Its been one of those weeks where I've been busy but not knowing what I've actually been doing!
I'm still feeling good chest wise at the moment, my back still twinges every now and then but nothing more to report for now. I'm still feeling quite tired and weak with my muscles which is only to be expected after all the back problems and with my restricted mobility and general poor health.
The week started badly but has got better. I'm not going to go into too much detail but my cf hospital have really angered me this week and has lost even more of my respect. I wish that I could go elsewhere but at this stage in the game I dont have that luxury. I want more than anything to feel safe with the people looking after me and when I dont it is very scarey. Even more reason to hope against hope that the call i need is just around the corner.
Anyway, moving on from that, feeling so tired has meant that Ive been a bit slow getting stuff done and everything takes so much longer with low lung function. I've decided that in order to be involved with things as much as possible this Christmas I need to A) space things out so i have ample time to go slowly and rest when i need to, and B) ask for help when I need it. I love Christmas so much and want to be a part of it all.
We are doing one of my favourite things, putting up the decorations. I already have my beautiful christmas tree up in my room. It is so pretty, all glittery and twinkly! Never fails to make me smile. I probably should explain that yes, I do have a tree in my bedroom and yes, I do turn my room into a grotto at Christmas! We are also putting up the decs downstairs as I speak, so the house is going to be looking very festive very soon. I promise that next time I blog I will put up photos of my snuggly boots, stripey socks, my tree, the family tree, and generally xmassy things!
I also watched Its a Wonderful Life on Friday which is my favourite Christmas film, despite making me cry every time.
Anyway I will leave you know as I have to get back to decking the halls but I will post photos as soon as possible so check back in the next few days
Love and Christmas cheer to you all xxx
PS. Also trying to make blog festive :)
Sunday, 30 November 2008
Sunday, 23 November 2008
Brrrrrr!
Morning everyone!
Fingers crossed and touching wood etc, I do seem to be feeling much more my normal self this week. The back pain still twinges but is relieved with a paracetamol when it does rather than the 2 paracetamol and two codeine duo every 6 hours that I was using. So thats all good.
My tummy seems much better too. I told you I think that the pain relief was making me sick. Unfortunately despite consulting my team before taking codeine they failed to mention that I needed to take a laxative with the drug or would end up with even more tummy troubles, which sure enough after a week was pretty uncomfortable and stress I didnt need on top of everything else. Needless to say I was not impressed. On the positive side I am much better now but am still weak and needing to regain any weight that was lost.
I've also been stuck indoors for ages, probably been out for an hour in the last two weeks. The wheelchair (and oddly enough the bath) still make my back ache so its made me more restricted for the time being.
Its absolutely freezing today! This morning my mum pulled back the curtains, while I lay in my snuggly warm bed curled into a tight ball protesting at the brightness, only to see that it was snowing! Unfortunately the snow has disappeared now but it is still very cold so I have taken desperate measures and pulled out my new pink fluffy slipper boots AND my selection of over the knee stripey socks (although not worn together as that would be silly...) My mum keeps laughing at me everytime she sees me in said fluffy boots but when your feet are this comfy and warm who cares?? I promise to include a photo of both socks and slippers in my next post.
I've had loads of great feedback on the interviews for the BBC. I'm really surprised by the number of people who have said it was really good and well spoken, even better I know of at least two people that have signed the list as a result! If anyone wants to watch there is another video from the one I posted last week. Its basically most of what they filmed with me and explains in detail my life waiting. Click HERE!
Iv'e been trying to spread the video as far as poss via email to encourage people to watch it and sign up. Please feel free to do the same.
Speak to you again soon, Keep warm! xxxx
Fingers crossed and touching wood etc, I do seem to be feeling much more my normal self this week. The back pain still twinges but is relieved with a paracetamol when it does rather than the 2 paracetamol and two codeine duo every 6 hours that I was using. So thats all good.
My tummy seems much better too. I told you I think that the pain relief was making me sick. Unfortunately despite consulting my team before taking codeine they failed to mention that I needed to take a laxative with the drug or would end up with even more tummy troubles, which sure enough after a week was pretty uncomfortable and stress I didnt need on top of everything else. Needless to say I was not impressed. On the positive side I am much better now but am still weak and needing to regain any weight that was lost.
I've also been stuck indoors for ages, probably been out for an hour in the last two weeks. The wheelchair (and oddly enough the bath) still make my back ache so its made me more restricted for the time being.
Its absolutely freezing today! This morning my mum pulled back the curtains, while I lay in my snuggly warm bed curled into a tight ball protesting at the brightness, only to see that it was snowing! Unfortunately the snow has disappeared now but it is still very cold so I have taken desperate measures and pulled out my new pink fluffy slipper boots AND my selection of over the knee stripey socks (although not worn together as that would be silly...) My mum keeps laughing at me everytime she sees me in said fluffy boots but when your feet are this comfy and warm who cares?? I promise to include a photo of both socks and slippers in my next post.
I've had loads of great feedback on the interviews for the BBC. I'm really surprised by the number of people who have said it was really good and well spoken, even better I know of at least two people that have signed the list as a result! If anyone wants to watch there is another video from the one I posted last week. Its basically most of what they filmed with me and explains in detail my life waiting. Click HERE!
Iv'e been trying to spread the video as far as poss via email to encourage people to watch it and sign up. Please feel free to do the same.
Speak to you again soon, Keep warm! xxxx
Monday, 17 November 2008
I'm ready for my close up......
Hey everyone,
Just a quick update for now a proper blog to follow later this week. As always thank you for your well wishes and support, they are much appreciated. It has been very slow tedious progress this week and I must admit I have been feeling very low and hopeless.
Being in pain and uncomfortable, combined with emotionally and physical set back of being ill and a fortnight of interrupted sleep due to pain has taken a big toll on me. I haven't been doing anything at all and spent most of the time listless and just gazing into space, that is very unlike me. However I will say I have seen an improvemnet since yesterday and for the first time in two weeks am beginning to feel better. Fingers crossed later this week i will be back on track once again and can tell you the full story.
I will leave you with a (debatable!) treat, despite being so sorry for myself I did manage to spend an hour on Friday filming a piece about transplant for the BBC. Its been shown repeatedly today in response to the news about the UK not taking up presumed consent for organ donations. You can view it here
Enjoy! and updates soon...
Much love to you all x
Just a quick update for now a proper blog to follow later this week. As always thank you for your well wishes and support, they are much appreciated. It has been very slow tedious progress this week and I must admit I have been feeling very low and hopeless.
Being in pain and uncomfortable, combined with emotionally and physical set back of being ill and a fortnight of interrupted sleep due to pain has taken a big toll on me. I haven't been doing anything at all and spent most of the time listless and just gazing into space, that is very unlike me. However I will say I have seen an improvemnet since yesterday and for the first time in two weeks am beginning to feel better. Fingers crossed later this week i will be back on track once again and can tell you the full story.
I will leave you with a (debatable!) treat, despite being so sorry for myself I did manage to spend an hour on Friday filming a piece about transplant for the BBC. Its been shown repeatedly today in response to the news about the UK not taking up presumed consent for organ donations. You can view it here
Enjoy! and updates soon...
Much love to you all x
Thursday, 6 November 2008
OWWWWWWW!!!!
Owwwwww! shouted as loud as possible would be the best way to describe this week.
On Monday I woke up feeling fine, did my physio and then got back into bed to do one of my nebulisers just as usual. Completely out of the blue I had a stabbing pain and tightness gripping the lower left side of my back, it was so bad I screamed! My mum rushed in and tried to massage where it was hurting but I couldn't even bear to let her touch me. I became really worried because the pain was so severe and I had no idea what was happening. My mum phoned the GP who agreed to do a home visit.
An hour or so later the pain was just as bad and the GP arrived. She was absolutely fantastic, and said that in my position healthwise we had done the absolutely right thing in calling her. She tested my urine to rule out any infection, listened to my chest, took my pulse and felt my tummy and back. She concluded that the large major muscle in my back was in spasm, it felt very tight, tender and raised. I was happy to at least know what was going on and was advised to use heat packs, baths and pain killers to ease the discomfort.
I have liver disease because of my CF and therefore can't take asprin or ibroufen based drugs, so used paracetamol and constant heat packs. But by the evening I was in complete agony. I could hardly move, was crying with the pain and being very sick because of the intesity of the pain. We ended up at the emergency dr's at 11.30pm. They again tested my urine which was clear and agreed that it was definately spasms, they prescribed some heavy duty pain relief and anti spasm tablets.
When we got home I was exhausted but didnt get much sleep at all.
The tablets made me vomit constantly and the pain has been unbearable. To cut a long story short I managed to get some new painkillers which were better but it was only on Thursday that we cracked the dosage problem to provide me with some proper relief. My sister works with a physiotherapist and she kindly came to visit me to she if she could help. She has lent me a TENS machine which is brilliant and has really helped to dial the pain down.
As you can imagine it has been a very stressful week again. Both me and my mum have hardly slept each night, I am still in pain although its less than it was. I feel really tired and have been virtually bed bound all week. I'm quite unsteady on my feet due to the pain killers and once again my tummy has taken a severe battering with violent sickness and extreme acid production due again, to the powerful drugs in my already delicate stomach. Last night I was sick with pure green acid that burnt all my throat mouth and nose. I also have big scratches on my back from the boiling hot water bottles I've been using (they were the only relief i had while sorting out dosage). Once again all this has been a huge blow to my weigh gain hopes, (I havent weighed this week) and my general mood.
I'm hoping things are starting to improve now,but it is very slow progress. The doctors say it can be up to a few weeks for this to ease. I'm sorry if I haven't been good at replying to texts , messages etc but it has been so rough.
Hope to have better news next time.
xxx
On Monday I woke up feeling fine, did my physio and then got back into bed to do one of my nebulisers just as usual. Completely out of the blue I had a stabbing pain and tightness gripping the lower left side of my back, it was so bad I screamed! My mum rushed in and tried to massage where it was hurting but I couldn't even bear to let her touch me. I became really worried because the pain was so severe and I had no idea what was happening. My mum phoned the GP who agreed to do a home visit.
An hour or so later the pain was just as bad and the GP arrived. She was absolutely fantastic, and said that in my position healthwise we had done the absolutely right thing in calling her. She tested my urine to rule out any infection, listened to my chest, took my pulse and felt my tummy and back. She concluded that the large major muscle in my back was in spasm, it felt very tight, tender and raised. I was happy to at least know what was going on and was advised to use heat packs, baths and pain killers to ease the discomfort.
I have liver disease because of my CF and therefore can't take asprin or ibroufen based drugs, so used paracetamol and constant heat packs. But by the evening I was in complete agony. I could hardly move, was crying with the pain and being very sick because of the intesity of the pain. We ended up at the emergency dr's at 11.30pm. They again tested my urine which was clear and agreed that it was definately spasms, they prescribed some heavy duty pain relief and anti spasm tablets.
When we got home I was exhausted but didnt get much sleep at all.
The tablets made me vomit constantly and the pain has been unbearable. To cut a long story short I managed to get some new painkillers which were better but it was only on Thursday that we cracked the dosage problem to provide me with some proper relief. My sister works with a physiotherapist and she kindly came to visit me to she if she could help. She has lent me a TENS machine which is brilliant and has really helped to dial the pain down.
As you can imagine it has been a very stressful week again. Both me and my mum have hardly slept each night, I am still in pain although its less than it was. I feel really tired and have been virtually bed bound all week. I'm quite unsteady on my feet due to the pain killers and once again my tummy has taken a severe battering with violent sickness and extreme acid production due again, to the powerful drugs in my already delicate stomach. Last night I was sick with pure green acid that burnt all my throat mouth and nose. I also have big scratches on my back from the boiling hot water bottles I've been using (they were the only relief i had while sorting out dosage). Once again all this has been a huge blow to my weigh gain hopes, (I havent weighed this week) and my general mood.
I'm hoping things are starting to improve now,but it is very slow progress. The doctors say it can be up to a few weeks for this to ease. I'm sorry if I haven't been good at replying to texts , messages etc but it has been so rough.
Hope to have better news next time.
xxx
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