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

Trekking to mount doom.

   

http://s-a--k-i.deviantart.com/art/On-the-way-to-Mount-Doom-364678279

On Wednesday I went to my hospital appointment at the Immunology department at Kettering General. A bit of back story behind this appointment is that I've been struggling with allergies and breathing difficulties for nearly 4 years now ( apart from the animals, pollen and dust ones I've always had). Genuinely the argos catalogue now causes such bad reactions I cough until I'm sick and really struggle to breath (shopping is dangerous obviously, I should sue ;P)

My GP sent me to the immunology and allergy clinic a year ago but every time the appointment has come round I have been too poorly to make the appointment. Not just too poorly to sit in the car, walk in and sit in the waiting room as normal people do, but far too poorly to even travel on a stretcher by ambulance and lie on a hospital observation couch and be seen and then be stretchered back home like I had done the last few appointments. Last year I was just too weak, too many viruses and setbacks meant I just didn't have it in me to get there. We got kicked off the books for cancelling too many times and several GP referrals later we got it sorted so I had an all important must make it appointment on Dec 18th.

So this time I had to make it, yes to see the Dr and get treatment. But also, almost more importantly, to stop the drs coming to the conclusion I don't want to get better. Because if I can't make it into hospital unfortunately I can't receive any treatment from a consultant whatsoever and to get most things done that is who you really need to see in the NHS.

Hospital trips are horrific for me, as having been able to control level of noise light and temperature in my room constantly.  Having everything so quiet and still and not moving very much at all for three years and having my little safe haven set up exactly as I need it limiting the amount I need to move and having everything readily accessible means leaving to go to hospital is so bewildering and disabling. It is like being an average person, never exercising apart from walking round the shops and expecting your body to cope when you get up one morning and on a whim decide to run a full marathon. No training, no slow build up. Just Wham!!! that's exactly what I have to expect my body to suddenly become accustomed to when I go to hospital. And because of that I get poorly, really poorly, and it is a pretty scary and incredibly daunting thing to have to do. We semi cope by a heck of a lot of forward planning, taking everything and the kitchen sink with us that I might need and a lot of painkillers and sick bowls. The temperature changes make me go into shock so a lot of blankets are needed and then fans and ice packs for how boiling the hospital is to stop me overheating, eyemasks, sunglasses, earplugs anything and everything to minimize the impact of how loud and bright and ill making the outside world is.

This time we created a bed out of sofa cushions so I could lie on the back seat as the last few trips waiting around for the ambulance people and being jostled around had been one of the most stressful parts of hospital trips, but it does mean a lot more physically. I have to sit up, transfer to my chair, sit on the stairlift, set up ramps and be wheeled out of the house climb into the car climb out the other side and transfer several times more. When usually I lie down and transfer very little in a day.  My rubbishy muscles are also having to tense when jostled and moved in the car and chair readjusting to stop myself flopping around which they are totally unused to. The huge downside of not ambulancing is having to sit up the whole time from the car to the bed in the waiting room. The car bed is pretty comfy though but driving in the car made me incredibly dizzy and sick, and feel so unwell.

We somehow managed to not be able to find the right part of the hospital so had a lot of stress with having to get back into the car, ask directions and a whole lot of palava. So many times I said 'I cant do this it's too much I need to go home' but pushed through it and was so relieved and happy when I managed to stay through the whole appointment, despite shaking badly and throwing up before the appointment had even started. It was mostly down to the lovely nurse that I managed to stay.

This appointment was completely worth it though. The Dr was kind and understanding and the nurse had really gone out of her way to look after me and make sure I had somewhere quiet to rest with closed blinds, a blanket and an open window (a godsend to my rubbish temperature control). The Dr looked at the whole picture and discussed everything.  The conclusions were that my stomach is having real problems and I need to be referred to a gastroenterologist, I need to be checked for rheumatoid arthritis and several allergies via blood tests done at home, I need to go to Leicester to confirm I'm lactose intolerant. And that several of my allergies are actually aggravated asthma and has put things in place to look into this. So much positive information came from it, and lots of referrals so hopefully with this and breakspear we can find a way forward.

Now I'm back home and in bed I am really really struggling. It is the hospital visit payback, but also I was woken at 9am after 4 hours sleep the day after hospital to be given my annual flu jab. People with M.E are known to overreact to any virus or bug no matter how small and it to make there symptoms generally worse  so that even the tiny amount of dead virus in vaccines can have a big knock on effect on my M.E. I've generally been feeling really fluey, headachey, sick and like I have a temperature since. But especially with huge payback from the hospital everyday small getting ready tasks have become missions, and having a very small wash in bed has taken 3 days to complete and I've fallen asleep for three hours after each attempt. I'm getting breathless after sitting up for moments, and am pretty much constantly laid down resting.

I'm still doing phone calls and visits but they are making me feel very tired, and symptoms are so much worse than usual. It's also making texting and replying to messages really hard as my arms and my head aches pretty much constantly. I haven't even really been up to Piggly cuddles this week even when she's just asleep, darn body failure. This is why hospital visits are such a huge deal for me and cause so much anxiety, and we avoid them like the plague if we can. Last years hospital stay caused me to relapse like this for over 6 months. This time I have less than two weeks to recover before an even bigger ask of my body. To travel all the way to Hemel and have my breakspear consultation eep. At the moment I'm really not seeing myself being ok for it I'm just hoping I recover ASAP otherwise it may be postponed till I'm strong enough.

This sudden gear shift from normality to marathon running to oh great im massively disabled and can't do anything that I want or need to do is a huge thing to get used to, which I'm trying desperately not to have a tantrum over and rather see that meh yer its a bit rubbish for Christmas, but it'll be better soon, and there still is still good stuff now.

I'm really trying my hardest to be well enough to survive christmas visits and be able to take part in present opening and christmas dinner with my family (and that's unfortunately going to take waayyy more effort to achieve than it should) but I always enjoy Christmas and birthdays and celebrations even if I can only be part of small bits of them.

Rah over. If you read all that you deserve a medal :P but I just wanted to explain whats going on, why I'll be really quiet and why I'm not ignoring everyone honest I'm just generally a bit too rubbish to fb message and text back really at the moment.

All my love, 

Emily xxx

(Artwork by TinyRed from Etsy

)

Note: I found out this morning they can't do my blood tests from home and I may have to repeat this whole trip again solely to get a few bloods done as district nurses can't do these blood tests :'( it really seems to be one thing after another recently. We're trying our best to fight it though and find another way where I don't have to travel all the way back to hospital. (I honestly didn't write this as a tale of woe looking for sympathy or to moan I just wanted people to know whats happening without my standard response of 'Oh im going to breakspear soon' As I am, but that soon has moved a little further away just now. <3

Ups and Downs and a whole lot going on

Hi all,

It's been way too long since I last posted on here. Since then we've had a really successful table top sale and I have spent the last month or so glued to my computer. It hasn't been the most healthy of choices, especially whilst recovering from viruses. But I've been writing to hundreds of companies telling them about Emily's recovery Fund and asking if they wouldn't mind donating items. Incredibly loads of them were really really generous and donated lots of really great things. Which we then put up on fb and Ebay auctioning them all for the recovery fund. Hosting our online auctions has been an incredibly rewarding project that has meant we have now raised an incredible £2300 towards my treatment costs :D and it was really fun to do something like I used to when I worked and achieve something, and not limit myself constantly. To be productive and feel useful and like my brain actually works was a pretty awesome feeling to get back, even if M.E wasn't a fan of me doing so much with bad back spasms and forgetting names,words and what year it was from brain overworking :P


In other news I'd been really looking forward to getting all my results back from Breakspear and when they all arrived they showed quite a bit was wrong in several areas especially immune responses as well as mitochondria problems causing exhaustion,  and lots of food allergies aswell as possibly Rheumatoid athritis. But most of the results were really confusing without an explanation. So we'd booked a telephone consultation which we'd been told would result in me getting my treatment plan and all my meds posted to me, and each result explained. I couldn't wait to get started and begin feeling a little stronger, especially with December Kettering Hospital appointments. But unfortunately it turned out reception at Breakspear had got the wrong end of the stick and assumed I'd already been seen in person. The phone call therefore was more a confirmation that I need to be seen in Hemel for a full consultation in order to be prescribed medicine and be given medical advice, despite them having my test results. This is was so disheartening and frustrating after waiting so long, but it makes sense that a dr wouldnt prescribe and advise you without fulling knowing your case and who you are first. It was just that we thought I could improve at home with meds, before having to face the harrowing journey to Hemel.

It was a genuine mixup though, so we have booked for January for me to travel down for a face to face consultation and then will receive the information and begin my treatment at last. It might only be a few weeks or a months wait, but having waited and been poorly for such a long time progress can't come quickly enough. It seems over the last few years that being patient is the only way to be and just not to stress about it. Because with everything health wise there is unfortunately constant set backs and changes of plans and bumps in the road but you just have to take those in order to get to where you are eventually going.

My room all christmassy

I'm currently recovering from visiting Kettering hospital on Wednesday but shall save all of that for another post, but I am hoping for a restful Christmas this year :)
I also just wanted to wish all of you a Happy Christmas and hope you all have a great 2014, I'm hoping that next year will be bring really great things full of healing and new adventures. That is due in no small part to all of you so thank you millions <3