Thursday, 19 March 2015

Shopping Spree


It's amazing what I can get done in a small amount of time, especially when it comes to shopping! I recently went to the metro centre (naughty, not supposed to travel that far!) and spent half an hour grabbing some bargains. I bought the shorts and necklaces that day, then the top is from a christmas sale. Love my savings!

Shorts - Miss Selfridge. Was £35, now £20
Stack of 3 necklace - Primark £2
Triangle necklace - Primark £1
Top - Topshop sale from Christmas
Tights - M&S

The shorts are absolutely stunning. They fit perfectly (but Miss Selfridge sizes are tiny!) and make a great statement. I love them as I wear shorts with tights a lot. The necklaces, stacked together, provide a delicate focal point on my plain top. Gold is really in at the moment and the tiny necklaces worn together look gorgeous. The monotones outfit all flows nicely and the gold just adds a bit of detail. I like dressing up a bit, I should make an effort more often.

Kate x

Tuesday, 17 March 2015

Setting up my own community organisation


I thought it was about time I blogged about my little voluntary project. I have had a lot of experience with setting up my own community organisations with the help of certain companies. My first one was called 'Crafts for ME' and then my current one is Project Parent. 

'Crafts for ME' was an idea which came to me after being stuck in bed for awhile with ME. The only thing I could really do was small craft project, which got me through the day, and I wanted to share this experience with other sufferers. So, I did some research on organisations which could help me. Here, I came across vinspired cashpoint. All the details are on the link, but I did a lot of planning and ended up getting a £500 grant to start up my project. I used the £500 on crafts and postage, and managed to make a number of very happy ME sufferers. The way it worked was that you nominated a sufferer, with things like age/likes/severity included in the form, then I'd sort them out a craft box. I think I managed to give out 20 overall and I loved doing it. The only problem was that I didn't have any opportunities to continue it after, but it was a real stepping stone giving me confidence and organisational skills.

After a long break, my next idea came to me. Project Parent. This started in 2013 and involved making up gift boxes for parents of children who are in hospital. Primarily, this was for Christmas and was focused on the RVI in Newcastle, but I always had ideas of expanding throughout the UK and having different time slots throughout the year. I needed support with both funding and training, and through my friend Alex, I found 02 Think Big. This gave me more opportunities to expand my idea and the training I needed to run my project. Again, after much planning, I gained a £300 grant and a training session in Leeds, which meant I ran my project last Christmas. As it was so successful, I have applied for 'Think Bigger', which gives grants up to £2,500 and would mean I could really expand my project. In the meantime, word got out thanks to an article in my local paper here, and lovely people have been fundraising for me already meaning I already have a good starting amount to continue the project this year. I should hear back sometime in March about if I've been successful for the grant, and have got my fingers crossed as this is a project I've put a lot of effort in to.

So why don't you give it a go? These projects you lead by yourself with a group of volunteers are by no means easy. A lot of planning, determination and effort go into them. But it's so worth it in the end. I do encourage anyone to give this a go. There's a lot of opportunities out there, and especially if you are like me (don't get out much, need a project to keep me focused) then it's worth a shot. If you need any help feel free to contact me on my 'about' page.

I'll write a longer post on Project Parent and it's work soon.

Kate x

Friday, 13 March 2015

Do you ever stop fighting?


This week has been a bit of a nightmare. Just so much to take in, but some of it, thankfully, is positive. I wanted to update people on my health & what I'm doing as I realise I haven't been in touch as much as I should. I started relapsing in September, and unfortunately has been a steady decline. We are trying to get things in place to stabilise me and get things back on track.

I started rehabilitation at Newcastle General Hospital about 7 weeks ago now. I can't fathom what a difference it's made to me for a number of reasons. I have made a lot of new friends. Having similar conditions themselves its been so easy to talk to them & get advice on different things. The group is nice and relaxed (we do relaxation for 1/4 of the session) and we do gentle exercises to focus on particularly stabilising our pelvis and building up muscle strength. I have took little steps each week, and with much hard work I've seen a huge improvement. At the start, I could manage 3 sit to stands (sitting on a chair, standing up, and sitting again) before having to stop due to feeling exhausted, dizzy and like I was going to collapse. This week, I managed 12. So in 7 weeks I've quadrupled what I was able to do in some things. The other exercises are a lot easier as they're done lying down, and I still struggle a lot with anything to do with my arms as my shoulder dislocates, but overall, progress. I wish this was available for more people, I'm so lucky in a way I got told I was 'too complex' for the other clinics and ended up here, after a 6 year fight.

We've had some issues with the GP's. It feels like a constant fight for what I need. After many blood tests (long story short, they forgot to do the ones I needed) I found out I've got a B12 serum folate deficiency. My B12 is low. My Vitamin D needs to be double what it is. And, my thyroid level is too high. I was a bit overwhelmed after self diagnosing the B12 deficiencies and getting the blood test to confirm it. Now, even though I'm deficient, I've been told 'no action is necessary' which is crazy. It has such a huge impact on my ME that it needs seeing urgently. So, I've booked an appointment and I've got all my evidence with me to back up that I need more investigations, B12 injections and some more tablets to help me stabilise. I'm lucky that it was actually one of the women at rehab who told me about the effects of low B12. If I get the right treatment, it could make a huge difference and be quite an easy fix for most of it, so I'm battling to get the right support for this!

Another mix up with the doctors means I'm still waiting to see a gastro specialist due to my continual loss of weight and intolerance's. This, undoubtably, will be linked with my EDS. I'm also waiting to see a phycologist who is based at the CRESTA clinic to start some kind of therapy/counselling which I'm pretty desperate for.

Alternative therapy
I'm still having acupuncture, which helps with my pain so much, and that's going well.

Other things which are going on
I haven't been to college in about 3-4 months but starting next week I'm going to go in for an hour a week and do some art. I still have carers and the enabling is going so well - we have a right laugh. I'm spending most my time in bed at home but when I'm well enough in the evening I come down on my recliner and spend time with my family, which is so lovely.

So yeah, my health is providing a number of obstacles at the moment, but nothing that I can't beat. I'm hoping this information could be useful to those who are struggling to get help - keep fighting!

Kate x

Wednesday, 11 March 2015

Introducing my new project


You don't know how hard it is to not sing 'popular' from Wicked after this title. Anyways, I have exciting news. It's my 21st in June and all my original plans have had to be scrapped, well, postponed, due to my health. No worries though, I have more manageable ideas which are closer to home, in fact, in my home.

Today I purchased my first 21st birthday present. It's something not many people would probably want on their 21st birthday, but I can't wait. It's going to give me a little bit more freedom, my own space and a place where I can have friends over to chill out. Guess what it is yet? A summerhouse.

My summerhouse is a bit different mind. Its going to be more of a mini home. I'm getting it insulated, with double glazing, plastered and with electricity. I'm ever so excited. I think I'll be camping out there a lot. It's getting built, from scratch, to my custom requirements in 3-4 weeks. 

This is the one I'm getting. A nice, spacious 10x8ft size. In these colours too! The inside, as I said, will be plastered and I'm going to have it painted neutral colours. I'll also have a nice light in, a heater (a must have for me!) and I'm going to buy a sofa bed too. I'm probably most excited about making the inside 'my own'. I'm going to put some of my own art in, comfy knitted throws and things to make it nice and homely. Most importantly, it's going to be a place I can put my ipod on & chill. I'm hoping to make it my art/music haven and no doubt my guitar will be featuring in here too!

So with this summer house, I'm planning on having a small garden party which will be a kind of 'house warming'. I'll blog about ideas for this and for my summer house to keep you all updated.

Before I go, here's a little doodle I did this morning, which is totally relevant.

Kate x