2.2.18

Stacie on the road:- "Lakes Getaway..."


Sunday 28th January 2018

So people I'm actually on holiday as I type! "Ooo... Errrr..." "Magic!" I know I'm so 'on' my game LOL. So no t's not magic it's actually just I've brought my macbook with me and thought I could get some writing done whilst we were here as I really haven't sat down and talked in a good long while so this is me doing that and I thought I may as well try and document the holiday whilst I was on it and therefore it will be so much more accurate than any of my previous posts where I've simply just remembered. 

We left on Friday and travelled 6hours, I slept a lot of it and I still maintain I have some kind of narcolepsy because I honestly physically cannot stay awake in cars for long at all, I have tried so hard and it just doesn't happen, I feel so awful for Mark as he then ends up having to drive basically on his own or maybe that's a blessing? He doesn't have to listen to me drone on LOL. We got here though and it's a beautiful little converted barn and SO accessibility friendly, I'm SO impressed;- it's all on one floor, has wide doors, wide corridors, very spacious living and kitchen area, beautiful bedrooms (There are two), the bathroom is really spacious and makes showering me nice and easy as we've brought my shower stall to help :), there's also a log burner which is really lovely. Even from just the couple of days we've been here I totally already recommend it. 

This trip really is a relaxing one for us we don't plan on being massive tourists we really do just need a rest physically and certainly mentally, I'm not sure people quite understand the toll living with a chronic and terminal illness has on a person and certainly the partner of a person. So today we actually ventured out for Sunday lunch to a really cute pub and luckily we have a tiny little village that's a 2 minute drive down the road that has everything we need and it really is just the loveliest little getaway so far. 


Wednesday 31st January 2018

Gosh the weather really has been a tad on the awful side, extremely windy very wet and just generally cold and drizzly which admittedly I haven't minded that much because the place we're staying is so lovely and cosy I don't mind being inside listening to all the goings on outside. The log burner is getting lots of use and Mark seems to have really got the hang of using it, I mean I won't touch the thing we don't need anyone burning a house down now do we? LOL. We have managed to get out to the Lakes though and sent a lovely morning afternoon walking/being pushed around a lake, it was a bit hillier than first thought though so it was tough going for Mark, he did so well though bless him, I was SO impressed. Luckily at the end of our walk there was quite a steep hill and a lovely bunch of people could see how hard Mark must have been finding it at this point after pushing me around for so long and offered to help which was SO lovely of them. 

That's something I find with the country, people generally seem more willing to help when you're in a bit of a jam. Everyone seems really impressed with our off road wheelchair as well people always compliment it and ask how well it does with the terrain and whatnot. I'm quite proud of my little chair she does well with what we throw at her. She did have a minor issue on our way here though she had a bit of a puncture that we were worried about but we managed to find a little bike shop that actually managed to change her tyre there and then for next to nothing which was amazing! 

We also paid a visit to the Beatrix Potter exhibition which I thought was really cool! Unfortunately some of it was shut off due to a bit of refurbishment but that just meant we got a discount so no complaints from me :). It was really cute though seeing all the little animals all around and as a child I was never particularly "in to" Beatrix Potter but I knew of it and my mum had some lovely things from her childhood that she always showed us. I just thought it was a cute little thing to be able to see whilst we are here and omg I could have spent a fortune in their gift shop, I'm such a sucker for cuddly toys and all that type of stuff and they had literally all of the animals and I just wanted them all, but nope I restrained myself and managed to not buy them. They were a tad on the expensive side for the size of them. 

We're still really having a very relaxing time here and the weather is certainly making it much easy to just relax and not do too much, I seem to be catching up on some much needed sleep that I seemed to be lacking. Before coming here my sleep had for some reason become so broken and interrupted and I just wasn't sleeping very much at all and when I don't sleep it really starts to affect me both physically and mentally, I'm not sure why it was so bad but I think maybe I had a bit of anxiety leading up to my Papworth appointment? It's hard to really know but sometimes even if I'm not nervous about something it tends to show itself with my sleep and then poor Mark suffers as well because he's sat up with me at 2/3am making me a cup of tea listening to my rather energetic ramblings. So hopefully Mark's actually catching up on some sleep too lol. 

We'll hopefully get out this evening and again tomorrow for a little jaunt somewhere but so far I'm having a very peaceful time :).  


Thursday 1st February

Pinch Punch first of the month people. It is our last full day and we have been to a lovely pub and had lovely lunch, the people here are so friendly but luckily not in that horrid oppressive way when they don't know when enough is enough. I seem to have taken a liking to this ice-cream they have around here, it's chocolate and has chocolate chips in and I just seem to have taken to it, it's like their brand or something and I just really like it. I've just had THREE scoops, which if you know my eating habits at the moment would be hard to eat usually but nope all gone! :-D 

It has been lovely though and just the most relaxing little getaway which has been lovely I think it's something we've needed, just kind of a time to get away and organise things in our minds and decide what it is we need to get done and what we might do in the coming months, reflect a little. I'm still very cautious about organising things months and months in advance the furthest I have planned is August 25th whereby me and Candice are going to see Britney in concert and admittedly I wouldn't normally have planned that far in advance but sometimes you have to because it's not like I can wait till July and expect there to be tickets still. But I get best sister award for best Birthday present whoop! whoop! lol.  

Ultimately though I feel like we're going to be leaving here tomorrow in a lovely place mentally and when we get back we have plans to implement and sort out, personally I want to work on my legs. If I'm going to be like this for a extended period of time I'd like to try and gain some strength in my legs and hopefully it'll make things a bit easier for me and then maybe I can do a bit more for myself and then that in turn will help Mark and make things easier on him. So that's my personal main aim at the moment and we're planning our next adventure which might take more planning than any of our previous trips but it's potentially the most exciting one yet but that also means there might not be another trip for a little while, whilst we figure that one out and pay for it too haha! 


As always, thank-you for reading and chat soon

28.1.18

A REAL catch-up...


Hello my lovely lot. 

I'm here finally. I feel as though I haven't sat down with you [my lovely little space] for so long, and I think mentally I really haven't not for at least 9months or so. I think I got told I couldn't have a second transplant and I just sort of went into a survival mode I guess and I couldn't sit down and verbalise much at all I didn't want to, you talk about all the ins and outs with everyone around you and at the end of the day I just couldn't be bothered to write it out as well and I think a lot of what I wrote would have just been really annoying "Why me?" "It's not fair" blah blah blah... That's not interesting for anyone really is it and it's not like anyone could actually do anything about it anyway. 

So essentially I feel like I've gotten to a point where I'm okay to just relax a bit and chat about it every now and then when I want to give it a go. It's been difficult, life is hard not just sometimes but always and there is never a break even when you try and go on a break, like now for instance Mark and I are 'away' on "holiday' but not the way most people do it. "Holiday" takes some sort of herculean planning on Marks part to get us anywhere and for it to appear easy, it never is! We've managed some amazing trips this year though and they really truly have been amazing, I've loved all of them individually for all there different aspects, I specifically loved Snowdonia just for it's relaxed-ness and Cologne for it's Christmas goodness. I find the city trips we go on can be very busy and exhausting but so worth it but it's why we really try and get a good balance of busy tourist trips and relaxed calm trips. 

I had a clinic appointment this passing Thursday and I think the emotion I feel the most at the moment it confusion and just a sense of befuddlement. I'll explain... 

I'm so confused as to why I am still here. Do not misunderstand me I am utterly overjoyed that I'm still here and planning trips and managing to enjoy life and all it still has to offer me but how is it that I am still here able to do all that?! Last year it really truly felt like 2017 was THE YEAR it was concrete set in my brain 2017 was the year I was probably going to die. I was going to sleep wondering if tonight was the night? Were my parents or Mark going to wake up to a cold lifeless me unaware that I had gone in the course of the night? As the year progressed further and further though it became apparent that i was still maintaining my stability and my decline had slowed to a almost halt. September brought about the arrival of my "rib/muscle issues," they just kept pulling! We now know that they actually might have been lots of mini fractures but every time I had clinic meant I wasn't able to do a lung function because I couldn't take a breathe in to do it properly. So for the past 3/4 months we've been unaware really of how stable I've actually been we've just known I've been plodding along. My clinic appointment on Thursday brought with it my first Lung Function in 4 months and amazingly it was 24% so still not amazing when it comes to numbers but better than September and certainly better than I had been expecting it to be. Numbers wise my weight is stable and actually at a nice healthy level for me which allows me some leeway if  I were to get ill and lose some weight again, my heart rate has managed to settle itself and actually is sitting at more like 110/115bpm now which is wonderful, BP and O2 are doing good and everything is stable which is great. The problem though is ALL of this teeters on a knife edge.

It's a balancing act which we all have to live with because if even one thing decides it wants to bugger up it screws with the rest of it, if I get a minor cold or infection that could be me done for. It's living in constant fear that something might happen. We also live as though each day were our last or try to at least but the question really is how long can some-one realistically live like that? Financially first off, you can't afford to be doing absolutely everything you want to do in life, that would be insane and ultimately make you bankrupt which in my case would be fine if I had a general idea of when I was going to die LOL but you do have to pace yourself or you could end up in a situation where actually you're still alive with no money and that would be a total bummer. Mentally though living as a "dying" person is so difficult! You're exhausted all of the time, everything is difficult;- getting changed, washing yourself, brushing your teeth, putting shoes on, picking things up, bum shuffling up the stairs, doing your make-up [if you can be bothered] just everything is difficult but I feel like I've adjusted somewhat and gotten more used to it but that's only because of the people who surround me, Mark pretty much does everything for me and I would arguably say he has a tougher roll than me. I just wish it was a little easier sometimes and I wish it wasn't such a knife edge that we constantly have to live on. 

I suppose one of the biggest "things" recently has actually been the acquisition of my WIG! Now this is something that makes me sad and excited in equal measure. I'm so bereft at the loss of my hair you really have no idea I won't drone on at you but I refuse to accept statements of "but you're hair is beautiful Stacie" "You can't even tell" "It'll grow back..." All of these will fall on deaf ears with me and won't be acknowledged at all. I'm calling a spade and spade and I am on the road to bald town and it well and truly SUCKS! However my wig is beautiful and I just love her! She looks exactly like my old hair and she really makes me feel like my old self. A lot of people don't even notice when I have her on they think I've just had my hair done. I'm so impressed because I was so worried that it would look like a wig and people would know but she is amazing! We've ordered another wig as well which will be like my "going out" wig and that one is just a lot more styled with curls and the like in it and just looks a bit more fancy. I mean if I have to be bald I'm pleased such things exist to help. 

A New Years aim of mine is to blog more regularly for you guys and I guess this blog is the start of that I feel like we're in a good place, you know where I'm at and we just go forward from here :) 

Love always            

As always, thank-you for reading and chat soon

21.1.18

Stacie on the Road:- "Cologne..."


A "Bucket List" event of mine has always been to visit a classic, traditional German Christmas Market. Now I'm not talking about those lame ones that seem to pop up here in England and have just random things on that are actually British and try and trick you into believing they're from another country, I'm talking about a genuine German Market with mulled wine, traditional german snacks and food, little trinkets and all that type of thing and probably the main thing, IN GERMANY. 

So before Christmas Mark and I headed off to Cologne with the sole aim to visit Christmas markets. I think I can honestly say to date this has been one of my favourite trips that we have done. Firstly we had recently picked up my new Motability Car which meant we had much more room within the car to be able to store the wheelchair more appropriately and pack up the luggage so it wasn't an uncomfortable journey which previous journey's had been due to amount of things we have to take with us which ultimately lead to an uncomfortable ride anywhere. This time however it meant I could recline my chair and actually sleep the majority of the way to Cologne as if I were in bed. The problem being ill is that even travelling in a car can be exhausting and although you aren't doing anything my body is always working away so if I can rest even whilst travelling that means I can make the absolute most out of our trips. This trip we went on the Euro tunnel with the car and then Mark drove about 350miles and I slept through FOUR countries on the way there. Because I had managed to get that sleep on the way there though that meant I didn't need the recovery time that I sometimes need when we get places, so this was a complete and total win on our part, whoop. 

Now we really didn't see all of Cologne as the aim was Christmas Markets and Christmas Market we did! There was 7 markets in total and we managed 5, The Don Cathedral and the Lindt Chocolate museum which I think was pretty good going. The Markets were so beautiful I loved them so much, they had this atmosphere that you just can't get back in England. Everyone seemed so happy to be there and around and everything seemed so authentic (to me at least, the naive foreigner lol). I wanted to buy everything and take it all home with me but I was good and restricted myself. 

Each Market though had a special individual mug for that particular market, so Mark and I made it our special little mission to try and get as many of them as we could. As I said we made it to 5 markets and therefore managed to get 5 of the mugs, that meant Mark had a lot of Mulled Wine lol. We tried lots of food;- bratwurst obviously, a weird potato things that was like a hash brown, pom frites ;-), Crepes, these yummy biscuit things and many other delights. We didn't buy much while we were there but we brought a few cute little things that were more souvenirs a little house that you place incense in which I imagine little German children collecting over the years to build some type of little village which would end up being so beautiful. We brought a tiny wooden shepherd to go with my really tacky little Nativity that I had brought from John Lewis back home, he is so cute though and totally fits in with the little scene. We brought a knitted Fox who I've aptly named Arnold who we have hung in the car, I brought biscuits (YUM), pins to go with my collection and I also managed to buy wooden whistles for my nephews and niece who seemed to love them their mother not so much LOL. 

We also managed to pop into the Cathedral while we were there and it was beautiful, it seemed somewhat on the dark side but still very pretty and very large. We lit candles for a few people as we like to whenever we visit one and although neither of us are religious it still feels important to acknowledge those that are important. 

Whist on our Market hunt, one of the last Markets we visited was next to the Lindt Chocolate Museum and being the chocolate enthusiast that we all know I am we had to check it out. It was a cute little museum I think me and Mark thought that there could have been more but it was still fun to check out. I really enjoyed seeing the past packaging although it really annoyed me because "back in the day" they seemed to make this real effort with the packaging of everything because it was such a desired thing and quite hard to get a hold of it was a luxury and certainly not an everyday thing so they packaged it to look like this royal gift and they really did just look utterly amazing. I want that for us nowadays but I know that we're so spoilt now that, that clearly wouldn't and couldn't happen. I yearn for a galaxy bar to appear in a silk laden box with gold and bows and frills..... [Longingly stares at the ceiling.] They really were quite incredible and beautiful. 

Overall though our stay and visit to Cologne was so lovely and I absolutely loved it! I kind of want Christmas Markets to become a tradition for us and if I happen to be alive by Christmas I hope we can go to another because I really did enjoy it so much.    
    





As always, thank-you for reading and chat soon