Wednesday, 27 November 2013
It would seem that technology has beaten me once again. I have made three attempts to upload a video blog, all with futile results. I wanted to do a video blog because it is getting to the point where typing is becoming more of an issue due to my not so great vision and energy levels, so please be grammatically lenient when you read these posts as I cant really see what I'm doing.
I think most of you will already know by now, but thankfully I didn't have to have my hickman readjusted on monday - somehow it just automatically flipped back into to place by itself. I was so thankful and grateful not to have to endure further pain. I got to come back home, i'm in headingly now, on Monday and was very grateful. The transition has been difficult because I have struggled a lot with symptoms of night sweats and bloatedness, plus not being able to sleep through the night. They have also put me on steroids which means I feel more bloated and have gained weight around my abdomen and face - I have proper granny pinching cheeks now!
It's little things like that which start to pile up and get me down. It is really hard to accept that I'm not getting better and that I have to adjust day by day to a potentially worsening quality of life. Care in the community is very different to that in the hospital; there are lots of people coming and going to check if your ok; which is great when your living on your own and pretty much need full time care. But its not so great when your like me and semi independant; I start to feel a bit useless.
I went to visit the hospice yesterday, which is where I had originally decided that I would like to die. It is very nice, but I have changed my mind. I want to die in the hospital back on ward 94 - I started my journey there and I want to finish my journey there. I know the people, and even though the hospice staff are brilliant, it is not the same; plus there is no one there who is my age.
It's very surreal thinking about dying. The acceptance part is hard. It almost feels that this period of time is pointless; I feel like I don't really have anything to live for. Part of me wants to just die and be done with it, but part of me still wants to be with people. I find that I'm not very motivated at the minute, which I hate because I like planning and I like having things to look forward to, but there just doesn't seem much point anymore. I just wish I had a bit more energy.
One of the hardest parts of accepting that I'm dying is knowing that I'm not going to be able to be married or have kids. If I'm honest, I do feel cheated. I feel like this was a desire given to me by God and just when I think that maybe it could happen, it is taken away from me. I keep thinking of all the stories in the bible of women who have been barren or had a horrendous life, but it would seem just at the very end, God would swoop in and save the way. I often wonder if this is my story. But it is hard not to get false hope. Everything is held in tension and it is learning to live in that tension knowing that God is a loving father and has my best interests at heart that is the struggle. But that's life.
I did do one thing to make myself feel better about the whole situation. I got myself a ring. I have always wanted a ring and the fairytale wedding, and I thought to myself, why cant I have a ring to symbolise that true love waits? Granted, I'm no longer waiting for my husband and soul mate but I am waiting for Jesus to take me home. So, I have a ring and I am proudly wearing it on my left hand. It was very emotional putting it on, but I'm glad I did it.
Please pray for me. Please pray that my hope and joy comes from God and that He gives me energy and comfort. I miss you all, but know that you are in my thoughts and prayers. Till next time.