Sunday, July 29 2018
I know it has been a while since I have posted on the blog, I have been sharing daily posts and microblogging on my facebook and instagram pages, it has just been easier while I felt unwell.
As I write this, I am sitting in the lounge room with the blinds down and lights off so it is dark. I have had a bad migraine since 1am and my head has been hurting so much. But it isn't my only pain today, suffering with abdo/tumour pain (which has been the bane of my existance of late).
I feel of late, that all I seem to be doing is sleeping - which is essentially true.
My pain has been rather bad, and it is rather tiring, along with my thyroid levels being out, have all contributed towards my exhaustion and need for sleep. It's not that I want to sleep so much, or feel lazy, but I am trying to be a good patient and listening to my body that it needs rest.
The fatigue can be rather debilitating and interrupts so much of my routine and has made me feel not as productive as I would have liked to have been. I have so much to do, to plan and organise, but finding the time or energy to do so is hard. I am often needing to cancel plans last minute too.
I have been monitored by my doctors, palliative care team and of course Russ and Dusty, but there is talks of a hospitalisation out in Bellingen at the Palliative care unit to look at changing to a new pain medication. I am not ready to go to this new medication, I am waiting until I feel the current medication has been exhausted.
The need for a hospital stay with one on one monitoring is due to the events that unfolded in January when I switched pain medications and almost died, so I need to start on a low dose and work out what I need, once I am stable I can return home.
Another reason for my hesitation is that Bellingen is around half an hour from coffs, so 45-50 minutes to my house. This would mean I would be alone mostly as Russ works and is too far for him to visit, it would become 1.5hours just in journey alone, and after working a 10 hour work day it is too much for me to ask of Russ to visit me. There is a possibility he could stay in my room for the night if there isn't someone else needing the bed, then he can shower and head of early. But it would mean not seeing my little kitty for some time too, he struggles when I am not home.
I really would rather be in the private hospital in Coffs than be in Bellingen, but it is where the specialised care and doctors are, so the option isn't mine.
Until then, I am just managing my pain as required. It is hard for Russ seeing me in pain, it has taken its toll on him and our marriage, I have been retreating back to bed not long after he is home and dinner is finished. I feel like I am missing him deeply, but it is just more comfortable to be in bed than sitting up. I feel bad for him hurting.
I am doing the best I can and hope that my pain eases so I can enjoy some upcoming events such as heading to Brisbane and a local young women ostomates meet. Having a couple of events to look forward to is allowing me something to focus on, but has me excited too!
I am just taking life one day at a time and making the most out of good moments I find during the day.
Please know all the love and support you offer me, especially on difficult days, means so much.