smaller objective, and try really focus on what's going to make the greatest difference.

Next, were two of my points I was too scared to bring up myself. Firstly, in Unrest we saw Jen's husband, Omar, who was an amazing support to her. But what we could make another film about is the support needed for ME patients. Carers, friends and family are doing an amazing job of looking after those with ME with very little support themselves and very little recognition. They aren't applicable for respite, they aren't getting support like other charities can provide because of funding and they are often not seen because the ME patients are so severely ill/have such high care needs. We know the huge amount of ME sufferers now, but for each one, we are talking around 4 people who need to support this individual. I'm not anywhere near as severe as the people on the film, yet I have 2 daytime agency carers plus my family and boyfriend who have to all take it in turns. ME is not just affecting us, it puts a huge strain on those around us too. And they're all doing a bloody good job.

My last point was one mum + I were talking about on the way home. So we saw the film at a small cinema screen, and because we were all so flipping' broken they literally had to make a wheelchair park for everyone to leave their wheelchairs at the front. I took a picture and there were 8 there. And I was shocked. All the adults there who needed wheelchairs, had been given (excuse my language) crap wheelchairs. No support, too big, falling apart... Every one of them has severe enough ME to not manage to be able to walk more than a few metres and we all know that it is a long term condition. Now, I love the NHS, don't get me wrong, I seriously don't know what I'd do without it, but why aren't we giving people what they clearly need and deserve?! Give them a decent, fitted wheelchair then not only can then live their life a bit more and be comfortable, but they can get to medical appointments, to physio, to treatment. Why is it that as soon as you become an adult you don't become applicable for the things you clearly need. I sat, feeling so guilty as I have an amazing wheelchair (which I wouldn't have made it out without, I even had to be reclined after the cinema because my blood pressure dropped) and here, around me are another 7 who need this. I wish something was out there to support them too. But this is the thing, and it's not just with wheelchairs. As soon as you write 'ME' down it makes it 10 times harder to get any equipment, forms are harder to fill in for help and there are such little services available. It's sad, and I hope it changes soon.

With the points made throughout the film and those which come afterwards, its obvious that more research, funding and understanding is needed. Hopefully Unrest will start up more conversations, educate more people and might be shown to that one junior doctor who eventually finds a cure.

Kate x

Saturday, 30 September 2017



September has also been blessed with a lot of opportunities and has been a rather busy month. Unfortunately, as the month went on I started finding it harder and harder to do my usual things like get out and I was hit by a really nasty relapse. So, the last week of September has been mainly stuck in bed and celebrating even just making it downstairs for an hour to watch a dvd, but I know to roll back and let my body rest to try slowly get back on my feet a bit more. Anyways, here's some of the things I've been up to in September in a bit more detail.

September doodle by myself 

Stocksfield Festival - We took a tombola and a cookie stall down to my local fete and raised a staggering £144. I had an incredible team (thanks Danielle, Elisa and my parents!) who helped a lot during the day as I wasn't well, and Carly had been sorting out all the prizes with me beforehand to help with my limited energy. The time I managed to spend down there was lovely and I especially love it being in my village as I get to see people I haven't been able to for quite awhile!

Lifespan Annual Celebration - This years Lifespan ball was at Durham Hall and it was a beautiful setting. Mum and I volunteered for an hour with their raffle tree then stayed to enjoy a lovely dinner with the guests. I was also in charge of social media for the night which was a new task for me which was quite fun and we had a fabulous time. We didn't stay for the auction/entertainment as I wasn't feeling well after dinner, but from the pictures the whole night looked like it was a great success.

Calvert Trust Kielder Filming - I was so excited and nervous for this filming opportunity but I have to admit I think my brain fog got the better of me that day. I met with the CT team at the Hilton and showed them my speech. I was so proud of what I'd wrote but being so tired that day, but brain remembered very little of it (or words!). Anyways, Charlotte was especially amazing (and very patient!) and helped prompt/interview me so once I relaxed we got rolling again. Now it's just the final countdown for the ball - so exciting!

Project Parent - Project Parent is generally starting to get very busy. I'm so thankful I have such a good, close knit team now otherwise It'd impossible. We've organised lots of events from book swaps, to halloween competitions. We've been sorting out merchandise which I'm just confirming with SALTO who have been stars! I've just got all the budgets in for everyones boxes for this year and we have started purchasing things for this years boxes already. On top of grant applications, thank you letters, website updates and keeping up to date with everything, its very busy.

Others - I had a sort out of my craft things and managed to donate things to Ferndene and Prudhoe Poppets. I absolutely loved getting shown around Prudhoe Poppets especially, they've done one incredible job and I was astonished at the number of children/parents there. We're now looking at joining up at Christmas for some Project Parent boxes! I go to Chilli studios with one of my carers fortnightly for an hour which I'm really liking, I wasn't ready a year ago but now I'm loving doing some crafts with a group. I've started making some crafts to sell for charity and for Christmas (got to start early when you have ME!)

Love as always, Kate x

Thursday, 31 August 2017




So, I realised that I've once again neglected my blog. I quite frankly just don't have the energy to keep up with it at the moment, but really want to keep everyone up to date with the exciting things I've been helping out with and I think it's a great way to document things. I went through a phase where I was able to blog every week but I've decided that I'll try to blog once a month now, if I can, unless there's something 'big' I want to blog about.

Every month since the start of the year, I have done these doodle drawings. I use them to remember all the achievements and good times I've had, as sometimes it's really difficult when you're stuck in hospital for the majority of your time. I shared my first few drawings online and I got some really lovely comments. Now, I even have people messaging me asking when this months doodle is going to be posted, which is so sweet. They're not perfect, I do all of them freehand and first try but it's a nice thing to do. So, I'm using the doodle drawing to expand and share, particularly volunteering wise, what I've been up to in the month.

Clarty Bairns - I started the month by helping out for two short sessions at Clarty Bairns outdoor obstacle course. I help Challenge Northumberland, the event organisers,  every year and absolutely love working with the family. I sit and sign people in/out but enjoy seeing people having fun on the course. In fact, I saw my sister complete it and raise over £50 for Project Parent in the process.

Project Parent - Danielle and I help our first proper 'meeting' and it involved a lot of pizza + sweets. We ended up covering the whole floor with paperwork, filling an A2 sheet with plans/ideas and working too many hours (for me anyways!). It's starting to get busy already, we've changed our boxes so my leaders are now in charge of what's going into their area, which at the moment still has ended up being a lot of work for me. I have lots of ideas, lists and emails - just not quite the energy to stretch and it's only going to get more hectic! I took my box along to 'Unicorn and Dinosaur Tea Party' too which was too cute, didn't do much promotion mind but welcoming kids was a lovely morning. 

Community DBT group - We all know the NHS is full of cut backs, but when I found out that one of the therapy sessions being used at the mental health centre had been cut from 1 year to just 8 weeks it really put things into perspective. It meant that this therapy felt like it was rushed and came to an abrupt halt, so, after some research I realised that we could rent a room and continue the work with a similar structure in the community. A group was set up and we all helped run a community based DBT group for people who needed extra support and I think it was remarkably successful 

Visit to Ferndene - Moving one from that, I visited Ferndene as the did a talk for PCP and really need some young adults to go in to help out with the children, especially with particular skills. I agreed that I'd go in and do some art sessions with them once I had some spare time/energy, but they're helping us with an art workshop with Frank (which will be continued in a minute) anyways. 

Workshop with Frank Styles - As a trustee of PCP we wanted to make a mural for the Spetchells Centre involving the youths in Prudhoe. I did the first day of the workshop yesterday where we worked on people and silhouettes and I've attended (some) of the final workshop today. It's been an amazing experience with a very talented artist so I can't wait to see the final piece.

Happy Faces - This is a new group for young people with additional needs which has opened at the East Centre in Prudhoe. It's something I'm passionate about, being inclusive, so I went along to see how it was working. I was pleased to see it was very successful and I'm very proud of everyone involved, and of course, looking forward to seeing it grow!

So, I've had quite a busy month, especially when I put it down on paper. I've managed to do about one lot of volunteering/community based things a week which has been so lovely to get back to, especially after my pneumonia, but I know I've overdone it so I need to roll back a bit. I do the majority of it with my carer but now everyone will be back at work I'll have to get back into more of a routine, and, not to be pessimistic but I usually have a winter relapse so I need to be prepared. But I'm enjoying what I'm doing and little bits + often (well, every week or so) is the way to go!

Hope everyone is okay. 'Til next time, Kate x

Sunday, 25 June 2017

Fashion & Fizz Charity Night


When Laura Jane, fundraiser for Lifespan, asked if I would model some clothing for a charity fashion night I couldn't turn something like that down. It's been such a long time since I've done a catwalk (and I was very relieved it was about 5 metres long haha!) so I was super excited to help out.

Lifespan brings ease and support to people with any serious and life limiting illness, and, to the family and friends who care from them. They visit at home, in hospital and hospices. They provide continuity if care helping the patient and their family through the illness. They work alongside GP's, consultants, hospital teams, Macmillan and other nursing teams to address the physical and emotional needs of the patient. They provide things like complimentary therapies, nutritional advice, counselling, art workshops, befriending and sitting service and bereavement support. 

I've took part in a few fashion shows before and I know what a huge job they are. This one though, was spectacular. And for a first go at organising and running a fashion night, Laura did a bloody good job!

I arrived at Matfen Hall and it was the most ideal setting. It obviously helped that the sun was out, but it was perfect for a lovely night out. Once I'd found my way through the maze of corridors (honestly, you could get lost for hours in that place!) I arrived to get my hair and make-up done. I met some of the other models, firstly, the little 4 children who i'm pretty sure screamed at me to chase them then ran off! Then I met the 'mature' models who were from Laura's 'mature movers' class she runs. Finally, I met the other adult model Rebecca + later on the other 2 joined us. I got there looking rough as anything. I'd spent from 10am-3.30pm in hospital and then discharged myself because I wanted to go to the show - whoops. I'd had (and still have...) some sort of severe virus which causes a widespread weird rash which is just what you want when modelling, but instead of staying in hospital I was a bit rebellious. I'm so glad! Toni and Katie Jane first of all worked wanders on my hair. I had it curled then put up and it looked fabulous. I then had my make-up done by Susan which was absolutely stunning. Nichola was doing Rebecca's too - both girls are so talented and made us look catwalk ready!.

We had a very quick rehearsal and fitting, I've lost a lot of weight so getting anything which is a little 6 to fit my body at the moment was a bit of a nightmare but we made it! First up was the children. They were modelling The Little Wardrobe from Shotley Bridge who had the most adorable clothing. All the little models did so well - getting 4 changed quickly was crazy but they were oozing with confidence. Little Emily even taught me how to catwalk she was so good! Here's a picture of Dacey, Laura's daughter, who was absolutely fabulous. 

Then, we were on modelling Captain Tortue who I originally had never heard of. They are a french chic brand and I really loved their clothes. I was put in the comfiest pair of cropped denim jeans (which I ended up buying - £20 in the sale!) and an off the shoulder jumper with scarf. Then mixed it with a sparkly top. The other girls had a range of sports wear and dresses. All their clothes were comfy and unique, so it was a privilege to model for them.

Next, the mature models went on for M&Co. They had a lot of orange/red for their first change of clothes and I really liked the patterns. Then, the most summery numbers came out with floaty tops and white jeggings. They all seemed to have a lovely time to that was fabulous.

Finally, we had the ball gowns. We had a little issue as a lot of the dresses were too big for us, but we managed. I had a lovely blue wrap dress (which I 100% was wearing as a cape until Rebecca twisted it around me before I went on stage!). Rebecca had a lovely sparkly fitted dress with a more neutral one, whilst Rachel had 2 neutral ones with a lace one I particularly liked. I always like modelling the ball gowns, makes me feel like a proper princess so it was fabulous to end on that.

Alongside the fashion show, there was a shopping area with stalls from handmade crafts to clothes. It was a fantastic night giving people the opportunity to shop and chill out in a beautiful location and for a fantastic cause. I can't stress enough what a brilliant job Laura Jane did and I really hope she does another one again. The first one is always the hardest but I can see this being a really good event.

Anyways, from me, that's it. I walked far too much so I've been in bed ever since so I'm on strict rest for the next few days at least. But, I wanted to share what a fantastic time I had. I hope one day I'll be able to organise an event as big and as successful as that!

Kate x

Friday, 12 May 2017

ME Awareness Day 2017


ME Awareness Day has come around again and it feels a bit strange this time. I'm used to doing something 'big' to try raise awareness, like zip wiring off the Tyne Bridge, getting interviewed for ITV (which you can still see here) or even dressing up as a princess for a day.

I had plans, like I always do, but they started crumbling the closer and closer it got to the date, and more and more I got ill. This evening the Millennium Bridge is being lit up blue and local people with ME are all meeting up which I am absolutely gutted I'm missing - but it will no doubt be an amazing event. There's been lots going on, from coffee mornings to special kits being sold for fundraising. It's amazing seeing everyone pulling together on this one day, but the truth is that the majority of the ME community pull each other through every single day of the year, we are just trying our best to spread a little extra awareness today.

I've wrote quite a few blogs now for ME awareness, 'So you're ill every day?' was last year's and probably is a bit more informative. This year, I simply don't have the energy to do as much and it's a bit heartbreaking for me, as I see campaigning as a huge part of my life. But, I wrote a little something last night which I wanted to share, it's a little different but I guess that's ok.

Silent Fighters

You've had more tablets than types of food,
Exhausted from the roller coaster of anxiety and mood,
Curled up in bed, ready to drift away,
Positively trying to reflect on the day,
Yet remembering you've spent more time flat than upright,
That you've spent more time in darkness than the glorious sunlight,
And the achievement of the day was simply getting dressed,
That you'd rate your pain score an 8 at the best,
You can't remember the last time you were able to walk,
And today you were even struggling to communicate, to talk,
But you scroll one last time before bed, on your phone,
And find like 250,000 people, that you are not alone,
That each and every day you have to wake up and fight,
In the hope that someone will find cure or even a small incite,
So whilst I lay in bed, writing poems as it's getting lighter,
I want to dedicate this. Here's to us; the silent fighters.

Before I go, here's a few links to some ME related charities which can give you more info + support.

Kate x

Saturday, 22 April 2017

NTW NHS Awards Night


The Northumberland Tyne & Wear NHS Staff Awards Night happened last month, but I've been wanting to blog about the fabulous night I had ever since. I think it was a really important night about recognition, dedication and teamwork in the NHS.

Now, the first question you'll be asking was why I was at a staff awards night despite not working for the NHS. Well, I was lucky enough to be nominated for the 'Positive Impact' Award, which I'll go into more detail about later on!

So, the staff excellence awards were held at the Civic Centre in Newcastle. It was a beautiful, formal, event. There was live music, great food and a drinks reception. I was allowed to take 2 guests so I brought along my lovely mum and good friend Danielle. Both of them had helped me with a lot of my mental health volunteering, and mental health battles, so I was privileged to have 2 inspirational women to me by my side.

Danielle and mum helped especially last year making up the mental health packages for St Georges at Christmas. For the past 2 years now, we've put 20-30 decorated bags together with chocolate, decorations, socks + toiletries for the people at St Georges hospital at Christmas. This was like a little branch off from project parent as I know from personal experience how lonely it is to be in hospital, especially suffering with mental health issues, so wanted to give back and support them. Danielle and I have also done our fair share of mental health campaigning, especially through vInspired, so it was really nice to be able to bring her along.

There were 10 categories; Apprentice of the year, Behind the Scenes - Individual, Behind the Scenes - Team, Clinical Team of the Year, Clinician of the Year, Knowledge, Safety & Innovation, Healthcare Worker of the Year, Working Together, Leadership and Positive Impact. You can find the winners here - there's some incredible people and teams!

My category was last, the positive impact award. I had been nominated by one of my lovely friends Kelsey who works in the NHS. She wrote the following in the glossy handbook which I've kept as a memento of the incredible evening.

'Supporters want to thank Kate simply for being Kate. Any opportunities she has, Kate pushes herself to raise awareness of ME. She lives with this, EDS and Vasovagal Syncope which comes with a lot of depression and anxiety. Yet, even though she battles crippling pain and anxiety, Kate is fierce, a fighter, and for all the support she gets she sends back out into the world ten-fold. She regularly volunteers, raises money for charity and supports a large group of friends, goths those with the condition and without. Kate blogs at which helps raise awareness and understanding for everyones benefit. She has an earnest desire to give back to the world having received support herself, and is and inspiration to many people. She does an amazing job through great adversity which is a testament to her character'

The first time I saw this was at the awards and I was in tears, Kelsey has been a big support to me and this nomination came totally out of the blue so I am so thankful for it. I don't like talking about myself too much so feel a bit weird typing this all up, but those words really touched me.

In my category, I had some phenomenal people. The lady who won had been a nurse for 40 years, retired, but then continued on a voluntary basis for 3 years whilst being a carer! In every category I learnt something new about a service which I found so interesting, so even at the awards night I was gained more knowledge about what was available.

One of the most interesting things was chatting with the CEO (Danielle is the most confident person after a few glasses of wine...) about services and his own experiences with the mental health system. He (John Lawlor) was a lovely guy and as well as him we gained some really good connections. One other highlight I couldn't miss was that we got to ride (is that the right word, haha!) in the Mayors private lift - true wheelchair privileges.

It was a fantastic night, and it was lovely to see some really dedicated teams and staff. It also was hard, because I know there's so many stretches and cracks in the mental health system at the moment too yet it's not up to the people in that room to be able to change that. I've been in some of the serves in the area which haven't gone well at all yet I'm in some at the moment which are really trying to look after me. The bottom line is, the whole system does need more funding but there are some very incredible people who are doing so so much to literally save as many people as they can.

Kate x

Saturday, 15 April 2017

Calvert Trust Respite Stay


Adventure Time

I've managed to put a little bit of energy aside to type up my absolutely incredible time I had last week at the Calvert Trust. I was incredibly lucky to be one of the guests who were sponsored as part of Rosedale Leasing's huge fundraising attempt to raise £5,000 for Calvert Trust.

Who are they?

Now, a little about each one.  Calvert Trust is a registered charity and it isn't just any respite break. They encourage guests of all abilities to achieve their potential through outdoor adventure. Located in Kielder Water Forest & Park, it is a beautiful setting with lots of opportunities to do various activities from crafts to zip wiring. For the respite care, they have special activities like themed weeks throughout the year and staff really go the extra mile to adapt to the needs and likes of each guest.

I met the Rosedale Leasing team for an hour before my respite and I honestly have never met such a lovely bunch of enthusiastic staff. With such a great atmosphere, and being such a charitable company, I was thrilled to support them in their (huge) fundraising mission they had to tackle! They will be doing parachute jumps, Great North Run, fairs, auctions and whatever else they have up their sleeves - I cannot wait. The bubbly team are well on their way with their target, so I'll keep you update on that!

Why did I go?

We have been pushing for nearly a decade to get some form of respite care, more so to give my parents a break. It's hard for people who don't know me very well, or who might just follow on social media, to see how my illness really effects me. I do tend to give a very 'positive' view online (although not in person sometimes!) so it's difficult to see. I am classed as needing 24h care, I have to have regular checks if I'm not with someone and things can change with me very fast. So because of this my parents always have to be on 'alert'. So, it was time they had a break. So much so, when I was collected, the driver thought my mum was the one going for respite she looked that tired (sorry mum!) so it was really needed. I needed it too. I needed to get out of my room, disconnect from my phone/Project Parent/helping people, breathe some fresh air and enjoy nature. Most importantly, I wanted to really test my anxiety with staying away from home too - this was a huge step for me as I haven't been away without my mum in about 4 years so I wanted to try. Oh, and I love outdoor activities so this was so perfectly matched.

What did you do?

Monday - I rested all morning and got the Calvert Trust transport bus up to Kielder at about 1pm. Because my WAV still isn't here and I wanted to take my electric chair, they came down with the bus so I could get it all strapped in. It's a good job they bough a bus with the amount of things I took with me. My medication bag was nearly the size of me, considering I was staying 4 nights it was pretty impressive. We had a cheeky stop on the way to get some chicken and sweets (which weren't consumed together) and arrived at Calvert Trust. The first thing I looked at was my phone from habit and was so relieved to find there was no signal, before realising my mum would worry like mad! We got off the bus and I parked myself up in the lounge area. I was shown to my room which was surprisingly spacious and I was so relieved I had an en suite as I'm funny like that! I rested for an hour of so before having dinner with everyone in the cafe. The meals are all home cooked and Kate friendly. There's more stories on the Kate-friendly food to come! I sat with everyone in the lounge in the evening and we decided what evening activities we wanted to do throughout the week. Then, the group decided tomorrow morning they would do archery/laser clays then in the afternoon motor boating. Me, being me, I was like 'yep I'll do them all' until one of the guests said she would like a lie in and I realised it's ok to rest. I then spoke to the carer and said that realistically, I do an hours activity a day so I usually rest in the morning and I'd be better doing something in the afternoon (as the morning there starts at 7am, I've never heard of that time...) and they were totally fine with that. I stayed up a little longer to play a game with another guest (giant connect 4 in electric wheelchairs is a nightmare when every time you accidentally ram into it all the counters fall out the bottom for the record...) and went to bed. I had a fairly panicky night, what with being my first night away, but I think I coped fairly well.

Tuesday - After a lie in, Rachael, Julie & I (Rachael is from Rosedale Leasing and Julie, her mum, is the other sponsored guest) decided to go for a little walk. I was being all professional, getting a map and directions. I started off with the map upside down then forget every single direction we got given. My chair has good suspension, but poor old Julie was bouncing around so much I was concerned we might have lost her at one point (out of the chair, not died, I must add, Rachael is not that badder driver....). After our lovely little bonding trek we get to a metal gate. Now Julie is a whole foot smaller than me, meaning her wheelchair fits under the gate. I put my wheelchair in recline, the only way I personally could think of tackling this scenario, and attempt to limbo underneath (shaking my shoulders for the full effect). After nearly being concussed we realised my height head failed me once again. So, the only way around was to go a good mile down the incredible bumpy track again and miss lunch (we are not one to miss food), or, go around the gate. Either side of the gate were 2 massive bogs of mud followed by steep inclines. I slowly drove the chair through and realised when I was fully in this was not the best plan. Totally stuck, with the heaviest chair, I had no signal. Rachael and I then spent the next 20 minutes trying to lift and pull the incredibly heavy chair out of the mud. We eventually did it, I had to be hosed down when we got in it was that bad, but we had lunch and Julie laughed most of the way back so at least we made her smile. After lunch, we went on the motor boats. I'm not going to lie, I was dreading this. I have a phobia of being trapped and feeling sick, so boats aren't my favourite things. The first 10 minutes was amazing, sunny weather, lovely view and I was just really proud. After then I started to get anxious and by the time we got to the first stop I really wasn't good. So I went from my wheelchair to lying on the boat floor waiting for my medication to kick in and tried to get myself through the rest of the journey. I did drive the boat though! It would honestly be amazing for anyone who wasn't me and was scared of everything in life, everyone else loved it, so don't be put off by what I say! Their water week is one of their top attractions! I got back and went to my room, I had a chat with a lovely carer who helped me prioritise which activities I'd love to do and talked with me for awhile as she knew I was upset. I did have a bit of a private emotional breakdown afterwards, then went through to phone my mum and just needed to cry to her as the boat had rocked me (see what I did there...). But, I refocused. It was a night walk so we went out at dusk around the nature trial which was really nice as the evening activity - the first time I've tried my wheelchair lights out too which was a bonus! Called it a night and went to sleep as I was so emotionally drained after that but ready to take on tomorrow.

 Wednesday - The gang were out on the golf buggies this morning which I was gutted I missed out on but I know my body needed the rest. Instead, I caused havoc with one of the carers for half an hour late morning planning the meals. I have a really restricted diet, having a digestive system which doesn't function, so we were trying to wind the chef up. Now, the chef makes the most gorgeous, home cooked meals every day and did everything to cater for me, and, provide variety. But, today his life was made hard. We decided to ask for homemade gluten and diary free profiteroles (with 4h notice) for pudding and an eggless omelette. We could've been there all day causing chaos in the kitchen but it definitely put my morning off to a good start. I was totally ready for this afternoons activity - the Kingswing! It's basically a giant swing which you are attached to and you fly around. My favourite bit was actually watching Rachael scream after getting about 2m off the ground and everyone else being 10 times the height and not flinching. I love a good adrenalin rush though and really enjoyed that. I came back in early and had a rest as I knew I wanted to take part in the arts & crafts night. We painted piggy banks and it was so lovely seeing such a wide range of people all laughing and having fun painting!

Thursday - I laid on the sofas in the lounge this morning whilst the group went geocaching. I was so tired so I was pretty glad it was quiet around. I didn't fancy this afternoon's activity (sailing - I aint going back on a boat!) so my lovely carers took me on a walk round the reservoir. Rachael and another guest joined, the whole of the reservoir is surprisingly accessible with lots of pieces of artwork and I got my first proper geogache! I waited too long before asking to turn back today so by the time we got back to the centre I was absolutely exhausted. Unfortunately, then I fainted on the bed and then started having my panic + seizure. My legs spasmed and it shook me a lot. Stupidly, because I heard other alarms going, I waited about 15 minuted before pulling mine so I didn't do myself any favours. My feet curl in spasm when I seize so I sprained that but otherwise I was ok. I just wanted to get up to phone my mum (as I got no signal in my room) and then go to bed. I missed out on quiz night but the care team kept a good check on me.

Friday - Last day :( I got up at a reasonable time because today was my last morning. I had a go on the zip wire which was lots of fun then went back in to put my legs up before lunch. After lunch, I said bye to the group and took the bus home. An incredible trip and I honestly will never forget what an amazing time I had!

*Please note, this is the shortened version. We would be here for days. Calvert Trust did do a lot of things like personal care, help moving, socialising, etc and I haven't put in too much detail to keep it as short as possible.

Best Bits

Narrowing down my best bits has been the hardest part of writing this, because I truthfully have had the time of my life. I've enjoyed it ever so much (okay, minus the boat) and really would recommend it to anyone looking or needing respite care. One of my best bits is simply the location. It's breathtakingly beautiful being amongst the wildlife, trees, fresh air and by the reservoir. I loved having carers around me who were not only just good at their job, but also love their job. I loved the other guests. For example, one of the girls who was profoundly disabled saw me crying secretly in the corner to my mum on the phone and next thing I know she's parked her wheelchair next to mine and she's holding my hand. One guest was deaf and the whole week was like a massive game of charades and he laughed as the one thing I told him I could sign was chocolate cake so every time he saw me he thought I was hilarious. I learnt to communicate with a guest who was none verbal which was so rewarding and I never thought I would be able to do. I gained friends there and especially have to say that I laughed every minute I was with Rachael & Julie especially, so I'm so lucky to have been sponsored with such an inspirational family. I loved the kingswing and the zip wire at the centre, the adrenalin is a feeling I thrive on. I also loved going for walks and more relaxed craft sessions. I stayed away from home and not just survived, I actually enjoyed it. I managed to get the right balance for me of rest and stimulation, which I can't even do myself at home, and I think that was probably my biggest achievement. I was looked after so well, I had a laugh with the staff and guest so my week was really enjoyable.

Thank you

Of course, I can't leave this post without a thank you. A huge thank you to Rosedale Leasing for doing all the amazing fundraising so that I was able to be sponsored for a place this year. A special thank you to Rachael from the team who does have a caring role to do outside of work and therefore was brilliant with me when we were away. A big thank you to Calvert Trust, in particular Charlotte who put me forward for the nomination for the scholarship, as I've had the most amazing time. The carers, activity staff and caterers have taken such good care of me over the week and I don't think the word 'thank you' does enough justice. But from the bottom of my heart, the opportunity I have been given to have a week of something to do for me, and for my parents to have some time to themselves (although poor mum was poorly bless her!), we will always be grateful for.

Kate x

Tuesday, 28 February 2017

Rare Disease Day | Ehlers-Danlos Syndrome


Hello! So, it has been awhile since I've blogged but I'm all cozied up in a remote cottage (recovering from a relapse) and thought it was the perfect time to write a little article on Rare Disease Day.

So, as you may have guessed, today is Rare Disease Day. I am a lovely complex mixture of both rare and more common chronic illnesses, but I wanted to write about one of the main battles I face - Ehlers-Danlos Syndrome. I'm trying to keep this a short + simple version, but if you'd like to find out more about EDS I'll put some links at the end of my blog.

What is EDS?
EDS is a hereditary disorder of the connective tissue. Connective tissue supports the tendons, ligaments, skin and bones so this means that EDS can affect nearly every part of your body.

What are the main symptoms I suffer with?
  • Joint dislocations - for example my shoulder will dislocate around 12 times (plus) a day. I get full dislocations of my hips, wrists and ankles on a daily basis. All the rest of the joints are less often thankfully!
  • Easy bruising - I cannot kneel on the floor as it would cause my legs to bruise horrifically. My friend calls me 'peach' because if I even have a small impact I'll bruise significantly. Sometimes for no reason!
  • Joint hyper mobility - my joints have a massively extendable range of motion which they shouldn't have. It was a pro when I was dancing but now it causes problems
  • Joint pain and tiredness - I get severe fatigue so currently can only do one hour of 'activity' a day and use my wheelchair to mobilise. I get pain in my legs and head especially too.
  • Gastrointestinal problems - I've had severe problems with my digestive system for years which sees me drop stones of weight in a few weeks and stop eating. I'm currently on a tablet which is acting now as a pacemaker for my intestines as they don't work properly but we still have major issues. We've had everything from internal bleeding to my stomach making it's way through into my ribcage!
  • Dysautonomia - I have vasovagal syncope which causes my blood pressure to drop suddenly. My heart really struggles pumping blood around my body so it pools to my feet which causes me to feel very dizzy and/or faint so that's always exciting.
  • Other symptoms I have include things like stretchy skin, urinary problems, heart murmur... Everyone can experience different symptoms and of different severities which makes it extra difficult with it being an invisible illness
How did I get diagnosed?
There is a test for EDS which is made on clinical features. I personally had to travel all the way down to London about 4 years ago to get my diagnosis.

What is the treatment?
EDS is lifelong and has no cure. I received my diagnosis then basically got left which was very difficult when I had so many problems. The North-East has a major lack of EDS resources so it's sometimes a postcode lottery situation. We now see specialists for each area of symptoms, go to an amazing  clinic called CRESTA which has a interest in EDS and I try keep my joints in place as much as I can by doing very gentle pilates-like exercises to build up my muscle strength. This is a life long condition and I will have to work hard every day just to keep some of my joints in place. Research/treatment/knowledge, especially in the North, is very limited so it makes it difficult. So sometimes it's a bit of a guessing game for both me as the patient and the doctors.

What can you do to help?
Educate yourself about EDS. Read more about it here and just have more knowledge on the condition. If you know someone who has EDS, or any chronic illness, support them by even just popping in for a cuppa. You don't know how much it means. And if you're feeling especially kind - donate to an EDS research charity. Or, you could buy something like a Spoonie Survival Kit (seen here) who are selling their kits to raise money for EDS UK. 

So, you've got a rather short explanation of EDS (which I suppose is a perfect read for anyone who suffers with it - not too tiring!) and I hope this can spread a little knowledge today.

Kate x