14.11.17

Stacie on the Road:- “The Fat Duck...” 


I know guys this post is far too late really and should have been posted a week ago but you know things happen, I've been poorly and basically just a bit lazy I'll admit. 

Right so where to begin? Well we all know I've been trying to do and accomplish as many things as I can and on my list of things to do was "The Fat Duck." The Fat Duck is Heston Bulmenthals restaurant located in the lovely Berkshire and is more of a dining experience than just a meal at a restaurant. The reason it's more a bucket list type of event is firstly the price at £275 per person so it's a lot of money for what is essentially a meal but it's also a bucket list type event because for me it really is only something you do specially. Heston's restaurant only sits 42 people so very intimate and is always booked a year or more in advance so I really never thought I'd be able to actually get in and experience it. My amazing human however managed to sweet talk his way in and fortunately they were able to fit us in and gave us two date options and we decided November 3rd worked out perfectly as it was the day before we were to head off to Holland. 

In the lead up to going we had communication with the restaurant and they had questions about us and things we liked and generally just little bits about us which we later found out was essential to the meal and the journey we were about to partake within The Fat Duck.

The Fat Duck is located in a little village and it's all very quiet and cute and Mark and I actually had trouble locating the actual restaurant as it's very well blended in with it's surroundings, extremely inconspicuous and felt a little bit like heading into a secret place and it continued to feel that way when you stepped through the door, all four walls were mirrored and you couldn't see a restaurant at all just a person waiting for your arrival, it all felt a little mysterious. They slide the back wall aside and you were greeted by a small chatter of people and a cosy room, it all looked lovely. 

I think I could walk you through each and every course but that would make this blog about a billion hours long or at least the 4 hours it took to eat it all LOL so a summary is what you shall receive. I'm going to preface this with a confession, I am a fussy eater... Now there will be those reading this going "What?! Then why the hell would you want to go to Hestons?" and I will tell you why people; because I wanted the experience it's something that looked so fantastic and ultimately I thought I could potentially expand my culinary horizons and try new things and maybe even find things I enjoy. It really was all about the fun and the ultimate and overall experience for me and it was something different for us to do. Expensive... yes! But for me I thought it was going to be worth it and I really think it was!  

The courses, there was 16! Yes 16! The first being for me a mojito puff ball that was nitrated and was actually lovely and really was a wonderful palate cleanser so I thought "Oh Yay, I might actually like some of this stuff!" but then the next was a beetroot and horseradish ball of nothing that tasted icky so my initial hopes were dashed quite swiftly lol. We had dishes that literally tasted of the Sea with music to listen to. Breakfast where you didn't have to choose between a cooked breakfast or cereal and with this came boxes with games and things to assemble. We had tea that was both hot and cold and made my mouth feel weird, continuous fish just a lot of fish. By course 7 both Mark and I were craving meat! Where the hell was our meat?! We got a forestry of mushrooms which was a bit like meat and is the first time in my life that I've actually eaten mushrooms willingly and then I discovered bugs and that put me right off lol. We did finally get Duck though and that was lovely!!! The most disgusting thing I ate though was a crab ice-cream even Mark didn't like it, it really was horrendous. Throughout this though we were presented with a postcard from our recent adventure to Snowdon, a little handmade booklet which told us their favourite afternoon tea spots in the UK, I got to find a Unicorn within the forest and at the very end they presented me with my very own homemade McDonalds strawberry sundae and it was amazing! 

They really try to involve you on the journey the whole meal, you have your own story teller and all the little magical elements to it to make the meal interactive and fun and even though I liked very little of the food I knew what I was letting myself in for and what I was going for and I did myself proud and actually tried EVERYTHING! I made sure I tried absolutely everything and that is something that never happens. Finally though I had the famous snail porridge and guys it really was actually GOOD snails don't taste bad! I would have eaten it all but unfortunately one of the snails I ate had a bit of grit in it (as if you missed a bit off a potato when cleaning it) and that just reminded me what I was eating and from that point it was just in brain then. 

I personally think it's something worth going to do but I do understand that it's a lot of money for an experience and especially if you aren't into that type of food but if you can and have that type of spare cash then go for it because it really is a one time thing. It was a great day to have before we headed to Holland....


As always, thank-you for reading and chat soon

24.10.17

Appreciation...


Good morning my lovely people. I am currently mid way through my morning drug routine it tends to last between 7am and 10am it's a very long drawn out process which doesn't allow me much room to do much else other than watch tv, read a book, colour or as I am currently doing type between drug regimes. Also the amount of Pain medication I have been on lately has meant I haven't been able to focus on much at all; I'm so drowsy constantly in and out of sleep and definitely in the morning I can really literally only concentrate on doing my medication and getting that right. You need only ask my nearest and dearest how out of it I am in the morning because Mark receives texts from me which make absolutely NO sense whatsoever and he gets a text from me about an hour later saying "Sorry haven't got a clue what I was actually trying to say" because in my mind it makes absolute and total sense when I'm typing it or saying it and then I can realise really quickly or hours later that actually, no, it makes no sense whatsoever or the dream I'm talking about actually wasn't real and whoever I'm talking to really doesn't remember or have a clue what I'm talking about because it in fact hasn't happened. Haha. It's really been a bit of an odd time for me but at least we're getting through it with a smile or at least most of the time anyway. This morning however as I said there really isn't much time to do too much before I have to do the next medication related thing so I've been just skimming through my most recent photos that I've taken and just generally reflecting on life in general. 

Now yesterday I was particularly lazy not because I was more poorly than usual, not because I had something to save my energy for, not because I was more upset or "depressed" than usual but simply because I was in a lazy mood. I just really had zero motivation at all yesterday and I was totally alone in my house so I thought "Hey why the hell can't I just do absolutely nothing?!" My cat was totally receptive to the plan and seemed to be in cahoots with me as he literally did not leave me alone all day we had the most fabulous day doing sweet FA. However this morning I did wake up and have felt a little guilty because yesterday I did have all these plans to do loads of little bits and bobs that I have been putting off for a little while and I've done none of them really, although I have made a fair bit of headway with my christmas shopping which I'm fairly chuffed with as I find that really hard to do nowadays as I can't surprise people like I used to because I always have someone around. Whilst I was looking through my photos on my phone however I was looking through them and I gave myself a bit of a talking to because I shouldn't feel guilty for having a lazy day and in fact I need to remember that I am ill. I'm not 'I have a cold' ill I am... heading towards the end of my days, chronically and painfully ill... I should be surprised that I don't spend each and everyday asleep 24/7. Okay I do spend a lot of time in my pjs and I think that's okay, I love my pjs I spend a lot of money on decent quality, comfy, good looking pjs and I don't mind spending a extended amount of time in them. If I'm going to venture out of the house of course I'll change into actual clothes but if I'm in the house I'll change from one set of pjs to another and I genuinely think in my situation that is completely fine especially as getting changed in itself is a massive effort for me. I need to remember not to berate myself for a lazy day or feel guilty for it because I am dying and at the end of the day I should really be able to do what the hell I like and if that is a day in bed asleep with my cat then what can it hurt? 

Looking back on my photos provided a bit of clarity for me though because I'm there going through them and looking at all this stuff I've been doing this year and it amazes me. I have been doing so, so much even in the state I'm in and I can't quite believe it. I can't speak for Mark but me, I am just having the time of my life with him, we have so much fun and are having so much fun doing all these things on my bucket list of things and although I have to go through some absolutely awful days sometimes, they are so worth it for the good days. I know most of the stuff that Mark and I do together looks amazing and it really is but I also know how stressful it is organising a lot of it and how much effort, research, planning and organising can go into it to make it as stress free, as anxiety free and just as easy as possible for me and that's a big weight for Mark to have on his shoulders. Hopefully however all of that is so worth it for all the amazing trips and days we've been experiencing. We really are making the absolute most of our time together. 

The next couple of months is going to be super exciting. Now with the new wheelchair our horizons have widened and we will be taking advantage of that as long as I stay stable *Fingers crossed.* I won't say everything we're up to over the next couple of months because I'm a superstitious person and if I get too excited about something and start shouting from the rooftops all this stuff we have planned I just know something will happen and we'll end up having to cancel it like we've had to in the past. However I can say that we're off to have a 12 course dining experience at the "Fat Duck" which if you don't know is Heston Blumenthal's restaurant, if you're not into chefs or cooking or whatever this probably means very little to you, this is something I have wanted to do for SO, SO long and I am the most excited person ever that I get to do it and then me and Mark will be popping off to Holland for a little bit so they are a few things we are doing in the very near future.

Basically I need to remember that lazy days are okay especially if I want to do these amazing days. You sometimes forget that sleep and rest is a form of medication and maybe it's not prescribed but it does just as much as a pill does maybe even more as it helps you restore physically and mentally and allows you time to just relax, chill out and reflect and that can be a great thing.     

As always, thank-you for reading and chat soon

2.10.17

Stacie on the Road:- The wheelchair test...


Hello my beautiful people! Do we remember back in June/July how I was a stressed out mess? Yeah? And we all remember that was because we were fundraising for me to be able to get a multi terrain wheelchair? Then ultimately all that stress and hard work put in by everyone was totally worth it because we totally went and did it and raised enough money not only to get me my chair but for us to get two other chairs and raise a little money for "Special Olympics Norfolk" all at the same time. I can quite honestly say it was a very stressful experience and one I would only redo if I felt as passionate about the cause as I did this time but it was a experience and one I'm glad I got to experience. Well we finally got my chair!!! All made up to my specifications and everything in the green colour I wanted and me and Mark have a few personalisations we want to add to it but they will happen probably when we get the other two chairs, but we have it and it's beautiful! 


SO we really wanted to get out and test her. We went for fairly easy terrain to begin with so we went to a place called Whitwell at an old railway station. The walk is a perfect Sunday afternoon stroll kind of a walk, if you can walk that is, and little bit bumpy/muddy here and there so nothing too difficult but certainly still a walk that my normal wheelchair would find very, very difficult to navigate and would ultimately get stuck several times if not every few minutes. The chair did fantastic! I know very little about suspension or tyres or any of that kind of stuff but whatever makes the wheelchair do what it does I applaud the mechanics of it. It felt like a stroll, very little jiggling up and down at all I didn't feel jostled or manhandled in the way you can do in a wheelchair sometimes. In a normal wheelchair on normal terrain I can feel more jostled and with jostling comes chest pains and what feels like you've just done a workout. This means I get more energy to have for eating, talking, just generally which is so amazing!


Test two is one I have been dying to do for about a year, Holkham Beach, as I explained to people Holkham beach is one of the first places me and Mark went together as a "couple" and we always sort of meant to go back in that first year whilst I was well but we just had other things that I hadn't seen or done yet that took priority for us and then when we finally took the time to get back out there I was ill and wheelchair bound and Holkham really isn't the most accessible beach or at least it could be with a few adjustments but for right now you just definitely need the right set of wheels to get on it.  


We weren't too sure how the chair would cope because the tyres although much much better than an average normal wheelchairs they are still small with a small surface area compared with actual beach wheelchairs that have blow up wheels and specialised functions on them. She did it though; she doesn't do too well with the really soft sand and does require a bit more of a push but she can still handle it really nicely and allows you to get on a beach. Once you hit harder sand it's pedal to the metal, all a go go. It was so lovely to be back on that beach though it was kind of a full circle feeling for me a bit like "screw you Chronic Rejection just because I'm dying doesn't mean I can't still do the things I was planning to do when I was well.' Clearly it is all a billion times more difficult and takes so much planning now, we can't just jump in a car and off we go but my amazing human continues to go way above and beyond with everything I don't know how he keeps his cool with it all sometimes. 


So results so far? I am the most impressed person ever! I really, really am and I can't wait for other people to get to use them as well when we get them. Ultimately a wheelchair isn't going to cure someone of their terminal, chronic, life limiting illness but if something like this can just make things a little bit easier for someone I think it's well worth it. I can't even tell you how exhausting wheeling over cobbles can be... honestly it is so tiring for someone in my position, yes I may not be walking but the jostling that occurs in a normal wheelchair is like a workout for people like me which as you can imagine results in fatigue and usually a lot of pain which can take the joy out of it for you and ultimately tends to result in a day being cut short. So switch the chair and there you go, you're removing that jostling factor which in turn removes all those side affects and just getting to enjoy things more. It really is a wonderful piece of kit? machinery?  

WHEELCHAIR SUCCESS!!! So Watch this space for my "Stacie on the Road" adventures, there's some good'uns occurring!

As always, thank-you for reading and chat soon

17.9.17

Removed...


Firstly I'd like to clarify this blog post by first saying how much I love my life, have loved the life I have had and plan to continue to love the life I continue to lead but this may come across a bit moany and I do understand that and I hope that you will be able to look past that and not see it as a moan but as more of a reflection for myself and where I am/was with myself at this point in my life.  

Lately I have felt somewhat removed from people, things, events, life in general I suppose. I enjoyed mine and Marks getaway to Snowdonia so much because it was like I was legitimately removing myself from everything and getting away from everything and it was accepted because it was a "holiday." You're 'allowed' to remove yourself from society and the world as long as it's under the guise of relaxation and holidaying, when you're dying and don't want to interact with the people or things or just simple want a mental break from it all, that's seen as retreating in on yourself, you're becoming depressed, are you really okay? You're not yourself anymore... blah blah blah and so on. 

I am becoming slightly removed from the world and I know that I am, I am in no way going to apologise for it because I go through my phases and this is a phase, I'm unsure as to how long it will last but for now it doesn't mean I'm depressed or sad it just means really that I'm unable to deal with seeing other peoples problems. Selfishly at the moment I'm only just about dealing with mine and they actually aren't nearly as bad as they could be. I was looking back on my photos on my phone today, you know sorting through double photos and accidental photos that really didn't need to be there all that stuff and this time last year everything was terribly and horrifically frightening for me, I knew nothing everything was a mystery and I was under the impression I may die at any moment, it was an extremely scary time for me. Only 6 weeks before that I was riding a exercise bike in my bedroom trying to get my lung function up a bit. It's really quite incredible to watch my decline through the camera roll on my phone, amazing and so utterly devastating at the same time. 

I've lost so much in the past 14/15 months from Lung Function to Hair but mainly an extended life that I thought I had been given and I fear I have not let myself actually process it entirely, be that through fear or just putting my head in the sand I don't know, how can you process such a thing without the enormity of it drowning you in sadness? I understand my position in life and I have known for the longest time that my time on this earth is much more limited than those that surround me but when it's actually confirmed to you that, that is the case how do you react to that? Do you say "Oh well I already knew I wasn't long for this earth" or do you panic because everything you've been saying for about 20 years has been SO on point it's unreal whilst everyone else has been saying "Don't be so silly Stacie of course you won't die" or "You'll outlive us all." I don't know I'm just saying that I guess I feel like it's okay for me to be a bit more removed from things at the moment and not feel bad about mentally figuring out things for myself. I feel so lucky that I have my mum and Mark to unload my mental and emotional baggage onto as well (Not sure how willingly on their part lol) because otherwise I'm sure I would explode they are literally the only two people who understand a tiny bit of what is going on in my head at the moment. That adds extra pressure as well because I want them to understand as well how much I appreciate what they do for me and sometimes I can come across passive aggressive, stressed or just a little bit angry or impatient and that's hard because it's never normally the case at all. By the way I'm totally aware that anyone I come into contact with and even Mum and Mark would never ever describe me as any of that even when I think that's potentially the vibe I feel like I'm giving off. 

I guess I'm just going through a bit of thing at the moment I'm not really on social media so much at the moment and just finding "things" a bit mentally draining and it's been over a year now dealing with being ill again and I think no matter how long you have to "get used" to something like this it is still so hard to deal with 24/7, there is no break. There are better days but even on a better day I'm still in a wheelchair having to be pushed, I'm still doing nebulisers, inhalers, medications, pain medications, physio, hospice care... all these things just to keep me stable and that's not even to improve me that's just to keep me going. So as much as I enjoy and love my life and love the people I have, I am still having to lead a life knowing that I have to live for my better days I'm not living with the expectation of getting actually better and I've been doing that for over a year now and I do wonder how long I can do this for? I don't know. I know I'm stronger and have more will power than possibly anyone I know but that doesn't tell me how long I can do this for and that's stressful and worrying for me. Too much information can be damaging but then not enough can be equally so it's getting that in-between and I think I have it right I just have to let myself go through this phase. 

As always, thank-you for reading and chat soon
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7.9.17

Stacie on the road: Snowdonia...

 

Good Morrow my lovely humans. Stacie was on the road again! I went to Snowdonia, a place in the North West of Wales which is about and 6-7 hour drive from Norwich. Going to Snowdonia I had very little knowledge about what to expect other than the fact it was the home of Mount Snowdon, it was in Wales, housed a lot of sheep and was just a very green and countryside rich place in which I expected to feel like we had left the world for a bit. I was not disappointed. 


I was surprised how the drive didn't seem that long to me, maybe because me and Mark are used to doing long drives to and from each others homes adding a few extra hours to a drive isn't so bad? Maybe? Who knows. Mark is probably reading this thinking "What is she talking about? It was the longest drive in history..." haha. Initial impressions driving into Snowdonia were just that of awe, it was just so beautiful the scenery was incredible and I could only think about how I wish I were able to walk over the mountains and hills I was looking at, to stroll along the edge of the rivers and lakes that were running next to us but at least I was going to get to experience it all just a little differently. 

We arrived at our residence for the week. We were staying at a old Listed Manor type building which were through Wren Holiday Cottages it is currently in the process of being "done up" so is very much a work in process but the beauty of it still shines through and you can imagine how even more amazing the building will be once it's complete. We got to stay in one of their little outdoor cottages which was lovely, self catering with a living room, kitchen bedroom and bathroom all very accessible friendly which I was surprised about considering the age of the building just a little step to get in and one between the kitchen and living room but easy to navigate for me as I walk around inside, albeit extremely slowly. It also led to an atrium which was a communal area between us and 2 other potential residents where there was a loungey area with big table which I think would be great if you were travelling with family you'd have your own separate "houses" and then you could spend time together in the middle LOL. 


This holiday for us was first and foremost a relaxing holiday for us we were not going there with the intentions of being busy from dawn until dusk exploring and knackering ourselves out until we collapsed. It was more of a 'we'll get there and then see what we want to do whilst we're there' kind of deal and I really feel like that worked for us so well. One day we went to their Slate Museum which surprisingly interesting although definitely more aimed at kids I think as I still left with quite a few questions that I felt hadn't been answered on the way round. It was really interesting to be sort of transported back to that era and see what it was like back then. I come from a Railway town so some of it was slightly reminiscent of what you see around Swindon sometimes we just clearly don't take advantage of our heritage like they manage to. Whilst we were there we had a little trip on a old train that just takes you on a little 20 minute trip around the museum and it's just worth it to have a little look around. Once again pretty disabled friendly and accessible friendly they had a special coach for wheelchairs and everyone was really accommodating. The surrounding area was slightly cobbled so that could be an issue for some wheelchair users but it's certainly great physio for me, haha. With my new wheelchair those cobbles would have been nothing at all. 


We stopped at various different pubs and restaurants on different days, my main mission to eat as much lamb as possible, I think I did well LOL but we also had nights in where we (Mark) cooked and we were on a mission to work our way through the Band of Brothers boxset while we were there. Mission successful by the way LOL. We had one day where we were happily forced to stay in and enjoy the torrential rain all day and I loved it!!! We went up Mount Snowdon, on a train not actually by foot. That actually took more preplanning than everything else we did because you had to pre-book the train tickets especially being in a wheelchair as there was only one carriage dedicated to wheelchair users and we were there on a bank holiday as well. Lots of people were turning up expecting to be able to go on the train and it was fully booked for the entire week so smart move to just be a bit prepared for that one if you ever plan on doing it, which I totally recommend especially if you aren't scared of heights, it really is a experience I recommend. 



We also went to a little village called Port Meirion and omg i loved it, it was so cute! Not really the most accessible friendly place just because of the steepness of hills but if you can persevere it's worth it I think. Such an interesting little place to visit so just out of place while being utterly in place at the same time.

Snowdonia was just such a great holiday that I'm so happy we've done because it was so needed. You could be in the middle of nowhere if you chose and just get away from everything which you felt like you were most of the time. You get to see some of the worlds most beautiful views just driving through it whilst also avoiding the sleeping lambs and sheep on the side of the roads which I was by the end planning on kidnapping they were that cute! It is definitely somewhere I would go back to and would like to go back and visit because I feel like we only just scratched the surface with it.

We are in the planning stages of our next getaway, we're not quite sure just yet though where exactly we want to go but hopefully on the next one we will have my new wheelchair which arrived today, so we have to get testing! 

As always, thank-you for reading and chat soon
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13.8.17

Dwindling Sundays...


I'm sat on my bed. Its 7pm, it feels like 10pm and I'm certainly wishing it were 10pm as I fight the urge not to just lie down and shut my eyes for a little nap that would inevitably turn into an actual sleep. I'm fighting the urge to not sleep and have been for a good few days now, when the Prospect nurses paid a visit (we'll chat about that in a bit) they changed up my pain meds a little bit so now instead of being on a constant Codeine, Oramorph, Codeine, Oramorph trying to just stay one step ahead of the pain they changed it up and prescribed me a long lasting Morphine called Zomorph. Now it is working and doing it's job and it's definitely treating my pain to an extent, it is however making me a bit dopey sleepy after taking it and I also feel a little sick/nauseous with it. I've been told it'll take a week or two to get used to so just trying to adjust to it a little and decide whether it is covering my pain enough as I do still have to top up with Oramorph as well. We shall see though and I'm just pleased that it's something that gets addressed and not ignored and we have the ability to play with things if I need to. It's hard too admit to people when I'm finding things hard and pain is one thing that I find hard to deal with, I may have a high pain threshold but that still doesn't mean I like feeling pain or like having to figure out a way to get rid of it either I would just rather it weren't there at all. At the moment though my mornings are filled with nausea, some pain and just a overall feeling of not greatness I feel a bit pathetic if I'm honest I just need to deal with it in a better way I suppose. 

So last week I finally met up with the Prospect hospice Nurses that I've been meaning to meet up with for weeks and it's not that I've been putting it off I just happen to have been Norwich or busy whenever they wanted to come and I actually see that as a good thing that I'm too busy to see the palliative care people lol. They were behind lovely though and I love the way they view what it is that they do. Palliative care isn't what it used to be it's not a case of coming in all "lets talk about your funeral" type of deal it's more a case of "what can we do to help you deal with your current situation?" and that's what I need I don't need someone just coming in going "what flowers do you want? what song would you like..... blah, blah, blah." The first thing they've been able to help me with is pain management and that's the initial first thing they wanted to address themselves because that's something they mainly deal in and that is something amazing for me because it was something we finding hard to keep on top of. Then they are being utterly amazing and dealing my GP in regards to my prescription which is a massive stress relief from me and my parents as were starting to have a few issues with missing drugs, wrong prescriptions, just not allowing me to have any at all, it was stress! They were amazing and are liasing with people and I feel so pleased to have met with them and really feel like I have this amazing resource available to me now. Potentially their hospice is where I may die and I will be taking a visit there at some point when I can get the boyfriend and parents off work and together so we can all go and check it out, I've been assured that it is lovely though;- with accommodation for family members, for someone to stay in the hospice with me as well gardens and so forth. They provide relaxation sessions and activities for people if you're well enough so potentially I could go stay there for a few days to give my family and Mark a break and get a Mani-Pedi while I was there. They can also help out with care if there is no-one to be with me on a particular day which can happen somedays as all my family do work. They gave me tonnes of booklets and the one useful one for me is this "Wants" booklet, it's not necessarily a will as it isn't legally binding but it just has suggestions of things to write down so people are aware of my wishes when that time comes but theres no pressure on me to get it all filled out just a as and when I think of things type of thing which is so handy for me I think. I can tell you exactly what I do not want but still have no idea exactly what I do want. It's something to work on though hey :) 

Today has been so, so slow! I have no idea what day it is anymore but I could definitely tell you from the speed of today that it is a Sunday, it has that feel about it LOL. I could once again go on a massive rant to you about my hair but I will not subject you to that torment again it is the thing that upsets me the most though and really does bother me. MY week plans though involve a lot of colouring as I have finally finished a particular drawing that I've been dwindling over for weeks whilst we've been so involved in all this fundraising so that and scrapbooking as well. It's amazing to see how much I've actually done when I look at all the things I have to scrapbook, it's going to be this amazing book or two for people to look at when I'm gone I really hope it's something everyone enjoys. Soon enough we will be getting back to "Stacie On the Road" I'm very excited!! A trips in the works and a new wheelchair to pick up soon so keep your eyes out folks!

As always, thank-you for reading and chat soon
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1.8.17

Speeding along...


You would think being chronically ill and dying life would be very boring, monotonous and slow... I can quite honestly say mine is not, difficult? Yes, painful? Yes, but boring a monotonous really not and especially not over the past 6 weeks. Everything has been quite go, go, go for a while now so I best get going shouldn't I? 

The past weeks have been filled with Fundraising. It has been a really amazing thing to experience, truly, but I can definitely say it is not something I will be doing to this scale again in a hurry. Initially Mark and I just wanted to raise enough money to buy me a wheelchair that could go off road and tackle different terrains easily and make our trips much easier and more accessible and enjoyable for us both. It would tear away some boundaries that are currently in the way for us when we go on our little trips and we could get back to enjoying forest and beach walks like we used to when I was well. The idea was then when I eventually die the wheelchair would then be lent out through the transplant community to people in similar situations to myself and they could get the same use out of it as I did, therefore leaving a little bit of me behind as a legacy. So my Mr Watson decided he would embark on a ridiculous walk here in Norfolk which he would tackle over a 5 day period with lots of people meeting up on the last day which would hopefully raise enough to buy the wheelchair. Before we even got a chance to start the walk we had raised over £6,000 which was nearly double what we actually needed, by this point as well we had decided to throw a "Big picnic" at the end of July as well because we were unaware of how well we would do or how generous people would be. 

With the surprising success of our fundraising we decided that my "Legacy" could be something more if we could raise more money we would, we would just carry on and see how much we could make till the end and then however much we made we'd buy as many wheelchairs as that would buy. The Picnic was possibly the most stressful thing me and Mark have ever embarked on together and that is saying something considering I'm currently dying LOL. It really was something so stressful because getting people to donate stuff to a non registered charity and it's event is difficult and you can't blame them because who just gives stuff to people who come up to you and just ask for free stuff? Exactly it's just upmarket begging really. We managed it though with the help of some of our absolutely outstanding friends and Marks unrestrained ability to keep going. In total we managed to raise £11,000 which means we're able to buy 3 chairs:- Stacie chair, Joshua chair and Adrian Chair. With the amount we raised it also means we're able to get some spokies made as covers for the wheels which will have the names of everyone who donated money to our crowd funder so they also won't be forgotten and get to go on the journey's that the chairs take too. So Fundraising and all of that has been a massive thing for the past weeks and has taken up a lot of energy both physically and mentally. The next few days are, rest, rest, rest! Yesterday I spent the whole day asleep pretty much and even the few hours I was awake for I was trying not to fall asleep lol. 

The past few weeks also saw my 5 year blogging anniversary come and go. I can't believe it has been that long that I have been spilling my feelings out to this little space on the inter-web I remember sitting down to write my first ever post and remember how sad I felt and how alone I felt at the time, this provided a place, a focus for me to put my energy into. I recall I was wearing my oxygen that night and I couldn't get comfortable at all and I remember just being so utterly confused as to how I could be that ill and how could programmes portray dying in such a romanticised way because what I was experiencing at that point in time was god damn awful certainly not what I was watching in movies. Five years on and you've been on a really big journey with me a few near death experiences, A LOT of medications, a transplant, 2 more nephews and a niece and we're kind of back where we started although this time there is no glimmer of transplant lightness at the end, it is just illness and awaiting death but hopefully a good few years of it if I can maintain motivation and stay this stable for as long as I can :-) I think we've done a lot in the 5 years we've been together though and I'm so pleased I've managed to keep at it, people said when I first started it that I would last a few weeks at most as I don't have the longest attention span for some things but I have managed this and that makes me so happy.   

July has also seen one of my oldest and best friends get married! Yes I actually made it to the wedding!!! When they gave me my diagnosis of Chronic Rejection genuinely 2 of my thoughts were omg I have to try and make it to Bernice and Gina's weddings. Something so special about my getting my transplant was that it meant I didn't have to worry about that anymore because transplant was supposed to mean I was well I was going to see all of these things I had been worrying about missing for so long. Chronic Rejection just stole that piece of mind from me and I had to pray I was somehow going to make it to both of them. Bernice's I managed, I was stupidly ill at her hen do and just about got through her day and made it to the end of the evening and we had the best time. Gina's wedding I was a little more worried about making it to. It was July! How was I to make it to July? Somehow I have made it though and I'm pleased to say it's August but I still wasn't sure even up until the actual day of gina's wedding I was thinking "Nothing happen to stop me seeing this, please!" I did it though I managed it I got to be a bridesmaid at both of their weddings and even though I am ill and look so bad in their photos I would not change it for the world because I was there! I made sure I made it there :D 

Next on our agenda is planning a little trip this month just to kind of wind down and maybe do a little bit of testing on the new wheelchair once we get it. I'm extremely excited about it. It's nice to explore our actual country as well, I feel like I've seen so little of it in my time or I haven't but my exploration of it has very much been southerly located so it'll be nice to venture a bit further out see what our country has to offer. 

My eyes are starting to droop as I type this, so that may be it from me for now I will take a nap and I shall write soon, who knows what with but hopefully it'll be exciting! 

As always, thank-you for reading and chat soon
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10.7.17

Losing it all...


I can imagine from the title there may be a few people wondering exactly what it is I'm going to be writing about it sounds a bit ominous, well it's my hair. Now I can hear the groans of those of you who know me and those who have followed me for 5 years "Not again Stacie!" Well I am sorry but you are just going to have to read another rant about my hair and all the things chronic rejection has done to it. 

Illness strips you of absolutely everything. It chips away at you, sometimes really, really slowly so you barely notice it's happening and that's what I would say my experience with illness was my entire life before transplant because it was all I knew and I got more ill slow over time. It wasn't until we hit the last few years that illness demonstrated to me what it really could do, what it could really take away from you. 

I got to a point where it had taken my ability to sleep away from me, to breathe unaided was stolen from me, 6am and 6pm no longer my own dedicated solely to life saving drugs that could be done at this time and this time alone. Walking any further than a few feet virtually impossible, unable to work or participate in society in that way, pulling you away from your friends and the people you love. Unable to go on holidays, day trips, to travel anywhere without it being this crazy ridiculous mission. Illness takes away everything from you and it might not be all at once but it does and it eventually has everything of you. 

You have to try and have little things for yourself and one of my little things has always been my hair. It might seem utterly ridiculous but I loved my hair I managed to keep it so nice through those 24 years of living, no matter how ill I was my hair was the one thing you can guarantee I looked after. Admittedly it wasn't that difficult because I do have good hair generally it runs in the genes but I was happy that I had kept this one thing for me, I could disguise how ill I was with a bit of make-up and good hair no-one need ever know that I was the ill girl. 

Transplant occurred.... I was warned that there would be thinning and some would fall out... I was okay with that, my hairs thick, long, in good condition I can afford some damage and some loss. I got all of that and it was fine it didn't make a tonne of difference to my hair that anyone other than me could notice and that was okay and it was starting to get a bit better by January 2016 but then I started to get poorly again around April time. Steroids, steroids and more steroids.... drugs, drugs, drugs then the diagnosis of chronic rejection. All the drugs and everything we have had to do to treat the chronic rejection has just utterly destroyed my hair totally. 

It's the one thing that has really upset me through this whole experience and it seems silly but when you have everything else stripped from you;- breathing, walking, sometimes talking, sleeping properly, eating, bathing, doing anything alone, holding hands with your boyfriend on a walk. everything you can think of gets taken away so you cling to anything you can and my hair was one of those things! 

So Plan "MULTI-VITIMIN" is officially underway, I am going to get my hair back to some sort normalcy :-) It WILL happen, I'm so determined you don't even realise. Why Multivitamin you ask? Well I took them pre-transplant and they really helped! Also currently I don't eat enough that i can honesty say I'm getting enough vitamins anyway so what can it hurt hey? We will see though guys and hopefully in a few months (If I'm still here) my hair will be showing some benefits :-D

As always, thank-you for reading and chat soon
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3.7.17

Pain...


Pain. How good are you at dealing with pain? I'll leave it to you to decide what I mean by pain, for me when I say pain I mean that of the physical kind. If you're a long time reader of mine or you just know me you will remember that one of my significant worries pre transplant was what kind of pain I was going to have to go through when everything was done. Having been a chronic pain sufferer I knew exactly what pain felt like and I certainly knew there was a limit and only so much pain a person could take, so the idea of waking up from all that and being in more pain than I had already been experiencing scared me a hell of a lot. However I woke up and it was all gone if you remember? I simply had no pain anymore it was just gone and it had nothing to do with pain meds as I had them stopped I simply hit the pain removal jackpot and it felt amazing! As a rule when I had Pulmonary Hypertension I made sure I had as little pain medication as I could suffer with, this wasn't me being some sort of a masochist this was me making sure my body wasn't too used to having a drug and needing more and more to satisfy it's need, I was going to need as much as I could post transplant and I was going to need it to be affective, obviously in the end that plan was a bit in vein but at least had I actually been in severe pain my preparation would have set me in good stead for after. 

Chronic Rejection has been a whole different kind of ball game for me. It has so far been very painful. I don't remember not being in pain since maybe July of last year. I'm stubborn though in the beginning I stuck it out with just paracetamol, saying this paracetamol was more affective on me than the average person because I was just so used to not taking anything for pain but when the pleurisy started and I was crying from the actual agony I was in, even I know that's probably the time when you say "Maybe I should be on something a little stronger..." Now I had never actually taken Codeine before so when they gave these two little pills, which look like they could barely help my cat, I wasn't expecting too much but boy did they wipe me out. I was sat in the consultation room at my clinic appointment with my doctor, parents and boyfriend and to this day I still could not tell you what was said or discussed in that room I was so doped up. Sadly Codeine doesn't still have that same affect on me but it still does it's job nicely and makes me nice and sleepy. Ideally for me I would have loved for it to have been there that my need for pain medication stopped but unfortunately it hasn't been, pain seems to be an ever increasing part of this condition and one you simply have to adjust to.  

Now I am also on Oramorph a form of morphine. I've always had bad associations with morphine and I'm unsure as to why but I've just never wanted to be on it for some reason I very much associate it with death and I suppose that scares me in a way or maybe I'm just scared I'm going to accidentally overdose myself, it's not like I haven't before haha! (Hands up, who remembers the Epoprostenal incident?) I'm on it though and it is the most affective thing for my pain at the moment although I still insist on trying to restrict the amount that I use it. The pain is something you race against and one I've learnt I need stay ahead of especially if I want to live a semi normal life where I continue to get out and about. There have been mornings where I have woken up and thought "Oh... Actually I don't feel too bad this morning, dare I say my chest actually feels alright?" I then end up leaving the pain meds thinking I might be able to get away with it when ultimately the inevitable arrives... the searing pain. I should have just taken the drugs! Now it's a game of catch up you spend the rest of the day in some form of pain because you were stupid enough to believe that your body might actually like you for once and provide you with some relief. The Body lies people... even your own!

I can deal with pain, I've been through a lot of pain I spent the majority of the past 6/7 years in chronic pain my little jaunt into wellness for those 9-12 months was just a break and I'm not sure it wasn't a bad thing for my pain tolerance if I'm honest. I was definitely a baby when it came to experiencing some forms of pain initially post transplant, my first "time of the month" post transplant was actually horrendous (something I've never had any issues with) it felt like I was being gutted! Me being a woman who referred to women who complained about that type of thing as being whimps or baby's because I just never experienced any pain with it they clearly wanted attention or were making a bigger issue of it than what it really was, well apparently the severe pain I had been in for years was providing the perfect cover for that pain. Now I was no longer in that pain it gave way for me to experience new pains or pains I should have been feeling long ago. So mass apologies to my fellow womankind for having thought you were all exaggerating a little all this time. 

I feel like I'm coping well enough with this pain so far and as long as I can keep on top of it I believe I can continue to cope for as long as I need to, I do however worry if it gets worse. I don't want to be one of those people who is just "out" of it all the time I still want to be "with" it, to be able to engage with people and do things, the only point I imagine I will be completely out of it will be when I'm in a hospital bed or at least I really hope that's the point lol. 

The past two weeks have been horrible when it comes to pain but it does finally seem and feel like we may have caught up with it I don't feel like we're chasing it so much now we're taking a nice stroll with it where I occasionally have to reign it in.

As always, thank-you for reading and chat soon
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30.6.17

Confessions...


Howdy people. I'm currently sat in bed watching 'Riverdale' on my iPad whilst getting over my morning pain/sickness fest. I can't quite describe to you what my mornings are like nowadays and whether people will really understand how difficult they can be for me and certainly difficult for those that have to deal with me as there really is nothing anyone can do to help me with it at all in the morning. It's a strange set of affairs because I wake up and feel pretty good;- chest feels pretty clear, breathing is even and level, I've got a generally happy demeanour going on. I tend to take pain meds immediately because if I don't this generally "good" feeling will only last so long and that is when we slowly progress through the morning with a routine of breakfast, tea, medications, nebuliser, inhaler, more meds, physio and so forth. Now since my last clinic they altered things round a little and it buggered up my body a little bit so at the moment I'm suffering with a lot of pain which during the morning will be building up and up and up whilst I have to do things. As I obviously have to use my lungs more this then just makes me the most tired person on the planet with an entire chest and torso screaming at me that they hate me, trust me I hate them just as much in those times. 

I do have to apologise though my being 'ill' doesn't really have too much to do with why I haven't blogged as much recently and it's certainly not through lack of content as in my mind I have SO much to write about and genuinely when I have a thought about something I'll alway be like "Oh, I should really blog about that..." then the thought or having to go upstairs to use my iMac hits and there is no way I'm going to move to sit at a uncomfortable desk and I'd rather not have to ask Mark to use his Macbook when I'm at his. It was a dilemma that I hadn't really noticed until I really wanted to get it sorted and organised again and get back into writing things down more extensively again and now that means I own a MacBook! I can easily blog when I'm in the mood now as i's more accessible I can do it in bed when I'm feeling crap and it just makes my life so much easier :-). I know I could use my Phone or an iPad but the way the formatting seems to work between devices is weird and changes and I have zero patience or tolerance for technology lol. 

I have been having a really awful few weeks, if you follow me on any of my stuff like, Instagram or Twitter or Facebook you'll be following the pretty happy version of me at the moment what I definitely haven't been putting on there is how exhausted I am, how much pain I'm in, my constant production of phlegm, my thinning hair, my stupidly round face, my red face, the fact my head could probably be used as a tap and my latest body hang-up apparently my new title can be "Stacie: The big flake of Skin" my skin is that dry all the time! It's amazing the side affects that drugs seem to produce in a person and the thing is half of the drugs are drugs combating the side affects of other drugs which in turn have side affects, so essentially most of the time you're having to choose which your lesser of evils is or you just have to put up with it.   

I'm really not complaining though because I'm still managing to do amazing things within my limited means and we're still planning things so I feel like life is good I just wish my mornings were't dragged down by being ill, I want to be able to hit the day running, figuratively anyway, get out and seize the day without being dragged down with feeling sick or by experiencing excruciating pain. I suppose the reason I've titled this blog 'confessions' is because a lot of the time I come across people in my life and they generally know the situation what's going on with me but they've never met a dying person before, they aren't sure what to expect so I generally give them the best they'll probably get when it comes to that type of person. I stick my smile on my face and I pretend that I'm not feeling like rubbish and enter the world where I'm not ill and I'm just me. Firstly it's nice to pretend for me sometimes that I'm not the dying girl and it's nice to make light of the situation and I also make those people around me much more comfortable because people generally don't know what to say, how to approach you and whether what they are saying is offensive or not so if I start by saying "I'm fine... I'm good..." If I lead the conversation it generally invites them to be comfortable with me and realise I am a normal person who just so happens to be dying. There is a problem with this though because ultimately people then don't understand the extent of your illness, they assume because you are all happy and normal around them and getting on with things that things are much better than they are but this is what I choose on the whole, the important people in my life see the bad times, they see me cry when the pain gets too much, they support me through all the difficult moments, they know when an "I'm ok..." is actually a real ok. So I suppose what I'm saying is when I've posted a picture of a smiley happy me, or a day out just think about the process that went to getting to that point;- Was there a rest day the day before to allow it to happen? Am I actually feeling beyond awful and covering it with a smile? How many pain meds am I on to get me to be there? How many anxiety episodes did it take to get there? This and so many other questions lie behind everything. 

With my new MacBook purchase though it has meant I have finally managed to give my blog the little update it has been needing, whoop! So finally 2 years after my transplant I have updated my "About Me" page, it's only small but clearly explains the goings on and what has happened since. My "Related Pages" page has had an update and seems more appropriate to these days and finally I have sorted out my "Bucket List" page. Now I have a separate section on it now which is for Chronic Rejection me because there's a lot on the list that was obviously put there assuming I could do it but now it's simply impossible so now I need to think of new things to add to my list the my chronic rejection lungs can do :-) 

As always, thank-you for reading and chat soon
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17.6.17




Hello my lovely people. We have no Stacie on the Road for you at the moment but we are working very hard on that particular part of my life but for the moment I am kind of in stay well mode. Unfortunately it would seem that my phlegm has decided to make some changes which suggest infection which has meant I'm back on my old Azithromycin drug which I despise beyond words. I had secretly hoped my body would do some sort of miracle memory thing and remember that it's had this drug before and therefore doesn't need to react so awfully initially but noooooo it seems so much worse. In reality it's probably the same just because I've had a nice break from it, it seems much worse, so I'm back to my mornings of curling up into a ball trying not to throw up or perform "other" bodily functions that the drugs seems determined to do. It's a whole to do and it's probably equally as horrid for the people around me because there is absolutely nothing that any of them can do except watch me go through it until it passes which must be terrible, I know I would certainly hate it. We have a mini plan though, Azithromycin everyday till Monday, take samples of the phlegm until then, ring Papworth Monday and see where we are and probably go in earlier than planned which is A-Okay with me because I'm feeling pretty not terrible per se but I certainly don't feel well or right in myself and nowadays we have to be even more careful because we have no wiggle room really in regards to damage on my lungs.
 
I find it hard to write my blog these days I don't know why. I never want to appear down to you and I don't want to scare transplant patients that may possibly find themselves in the same position as me someday because I know a lot that definitely will and potentially will, but then again I don't want you guys thinking that being told you're going to die is all hunky dory going here there and wherever else because it is definitely not. So it's sometimes just easier for me not to write anything if that makes sense. I think about death a lot nowadays and I don't really ever know how to put those thoughts down into writing because it's not like my old contemplating where it 'may' happen but I still have the very real potential to live. When I contemplate death now it's questioning what is actually going to happen for real it's really quite difficult to get your head around and there IS a difference between the two I didn't think there would be but there is. I feel a lot of guilt towards my boyfriend and my parents like I've never felt before because I can see the affect it's having on them as well and they are actually getting physically ill from looking after me! My mum has her stress induced blood poisoning back which affects her bones and joints and her lungs and eyesight and my boyfriend is doing a 93 mile walk to try and raise money for a wheelchair for me that is exhausting him when he already has a condition that limits the amount of energy he has on a normal every day basis. I feel like I'm actually killing the people around me and yet they continue to care and look after me! What can I do? Its a hulla ballo and I just don't know how to express it all sometimes.
 
I know I wanted to express my excitement about my newly installed chairs though! I have had 3 chairs delivered to my house which are to help me and more specifically my perching chair for the bathroom sink is my favourite so far. Strangely I find brushing my teeth really difficult standing there and doing that job is one of the ones I dread in the morning and the end of the day, so, so much and just having this chair helps me so much because I can just chill out on the chair without worrying about having to stand for at least two minutes doing this never ending laborious job. We're still working with the shower chair and trying to figure out the best way to deal with it and the whole shower situation but the fact we can pleases me immensely. The most recent addition is a bath seat lift and I'm so excited to use that for the first time and see if it helps because it's the lifting myself out of the bath that I find hard so we will have to wait and see :-D
 
I've been missing normal things lately, stupid things like getting changed properly by myself, making a bed, hoovering, other things that I could just do and not think about it if that makes sense? Like Megan has been having to help me with my scrap book which has been fun but it's sad I can't do it by myself, I want a proper not anxious filled bath! Looking around a shop without going where someone else wants to go, just those type of things. It's all silly really but I definitely think even with all of this I'm making the very most out of everything and everything still seems fun and life still feels so worthwhile especially now me and Mark are attempting to raise money for a "off road" wheelchair, it's all been rather exciting, it means me and Mark can make the most of our trips and actually not be stifled by a different terrains and even plan a forestry trip or beachey trip or just not have to think about a cobbled street. The most exciting part though is that once I've made use of it and hopefully made the most of my life it will get passed on into the transplant community for them to use and hopefully help people like me make the most of their time as well and that makes me so excited that I'll have some sort of something to leave :-)   

I'll try not leave the chatty blogs so long next time but I imagine they'll be several soon whilst all this fundraising is going on :-)

As always, thank-you for reading and chat soon
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13.6.17

Quest for freedom...


Although I have been ill my entire life I've never considered myself "disabled" in ALL of that time, I've been very ill, yes, but not disabled. I never knew what people who had to use wheelchairs had to go through just in an everyday life kind of situation; getting out of the house for instance that can be a hassle in itself I certainly can't do it by myself. It wasn't until we started to do more after being told I couldn't have the transplant anymore that I realised how truly limited people with access needs can be.

Before I got ill again Mark and I used to go on a lot of kind of country, lake walks or we'd drive to the coast and do a really nice beach walk and we were really starting to get into them especially with the transplant games coming up. The walks slowed down the more ill I got and eventually just became something I couldn't do anymore. We focused heavily on getting me better a wheelchair became a necessity for just getting around on a normal everyday basis so we brought a nice one, light, easy to get in the car, really comfy and easy for Mark to push. We thought we chose well and we definitely did for everyday use, for shopping going to friends houses, going to the pub those types of things.

I became more stable and we became a bit more confident in getting out and about and going further a field this is when we realised that as great as my wheelchair is it just isn't adequate enough for the things we want to do. If we want to do forestry walks, visit old towns with cobbled streets actually go on a beach. Mark met someone with a "off road" wheelchair and he thought how cool that would be if we could get one as that would help make unpredictable trips so much easier as we wouldn't have to worry about rough terrain and if we wanted to do a cute country holiday, we could! We would be able to do so much more without the worry of getting around and really enjoy things we were able to do before.

We found a company that made these wheelchairs and they very kindly let me try one out and me and Mark fell in love with it, I could barely feel any bumps under me and we were going over gravelly, muddy, stoney terrain and Mark said how it was so much easy to push because of technical things like suspension and stuff. It was so much fun and I didn't feel like I got jiggled around and I wasn't exhausted by the end of the ride. So now we're trying to raise enough money so that we can buy one and carry on our adventures, it's very exciting.

If we can do it, it means once I've "used" it Mark can kind of donate it back to the transplant community and let whoever needs it have a go with it if they need it for a holiday or they're doing forest walks and stuff, it's something I can give back to the community when I'm gone and that really makes me happy. It scares me a bit though, I've never raised money for anything and I hate having to ask for help especially when it is money related I don't like people to feel obliged give money but at the same I'd love it if they could. I guess what I feel like is a teenager who has thrown a party and invited all these people and I'm super worried no-one will actually turn up and I'll look like a lemon. I'm not sure what that says about me but I like to avoid humiliation where I can.

I wish things like these weren't so expensive and just readily available for those who would like to explore and do more, I think being able to get out and about more especially when you're in a very undesirable situation helps those people so much. Just to be able to experience something a bit different one day feel like you've done something a bit normal without being utterly restricted can do so much good for someone mentally. I know if I get out I always feel a bit better, it won't cure me of course but just the feeling is worth it and if we can make that easier for us then we have to try :-)

If you want to check it all out and see what we're doing and what it's all about head to Marks website called "For My Donor" where you can get sponsorship forms and have a read about his past experiences and past projects or you can head straight to our Crowdfunding page aptly named "Life is Worth the Fight" and have a look, spread the word or donate as little or as much as you like :-)

As always, thank-you for reading and chat soon
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