*is a bad blogger and hasn't blogged for far too long!*
Sooooooo... Nothing much has happened in Cookieland so I thought I'd post this instead.
1. The number of nebs I've had in the last week
2. The number of kids i'm babysitting this weekend...
3. The number of weeks til I can legally get drunk!
4. The number of days til I meet a certain AUKer for the 3rd time!
5. The number of hours til Casualty's on...
6.The age I was when I was diagnosed with asthma
7. The number of times my family have come into my room and given me wierd looks for listening to classic CBBC show theme tunes on youtube!!
8. The number of A level modules I sat in January!
9. When added to the next number, the date in April when I will be abseiling off the Forth Rail Bridge for AUK!
10. The number of empty Lucozade bottles I can see from my bed...
Saturday 28 March 2009
Tuesday 24 March 2009
Holiday
I survived my holiday, it was very tiring. I think this is the problem with going somewhere different. You cannot judge how far things are going to be. For example when i arrived at the guiding house (waddow hall) the walk from the car park to the house had my head spinning and i was coughing lots. This in itself made me very tired. So more trips to the car to unpack had me quite worn out and then to discover it was lots of stairs more than a house flight up to my room. By the time i got to my room i had to have a sleep as i was exhausted not a great start to what i hoped would be a restful holiday.
The rest of the holiday continued in much the same way. An hour and half of singing and i was coughing and had a tight chest. More walking around the house to get to food and other things i would need. Back up the stairs. I get to bed and could not sleep because my chest was really bad. This due to all the physcial activity i had been doing. The saturday followed in much the same suit accept i did 8 hours of singing in total and a lot more walking. Yet another night of coughing followed. Did not get much sleep. Sunday carried on as the day before, i was almost too breathless to eat, just from the amount of walking that was required. By the time i got home sunday evening i was completely exhausted. That night i slept 14 hours waking a few times coughing.
Despite the weekend tiring me out i had a fantastic time being around people and talking to loads of different people, they were all interested in my french knitting. I also purchased some more badges to sew on to my camp blanket. I learnt lots of new songs and got better at playing my guitar. Thankfully this week is quite quiet so i can have a rest, a well needed one!
The rest of the holiday continued in much the same way. An hour and half of singing and i was coughing and had a tight chest. More walking around the house to get to food and other things i would need. Back up the stairs. I get to bed and could not sleep because my chest was really bad. This due to all the physcial activity i had been doing. The saturday followed in much the same suit accept i did 8 hours of singing in total and a lot more walking. Yet another night of coughing followed. Did not get much sleep. Sunday carried on as the day before, i was almost too breathless to eat, just from the amount of walking that was required. By the time i got home sunday evening i was completely exhausted. That night i slept 14 hours waking a few times coughing.
Despite the weekend tiring me out i had a fantastic time being around people and talking to loads of different people, they were all interested in my french knitting. I also purchased some more badges to sew on to my camp blanket. I learnt lots of new songs and got better at playing my guitar. Thankfully this week is quite quiet so i can have a rest, a well needed one!
Monday 23 March 2009
On the other side
So as you can see from Kat's post her visit didn't go quite as planned!
We met up on the weds 11th march, I had an appt at the hosp that day so it was a quick dash back to mine and then on to the hosp with a few nebs in between, I hate the train lol!
The hosp didn't go quite as I liked as my chest is very productive and has been for months sometimes though the bug I grow in my sputum acts up a bit and causes me more symptoms, this is what it has been doing lately so I gave a sample and was told to do 10 mins of chest physio every hour pffft every hour! Lung function was down from 40% to 26% oops. Collected some subcut supplies and con told me he would call with the results and then get started on abx.
So after the Hosp we were pretty much to knackered to do anything. Kat had her neb out alot but I know when I'm not right I hate the fuss so just ignored it.
The next day Kat was still nebbing quite a bit but she said she was ok so off we went bowling and then the pictures.
Whilst in the pics Kat checked her sats on her portable monitor but we both refused to believe the 73% that showed up! Anyway we went to nandos after and Kat seemed a bit better!
Back to mine and Kat gets into her pjs lays on the sofa nebbing away, I think to myself shes laying down she cant be too bad, i usually have hands on knees shoulders up panting away!
She mentions maybe she needs IVs and will see how she is in an hour, Shes still talking full sentences and laying on the sofa! I decide that nope we are going to the hosp weather Kat like it or not! So I call a cab, Kat doesn't argue and gets ready getting all the more breathless eek!
We get to the hosp and Kat deteriorates further I demand that shes seen right now, so shes whisked through to triage where a silly nurse fiddles about trying to get access, straight into majors after he gives up seeing how tough Kat is to cannulate, within seconds shes seeing a doctor who listens to her chest and gets another doctor after some mumbling of silent chest shes whisked into resus.
I'm quite surprised I was allowed to stay there the whole time and only left for the x-ray.
I like to think I was quite helpful knowing Kat's history and complications, allergies etc! She was in no fit state to talk! After a few hours of nebs iv magnesium, aminophylline, copious amounts of hydrocortisone due to her addisons she was a tiny bit better but still has the silent chest. So ITU are called and its decided its best if she goes there.
Its so different being on the other side, I felt like I should have been helping in some way, suggesting the next step in treatment, its not good when you know what can happen! You see all the procedures going on that are usually happening to you in that situation. I felt so helpless!
Thankfully after a few hours in Itu and the addition of iv bricanyl she improved quite allot! phew.
I somehow felt responsible for her and even after being told to leave ITU at 2am for coughing and told to go home an rest I couldnt. I slept in the waiting room, well I dint really sleep the chairs were to uncomfy! I think I left the hosp at 7pm the next day after being there nearly 23 hours and that was only because i had not broughtt enough subcut stuff with me!
So for the next few days kat was in itu finally getting to the ward early Sunday morning after a blip Sunday night she started to improve quickly.
I on the other hand was soooo knackered and trying to not let it show, My con was on the ward on the monday and gave me my sputum results and said he was going to talk to the microbiologist as this had been going on too long and I had already had soo many different abx and I was already on them long term too grrrr.
I had a surprise for Kat on the Tuesday a fellow auker who she had not yet met but I have met twice. Lots of fun was had there!
Anyhoo I was banned from visiting from Tuesdayy by my con and resp nurse who said I was too poorly to be at the hosp everyday and needed to rest, I was soooo upset when Jackie rang me at home and said I wasn't allowed to come up to the hospital and that she was getting my abx delivered!
Kat was discharged on the Friday and after a palaver about how she was getting home she eventually sorted something out for the next day. So we had a fun last night together which included pizza yum.
Kat left on Saturday a week later than planned.
Its an experience I hope I don't have to repeat anytime soon. Seeing someone else have an asthma attack was scary and also makes me realise we are not all the same chest wise and just because I have an attack one way doesn't mean we all will if you get what I mean. We don't all wheeze and well nobody has a textbook attack!
Sorry for the ramble
Here's a pic lol!
TTFN
Clarebear
x x x
We met up on the weds 11th march, I had an appt at the hosp that day so it was a quick dash back to mine and then on to the hosp with a few nebs in between, I hate the train lol!
The hosp didn't go quite as I liked as my chest is very productive and has been for months sometimes though the bug I grow in my sputum acts up a bit and causes me more symptoms, this is what it has been doing lately so I gave a sample and was told to do 10 mins of chest physio every hour pffft every hour! Lung function was down from 40% to 26% oops. Collected some subcut supplies and con told me he would call with the results and then get started on abx.
So after the Hosp we were pretty much to knackered to do anything. Kat had her neb out alot but I know when I'm not right I hate the fuss so just ignored it.
The next day Kat was still nebbing quite a bit but she said she was ok so off we went bowling and then the pictures.
Whilst in the pics Kat checked her sats on her portable monitor but we both refused to believe the 73% that showed up! Anyway we went to nandos after and Kat seemed a bit better!
Back to mine and Kat gets into her pjs lays on the sofa nebbing away, I think to myself shes laying down she cant be too bad, i usually have hands on knees shoulders up panting away!
She mentions maybe she needs IVs and will see how she is in an hour, Shes still talking full sentences and laying on the sofa! I decide that nope we are going to the hosp weather Kat like it or not! So I call a cab, Kat doesn't argue and gets ready getting all the more breathless eek!
We get to the hosp and Kat deteriorates further I demand that shes seen right now, so shes whisked through to triage where a silly nurse fiddles about trying to get access, straight into majors after he gives up seeing how tough Kat is to cannulate, within seconds shes seeing a doctor who listens to her chest and gets another doctor after some mumbling of silent chest shes whisked into resus.
I'm quite surprised I was allowed to stay there the whole time and only left for the x-ray.
I like to think I was quite helpful knowing Kat's history and complications, allergies etc! She was in no fit state to talk! After a few hours of nebs iv magnesium, aminophylline, copious amounts of hydrocortisone due to her addisons she was a tiny bit better but still has the silent chest. So ITU are called and its decided its best if she goes there.
Its so different being on the other side, I felt like I should have been helping in some way, suggesting the next step in treatment, its not good when you know what can happen! You see all the procedures going on that are usually happening to you in that situation. I felt so helpless!
Thankfully after a few hours in Itu and the addition of iv bricanyl she improved quite allot! phew.
I somehow felt responsible for her and even after being told to leave ITU at 2am for coughing and told to go home an rest I couldnt. I slept in the waiting room, well I dint really sleep the chairs were to uncomfy! I think I left the hosp at 7pm the next day after being there nearly 23 hours and that was only because i had not broughtt enough subcut stuff with me!
So for the next few days kat was in itu finally getting to the ward early Sunday morning after a blip Sunday night she started to improve quickly.
I on the other hand was soooo knackered and trying to not let it show, My con was on the ward on the monday and gave me my sputum results and said he was going to talk to the microbiologist as this had been going on too long and I had already had soo many different abx and I was already on them long term too grrrr.
I had a surprise for Kat on the Tuesday a fellow auker who she had not yet met but I have met twice. Lots of fun was had there!
Anyhoo I was banned from visiting from Tuesdayy by my con and resp nurse who said I was too poorly to be at the hosp everyday and needed to rest, I was soooo upset when Jackie rang me at home and said I wasn't allowed to come up to the hospital and that she was getting my abx delivered!
Kat was discharged on the Friday and after a palaver about how she was getting home she eventually sorted something out for the next day. So we had a fun last night together which included pizza yum.
Kat left on Saturday a week later than planned.
Its an experience I hope I don't have to repeat anytime soon. Seeing someone else have an asthma attack was scary and also makes me realise we are not all the same chest wise and just because I have an attack one way doesn't mean we all will if you get what I mean. We don't all wheeze and well nobody has a textbook attack!
Sorry for the ramble
Here's a pic lol!
TTFN
Clarebear
x x x
Thursday 19 March 2009
Going away!
This weekend i am going away for a musical weekend and hopefully a well earned rest. For some reason today i am even more exhausted than what i have been since my cold. My asthma seems to be behaving although i did have to back to back two nebs last night as the first one did nothing. Thankfully the second one hit the nail on the head so no a and e visit required.
Today i have been to my exercise track walk group and my guitar orchestra but really felt just tired at both of them and quite tearful at one point too. I have a church meeting tonight and i am going to go, but i do rather think it could be pushing ones self, but i go away tomorrow and can rest. i have summond the strength from somewhere to cook this evenings tea urgh, i just want to lie on bed and do nothing.
Holiday tomorrow, hopefully it will be relaxing and uneventful!
Today i have been to my exercise track walk group and my guitar orchestra but really felt just tired at both of them and quite tearful at one point too. I have a church meeting tonight and i am going to go, but i do rather think it could be pushing ones self, but i go away tomorrow and can rest. i have summond the strength from somewhere to cook this evenings tea urgh, i just want to lie on bed and do nothing.
Holiday tomorrow, hopefully it will be relaxing and uneventful!
Wednesday 18 March 2009
kitkat splat...
My trip to see clarebear didnt quite go to plan! Arrived on wednesday and by thursday evening i was in the icu of her local hospital!
Im still currently a resident of the hospital but i am now on a normal ward and very much on the mend again though there are still little things to resolve like my low oxygen saturations grr! Im getting there and the new tablets are helping a bit! Had a nurse talk sub cut with me but ive never been keen on this idea! Even when it was discussed several years ago - guess its just a fear of people asking questions about it and having to explain! Not sure but will have a good old think about it and discuss it with my consultant when i get back home! Also got a few friends on sub cut who i can inquire about it with and get more info on it all to ease any concerns i have!
Till then im hoping to get myself better and out of hospital and then treat clarebear to a nice meal somewhere as she has just been the most wonderful friend i could ever wish for! She even arranged for me to meet wheezy footy chick too yesterday! We had a take away and sat chatting for a few hours-it was lovely despite being stuck in hospital!
Anyways the work tribunal thing is still going ahead as far as i am aware the appeal is in place currently so will be expecting to hear about that soon!
Despite the weeks events not going to plan and being rather wierd at times ive met clarebear and wheezy footy chick and spent time with two very lovely people who i do share something in common with! - they understand me where some of my close friends ive known all my life will never do!
Asthma is wierd! Its difficult and can be a pain in the rear to live with and can really restrict you at times but, through having brittle asthma ive come to know some amazing people who i would never have met without having asthma!
A wierd mixture of blessing and curse i suppose :-)
Anyways i will post again once i am free!
Lv kitkat Xxx
Im still currently a resident of the hospital but i am now on a normal ward and very much on the mend again though there are still little things to resolve like my low oxygen saturations grr! Im getting there and the new tablets are helping a bit! Had a nurse talk sub cut with me but ive never been keen on this idea! Even when it was discussed several years ago - guess its just a fear of people asking questions about it and having to explain! Not sure but will have a good old think about it and discuss it with my consultant when i get back home! Also got a few friends on sub cut who i can inquire about it with and get more info on it all to ease any concerns i have!
Till then im hoping to get myself better and out of hospital and then treat clarebear to a nice meal somewhere as she has just been the most wonderful friend i could ever wish for! She even arranged for me to meet wheezy footy chick too yesterday! We had a take away and sat chatting for a few hours-it was lovely despite being stuck in hospital!
Anyways the work tribunal thing is still going ahead as far as i am aware the appeal is in place currently so will be expecting to hear about that soon!
Despite the weeks events not going to plan and being rather wierd at times ive met clarebear and wheezy footy chick and spent time with two very lovely people who i do share something in common with! - they understand me where some of my close friends ive known all my life will never do!
Asthma is wierd! Its difficult and can be a pain in the rear to live with and can really restrict you at times but, through having brittle asthma ive come to know some amazing people who i would never have met without having asthma!
A wierd mixture of blessing and curse i suppose :-)
Anyways i will post again once i am free!
Lv kitkat Xxx
Sunday 15 March 2009
Work or not to work?
I was just getting back to my old self back to doing more and i get over tired, catch a cold and whack! A chest infection, all strength is zapped! Back to no sleep and coughing glore.
I am beginning to think that maybe working is just not for me seen as i cannot even get back to all my hobbies without getting run down and ill. Perhaps i will be off ill for a lot longer.
I guess i shall just have to see what the next couple of months bring.
I am beginning to think that maybe working is just not for me seen as i cannot even get back to all my hobbies without getting run down and ill. Perhaps i will be off ill for a lot longer.
I guess i shall just have to see what the next couple of months bring.
Thursday 12 March 2009
Perseverance
I haven't been about for some time now as i have been bouncing in and out of hospital. I am now out and touch wood will stay out for a decent length of time. The last few admissions have been very scary for me and probably some of the worst I have experienced as my lungs for some reason would not respond to treatment very well. I am not sure what this has been caused by but the Dr persevered and eventually we got them to behave.
After being discharged I went back to uni to do all the usual things like hand in my sick note and discharge letter from the hospital to give to my course tutors to sort out extensions and things. But this time it is different. I have always managed to catch up with uni work when being in hospital and never really had any great problem. The uni have been great and always very accommodating. But now I have missed so much I have to make the decision which has really already been made. Do i stay and risk my health getting worse in the hope of getting a degree in October or do i quit now and save my health and leave uni with a diploma in higher education??? I am not sure. I no for one thing I have to go home on Wednesday for some time to rest and get better but i don't know if I will return to Winchester as a student. I have battled through and feel if i don't finish it will be a waste but at the same time if i do quit now I will save myself from completely ruining my health even more.
I have always tried to do my best but have noticed that my work is never as good when i am not feeling well as it is when i am quite stable. My first year I averaged a first my 2nd year it dropped and this in my third year has dropped again. I have never failed anything but really not sure if it is all worth the risk.
I also face leaving my friends behind. i know they will always keep in touch but they are my friends and i see them every day. This will be very hard to leave.
I need to sit down and think about all my options and what is worth the risk and what is not.
I always follow things through to the end but think this may be something that no matter how much i try I just wont be able to achieve right now.
Tuesday 10 March 2009
Plumie - life less
Not a clue what is happening with my asthma or the reflux i just know i am drained and have no energy left to do anything. I am so glad i have nothing i have to have to do today i can just relax and potter around the house as and when i feel like it.
I have a list a mile long that needs doing but it all can wait. I have been listening to classic fm most of the morning, it is great company and keeps you in with what is happening in the world.
My new mobility car is going well, i have not quite got used to driving it yet it is much more responsive than my other car so i whiz off or slow down a lot quicker than i expect it is quite funny.
My chest seems to be permanently tight and i continuly coughing waiting for my resp nurse to ring me with what my consultant wants me to do. I definately wont be doing anything energetic so they wont have to worry about that. I am refluxing everything food, drink and medication, the lot!
I am a tad fedup with it, i enjoyed my few weeks break from it and would like another break now from it all. It is really a good job i do not work as i would be no use at the moment even if i managed to get there i would not be that productive as i am so physically tired and drained.
I have a list a mile long that needs doing but it all can wait. I have been listening to classic fm most of the morning, it is great company and keeps you in with what is happening in the world.
My new mobility car is going well, i have not quite got used to driving it yet it is much more responsive than my other car so i whiz off or slow down a lot quicker than i expect it is quite funny.
My chest seems to be permanently tight and i continuly coughing waiting for my resp nurse to ring me with what my consultant wants me to do. I definately wont be doing anything energetic so they wont have to worry about that. I am refluxing everything food, drink and medication, the lot!
I am a tad fedup with it, i enjoyed my few weeks break from it and would like another break now from it all. It is really a good job i do not work as i would be no use at the moment even if i managed to get there i would not be that productive as i am so physically tired and drained.
Saturday 7 March 2009
Plumie
Well my asthma continues to play up. I have been awake since around 6am this morning coughing and wheezing. Got up in the end as i was not getting very far very fast with getting relief.
It can be annoying when you are really tired yet you just cannot get enough relief to be able to sleep. It began to get tight when i was out at a friends house and then it has just stayed that way ever since. I do wish it would not mess about with my socialising. I like to be able to get out and do things and to see people. It is really annoying. Today i have a busy day ahead and i just know i am going to be tired all the way through it now because i had a rubbish nights sleep and once you have had once rubbish nights sleep several more shall follow as always seems to be.
It can be annoying when you are really tired yet you just cannot get enough relief to be able to sleep. It began to get tight when i was out at a friends house and then it has just stayed that way ever since. I do wish it would not mess about with my socialising. I like to be able to get out and do things and to see people. It is really annoying. Today i have a busy day ahead and i just know i am going to be tired all the way through it now because i had a rubbish nights sleep and once you have had once rubbish nights sleep several more shall follow as always seems to be.
Thursday 5 March 2009
Plumie - update
I have been well for four weeks. It has been great as i have been able to build up my strength and start walking to the post box and other little distances. I have also started going to Aqua Med it has been great.
Unfortunately I am now in the middle of a blip, my peak flow has dropped significantly. I have a hacking chesty productive cough. I have been told to put my steriods up to 20mg. I am breathless just sat still. It is very annoying as i was doing so well.
I was just about ready to leave the wheelchair behind and begin walking more but now i cannot do this i will need to use it if i want to maintain my freedom and be able to get out of the house.
Just doing household tasks is hard work once again. This is very annoying as i had got so well.
Unfortunately I am now in the middle of a blip, my peak flow has dropped significantly. I have a hacking chesty productive cough. I have been told to put my steriods up to 20mg. I am breathless just sat still. It is very annoying as i was doing so well.
I was just about ready to leave the wheelchair behind and begin walking more but now i cannot do this i will need to use it if i want to maintain my freedom and be able to get out of the house.
Just doing household tasks is hard work once again. This is very annoying as i had got so well.
Monday 2 March 2009
KitKat - update!!
Hi all,
I've been costa free for 10 weeks today - which is a new personal best!!! Ive been doing fairly well, had a few colds and wheezes but the nebs and the maximum pred are helping with that and keeping things on a fairly even keel!!!
Im off to see my gorgeous nephew on wednesday so coach trip is all booked and paid for, then I'm back for a day before Im off on my jollies again to meet clarebear!! Im very excited by this.... :-)
Will post again probably after my hols so till then take care all.
Lv KitKat Xxxx
I've been costa free for 10 weeks today - which is a new personal best!!! Ive been doing fairly well, had a few colds and wheezes but the nebs and the maximum pred are helping with that and keeping things on a fairly even keel!!!
Im off to see my gorgeous nephew on wednesday so coach trip is all booked and paid for, then I'm back for a day before Im off on my jollies again to meet clarebear!! Im very excited by this.... :-)
Will post again probably after my hols so till then take care all.
Lv KitKat Xxxx
Clarebear update
Hey peeps
I seem to be doing quite well at the mo, I have a cold that for the first time ever seems to be staying away from the lungs, I would usually have been in hosp by now so I'm happy :D I think the combo of the subcut and the abx I've been on every other day for the last 6 months may be helping!
Other than that not much going on in Clarebear land, as the previous posts from emz and vicky show we had a fab time in London! I forgot my camera big DOH but have a lovely pic of us all on the London eye and they took plenty of pics as you can see!
In the next few weeks I'm meeting a few more aukers which I'm sooo looking forward to. Lots of fun to be had! I have met quite a few of my online friends now.
I have been doing an open uni course for the last few weeks but I just cannot get on with it. this is the 3rd one I've tried and so I have come to the conclusion I need to be taught I find it very difficult to be just given a text book and told to read and make notes. There are tutorials but there usually quite far away and hard for me to get to. I suppose this kind of teaching just isn't for some! I have been looking at part time college courses and unbeknown to me there's a new college that has just opened up down the road from and they have a course I'm interested in. Ive enquired online and hope to hear from them soon.
ttfn
Clare
I seem to be doing quite well at the mo, I have a cold that for the first time ever seems to be staying away from the lungs, I would usually have been in hosp by now so I'm happy :D I think the combo of the subcut and the abx I've been on every other day for the last 6 months may be helping!
Other than that not much going on in Clarebear land, as the previous posts from emz and vicky show we had a fab time in London! I forgot my camera big DOH but have a lovely pic of us all on the London eye and they took plenty of pics as you can see!
In the next few weeks I'm meeting a few more aukers which I'm sooo looking forward to. Lots of fun to be had! I have met quite a few of my online friends now.
I have been doing an open uni course for the last few weeks but I just cannot get on with it. this is the 3rd one I've tried and so I have come to the conclusion I need to be taught I find it very difficult to be just given a text book and told to read and make notes. There are tutorials but there usually quite far away and hard for me to get to. I suppose this kind of teaching just isn't for some! I have been looking at part time college courses and unbeknown to me there's a new college that has just opened up down the road from and they have a course I'm interested in. Ive enquired online and hope to hear from them soon.
ttfn
Clare
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