So here's a little update as much as I understand anyway. We we're struggling with pain control in my last blog. In my opinion we still are. I ended up having to go back into hospital for 10 days, where if I'm honest, apart from straightening a few things out, we weren't able to achieve very much. My needs were assessed which was helpful, I'm now suffering from bed sores which are healing well thanks to good nutrition, extra antibiotics, barrier cream and from being on the airflow mattress are healing well. But chest pain, investigation and relief of it is still an issue. I'm on slow release morphine and short acting morphine. What you want is to be on the lowest dose slow release morphine and need little or no short acting morphine. I'm still needing quite alot of short acting morphine so we're not quite there yet. I hate oramorph (short acting morphine) it makes me feel refluxy, sickly, drowsy and tired so I hate feeling like that so I hate having to take it. The side affects scare me, taking morphine scares me.
I also take IV Paracetamol. Paracetamol works amazingly well IV with hardly any side affects I prefer to use it but alone unfortunately it's not enough to control my pain.
At the moment my body and lungs just seem so unpredictable and it scares me. My own body scares me... I had another 'turn' on my first night at home, again I was doing nebulisers and it just felt like the 'space' in the room disappeared. I cried. Alot. I cried for me, I cried for mum, I cried for dad, I cried because I'm scared. And that's it, I'm scared. I'm scared the right people don't know I'm scared or even what I'm scared of. This is where I'm at now and this is the best things are going to get. That alone makes me want to cry. Mum is now carrying a bell system round her neck, that's how scared I am. Being alone scares me.
I didn't want this blog to be a negative one and refuse to end it on a negative note. I'm home now and getting back into a good routine which when you have a treatment regime like mine has got to be a good thing!
Birthday!
4 years ago
10 comments:
I dont know if its any help for you,but in my house, for when I hit breathing troubles and cant call for help, we have a cordless bell, just the normal doorbell type. We have the buttons in various rooms and if I get stuck, I can press it and my family will hear.
For when they are out, there is another button that will conect to a call centre and then call an ambulance. Sometimes the extra precautions help.
Bed sores are a nightmare, but I am glad yours are healing.
I hate that you have to go through all this Rach!!
Love to you V xx
My best wishes and prayers are with you and your family.I hope that being home and your treatment routine helps your improvement continue :)
I pray for comfort and peace for you, and strength in body and mind. I'm very sorry you are dealing with so much, especially the pain. I hope things do get better for you!
My thoughts & prayers are with you & your family, I hope that your pain is soon under better control.
I'm just so sorry.
I have three teenagers and I can't imagine watching them go through what's happening with you.
You're amazing and very strong, just keep holding out.
V xxx
Thinking of you tnt precious one...much love and mendy vibes your way xxx
Much love to you and your family Rachael. I have followed your blog since before you had your transplant and am so sad to see on Tor's twitter that you are very unwell. All my thoughts are with you. You are amazing.
I've been following your blog for a while - you are amazing and inspirational. I've never commented before but I think of you a lot. Sorry to hear from twitter you are in hospital.
Sarah x
Thanks for sharing this informative blog over here.
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