Summer Adventures.

In the last three months I have been experiencing quite a few rapid improvements in health. I'm no where near better, and still spend pretty much all day in bed. But being able to get out and my world opening up has been so so incredible. I hadn't stepped outside for nearly four years so it has been pretty life altering :) I've been wanting to tell everyone for ages but was so nervous about getting peoples hopes up for it to be a one weekend thing that then vanished.

But it really doesn't look like it. It started quite small, I'd sit out on the ramp at night and get a little bit of a sense of independence, then a small walk round the block in my wheelchair. Being downstairs and being spontaneous/reckless meant that if I felt up to a little bit more now I could take advantage of it.

After a few weeks of this and being able to sit up a bit longer each time, I got to see my Nan and Grandads house for the first time in forever!!!

Then I went to the shop and bought bubbles, and went on my first trip out with Andrew that wasn't a hospital. I was amazed by everything and probably looked like the oddest person touching everything like I was 5. I even managed to go in the car to pick him up from the station.

The little car journeys began to lead into trips out places, nipping to tesco for a wheel around for ten minutes or round the corner to a garden centre. The world suddenly seemed massive like I could go anywhere and do anything.

Feeding the ducks at Grafton some meal worms.

And yer new symptoms are popping up and showing themselves as I am doing more, dizzyness and tachchardia are back with a vengeance and weakness and headaches, visual disturbances when out are a bit disorientating and scary. I'm still really limited, and to many my world is still pretty tiny being in bed constantly and only nipping out for an hour every few days. But I don't really care at the moment, as to me and my family and friends this is the most exciting thing. I'm getting to see new things all the time, try out new places and my family have a tourist to show around the town I have actually lived in my whole life as its changed so much since I last went out :P The trips out are getting further afield and more adventurous now, I've even gone to Market Harborough for a trip :o, and today I managed to eat out for lunch for the first time :D

From sitting up more, standing occasionally for a few seconds I'm now sporting some leg muscles too :o they are still pretty useless at working but my legs were so scrawny and wasted from not being used at all. They look like actual legs now :D

Some photos of summer:

Beckworth's for a look round.

Baby rat cuddles at Bugtopia.

Successful Hospital visits.

Lots of little shopping trips. (that is my mum driving a mobility scooter :P)

Outside BBQ

Wheel around wickies :)

My first time on a swing at the pleasure park :D (I totally failed at even being pushed haha)

Getting my nose pierced.

Finally getting to see my Dad's house and going round for tea <3

Outside tea parties.

Baking

 

 

Me in a lift!!!!! (major hatred of them)

Shopping trips with inviting beds ;)

By far the most promising and exciting thing I've managed this summer is getting all the way to Breakspear with a lot of help from all of you but I think that is for another post another day to tell you all about the treatment plan and what's next :)

I have no idea why I've improved, or how or how long it will last for? This spur could be gone tomorrow, or next year, no idea. But I do know I am making the most of it whilst it is here and I'm loving making new memories. Thinking about what next, where I can go, how far I can push it and seeing lots more friends. As well as trying my very best to heal more, whilst I can get out and get to appointments and see the drs who can hopefully make this not a blip and only the beginning of my journey to getting well again, as its a long way to go.

Loads of love, Emily xxx 

 

 

 

Long time no speak...

It's been way too long since I last updated everyone. Hope you are all getting to enjoy the sunny weather :) A lot has changed here in the last few months, Georgie has gone back to Bristol for her second term at uni doing Law (she's loving it), Matt and Dad have moved into their new house, as well as other personal stuff that I won't get into. It has also meant that after a long wait and lots of form filling the council were able to start the adaptations to our house to make it more accessible for me. With so  much change it's been a bit stressful and exhausting, but the house change is such a good thing so it's pretty exciting.

I've now got a ramp outside so I can be wheeled to hospital appointments and maybe sit outside in the sunshine for a moment or two without the palava of getting out temporary ramps or lifting me down steps on stretchers. Further into the future it also means no steps to walk down and easy access to independent trips out to my nans or budgens (big goals)

All of the doors have been widened downstairs so they are now really big for my chair to easily get through (hopefully without taking chunks of wood with me) The council fund the renovations but no painting or aesthetic stuff so it still does look a bit building siteish with plaster work showing but now the doors are all painted (thanks to our really speedy and lovely painter/decorator) and they are looking so nice it feels like its all coming together :)

The plan is for me to move from my current bedroom upstairs (where I have to zoom perilously close to the stairs to use the bathroom) to the living room dining room downstairs. They will be my rather ginormous living quarters and even have the sofa in there for visitors (and maybe me when I can sit up on more squishy surfaces :))

The most amazing part of all of this is the wet room that they have put in for me. It has loads of space meaning lots of chair maneuvering room and no steps or shower trays to climb into. Now just to get the seat sorted and it'll all be ready to go :) I was going to have a seat on the wall but logistically it wasn't possible so awaiting my OT to find me a comfortable wheeled one, and need to find a nice mirror for over the sink.
Baths have only just become a possibility, so a shower seems like too much to hope for but it could be just around the corner by the looks of things :D

Taps and rails and controls all being at my wheelchair height is amazing :D

They even were able to use the same tiles as we had so it all fits in and looks pretty good if I do say so myself. Now just to get down there to use it!!!

The chair I've got to use in their at the minute isnt suitable at all so on the hunt with my OT for a better one so fingers crossed I'll find one soon. As this is really uncomfy just fall down the middle of this one and get serious back pain just sitting in it for 30 secs to try it out :P  Why have all the padding on the outside :/ weird! And even though it has adjustable legs even on the highest setting my legs are too short for it haha.

I'm also hoping to apply for a more permanent stairlift, so it means I can go upstairs as I get stronger without needing to be well enough to tackle stairs (which may never happen) getting to visit my mum in her living room and being part of family life up here occasionally. As the stairs would be a mountain without it.

I'll update you all when I have moved downstairs (should be in the next few weeks or so health depending) and let you know how i'm getting on with it all. It will finally mean I can access every part of my house (bar the back garden) without assistance thanks to my electric wheelie. You never know if you pop round it might not be too far off till I can actually make you a drink ;P

Lots of love xxx