It's been a bit of a tough week since I last posted, nothing major but just the annoying little things that work together to wear you down a bit. I've still been having a lot of back pain and also sciatic pain in my hip and leg which is very wearing. I hate taking painkillers everyday but also refuse to sit in pain all day so I've been trying to take as and when I need but without suffering too long.
My body also seems to hae made the radical decision that it doesn't need any sleep, I don't think it's thought this through very throughly. This week has been very bad for me sleeping and I have regularly been awake at 4am which as you can imagine doesn't make me a particularly happy bunny. It has amazed me that my body is so weakened by lack of sleep. Folowing a very bad night not only am I exhausted and over tired but left feeling pretty unsteady and weak generally, it's much harder to breathe and get through the day. I'm really tired when I get into bed and it's a job to get up/move at all but despite being so physically drained my head just won't go to sleep. It's not even that I'm stressed or going over things which has been problematic in the past, I lie there feeling relaxed but 3 hours later I'm still lying there without having slept. I've tried all the obvious tricks but its still very hit and miss so if there isn't an improvement over the weekend I may have to ask for some help from my CF team on Monday when coincidentally I'm at clinic. Not keen on the idea of sleeping tablets if I'm honest so stuck in a bit of a dead end.
I mentioned last time that I have recently done an interview for the Sunday Times and I can now tell you that it will be in the paper this Sunday (21st). Please buy a copy as I particularly enjoyed this interview as it gives me the chance to talk about my wonderful mum and for you to read about my wait for transplant from a different perspective. Also should mention that unless you are registered (for a fee) with the Sunday Times website you wont be able to read the article online so if you want to read don't forget to buy your copy! I will see what i can do about getting a copy (possibly scanned) onto the awareness section but making no promises.
Will update again soon to let you know how clinic goes on Monday.
Friday, 19 November 2010
Sunday, 7 November 2010
When will it be?
I've had completely amazing feedback from all my new blog readers, and twitter followers who found me through the BBC piece. I honestly never expected so many people to see it and find it so interesting! A huge thank you to everyone who sent a tweet or comment, I can't reply to you all individually but know that I love reading them all and REALLY appreciate all the love and support.
The BBC article has also gained me some other media bits and bobs which is great, this week I have been doing an article that will be going into the Sunday Times in a couple of weeks (I'll let you know when) it's been one of my favourite interviews :)I've also got a potential radio interview which I'm in the process of arranging which is all good awareness raising work.
I'm getting a bit more into my current uni course now too (famously last words!). I handed in my first essay of the course last week and am waiting not so patiently for my result to come through. I always find that I have a "why did I do this" few weeks when I first start work again and find it really difficult to get motivated but fingers crossed now one is done and dusted it will be slightly easier.
Healthwise I'm pretty much the same. It's so weird that these are a few months in which I thought I would be bored silly with very little to do but I seem to have had lots of odds and ends with interviews, hospital visits, friends popping in and dad taking a few days off so we can go shopping and avoid the crowds, that I've found myself pleasantly busy! Lungs are still very chanable on a hourly basis sometimes ok, other times tight, other times breathless. It makes me sad to know that I'm on more inhalers and meds than i have ever been and yet they have little effect now. Some days I take all my inhalers and 30 mins later have to remind myself that I've had everything because breathing is no easier.
Pain has been a bit of an issue, I get lots of back aches and my chest area aching and becoming very tight and spasming from where I'm sitting alot and the effort of breathing. Once everything starts to tighten you've had it everything becomes a viscious circle, breathing gets even harder, I get more breathless and panicky, lungs start to really ache and no matter how i sit/lie I can get no relief. So I've been relying on the painkillers to try and stop this before it gets too bad.
Appetite hasn't been great either so I've been finding eating a struggle too. Some days I could literally just sit with a plate of food in front of me for hours without feeling any urge to eat some. I'm having to force myself a little bit more but without making myself sick, eating as and when I feel I can.
I've also struggled a bit more mentally the last couple of days, nothing as major as other times but a little wobble that is I suppose natural at this time of year. Halloween, Bonfire night just gone and Christmas fast approaching, means everyone seems to be enjoying these times while I'm STILL stuck on the sidelines. Going out is such an effort now. It's one of those times that inevitably make you think about life and how I hoped things would be different this year. I can be quite ok and then all of a sudden it will hit me that time is going by, first in days, then weeks then months, all without calls or a transplant. How much longer can it go on like this? How much longer can I cling on to my current level of health? Will a transplant ever happen for me? Even things like adjusting back into the "real world" after a transplant are pretty terrifying when you think about them in too much detail. I often feel everyone has there own expectations of what I will do and they don't always coincide with what I think I actually want to do. I've lived a restricted, often anti social life for so long, different from normal everyday life. It would be quite a shock to the system. Such a faraway prospect at the moment.
The BBC article has also gained me some other media bits and bobs which is great, this week I have been doing an article that will be going into the Sunday Times in a couple of weeks (I'll let you know when) it's been one of my favourite interviews :)I've also got a potential radio interview which I'm in the process of arranging which is all good awareness raising work.
I'm getting a bit more into my current uni course now too (famously last words!). I handed in my first essay of the course last week and am waiting not so patiently for my result to come through. I always find that I have a "why did I do this" few weeks when I first start work again and find it really difficult to get motivated but fingers crossed now one is done and dusted it will be slightly easier.
Healthwise I'm pretty much the same. It's so weird that these are a few months in which I thought I would be bored silly with very little to do but I seem to have had lots of odds and ends with interviews, hospital visits, friends popping in and dad taking a few days off so we can go shopping and avoid the crowds, that I've found myself pleasantly busy! Lungs are still very chanable on a hourly basis sometimes ok, other times tight, other times breathless. It makes me sad to know that I'm on more inhalers and meds than i have ever been and yet they have little effect now. Some days I take all my inhalers and 30 mins later have to remind myself that I've had everything because breathing is no easier.
Pain has been a bit of an issue, I get lots of back aches and my chest area aching and becoming very tight and spasming from where I'm sitting alot and the effort of breathing. Once everything starts to tighten you've had it everything becomes a viscious circle, breathing gets even harder, I get more breathless and panicky, lungs start to really ache and no matter how i sit/lie I can get no relief. So I've been relying on the painkillers to try and stop this before it gets too bad.
Appetite hasn't been great either so I've been finding eating a struggle too. Some days I could literally just sit with a plate of food in front of me for hours without feeling any urge to eat some. I'm having to force myself a little bit more but without making myself sick, eating as and when I feel I can.
I've also struggled a bit more mentally the last couple of days, nothing as major as other times but a little wobble that is I suppose natural at this time of year. Halloween, Bonfire night just gone and Christmas fast approaching, means everyone seems to be enjoying these times while I'm STILL stuck on the sidelines. Going out is such an effort now. It's one of those times that inevitably make you think about life and how I hoped things would be different this year. I can be quite ok and then all of a sudden it will hit me that time is going by, first in days, then weeks then months, all without calls or a transplant. How much longer can it go on like this? How much longer can I cling on to my current level of health? Will a transplant ever happen for me? Even things like adjusting back into the "real world" after a transplant are pretty terrifying when you think about them in too much detail. I often feel everyone has there own expectations of what I will do and they don't always coincide with what I think I actually want to do. I've lived a restricted, often anti social life for so long, different from normal everyday life. It would be quite a shock to the system. Such a faraway prospect at the moment.
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