I am please to say that I am feeling so much better today. Still not eating properly but I did have some cereal for breakfast and a very small plate of pasta for lunch, both of which I have kept down and which have not made me feel queasy. Looks like everything has settled again even if it is with the help of the nausea tablets. Obviously as my health has improved so has my emotional state and I feel much more positive than I was yesterday. I don't know if it is the frequency with which I've been ill this year or whether it is the overall length of time that I've been ill but I found myself in a very dark place very quickly this time. I normally can keep my chin up during most things and it is only when I've got through it that I tend to have a mini meltdown just to clear the air. I was shocked at how down I felt yesterday, tearful, full of self pity and just about on the verge of giving up, not like me at all. I guess there comes a point when you feel emotionally drained as well as physically and maybe I have reached that point. I'm sure the old me will return but it was a very scary time for a while.
My nurse specialist has obviously been busy rallying the troops on my behalf and has arranged for me to go into hospital tomorrow to see the Palliative Care Consultant to see if we can come up with a solution for my sickness problem. The tablets I am on are not intended for long term use and have started to cause me a few problems such a joint pain and swelling. It isn't too bad at the moment but will only get worse with time, hence the disastrous trial withdrawal. Now that I've proved that I cannot tolerate the higher doses without the tablets something has to be done. The hospital is very reluctant to reduce my drug dose again as I am benefiting so much. And if they do it won't solve the problem of what they do when I need an increase because my PH has worsened, as it is bound to do. So I have an appointment to see this consultant who is an expert on sickness control without making the rest of you feel like crap. With a bit of luck I'll come home without feeling sick and out of pain, or a least with the prospect of these things happening.
Also in the e-mail was the intriguing sentence 'I will also have some news about your transplant referral, and will update you on where we are at.' Now I wonder what that could mean? Obviously there has been some movement but is it good news or bad news, I will have to wait and see.
Someone who does seem to be having more success with his health is Dan Male. If you remember I reported on Dan way back in May when after being accepted for transplant in January a subsequent assessment in April found him to be too ill for the procedure. Well the good news is that Dan's health is improving and hopefully he will soon be back on the list. For a full update in Dan's own words click on the Joey Pouch link on the side bar.
So I'll be off to London bright and early in the morning and will let you know how I get on in tomorrow's blog. Take care.
My nurse specialist has obviously been busy rallying the troops on my behalf and has arranged for me to go into hospital tomorrow to see the Palliative Care Consultant to see if we can come up with a solution for my sickness problem. The tablets I am on are not intended for long term use and have started to cause me a few problems such a joint pain and swelling. It isn't too bad at the moment but will only get worse with time, hence the disastrous trial withdrawal. Now that I've proved that I cannot tolerate the higher doses without the tablets something has to be done. The hospital is very reluctant to reduce my drug dose again as I am benefiting so much. And if they do it won't solve the problem of what they do when I need an increase because my PH has worsened, as it is bound to do. So I have an appointment to see this consultant who is an expert on sickness control without making the rest of you feel like crap. With a bit of luck I'll come home without feeling sick and out of pain, or a least with the prospect of these things happening.
Also in the e-mail was the intriguing sentence 'I will also have some news about your transplant referral, and will update you on where we are at.' Now I wonder what that could mean? Obviously there has been some movement but is it good news or bad news, I will have to wait and see.
Someone who does seem to be having more success with his health is Dan Male. If you remember I reported on Dan way back in May when after being accepted for transplant in January a subsequent assessment in April found him to be too ill for the procedure. Well the good news is that Dan's health is improving and hopefully he will soon be back on the list. For a full update in Dan's own words click on the Joey Pouch link on the side bar.
So I'll be off to London bright and early in the morning and will let you know how I get on in tomorrow's blog. Take care.
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