16.7.18

Surviving Summer...


Surviving Summer.... Basically I'm not, lol. 

Okay so I am obviously surviving to an extent otherwise how the hell am I writing this? It is certainly hard work though. Britain just is not made for heatwaves and neither are the people that inhabit the place and then add in a chronic/terminal illness and really there just is NO coping whatsoever. As I have mentioned on many a occasion I don't ever complain about colder weather because it then gives me the right to complain when this happens and boy have I been complaining but not just for the sake of complaining because I just really cannot cope with this weather and I'm finding it so, so difficult daily. 

I am trying though and Mark is really helping even though he is finding this weather just as difficult to deal with. Unfortunately one of my drugs has a side affect of excessive sweating and it just so happens for me that seems to all come out of my head, so any photos of me at the moment are literally of me with my hair up because when it's down it just looks like I've washed it it's that wet, it's gross! So any photos with my hair down are usually a selfie and probably just after I've washed it and it hasn't had a chance to get sweaty wet yet LOL. I'm trying to smile my way through this but I genuinely am finding this weather so difficult, moving around just gets me out of puff and I'm so tired all of the time and all I want to do is sleep. I know I have chronic fatigue but this is just a level of tired I have never experienced before in my life. 

I had clinic on June 28th, so a couple of Thursdays a go and I didn't get the best news. I've been putting a lot of why I'm finding things so difficult down to the weather and of course it is definitely playing a big part in my coping at the moment but I had a CT scan which I'm really pleased they decided to do but the CT scan showed a few things which aren't unexpected especially with the Chronic Rejection. So I was told I have a small Pneumothorax (posh medical language, look at me Oooo lol), which for those not in the know is just a small pocket of air in my lung or commonly known as a collapsed lung. However in me it is just a very small pocket at the top of my right lung that we can leave be as it would probably cause more drama to fiddle with it. We looked at my CT from last March next to this one and the comparison is really quite obvious there is much more scaring in the lungs, infection is swarming the place and although my Aspergillious cavity is smaller it is however right next to the wall now and full of crap. My Dr asked if I was in a particular pain in my chest of which I can't say I am but I do take a heck of a lot of morphine painkillers so potentially wouldn't know anyway but apparently the fact that my aspergillious cavity is pretty much on my lung wall means I should be in quite severe pain from it... At least that means my pain meds are doing their job hey?! LOL 

So basically I have deteriorated, whoop. I'm okay about it though as it has been TWO years since I was diagnosed with Chronic Rejection and it would be stupid to think I could go on forever without at least a little bit of deterioration. I think sometimes though people think that when I say I'm stable that, that is a good thing and the thing is it is but it isn't as well. Yes to be stable is good but I think people forget that I'm stable at a extremely LOW level of health therefore I'm still battling things that normal people would consider awful and probably wouldn't be categorising them as being stable. I guess stable is just my word for people to say I'm not worse but still battling on. 

I think whilst this weather continues I would not consider myself stable at all as I'm also still battling a infection which drs have decided is going nowhere so now I just have to measure my level of coping with it, so when it gets too much I will opt to go on IV's which probably won't get rid of it but may dampen it down enough that we can control it but once again I have to be really careful that I don't go on the IV's just willy nilly as my body will get too used to them and there is no alternative after them. So persevering for the moment. I am sure though that once this weather cools a bit I will be coping much better. In the mean time though I'm basically living in front of our Dyson fan which is already worth its weight in gold!    

As always, thank-you for reading and chat soon

30.6.18

Gathering Frustration...


Okay so I'm not a moaner I never have been not really and if I do/have moaned then there's usually a very good reason for it. I know some of you reading this will be wondering why there has been a severe lack of blogposts on my part over the past say 9 months (estimate.) I just haven't been able to express myself to you guys fully I suppose, or maybe that's wrong to say I  know what I want to say a lot of the time and things I want to talk about but it would just appear like I'm moaning and I don't just want to moan at you that's not who I am but my situation certainly brings out that side in me sometimes. At the moment this is what I need and i guess I'm just pre-warning you that this post could appear moany so if you aren't up for that today then carry on no further. 

I sometimes tell myself off when I feel a little sorry for myself because there's part of me that thinks I should have no right to complain at my situation because I am still alive albeit living with Chronic Rejection and I did get my transplant so what do I have to complain about? Well I've decided I have every right to moan because you know what my life on the daily is bloody hard work! 

- I live in constant pain.
- I wake up everyday feeling sick.
- I'm on constant pain medication.
- I'm on a strict regime of pills, nebulisers and physio.
- Walking more than 10 metres is near impossible without having to sit down and rest.
- I'm coughing so much phlegm it's disgusting. 
- I have no energy and constantly need a nap.
- Doing something as simple as brushing my teeth, getting changed, bathing, brushing my hair makes me out of breath.
- I now need a wheelchair whenever I'm outside. 
- I currently have stomach issues that nobody can figure out and don't seem that inclined to either.
- Most recently I have a infection that doctors seem to have decided isn't an infection and just "normal" phlegm [roll your eyes here.]

Okay so there's a few of the things I deal with on a daily basis and these by no mean, means I don't enjoy my life, I DO! I really do. Mark goes above and beyond when it comes to making life fun and enjoyable for me and we really do some fun trips like to Edinburgh, Cornwall, Paris, Rotterdam, The Lake District and so on, lovely days out and even just a trip to a lovely pub garden for a drink, or a cafe for a cup of tea is nice for me but that's the thing sometimes those things are made impossible by my body. Sometimes we book things which we then have to cancel because I'm too ill or we'll be on a trip and I'll get poorly whilst we're there and therefore the trip becomes more about resting where ever we're staying. 

I guess my frustration has built up and come to a bit of head this week because I had a urgent clinic on Thursday because I have my lung infection back after having only been on IV's 4 weeks ago and in combination with this horribly humid weather my breathing has been getting worse and I've been sleeping A LOT. Now I admire Papworth and my Doctors for everything they've done for me and still continue to do for me but I felt somewhat swept to one side on Thursday. I felt like I was telling them how hard I was finding things and all I was really getting was "There's only so much we can do..." and I totally understand in my situation there is only so much they can do but I wasn't asking for them to make me "better" because we all know that's impossible but I got the impression that, that was what they thought I was asking for. I wasn't. I just want this infection to go away to feel how I felt pre infection of 6 weeks ago I wasn't asking for miracles. We all know that with this Chronic Rejection stability is the vital thing and whilst I have this infection I don't feel stable and that is unnerving for me and when one of your doctors decides to state the stat that even if the transplant had gone as planned the average life expectancy is still only 5 years, I'm not naive I am fully aware of this fact but it's not something you need reminding of when you've just hit your 3 year transplant anniversary, tact comes to mind. 

At my clinic they also decided to tell me that they didn't actually think it was an infection and possibly just inflammation in my lungs and I understand where they are coming from because it's hard to justify putting me on further IV's when my body doesn't seem to present in the normal ways, my x-rays never show anything, they never hear anything on my chest even though I'm coughing up tonnes of green phlegm, my O2 sats are always normal and everything would "appear" to be fine. That's the way I have always been though, I never get temperatures even when I had sepsis I didn't get a temperature until they put me on antibiotics to treat it, I put 12 kilos of fluid on without anyone noticing because it just didn't appear anywhere on my body, Doctors NEVER hear anything on my chest ever! For as long as doctors have been listening to my chest they never hear anything. I guess what I'm saying is I'm worried that by disregarding my infection and deciding to treat it less severely than an infection that it might lead to worse things. 

We didn't leave clinic completely deflated though we aired our worries and I certainly feel like they listen to me and always allow me to air my concerns and certainly take them on board too and we did leave with a "treatment plan" to try and help which I felt better about and I also do understand we can't just stick me on IV's willy nilly as my body could get too used to them so I am happy to give this a go. I just sometimes get the impression that they did the transplant and the whole chronic rejection thing is just a bit of a hassle for them I think we're all still surprised I'm still here but here I am and therefore it looks like they're going to have to continue to deal with me and my odd and strange body. 

I'm trying my best though, I am resting thoroughly, I'm doing my meds and treatments religiously and hopefully soon I'll find it's a making a difference as long as I can clear what's on my chest and I think once the weather changes and cools a bit I'll be able to cope better :). 

As always, thank-you for reading and chat soon

9.6.18

Stacie on the road:- "Cornish Adventure..."

St Moritz - Polzeath, Cornwall


After Mark and my Edinburgh trip we decided a relaxed trip was very much in need especially with our current goings on in life (also the reason for lack of blogs, sorry!) So we decided Cornwall might be a lovely way to go and I was fortunate enough that I happened across The St Moritz hotel on Instagram, someone I follow happened to be staying there and I just thought it look amazing and the area looked so peaceful and so relaxing so that was that we had to stay there. 

I wasn't quite prepared for how lovely the hotel was going to be or quite how accommodating for our needs it would be. As a disabled/terminally ill person finding hotels that have EVERYTHING you require is virtually impossible, there is almost always something missing and usually you just have to accept that that is the case, well not here. The St Moritz was utterly amazing; we had a suite, it had a kitchen, a living/dining area, a conservatory, a patio, a great sized double bedroom and fully accessible bathroom. Every corner of that suite was accessible to my wheelchair! They even had a hoist if that was a requirement of mine which it could possibly be for future stays as I get worse as it led from Bath, toilet to bed which I thought really was great!


There really is nothing about our room that I think could have been improved on and I genuinely never thought we'd find a room that could do that because there is always something, you know, there is always something and whether that sounds pessimistic to you then fine but in our experience there really is always something missing but not here. 


Our stay was lovely though, unfortunately I was quite poorly during this trip which was completely unexpected but having such a beautiful and comfortable place to stay really made the trip so enjoyable, I booked myself in for a Manicure and Pedicure and Mark used their Pool and spa facilities. It was quite lovely to have a Mani-Pedi as it really is one of those things that takes a side seat when you're poorly as you're so focused on just pills, doctors, appointments, and just generally keeping up with other things in life that aren't your nails lol. The staff were second to none as well they were just so friendly and accommodating but not in that annoying on top of you way and you didn't feel uncomfortable asking for something if you needed anything. It really was just a amazing experience for a hotel and me and Mark very rarely say we'll go back to a specific hotel but we've actually already decided we'll be making a return visit at some point this year, we really did love it that much. 

Padstow - Cornwall


Padstow we only spent the day and we definitely need longer than a day really but we actually found we really loved it here. So many people said to us that we had to visit Padstow and that we had to go here or there whilst we were there. Now I'm one of those people that if too many people are saying something is great it probably isn't that great if you know what I mean? A bit like "The Walking Dead" or those really horrendous critically acclaimed films that are actually crap and shouldn't be winning anything. So I worried people were hyping up Padstow and I'd actually be super disappointed, I wasn't thankfully.


Mark and I really did have a wonderful walk along their bike trail which we plan on doing more of next time and actually might hire out a bike with a bit for me to sit in :-D. We went in some of the shops and had a general wonder of the harbour and took note of the restaurants and place we had to come back to see. One thing we did do whilst we were there was try out Rick Steins fish and chips and I'm going to be completely honest with you all and say, I wasn't impressed..... I'm sorry guys! I just wasn't I had cod bites and chips and although the cod bites were lovely the chips just didn't live up to expectation. We actually have a fish and chip place here in Norwich that I regard much more highly, "Grosvenor Fish Bar" absolutely amazing fish and chips in my opinion :-/. That being said however he did have some amazing ice-cream which was really yummy!

We got really lucky with weather this day and spent our whole day just having a lovely time and we can't wait to make a return. The weather has however led to my current downfall (to be revealed...)

Fistral Beach Hotel and Spa - Newquay, Cornwall


Next stop was our next hotel which was Fistral Beach hotel and spa. Now this was also a lovely hotel but you know how I said there's usually always something missing when you're of the disabled variety? Well this is a prime example. As lovely as hotels are and can be they can be let down by their lack of thought when it comes to someone with accessible needs. Firstly it was like an obstacle course or marathon length to get to the reception in the first place when having a simple ramp would have been ample enough but no you had to go through two restaurant areas, actually past the reception, up past their toilets and past their spa area, back through the bar area and finally you were at the reception area. All credit to them though their check in service was lovely with a lovely complimentary drink that was quite tasty. 


Now I completely understand that all hotel rooms aren't going to be like the St Moritz so the Fistral Beach hotel did have quite a lovely room with a lovely bathroom and its defining feature was certainly it's view. Mark and I  always enjoy a lovely sea view and we love waking up to the sound of the sea and just being able to see it from your room so it was definitely worth it for that. MY only annoyance I suppose was having steps up to the room, they were only two but I really feel for any guest who is disabled who physically is incapable of walking at all luckily I can at least combat two steps. 

Here is where I discovered my sunburn :-/ and not just 'ye olde' regular sunburn, actual great big old blistering sun burn. Mark and I weren't even in the sun for that long whilst in Padstow but my knees were exposed and due to my severely immunosuppressed immune system when I get sunburnt I REALLY get sunburnt! I have been in agony for days now but, we're dealing with it. Lots of Aloe Vera Gel at the moment :-). It didn't stop us getting out though, with the disappointment of Rick Stein's in Padstow we decided instead to give "The Fish House" next door which is by the chef who actually studied under Rick Stein for 15years. Now this was much better or maybe it was because we didn't really have any expectations but I had a 'Fish Finger sandwich,' Mark had a Seabass wrap and we shared bread and squid. It was Soooo Yummy!!! 


Although Mark and I had brought my off road wheelchair with us and had been using it we actually decided that to get on the beach we should give their accessible wheelchair a go and see how it compared to our one. Bare in mind they are different as in technically the wheels especially. Our wheels are more like bike wheels whereas as you can see in the picture these are more round and bouncy like, wheels with a greater surface area. Now as a passenger I feel safer in our chair but not dangerously unsafe in this one. Mark says they both have their pros and cons. Our wheelchair isn't amazing with the softer sand but can combat it whereas this chair gets over the softer sand more easily probably because of the wider tyres. However on the harder, wetter sand our chair is much better although this one still does the job. Both however still require a bit of a push if you're going uphill on soft sand so may require a strong surfer guy to help out lol. 

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Overall our trip really was lovely even though I was quite poorly throughout I did find that I really did like Cornwall a lot! I spent a lot of my childhood in Devon so know I love that kind of area anyway but to experience it as an adult is lovely. I know our trips are always slightly marred by my illness but we still manage it regardless of that. People do sort of seem to see the holidays and I wonder whether they think they are easy? I hope not in a sense because Mark really goes out of his way to plan our trips to a T so that if anything really does occur and go wrong we're in a position that we can cope with it and get it sorted. There is so much planning and sometimes stress behind our trips before we actually go on them and I guess we don't show that side of things very often and that is also why it is so important for us to have a nice place to stay that accommodates to our needs because sometimes if I do get poorly that is predominately where we'll be staying and you certainly don't want somewhere dreary and dower if you're going to be ill. 

We really can't thank the St Moritz enough though for being so accommodating and providing us with our first hotel ever that we actually will be returning to! :-)

As always, thank-you for reading and chat soon

8.4.18

Subscriptions...

Hello my beautiful people! So okay I realise it has been sometime since I've blogged, I apologise profusely, you see it's not my fault! A kitten is very time consuming.... in that I just stare at him and lay him all day, it's his fault really :-D Hey I'm here though and I'm doing a blog that I've wanted to do for a very long time and it is my Subscriptions boxes blog!! I'm a great believer in treating oneself, it may sound self indulgent and it kind of is but I think that's okay and certainly mandatory sometimes. 

Personally I have THREE Subscription boxes that I subscribe to, I know, "three?!" I hear you cry well yes three. They are all different and all serve a different purpose but I love each of them equally and they really are like getting special surprise gifts from myself as I don't know what's coming. So here are MY subscription boxes... 

Birchbox


Now Birchbox is my second subscription service I ever purchased, "where's your first?" you ask, well my first was glossy box but i switched to Birchbox just out of preference. Birchbox is a beauty box which sends 5 items monthly which are catered to you and what you need which they figure out from a little survey you take when you sign up. They send make-up, skin care products, bathroom things, makeup tools, all sorts which are lovely items to discover and try out. There are regularly themes to the boxes and they have some really lovely designs of the boxes too as they team up with designers who do some lovely work. I think my favourite part and this is kind of lame is that their boxes are little drawers and because of how beautiful the boxes are i've ket them all and use them as storage!

I absolutely love Birchbox and I think the fact I have been a member for nearly 8 months demonstrates that love. 

£12.95 --> Birchbox

Papergang


Papergang I have been getting since January and really love it, if you aren't into stationary, this probably isn't one for you but I do and it really provides for my scrapbooking too. March saw them go in a different direction with a tube which i actually quite liked and I really loved the print that came with it. Papergang team up with a different designers/illustrators each month and provide some really unique and quirky bits which also introduce you to some really lovely new designs and designers to get into and buy from. 

£10.95 --> Papergang
Buddy Box


Buddy Box is great! Now Buddy Box stems from a foundation by the name of "The Blurt Foundation" they seem like a lovely foundations who's main aim is to help people through bad times be that with depression, anxiety all that type of stuff and essentially what Buddy Box is, is a hug in box every month. They want to make you happy! It is basically a box of positivity which i love exploring through and they always have a theme, this months being "One Step at a Time" and thy have cute little illustrations to accompany them and everything is just catered to make you smile I think. 

I really advise this one for anyone that really just needs a happy boost or a bit of a self confidence boost. 

£21.50 --> Buddy Box

As always, thank-you for reading and chat soon

26.2.18

We got a cat... kitten (yep there’s a difference) 

Photo credit: Mark Watson
Yep that’s right people! We got a little tiny, itty bitty kitten. His name is Marzuki (Marks choice, inspiration from one of his favourite musicians), he is a half Ragdoll half British Shorthair and was born on the 25th December 2017 so is a mere 9 weeks old! The fact that he is 50/50 from two different pedigree parents doesn’t actually mean he himself is a pedigree he just happens to have them as parents and they made him and his little bros and sisters. Little Marzuki is the runt of his litter and it’s basically like a match made in heaven I think. 

What led to the arrival of Marzuki I hear you ask? Especially when Mark is allergic to animal fur, I’m dying and won’t out live my own cat, we travel, so on and so on... Well let me tell you it hasn’t been a easy or quick decision AT ALL! We’ve been towing and throwing with the idea for a good 6 months at the VERY least. We all know I love cats! They are a part of my soul they make everything better I’m that odd girl that says “who needs children when you can have cats?!” And I get that look of disgust from people who have children who can’t believe I’m even comparing that ‘miracle of life’ that THEY produced, who’s probably some little shit that deserves no dessert, to an animal that in their opinion may as well be trash. I’ve been joking around for absolutely ages and actually probably since I’ve been with Mark that we should get a cat always with the response of not a chance which I’ve always accepted and that’s always been totally fine. Mark is allergic to animal fur not so much so that if he touches one he’ll balloon or his airways will lock just in the way that he uses his inhaler a lot more around animals and if he’s touched them becomes itchy and it just means a immediate wash of clothing occurs when we return home. I’ve never pushed the issue, I do however show mark A LOT of cat videos on Instagram, Facebook and Twitter kind of on a constant irritating level. So Mark one day suggested that it might be something we could do... that was until my cat Alfie decided to do a disappearing act on us and was gone for quite some time luckily my father found him (my dad’s uh-mazing at finding our lost cats I don’t know how but he just has a amazing ability to draw them out of hidey holes and calm them enough that they want to come home). Alfie’s disappearing act scared us both but definitely put Mark on the back burner to wanting any pet. I still was constantly looking at cat videos as I do and Mark started looking at the cats that were for sale again. We then came across a few kittens that we just loved Marzuki’s litter being the main contender and the thing with kittens is for some reason they sell really fast so if we were going to have him we had to make a decision pretty tout suite and that’s when we decided on Feb 13th. We were really taken with Marzuki he was so cute from his picture and I’ve never actually had a ginger cat before so I thought why not now and we decided we had to have him. We couldn’t collect him until the following Monday but thankfully that gave us time to get everything that we needed to prepare for his arrival! 

It’s been quite a long time since I’ve been in a pet store really, it’s been years since my Alfie and Ollie have been interested in cat toys and all cat food tends to be brought from supermarkets. Mark and I traipsed our way into several different pet stores only to be bombarded by a million varieties of litters and pet foods. We had to consider the pros and cons of grain vs non grain, dry diet or wet diet or both or whether he even liked wet or dry food. We had to buy A LOT of toys because we don’t know what he currently likes so mice, balls, a flamingo, a duck, ball tower, scratch boxes, carpets, simple box, many blankets, a tunnel! We brought a lot. 

Monday arrived and I honestly have never been so nervous and excited at the same time. I’ve never had to be responsible for a little life before I mean I’ve had cats but they’ve always been family pets so all I’ve ever had to provide is the love really. Little Marzuki needs me to give him love, play, food, water, when Mark’s not around I have to deal with his bodily functions, clean his little face when he’s all covered in food and his little feeties when he accidentally steps in his poopies! It’s VERY daunting! 

We’ve had him a week now and he is just the cutest thing he seems to have taken to us really quickly we’re having a few teething problems just with litter training, he knows exactly where the litter tray is but when he first got here literally within minutes he had a little accident in a corner so now he can sometimes be confused as to if he’s allowed to go there or not. So lots of positive reinforcement is happening and he never gets shouted at and is constantly given much love! He’s been to the vets already and he’s doing good, he’s a little underweight but that’s because he was the runt of his litter so me and Mark are very focused on getting the best food for him and making sure he’s eating enough so when he goes back he’ll have put a chunky bit of weight on. We also found that he has ear mites which is really annoying for him, I had noticed he was itching his ears a lot so was adamant the vet check them I was like a over zealous mother when we went into the vets appointment room... “I really think he might have something up with his ears, can you please give them a check” like the poor woman wouldn’t have checked them anyway haha! Apparently they’re super common in kittens and happen more often than they don’t because they have low immune systems. So me and Mark have our first proper parental duty and have to give him ear drops daily and cotton wool his little ears. It’s not something he enjoys but he’s already itching less so it’s obviously doing the trick. He really didn’t enjoy his carry cage on the way home from the vets he had just been jabbed by the eat and fiddled with so who could blame him so he got a nice snuggly ride with me on the way back :-). 

I personally think we’re doing quite well especially considering who we are as people. We both love him so much already Marzuki certainly helps me, I worry for his well being more than my own so I don’t overly analyse things when I feel dodgy or a bit unwell I’m more focused on what Marzuki is doing and how he is and whether he’s alright. I do however fear we’ve just added extra responsibility for Mark which isn’t something we ideally want but I think the benefits of Marzuki hopefully outweigh that addition. 

Luckily getting Marzuki as a kitten as well is great as it means Marks allergies can adjust to him and hopefully won’t be severe. We’ve also got a “Cat Hotel” that we’ll be using for when we go on longer trips which actually probably costs more than our actual hotels we stay in haha!! 

I’ll keep you all updated on Marzuki’s progress as we go. It if you do want more timely updates he has his very own little Instagram @marzukicat for those that are intrigued :-) 

As always, thank-you for reading and chat soon

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