I had my Mother's Day yesterday and lovely it was too.
The plan was to either take me out to a posh restaurant or cook at home for me. As my health started to deteriorate the restaurant idea was quickly shelved. Then the cooking for me plan when out the window too, so what did they come up with? Well I was bungled into the car and driven to Laurence's where a Chinese take away awaited me. Now I know some of you are going 'what were they thinking' but it turned out to be the best meal I've had for a long time. There was no off putting huge plateful, and I didn't feel pressure to eat everything put in front of me. I could pick and choose and I probably ended up eating more solid food over the space of two hours than I'd eaten the whole previous week. I even downed a couple of glasses of full sugar Cola. I know I shouldn't be having the caffeine but I'm so weak at the moment I needed something to give myself a boost.
Unfortunately the day was over all too quickly. I was very tired and I think Peter was anxious I rest to enable the food to do it's work. Back home I had a glass of Complan and then dozed until around six. It was lovely to wake up feeling full. I had more tea and more Complan and even tackled an apple before heading to bed at around eleven.
This morning I woke to tea and toast and then got up to watch the Grand Prix before a lunch of steak and chips. This wasn't quite as successful as the Chinese as I felt under pressure to eat everything. Picking is definitely the way to go as far as my appetite is concerned. I am trying and I'm really annoyed with myself for letting things slide this far back. I was doing so well. The sickness tablets were keeping everything under control and I was managing to eat a lot as the constant feeling of nausea had gone. Now it's back and it is going to be very difficult to get everything back under control in time for my next visit to Papworth in two weeks time.
Those on Flolan will know that the dosage is partially controlled by weight. This means if you loose weight the drug becomes more concentrated in the body and if you put on weight then it becomes less effective. That's part of the reason the PH centers are so paranoid about your weight. They need to be sure you are getting the right dose for your body mass. By losing half a stone, actually a bit more than that now, I'm caught in a Catch 22. I'm getting a bigger concentration than my body can take which is making me feel sick. The only way I can get rid of this feeling is to put on weigh because the Brompton will not lower the dose any further. However how can I put on weight if I'm feeling too sick to eat? See the problem?
I know I can do it, having done it at least once before, but in two weeks! I don't think so and it's stressing me out. I've tried explaining to the transplant team that I'm doing my best but they don't seem to hear me and just tell me off for not making the effort. They have had the grace to admit that they don't usually have to encourage patients to put on weight, it's usually the other way around, so maybe they think putting on weight is as 'easy' as taking it off. I'd argue it is harder. Peter worked out that in order to put on all the weight I have lost plus the little bit extra Papworth were hoping for, I'd have to eat six Mars bars a day for the next two weeks. That's just not going to happen. All I can do is eat what and when I can and hope for the best.
Weight aside I do feel a bit stronger today and a bit better in myself. My mood is certainly on the up.
Tomorrow I'm off to the GP to collect my sick note for the next week. I'm sad I'm having to take another week off work but grateful that I didn't end up in hospital. On Tuesday I've got to visit the Lethal and Deadly for repeat bloods just to keep a check on things. After that it's a 'wait and see' situation.
As you know we've been having a clear out and Peter came across my oil paints. I have no idea what state they are in but if they are good I might try a little bit of abstract art to keep my brain ticking over. If the weather is nice I might sit on the back step and watch Peter do some basic tidying up around the garden for me. I'm desperate for anything that isn't daytime TV.
It is Andrew's last teaching week in uni this week, that time went quickly. He now has a month off with Easter break and study leave and then he is back in for his finals. June and July he will be on placements and he qualifies at the end of August. The start date for London Ambulance Service is November so he will be able to take a couple of very well earned months off before launching into the world of work. We won't know about the East of England start dates until he's got through the next set of interviews which for him is on the 10th April. I have to say it has been a roller coaster few years but once he is in work and happy it will be worth it all.
The pictures in today's blog are of the little men who made me a mum and now are both big enough to carry me around.
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| My eldest Laurence aged around three |
Unfortunately the day was over all too quickly. I was very tired and I think Peter was anxious I rest to enable the food to do it's work. Back home I had a glass of Complan and then dozed until around six. It was lovely to wake up feeling full. I had more tea and more Complan and even tackled an apple before heading to bed at around eleven.
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| Andrew around six months |
Those on Flolan will know that the dosage is partially controlled by weight. This means if you loose weight the drug becomes more concentrated in the body and if you put on weight then it becomes less effective. That's part of the reason the PH centers are so paranoid about your weight. They need to be sure you are getting the right dose for your body mass. By losing half a stone, actually a bit more than that now, I'm caught in a Catch 22. I'm getting a bigger concentration than my body can take which is making me feel sick. The only way I can get rid of this feeling is to put on weigh because the Brompton will not lower the dose any further. However how can I put on weight if I'm feeling too sick to eat? See the problem?
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| Brothers |
Weight aside I do feel a bit stronger today and a bit better in myself. My mood is certainly on the up.
Tomorrow I'm off to the GP to collect my sick note for the next week. I'm sad I'm having to take another week off work but grateful that I didn't end up in hospital. On Tuesday I've got to visit the Lethal and Deadly for repeat bloods just to keep a check on things. After that it's a 'wait and see' situation.
As you know we've been having a clear out and Peter came across my oil paints. I have no idea what state they are in but if they are good I might try a little bit of abstract art to keep my brain ticking over. If the weather is nice I might sit on the back step and watch Peter do some basic tidying up around the garden for me. I'm desperate for anything that isn't daytime TV.
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| Just a gentle reminder to sign the organ donor register |
It is Andrew's last teaching week in uni this week, that time went quickly. He now has a month off with Easter break and study leave and then he is back in for his finals. June and July he will be on placements and he qualifies at the end of August. The start date for London Ambulance Service is November so he will be able to take a couple of very well earned months off before launching into the world of work. We won't know about the East of England start dates until he's got through the next set of interviews which for him is on the 10th April. I have to say it has been a roller coaster few years but once he is in work and happy it will be worth it all.
The pictures in today's blog are of the little men who made me a mum and now are both big enough to carry me around.
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