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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