Well that didn't exactly go as planned.
I had the day off today and was really looking forward to having a mooch around the shops followed by a nice meal and a quick trot around the charity shops before heading home.
The day started well. I woke up at eight after a really good night feeling refreshed. I had breakfast in bed with the papers and then spent half an hour wallowing in my favourite bubble bath. I dressed warmly, the sun was out and the sky blue but I wasn't fooled and knew it was going to be cold out there, and off we went. First stop was Milton Keynes so I could drop in on L'Occitane, Waterstone's and Lush. Peter wanted to call in on John Lewis and Andrew wanted to pick up a few things for his first real job as a paramedic.
We split up to do what we needed to do, well of course Peter stayed with me, and we got everything done quite quickly. Things were not as nice for me as they usually are though and I started to feel uncomfortable on my scooter. My back ached and I felt suddenly very tired. We stopped for a leisurely lunch and I began to feel a bit better. I even treated myself to a creamy cappuccino, yes I know I shouldn't really drink coffee but it was a case of 'a little of what you fancy', etc.
We had one more thing to do before leaving the shopping center and that involved going outside to the market. Despite having a coat I was soon shaking with cold and couldn't wait to get back indoors. The weather had changed too and it was now overcast with spots of rain in the air. Once back inside I couldn't stop shaking, I'd turned an alarming shade of blue and I felt so tired I could hardly sit upright. The decision was made to forget visiting the charity shops and head back home. Peter drove and I dozed in the passenger seat with my coat and a blanket over me.
Once home I was escorted upstairs and was so tired I pulled my boots off and collapsed into bed fully clothed. Peter brought up a cup of tea which I drank quickly, grateful for the warmth. I don't know quite how long I dozed but it must have been at least an hour. I lay quietly for a while trying to work out what was going on then got out of bed and changed into something more comfortable than jeans. Still tired I lay back down again but, although shattered, couldn't get back to sleep.
I was a little bit shocked at how quickly I'd gone from raring to go and being full of energy to hardly being able to keep my eyes open. Of course I have been here before. Way back in 2006/2007 when I was beginning to get the idea that something was wrong, and it wasn't just asthma. I'd arrive home around half past four. Lie down on the bed and be woken up at six by Peter asking if I wanted any tea. At the time I thought I was just over doing it. I spent five days a week constantly on my feet between the hours of eight and three teaching. Then in the evening another couple of hours would be taken up with marking. At weekends there was more marking plus all the household chores. I barely sat down even to eat.
These days I have it relatively easy. I do a job where I spend the majority of the time sitting down. It is stressful in it's own way but not physically so. I don't do housework anymore, apart from the ironing and a bit of washing up. My boys do that for me. So why the sudden overwhelming weariness? The pain in my back is familiar too, it's an indication that I just don't have the strength to hold myself up anymore. As for the cold, well PH patients do feel the cold more than 'normal' people but that was excessive.
Of course I've had all these symptoms before and have learnt that their return usually herald the need for a medication change and/or increase. The Brompton have been talking about increasing my Flolan levels for some time now, I'm on an extremely low dose at the moment, but have been putting it off until they can switch me onto the new Veveltri (spelling) that I was due to start in January. Their reasoning was to cause as little disruption to me as possible. However there is still some administrative hold up with the drug at the moment so not only have I not had that but I haven't had my increase either.
There is no guarantee that a meds increase will help. It is inevitable that my PH is going to progress and I will become worse. I already knew that. I also know that I have a quick turnover with medication and for me drugs become ineffective very quickly. Flolan has been effective longer than any drug I've taken but I, and my PH team, knew that sooner or later things would change. So the question is, is this just a blip to be solved by an increased dose or is it the beginning of the inevitable, because there is nothing else except transplant.
I have notified the Brompton of my problems and as I have an appointment with them in a couple of weeks time they will discuss things with me then. They are also hopeful they will have news on the new drug by then. In all honesty though, all I want is my transplant so I can put all this behind me. Is it really too much to ask?
As if I don't have enough to fret about I received my renewal pack for my Disability Living Allowance this weekend.
There have been lots of horror stories about people being unfairly denied benefits etc, etc. However having read all the stories I realised that the majority center around the old incapacity benefit for those who are disabled and don't work and not DLA, which is largely claimed by those still in work. To be fair I don't see why disabled people shouldn't do some sort of work. If you can type and answer a phone then why not? It will benefit the disabled person and the country. Before anyone jumps down my throat, I know there are those who are too disabled to work and of course they should be supported but lets be frank, some are just swinging the lead because they like doing nothing. And it is right that those people should be encouraged back into work.
Anyway before I get on my soap box for a good old rant, back to the problem at hand. I've heard that if you are on the transplant list they more or less just leave you alone. It stands to reason, even to the thickest bureaucrat, that you have to be pretty damned poorly in order to need major organs replacing. I'm hoping that's true because if I have to go in for a face to face assessment they'll never believe I so ill. Like most PH patients I look deceptively healthy thanks to the drugs giving my a healthy flush. I will keep you informed of progress. Be prepared for a few rants.
I had the day off today and was really looking forward to having a mooch around the shops followed by a nice meal and a quick trot around the charity shops before heading home.
The day started well. I woke up at eight after a really good night feeling refreshed. I had breakfast in bed with the papers and then spent half an hour wallowing in my favourite bubble bath. I dressed warmly, the sun was out and the sky blue but I wasn't fooled and knew it was going to be cold out there, and off we went. First stop was Milton Keynes so I could drop in on L'Occitane, Waterstone's and Lush. Peter wanted to call in on John Lewis and Andrew wanted to pick up a few things for his first real job as a paramedic.
We had one more thing to do before leaving the shopping center and that involved going outside to the market. Despite having a coat I was soon shaking with cold and couldn't wait to get back indoors. The weather had changed too and it was now overcast with spots of rain in the air. Once back inside I couldn't stop shaking, I'd turned an alarming shade of blue and I felt so tired I could hardly sit upright. The decision was made to forget visiting the charity shops and head back home. Peter drove and I dozed in the passenger seat with my coat and a blanket over me.
Once home I was escorted upstairs and was so tired I pulled my boots off and collapsed into bed fully clothed. Peter brought up a cup of tea which I drank quickly, grateful for the warmth. I don't know quite how long I dozed but it must have been at least an hour. I lay quietly for a while trying to work out what was going on then got out of bed and changed into something more comfortable than jeans. Still tired I lay back down again but, although shattered, couldn't get back to sleep.
These days I have it relatively easy. I do a job where I spend the majority of the time sitting down. It is stressful in it's own way but not physically so. I don't do housework anymore, apart from the ironing and a bit of washing up. My boys do that for me. So why the sudden overwhelming weariness? The pain in my back is familiar too, it's an indication that I just don't have the strength to hold myself up anymore. As for the cold, well PH patients do feel the cold more than 'normal' people but that was excessive.
Of course I've had all these symptoms before and have learnt that their return usually herald the need for a medication change and/or increase. The Brompton have been talking about increasing my Flolan levels for some time now, I'm on an extremely low dose at the moment, but have been putting it off until they can switch me onto the new Veveltri (spelling) that I was due to start in January. Their reasoning was to cause as little disruption to me as possible. However there is still some administrative hold up with the drug at the moment so not only have I not had that but I haven't had my increase either.
I have notified the Brompton of my problems and as I have an appointment with them in a couple of weeks time they will discuss things with me then. They are also hopeful they will have news on the new drug by then. In all honesty though, all I want is my transplant so I can put all this behind me. Is it really too much to ask?
As if I don't have enough to fret about I received my renewal pack for my Disability Living Allowance this weekend.
There have been lots of horror stories about people being unfairly denied benefits etc, etc. However having read all the stories I realised that the majority center around the old incapacity benefit for those who are disabled and don't work and not DLA, which is largely claimed by those still in work. To be fair I don't see why disabled people shouldn't do some sort of work. If you can type and answer a phone then why not? It will benefit the disabled person and the country. Before anyone jumps down my throat, I know there are those who are too disabled to work and of course they should be supported but lets be frank, some are just swinging the lead because they like doing nothing. And it is right that those people should be encouraged back into work.
Anyway before I get on my soap box for a good old rant, back to the problem at hand. I've heard that if you are on the transplant list they more or less just leave you alone. It stands to reason, even to the thickest bureaucrat, that you have to be pretty damned poorly in order to need major organs replacing. I'm hoping that's true because if I have to go in for a face to face assessment they'll never believe I so ill. Like most PH patients I look deceptively healthy thanks to the drugs giving my a healthy flush. I will keep you informed of progress. Be prepared for a few rants.
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