Monday, 25 April 2016

The stuff of dreams

It's fair to say this is the busiest start to the year I've had since The M.E. Years began. I've been abroad for a start! That alone is more than I've managed in any other M.E. year.

And now I am here to tell you that Mr Tree Surgeon and I have moved in together!

First and foremost, if anyone had told me this was even a possibility two years ago I would have given them the dirtiest, grumpiest look and told them they hadn't never been so wrong.

Yet here I am. Sitting in our conservatory. In our house. Drinking coffee out of our mugs.

It must be incredible for my parents; to see their daughter well enough to do something as normal as move out of home. Without their care and unwavering support throughout The M.E. Years I would not have made even an iota of the progress I have made. 

And for me to have found someone who loves me just as I am; who can see past the limitations of M.E. Well there aren't really any words to do that bit justice. 

Moving day went swimmingly! We collected the keys for the new house in the morning and then our team of movers met us at our new address to start unpacking.

Mr Tree Surgeon and I had help from both sets of parents, his lovely friend, and my Not-so-little Bro and his lovely girlfriend. I found it a bit hard not being able to do much more than sit and hold the guinea pigs but I'm just not well enough yet to be charging around moving boxes and unpacking things. 

Not only is it a lovely house, that I get to share with a lovely man, but it is something that I never dared to even dream about; moving out of home and making a new one. This move symbolises so much, not least the progress I have made over the last six years. There is still an unimaginably long way to go to return to full health or even half-health, but anymore milestones and progress will be made from my new house! 

I'm so happy I might burst!!!! 

(We are still waiting on news about how moving in with my 'partner' will affect my disability benefits so I can't fill you in on that bit just yet.)

Saturday, 9 April 2016

Another year, another fundraiser

In just over a month it'll be International M.E. Awareness week (11th-17th May) with M.E. Awareness Day being the 12th May.

Just as I have done for the past few years I will be hosting a tea party, now known as Blue Sunday, on Sunday 15th May. 

Feel free to contact me via the Contact Form on the blog if you'd like to join us. 

I have once again set up an event page on Facebook for anyone to join. So many of us are unable to travel and so once again I will be posting pictures of my event (being held in Stamford, Lincolnshire) so that even those who are stuck in bed can feel apart of the event. You can post your own photos of you drinking tea and eating cake and chat with others online who are doing exactly the same. 

Any donations, of the price you'd expect to pay for tea and cake in a coffee shop, are very gratefully received. I have a personal JustGiving page and there is also a group page where those wanting to host and fundraise for their own event can link their own fundraising page with the rest of the Blue Sunday fundraisers.

The ME Association asked me to share a few 'hints and tips' with them, and, although it's not the usual type of blog post I like to publish, I thought I'd share the pointers with you here: 

"Hints and Tips for a successful Blue Sunday

·         Be organised – I tend to start planning in January! That may sound incredibly keen but with an unpredictable health condition you never know how long these things take. That said there isn’t a mountain of preparation to do before the big day so it isn't too late to start now. 

·         Gather a team of helpers – I am incredibly lucky to have the unwavering support of my family. So far I haven’t actually done any of the baking myself! My brothers and mum manned kettles, my dad distributed pots of tea and my sister was incharge of playing host.

·         Book a venue – 2015 was the first year we did this but it worked very well. The success of the previous years showed us that it is incredibly hard to squeeze so many people into our house! The village hall that we booked was £30 for the whole day.

·         Be kind to yourself – Although I didn’t have to do anything other than sit and chat I found the day exhausting. Who wouldn’t? So allow yourself rest breaks where you can go and hide away for a while.

·         Send out invitations – somehow it makes it seem more official and people really do save the date in their diaries. Have set times within which you want people to call in. We’ve tended to have it between 2-4pm.

·         Ask people to bring a cake – Baking for 80+ people is not something we’d manage! We found that many people jump at the opportunity to roll up their sleeves in the kitchen and create something delicious.

·         Accommodate for all – Try to make sure there alternatives for those with dietary requirements. There are so many gluten free recipes around these days but also remember that not everyone can drink cow’s milk in their tea and that sweeteners offer an alternative to sugar for those who cannot tolerate it.

·         Have party boxes for the leftovers – ask people for another small donation if they want to take any leftover cake home with them.

·         Blue blue blue – I always go all out on the day and decorate everything, including myself, in blue. We had blue everything! Tablecloths, bunting, napkins

·         Remember why we’re doing it – Each year I have left donation boxes on each table or around the room. I ask for the price people would expect to pay for a slice of cake and a pot of tea on a cafĂ©. Last year 80 people came and donated a total of £500 in two hours!

·         Do your bit for M.E. Awareness – I leave short and sweet information cards around the room so that people can educate themselves about M.E. This side of Blue Sunday is incredibly important to me; giving a true and accurate insight into the reality of the condition. (I’d be happy to share these with anyone who is unable to make their own and they could print them off.)"

Saturday, 2 April 2016

"But I thought you said you were getting better?"

wouldn't blame you for asking me that on a day like today. 

Every bodily system seems to be suffering today. I can't digest food properly. I can't see properly. My heart isn't quite right. The paralysis is being a pain. My lungs can't seem to take in enough oxygen. Gravity feels too heavy. The nausea is bad. The muscle weakness is off the scale. I'm dizzy. Really dizzy. If you asked me how I was my response would simply be "Urgh."

It is no wonder that people get confused then when I talk about myself as 'in recovery' or 'making progress'. I often wonder if recovery from an incurable chronic illness is more a state of mind than anything else... 

This is a bad day. But a few years ago a day like this would have been celebrated and classed as a good day. I have (finally) made it out of bed. I have sat on the back step at Mr Tree Surgeon's bungalow and felt the sun on my face. 

I managed to wash my own face with a face wipe and make myself a cup of coffee! Bad days used to mean being spoon fed by Not-so-big Sis. 

We must keep looking at the bigger picture and remember that my progress cannot be measured day by day or week by week, but rather year by year. 

I suffer to some degree every single day but today is a tougher one. Here's to a better tomorrow. I am still getting better.