Half a sleep to go...
The taxi is coming at 3.45am so heading to bed shortly for the last 1/2 sleep before Florida! I am all packed and ready so looking forward to some much needed sunshine now. I will only be too glad to leave behind the snow we have been having - hard to believe it's nearly April!
Seb is at his Aunty Nan's and seemed fine when we left - I think he will have a great time! He has been moping about for days after seeing the cases come out the loft but I know he will settle once we are away. Hopefully he will behave himself :-)
Well I better go and get organised and try to get a few hours kip before the very long flight. This time tomorrow I will be roasty toasty in Miami, then Saturday we drive up to the villa in Orlando. The villa does have internet so might get to update but then again might be far too busy meeting Mickey Mouse and pals ;-)
Lots of pics to follow..
Wednesday, March 31, 2010
Saturday, March 27, 2010
Tom the Goldfish (1984-2010)
My goldfish died today at the grand old age of 26! I got him at the pet shop when I was 5 years old after failing to win a goldfish at the Galaday that year. He was called Tom - I had another fish called Tim (I was very original with names ;-)) Mum has been caring for him in his latter years as I left him at home when I went to uni thinking he wouldn't be around for much longer. How wrong was I! Over the years he lost all his gold colour and was a pale silvery white and to be honest quite freaky looking. He was a tough wee thing though - there was one time I came home from school and found the shelf had fallen off my wall and the two fish tanks were lying upside down on the carpet. The other fish was lying dead but we couldn't find Tom. I was rather upset and mum came to try and help me look. After much searching we eventually found him under the wardrobe, presumed dead, but when I went to lift him out he flipped over! I rushed to the bathroom and put him into a sink full of water where he lay on his side rather lifeless. Clearly I always wanted to be a doctor because for some reason I thought it was a good idea to get a syringe and inject lots of air into the water to try and increase the oxygen content (fish do take oxygen from the water). Well it worked! A few minutes later and Tom was swimming round the sink quite the thing. It was something of a miracle as we were looking for him for at least half an hour (and I don't even know at what point the tanks fell down). I used to keep the tank in the bathroom after that - it was relaxing watching him in the bath. Visitors did complain that he was staring at them on the toilet though...
Actually we thought for a while he was blind as he didn't seem to notice food in the tank - probably cataracts and I think he may have been demented too ;-) I think 26 years is mighty impressive but he must have been rather bored looking at the same four walls for all that time. I do hope they are right about the 3 second memory. Dad felt too guilty to flush the wee guy so he is now buried in the garden beside our old dog Keisha.
I felt the wee guy was owed at least a blog entry in his memory, so goodbye wee Tom!
My goldfish died today at the grand old age of 26! I got him at the pet shop when I was 5 years old after failing to win a goldfish at the Galaday that year. He was called Tom - I had another fish called Tim (I was very original with names ;-)) Mum has been caring for him in his latter years as I left him at home when I went to uni thinking he wouldn't be around for much longer. How wrong was I! Over the years he lost all his gold colour and was a pale silvery white and to be honest quite freaky looking. He was a tough wee thing though - there was one time I came home from school and found the shelf had fallen off my wall and the two fish tanks were lying upside down on the carpet. The other fish was lying dead but we couldn't find Tom. I was rather upset and mum came to try and help me look. After much searching we eventually found him under the wardrobe, presumed dead, but when I went to lift him out he flipped over! I rushed to the bathroom and put him into a sink full of water where he lay on his side rather lifeless. Clearly I always wanted to be a doctor because for some reason I thought it was a good idea to get a syringe and inject lots of air into the water to try and increase the oxygen content (fish do take oxygen from the water). Well it worked! A few minutes later and Tom was swimming round the sink quite the thing. It was something of a miracle as we were looking for him for at least half an hour (and I don't even know at what point the tanks fell down). I used to keep the tank in the bathroom after that - it was relaxing watching him in the bath. Visitors did complain that he was staring at them on the toilet though...
Actually we thought for a while he was blind as he didn't seem to notice food in the tank - probably cataracts and I think he may have been demented too ;-) I think 26 years is mighty impressive but he must have been rather bored looking at the same four walls for all that time. I do hope they are right about the 3 second memory. Dad felt too guilty to flush the wee guy so he is now buried in the garden beside our old dog Keisha.
I felt the wee guy was owed at least a blog entry in his memory, so goodbye wee Tom!
Thursday, March 25, 2010
Jac is back...
I have been feeling a lot better this week ... at last! Hopefully this means I will be in fab condition for my holiday - less than 1 week to go :-)
Last weekend I had to get some new jeans because of the weight I lost. Any excuse eh ;-) I did just get some cheap ones though and luckily also had some smaller trousers stashed in the loft in case I did lose weight again so have these for my holidays. I feel very disorganised for holidays at the moment and have been too tired after work this week to do much sorting. I did get all my clothes out last weekend, tried half them on and then put them all back because I couldn't decide what to take! It isn't a huge luggage allowance and I want some room in case I buy anything over there - so need to pack carefully. I also need to iron most of the summer things but am trying to ignore that fact for the time being. I have made lists though and I do love lists. I met my friend for lunch today and we were talking about lists and how satisfying it is to tick things off. We also did both admit to the cheat of adding extra things to the list after you have done them just so you can tick them off haha! Worryingly my medication list is longer than my clothes list and I guess will take up my entire hand luggage allowance ;-)
We went to see Alice in Wonderland in 3D at the cinema which I really enjoyed. The story is a mixture of the original two books but all the memorable characters are still there and the 3D technology allows for an even more magical experience. I do keep saying that I should go to the cinema more often. I used to go a lot more when I was younger then I stopped going when I was more unwell - largely because I couldn't get through a film without coughing loads - and then I never really got back into the habit after my transplant. It is nice to go out and see a film for some total escapism because when I watch a film at home I am so easily distracted and will end up tapping away on my laptop at the same time and then missing half the film. I don't find it easy to switch off so sitting my in a dark room where I can't do anything but watch the film is probably a good thing.
On Tuesday I got my hair cut and took Seb for another visit to Nan's. We left him for a couple of hours and he didn't seem that fussed to see me when we went back haha. I think I will miss him more than he misses me to be honest. I am dreading getting the cases out this weekend though as he will go all huffy and no one likes a huffy dog..
Anyway I better go and do something useful. I think I will start by making a list...
I have been feeling a lot better this week ... at last! Hopefully this means I will be in fab condition for my holiday - less than 1 week to go :-)
Last weekend I had to get some new jeans because of the weight I lost. Any excuse eh ;-) I did just get some cheap ones though and luckily also had some smaller trousers stashed in the loft in case I did lose weight again so have these for my holidays. I feel very disorganised for holidays at the moment and have been too tired after work this week to do much sorting. I did get all my clothes out last weekend, tried half them on and then put them all back because I couldn't decide what to take! It isn't a huge luggage allowance and I want some room in case I buy anything over there - so need to pack carefully. I also need to iron most of the summer things but am trying to ignore that fact for the time being. I have made lists though and I do love lists. I met my friend for lunch today and we were talking about lists and how satisfying it is to tick things off. We also did both admit to the cheat of adding extra things to the list after you have done them just so you can tick them off haha! Worryingly my medication list is longer than my clothes list and I guess will take up my entire hand luggage allowance ;-)
We went to see Alice in Wonderland in 3D at the cinema which I really enjoyed. The story is a mixture of the original two books but all the memorable characters are still there and the 3D technology allows for an even more magical experience. I do keep saying that I should go to the cinema more often. I used to go a lot more when I was younger then I stopped going when I was more unwell - largely because I couldn't get through a film without coughing loads - and then I never really got back into the habit after my transplant. It is nice to go out and see a film for some total escapism because when I watch a film at home I am so easily distracted and will end up tapping away on my laptop at the same time and then missing half the film. I don't find it easy to switch off so sitting my in a dark room where I can't do anything but watch the film is probably a good thing.
On Tuesday I got my hair cut and took Seb for another visit to Nan's. We left him for a couple of hours and he didn't seem that fussed to see me when we went back haha. I think I will miss him more than he misses me to be honest. I am dreading getting the cases out this weekend though as he will go all huffy and no one likes a huffy dog..
Anyway I better go and do something useful. I think I will start by making a list...
Friday, March 19, 2010
On the Up?
I hope so! I haven't updated because there was no change over the past week so nothing to report. Yesterday however I did feel a bit better so thought I better let everyone know I am still alive ;-)
Last week the sickness had been better but it came back last weekend so I headed up to the hospital on Tuesday. By this time the joints weren't as bad but I was back to just feeling non specifically 'unwell' with a borderline temperature and nausea. I have lost about 4kg in the few weeks which isn't ideal as my weight is now below normal again but I am sure I will be able to regain that with some tasty treats. When I saw the doctor it seemed like my bowel was obstructing again which might explain why the nausea came back - especially if I have had a virus and my threshold for feeling sick is low at the moment due to this. In CF the sticky mucus is also present in the bowel (as well as lungs, sinuses etc) which can cause obstructions so I have increased my medication for this. I also explained how bad my sinuses are at the moment because I am not sure if this is adding to the unwell feeling and might be causing the flickers in temperature. The doc wants me to increase the antbiotic I restarted last month to a higher dose and continue the steroid drops for a few months. He is going to refer me back to ENT again just to make sure we have exhausted every avenue as he is really worried about me taking any stronger painkillers (due to adverse effects on the bowel). The pain is getting me down quite a lot as it is there every day when I wake up and never goes away. It gets tiring after a while and I feel it holds me back from really making the most of these lungs but hopefully the new measures will help a bit.
So since Tuesday the sickness has died down again and I am eating better now - trying to get some high calorie food in to build me back up again. I am sure being underweight is not helping my energy levels! Yesterday I didn't feel as 'unwell' and got on a bit better at work and managed to potter around the house in the afternoon so that was a move in the right direction. I am hopeful that I will start to see some big changes over the next few days.
I have been at work this week and it wasn't too bad. I know people think I push myself too much but after dealing with 30 years of ill health I know my own body pretty well. I have become better over the years at accepting help and at pacing myself (honestly). I have had a very quiet time over the past few weeks - hardly taken Seb out, watched a lot of TV and not a lot else. This 'resting' is all very well in principle but it does nothing for your mental state. If I can go to work then it is a good thing - it distracts me, it often makes me feel a bit better and gives me a focus. Trust me, I'm a doctor.
It was also Andrew's birthday last week - poor boy didn't get much of a celebration with me moping about! I did go into M+S on my way home and picked up some take away style things for dinner and a cake as a feeble gesture. I will have to make a proper cake when I am fully recovered :-) It will be both my birthday and mums when we are in Florida ( less than 2 weeks to go now!) so that will be very different. I have told Andrew to let me buy something when we are there... lots of shopping malls :-)
I have a quiet weekend planned and then hopefully catch up with some friends next week before we go on holiday. I have cancelled lots of plans to meet up in the past few weeks and have not seen anyone for about a month. That is rather depressing. I think I need some friend medicine to be honest! I also have a haircut next week which is good for the soul (as long as it goes well haha). It is through in Bathgate so I am also hoping to take Seb to Nan and Bob's for another visit. This is where he is staying when we are in Florida so we are trying to take him for a few visits to make it seem more familiar. He will be totally fine though - as long as he gets walks and hugs he is a happy boy. In fact he probably wont be that fussed about coming home - he is really not that loyal ;-) So a few things to keep me busy and hopefully my next post will be all good news...
I hope so! I haven't updated because there was no change over the past week so nothing to report. Yesterday however I did feel a bit better so thought I better let everyone know I am still alive ;-)
Last week the sickness had been better but it came back last weekend so I headed up to the hospital on Tuesday. By this time the joints weren't as bad but I was back to just feeling non specifically 'unwell' with a borderline temperature and nausea. I have lost about 4kg in the few weeks which isn't ideal as my weight is now below normal again but I am sure I will be able to regain that with some tasty treats. When I saw the doctor it seemed like my bowel was obstructing again which might explain why the nausea came back - especially if I have had a virus and my threshold for feeling sick is low at the moment due to this. In CF the sticky mucus is also present in the bowel (as well as lungs, sinuses etc) which can cause obstructions so I have increased my medication for this. I also explained how bad my sinuses are at the moment because I am not sure if this is adding to the unwell feeling and might be causing the flickers in temperature. The doc wants me to increase the antbiotic I restarted last month to a higher dose and continue the steroid drops for a few months. He is going to refer me back to ENT again just to make sure we have exhausted every avenue as he is really worried about me taking any stronger painkillers (due to adverse effects on the bowel). The pain is getting me down quite a lot as it is there every day when I wake up and never goes away. It gets tiring after a while and I feel it holds me back from really making the most of these lungs but hopefully the new measures will help a bit.
So since Tuesday the sickness has died down again and I am eating better now - trying to get some high calorie food in to build me back up again. I am sure being underweight is not helping my energy levels! Yesterday I didn't feel as 'unwell' and got on a bit better at work and managed to potter around the house in the afternoon so that was a move in the right direction. I am hopeful that I will start to see some big changes over the next few days.
I have been at work this week and it wasn't too bad. I know people think I push myself too much but after dealing with 30 years of ill health I know my own body pretty well. I have become better over the years at accepting help and at pacing myself (honestly). I have had a very quiet time over the past few weeks - hardly taken Seb out, watched a lot of TV and not a lot else. This 'resting' is all very well in principle but it does nothing for your mental state. If I can go to work then it is a good thing - it distracts me, it often makes me feel a bit better and gives me a focus. Trust me, I'm a doctor.
It was also Andrew's birthday last week - poor boy didn't get much of a celebration with me moping about! I did go into M+S on my way home and picked up some take away style things for dinner and a cake as a feeble gesture. I will have to make a proper cake when I am fully recovered :-) It will be both my birthday and mums when we are in Florida ( less than 2 weeks to go now!) so that will be very different. I have told Andrew to let me buy something when we are there... lots of shopping malls :-)
I have a quiet weekend planned and then hopefully catch up with some friends next week before we go on holiday. I have cancelled lots of plans to meet up in the past few weeks and have not seen anyone for about a month. That is rather depressing. I think I need some friend medicine to be honest! I also have a haircut next week which is good for the soul (as long as it goes well haha). It is through in Bathgate so I am also hoping to take Seb to Nan and Bob's for another visit. This is where he is staying when we are in Florida so we are trying to take him for a few visits to make it seem more familiar. He will be totally fine though - as long as he gets walks and hugs he is a happy boy. In fact he probably wont be that fussed about coming home - he is really not that loyal ;-) So a few things to keep me busy and hopefully my next post will be all good news...
Thursday, March 11, 2010
Bit fed up now
So I made it into work yesterday and got through clinic and a pile of paperwork - unfortunately my secretary is on annual leave this week so I kept getting handed little notes from patients calling about appointments I cancelled last week! At least I have held the fort and not fallen any further behind. I didn't make it into teaching this morning but I think that is allowed given the circumstances. I am not feeling a whole lot better than earlier in the week though - I feel a bit stuck at the moment. The main problem is now joint pain and stiffness with a general unwell feeling which I just can't shake off. I decided this morning that I really needed to stop wallowing and try and get moving so I went to run a couple of errands - just a 5 minute walk to post office but took me ages to recover when I got back! It's fair enough trying to rest up but sitting about also can make you feel lousy and even more tired so I have to try to keep going. I haven't been sleeping very well with night sweats and waking up a lot so that is probably not helping.
I do feel a bit pathetic at the moment because I have several friends who are waiting on their transplant calls and here I am at the other side moaning and moaning. I keep trying to stay focused and not lose perspective. I was looking back at my blog and felt a similar way last January after the fundoplication surgery - but I did get better and back to normal so must keep that in mind. I think feeling unwell also brings back a lot of emotions and feelings surrounding the pre transplant journey which I suspect is what makes it harder. On a positive transplant note however was the good news that one of the LLTGL Patient ambassadors, Rachael Wakefield, got her lung transplant yesterday. She was very quickly running out of time when the call came. I wish her all the best in her recovery and hope it is a smooth journey with a wonderful outcome.
So I made it into work yesterday and got through clinic and a pile of paperwork - unfortunately my secretary is on annual leave this week so I kept getting handed little notes from patients calling about appointments I cancelled last week! At least I have held the fort and not fallen any further behind. I didn't make it into teaching this morning but I think that is allowed given the circumstances. I am not feeling a whole lot better than earlier in the week though - I feel a bit stuck at the moment. The main problem is now joint pain and stiffness with a general unwell feeling which I just can't shake off. I decided this morning that I really needed to stop wallowing and try and get moving so I went to run a couple of errands - just a 5 minute walk to post office but took me ages to recover when I got back! It's fair enough trying to rest up but sitting about also can make you feel lousy and even more tired so I have to try to keep going. I haven't been sleeping very well with night sweats and waking up a lot so that is probably not helping.
I do feel a bit pathetic at the moment because I have several friends who are waiting on their transplant calls and here I am at the other side moaning and moaning. I keep trying to stay focused and not lose perspective. I was looking back at my blog and felt a similar way last January after the fundoplication surgery - but I did get better and back to normal so must keep that in mind. I think feeling unwell also brings back a lot of emotions and feelings surrounding the pre transplant journey which I suspect is what makes it harder. On a positive transplant note however was the good news that one of the LLTGL Patient ambassadors, Rachael Wakefield, got her lung transplant yesterday. She was very quickly running out of time when the call came. I wish her all the best in her recovery and hope it is a smooth journey with a wonderful outcome.
Tuesday, March 09, 2010
Small Update
I did go back to work yesterday and survived. Just. Luckily a number of patients didn't turn up for clinic which gave me time to spend two hours reallocating all the ones I cancelled. Can't really afford to be off again now as have no clinic spaces until May...argh. Anyway at least I got that done, saw a few people who did turn up and got through some paperwork. I have to do a lot of things like DLA forms for patients and try to get these done as quickly as possible - having been on the other side of benefit system I know that the it can seem a very long wait for people waiting on such decisions.
I did feel pretty rough by the time I got home and my appetite seems to have vanished again. Today has not been great and I went back to bed for a couple of hours this afternoon - much to Seb's disgust as he would much rather go a nice long walk! All my joints have flared up and I feel exhausted which are likely to all just be post viral symptoms but my temperature does seem to have settled so I am sure it's just taking some time to recover now.
Seb is a bit bored with my lack of enthusiasm but at least he has his dog walker tomorrow - last week they were away for over two hours up the hills and he seems to have a great time. They left him a wee present yesterday as a thank you for our custom and because he is apparently such a 'good wee boy' (is this the same dog?!). It was a pale gold collar with crystal letters saying STAR! He has been wearing it today and my mother in law Anne will think it is fab - she has been trying to get him into some glitz for years haha. Andrew on the other hand is not so sure..
I will keep everyone posted on how I am feeling later this week (hopefully good news!)
I did go back to work yesterday and survived. Just. Luckily a number of patients didn't turn up for clinic which gave me time to spend two hours reallocating all the ones I cancelled. Can't really afford to be off again now as have no clinic spaces until May...argh. Anyway at least I got that done, saw a few people who did turn up and got through some paperwork. I have to do a lot of things like DLA forms for patients and try to get these done as quickly as possible - having been on the other side of benefit system I know that the it can seem a very long wait for people waiting on such decisions.
I did feel pretty rough by the time I got home and my appetite seems to have vanished again. Today has not been great and I went back to bed for a couple of hours this afternoon - much to Seb's disgust as he would much rather go a nice long walk! All my joints have flared up and I feel exhausted which are likely to all just be post viral symptoms but my temperature does seem to have settled so I am sure it's just taking some time to recover now.
Seb is a bit bored with my lack of enthusiasm but at least he has his dog walker tomorrow - last week they were away for over two hours up the hills and he seems to have a great time. They left him a wee present yesterday as a thank you for our custom and because he is apparently such a 'good wee boy' (is this the same dog?!). It was a pale gold collar with crystal letters saying STAR! He has been wearing it today and my mother in law Anne will think it is fab - she has been trying to get him into some glitz for years haha. Andrew on the other hand is not so sure..
I will keep everyone posted on how I am feeling later this week (hopefully good news!)
Friday, March 05, 2010
I got a wee fright..
I haven't been blogging because I have not been very well for the past 2 weeks and am only now just turning the corner. I think I have basically had a viral sick bug but due to being immunosuppressed it hit me like a ton of bricks and I really did think something more serious was happening. Andrew had a sudden onset sick bug lasting about 24 hrs a couple of weeks ago and a couple of days after I started to feel nauseas with a fever and general unwell-ness. I crawled in from work on the Monday went straight to bed and thought a couple of days would see me right. I was wrong. By last Wednesday I was feeling worse than ever and mum was dispatched to come and look after me - she only went home yesterday (although I did give her weekend leave haha). I ended up getting some tests at hospital last weekend because in case the persisting fever was a sign of something dodgy with my lungs. They were satisfied my lungs were ok so escaped home only to have to go back again on Tuesday as I was no better. Again it was a confusing picture because I still had a persistent low grade fever, felt sick but there was no evidence of bacterial infection and lungs seemed ok - so had to assume I was just struggling to fight off a viral infection. On top of this my bowel appeared to be obstructing (probably due to dehydration on top of painkillers for sinuses) so had to get some treatment for that which is bad enough when you feel well! The one thing I have discovered is that I am physically unable to actually be sick due to the fundoplication surgery I had last year (it tightens the valve at bottom of gullet to stop acid coming up). I had always assumed that if I really really needed to be sick I could - but I can't. This is not pleasant at all - although the positive side is that I keep my anti-rejections down because otherwise I would need admission for IV anti rejections. Every cloud and all that.
Yesterday was the first day I noticed any sign of improvement and actually got dressed and didn't spend the whole day lying in bed/on the sofa. I just feel pretty washed out now but hopefully this is me on the up now and the weekend may bring a big improvement. I spoke to the transplant team a couple of times and they said they have had lots of patients with the same symptoms and it is taking ages to clear up. I was reassured to hear this as your mind does start to wander along the path of all the weird and wonderful post transplant complications I could encounter. In the last couple of weeks I was really scared at times - I cried a lot - in retrospect that seems a bit over the top for a viral illness, but the point was that I didn't know this for sure. Pre transplant I knew my body so well and although I was often very unwell it was predictable. I knew when I needed antibiotics, when I needed hospital and how long to expect recovery to take. I knew my health inside out. Now I feel like I am always dealing with the unknown and it can be so unsettling. It is the fear that I am somehow always living on borrowed time and with baited breath you just pray the bubble is never going to burst.
Ironically I had also been about to blog that I had reached 1 year being back to work on the 17th February with NO time off sick! Not quite the case now having been off for 2 weeks - but still a year without time off was pretty good going and perhaps I can do the same again. Ideally another week off would be nice but if I can get back after the weekend then I will. My job before transplant was supernumerary so the work would be picked up if I was off - but this time it wont. I have cancelled 3 clinics so far which I need to reschedule and given that I was already booked well into April/May it might be tricky. If I go back I do promise to pace myself though and not take on anything I don't need to at the moment. At least my job is not a physical one so I do get to sit all day :-)
I just need to get myself better and strong for the big holiday now! I ended up having to pay nearer £2000 for the travel insurance because the policy had an error in the medical screening so original quote was wrong. If I get admitted to hospital I will invalidate the policy and can kiss goodbye to Florida - so thank goodness they didn't take me in last week and hopefully it will be onwards and upwards now. At least I have something nice to focus on and I really do feel I need a holiday - it's only 4 weeks away now :-)
I will update again soon with how the recovery is going and I am sure it will be all good news ...
I haven't been blogging because I have not been very well for the past 2 weeks and am only now just turning the corner. I think I have basically had a viral sick bug but due to being immunosuppressed it hit me like a ton of bricks and I really did think something more serious was happening. Andrew had a sudden onset sick bug lasting about 24 hrs a couple of weeks ago and a couple of days after I started to feel nauseas with a fever and general unwell-ness. I crawled in from work on the Monday went straight to bed and thought a couple of days would see me right. I was wrong. By last Wednesday I was feeling worse than ever and mum was dispatched to come and look after me - she only went home yesterday (although I did give her weekend leave haha). I ended up getting some tests at hospital last weekend because in case the persisting fever was a sign of something dodgy with my lungs. They were satisfied my lungs were ok so escaped home only to have to go back again on Tuesday as I was no better. Again it was a confusing picture because I still had a persistent low grade fever, felt sick but there was no evidence of bacterial infection and lungs seemed ok - so had to assume I was just struggling to fight off a viral infection. On top of this my bowel appeared to be obstructing (probably due to dehydration on top of painkillers for sinuses) so had to get some treatment for that which is bad enough when you feel well! The one thing I have discovered is that I am physically unable to actually be sick due to the fundoplication surgery I had last year (it tightens the valve at bottom of gullet to stop acid coming up). I had always assumed that if I really really needed to be sick I could - but I can't. This is not pleasant at all - although the positive side is that I keep my anti-rejections down because otherwise I would need admission for IV anti rejections. Every cloud and all that.
Yesterday was the first day I noticed any sign of improvement and actually got dressed and didn't spend the whole day lying in bed/on the sofa. I just feel pretty washed out now but hopefully this is me on the up now and the weekend may bring a big improvement. I spoke to the transplant team a couple of times and they said they have had lots of patients with the same symptoms and it is taking ages to clear up. I was reassured to hear this as your mind does start to wander along the path of all the weird and wonderful post transplant complications I could encounter. In the last couple of weeks I was really scared at times - I cried a lot - in retrospect that seems a bit over the top for a viral illness, but the point was that I didn't know this for sure. Pre transplant I knew my body so well and although I was often very unwell it was predictable. I knew when I needed antibiotics, when I needed hospital and how long to expect recovery to take. I knew my health inside out. Now I feel like I am always dealing with the unknown and it can be so unsettling. It is the fear that I am somehow always living on borrowed time and with baited breath you just pray the bubble is never going to burst.
Ironically I had also been about to blog that I had reached 1 year being back to work on the 17th February with NO time off sick! Not quite the case now having been off for 2 weeks - but still a year without time off was pretty good going and perhaps I can do the same again. Ideally another week off would be nice but if I can get back after the weekend then I will. My job before transplant was supernumerary so the work would be picked up if I was off - but this time it wont. I have cancelled 3 clinics so far which I need to reschedule and given that I was already booked well into April/May it might be tricky. If I go back I do promise to pace myself though and not take on anything I don't need to at the moment. At least my job is not a physical one so I do get to sit all day :-)
I just need to get myself better and strong for the big holiday now! I ended up having to pay nearer £2000 for the travel insurance because the policy had an error in the medical screening so original quote was wrong. If I get admitted to hospital I will invalidate the policy and can kiss goodbye to Florida - so thank goodness they didn't take me in last week and hopefully it will be onwards and upwards now. At least I have something nice to focus on and I really do feel I need a holiday - it's only 4 weeks away now :-)
I will update again soon with how the recovery is going and I am sure it will be all good news ...
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