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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