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