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


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