Wednesday, 29 April 2009

Wow been a while since anyone posted. People must be busy and hopefully chests behaving. I have been busyish.
A few weekends back I got the chance to go out to the Forth Rail Bridge to watch a friend off AUK do an abseil. It was awesome. i would never be brave enough to do that. It was about 165 ft. I also got the chance to meet one of the people who do fundraising organisation and stuff for AUK and she has given me the chance to become more involved. I am going to be helping at a bucket collection at the train station wearing a lime green wig and t shirt for the AUK campaign putting asthm in the limelight. World Asthma day is on tuesday and then on wednesday Im going to the Scottish Parliament for the Cross Party Meeting. I am getting the chance to meet on of the asthma nurse specialists at the meeting too.
I have also sent in all my application forms for going back to uni. I am hoping to go back in September to Napier in Edinburgh to do nursing. I really want to get in so am keeping everything crossed. Hopefully I will hear soon.
Chest wise things have been pretty good lately. Had a slight chest infection but a increase in pred and some antibiotics sorted it out. I have stopped all sport except golf now and chest seems ot be liking it. I keep getting thoughts of what im missing as I still love some sport but I know i am healthier for it.
Off for some golf practice now.

Friday, 17 April 2009

3 Years on

My consultant said this morning my asthma and reflux is finally stablised, it has only taken us 3 years to bring it undercontrol, to find medication it responds too. Now the key is to keep it all undercontrol, adjusting medication according to how it needs. He has lowered my prednislone this morning to 2.5mg to see if i can gradually work off it and only use it for flare ups but it is only a months trial so if it goes haywire it can be put back up to 5mg.
I am to stay on nebulisers four times a day permentanly as my asthma is better controlled this way.

Over all i am quite please with how things are going as i am able to walk a little more distance at a very slow pace, i can do most things for myself finally. Providing i can park close to shops i can do my own shopping very slowly. I am looking at getting in to part time work with help from the job centre. This is taking time but it moving in the correct direction.

I know i will have up and down times when my asthma or reflux flares up but these i will cope with as they come i am just thankful for reaching some stablisation.

Thursday, 16 April 2009

It all takes time

My mum used to say 'It all takes time.' when I was young and impatient for something. I'd guess getting the meds right and the asthma under control is something the same.

I have this invisible elephant that sometimes comes and sits on me during the night. Well, that's what it feels like when I awaken yet again at 4am.

My DH says he didn't know he'd signed for damaged goods and could he still take me back for a refund. Ha ha.

Reminding self that asthma diagnosed 4th Feb of this year and that it will indeed take time to see if the meds given Clenyl Modulite 200 x one puff, twice a day plus Ventolin if required is the right one for me. I've always kept a journal so checking back over last months, I can see how immediately how far I've come in this short while.

My cough gone completely and a lot less breathless after exertion.

Today I had a lovely walk with my granddaughter and son in law. The weather was chilly with a cold wind but I could hold a conversation without coughing my head off or continually clearing my throat. Bliss. True, we did walk at the wee one's pace rather than her dad's long gait, but still a joy to do it and not be breathless at all.

Tuesday, 14 April 2009

A Mums view, part b

So I have finally allowed Jack to stay at his Grandparents again (he has been too ill to stay anywhere other than hospital and home for months) for a couple of days and even though they are the next best thing to us (his mum and dad) the fear in incredible. Off he went bags packed, one for clothes one for meds and a very excited Jack goes along with an Easter egg to keep him company, oh and younger brother and sister!!! All going well and they are being thoroughly spoilt, ( hmm don't remember my mum allowing me to do what I please or eat whatever I want) and am feeling quite redundant and wondering what on earth I did before the children came along!!
The next morning I trot off to work (yay) and try not to phone at the ungodly hour to check all ok, so when 10am comes around the fingers have dialled the number before I can even think about it. How on earth do I mange to be such an anxious mother, I was never like this before and I am starting to think that maybe my poor 11 year old son, who is trying so desperately to grow up is rolling his eyes at his neurotic mother, is getting a tad fed up at the constant questions fired at him when I'm not in his company. In fact they are listed in the same order each time:
A. whats your peak flow?
B. have you had all your meds?
C. how you feeling?
D. what colour are your lips?
E. count to ten fast? (done to see how many he can count to without getting breathless, some method to my madness)
So I have a little chat to my two other children, and hear all that they are getting up too and then my mum comes on the phone, "erm" the conversation begins, and my heart sinks "Jack is looking a little grey, Kate and he is saying he doesn't feel too well". What have I done, I'm not there to see how bad he is, how bad a mother am I, just a few of the questions I ask myself in the 3 seconds gap before I have to respond to my mum, so I fire some instructions to her and after realising he isn't great I tell them to get him to the local hospital where he can have a neb and an iv to pick him up.
He was kept in over night and sent home the next morning and is a bit brighter now but the poor thing cant get over the exhaustion and we have had to get the home neb back out for him. Will this never end? I seem to be watching my boy slowly become a shadow of his bubbly former self. The guilt of having healthy lungs and a fully functioning body, along with the helplessness of not being able to do anything other than be an outsider looking in through the cloudy window is making me a neurotic and stressed out person. I am beginning to become a split personality, one side the same mum who teases her kids and never gets upset about what goes on, the one who tells Jack that we can handle anything that is thrown at us because we are a team. Then the one who sits on her own when everyone else isn't around who weeps for her baby and is terrified about the future and what it holds for him!
Oh to have a magic wand and be able to wave all this away, even if it is just long enough for him to regain some strength and his positive attitude.
We have another week to enjoy before hopefully back to school, so I'll keep my chin up and my mouth closed and try to have a more cheerful blog next time. Hope you are all not suffering with the pollen count and all had a lovely Easter.

Monday, 13 April 2009

upsy daisy

My peak flow appears to be dropping it has been going down over the last couple of days. I feel well though which is quite odd. I think it could be because i have done a little too much and need to rest.......... This i do not want to do at the moment i want to keep going but i must not push myself too hard, i know what the consequences are if i do. It would mean a stint in hospital. Not a place i want to go. My reflux is also playing up, i am back to see my consultant on friday and he shall be told that reflux is not getting better, it is up and down like a yo yo and it needs sorting once and for all as i am fed up of it! I would just like to not have a burning sensation my chest area and not be burping continuously. It is very disgusting. I am very tired and thinking of getting an early night. Hopefully i might sleep better than last night. I woke up with reflux once and asthma once.

Saturday, 11 April 2009

Sniff, Sniff, Sneeze.

I'm a very bad blogger. Oh well. Not much has been happening! My asthma's started to get a lot better under control, I even managed to hit 580 on my peak flow in the doctors the other day. I was well happy! I'm saying it's atrovent. It's really managed to get my symptoms under control. I'm not coughing as much, and my ventolin usage has gone way down. I still don't understand why they stopped it in the first place. My old GP's excuse was something a long the lines of "We need to keep atrovent for the COPD patients." Now I was under the impression that if something works, then don't fix it? Oh well, that was that GP's idea. In other news, I had a wonderful trip to out of hours yesterday. It wasn't for asthma thank goodness, I've quite badly pulled a muscle in my leg, and it's bloomin' painful. I was waiting for about two hours. I was quite annoyed that the wee boy beside us was in the middle of going splatt, and they made him wait. He wasn't wheezing too bad, but he did seem quite short of breath. I was quite suprised they didn't send him to A&E, because they did before when he was like that.

I'm off to Manchester on Monday for a certain AUK'ers birthday! I'm going to be up for 2 nights, and I can't wait. We've been planning it for weeks. We've got the present, venue, edibles and people all lined up and sorted! I'm so excited! And then on Wednesday my dad's coming to see me. It's going to be a great week, I haven't seen my dad in 3 months. I really can't wait to give him a huge hug lol.

Anyway, I saw a 7 random facts thing on facebook, and I thought I could do it on here!

1) I've got a very confused patriotism. I've got a british birth cert, but have lived in Ireland for 8 years and have an irish passport. Although I'll always support the irish rugby team!
2) I've been in every continent except S.America and the 2 Artics, something I will change lol.
3) I have 3 wristbands on my wrist, none of which have come off since the day I got them. The oldest one is nearly 2 years old and it's from a charity in Cambodia.
4) I'm a qualified Open Water SCUBA diver. Despite asthma I managed to pass the exam and everything in Thailand in 2007. It was amazing.
5) My bedroom wall is covered in stuff. I've got pictures, boarding cards, rail tickets, school certificates and lanyards all over it.
6) I've met 6 members of AUK, and hopefully will be meeting more at the Asthma UK Youth conference!
7) I love my iPod. I NEVER leave the house without it. It's practically got my life on it. I've got something like 2500 songs on it, half of which I've probably never even listened to. But I still love it to bits!


Friday, 10 April 2009

mums view

Hi, I'm a mum of two brittle asthmatics, both boys, both the most cheerful little souls you could ever wish to meet ( maybe biased but they are a delight) and wanted to let other mums know that someone else does know how tough it is to have asthmatic children.
My eldest son was diagnosed at 6 months and has been in and out of hospital most of his life. His asthma is very badly managed and is on an awful lot of medication all of the time, including daily steroids which has been ongoing for 6 months now. Unfortunately we have found out in the last month that he has gone into endocrine failure due to all the steroids he has taken over the last 11 years. Tough for an adult to take in even harder for a young man to get to grips with, especially when he likes to ask questions about how this will effect him. My younger son of 7 is not as severe as his brother but does also take a lot of medication, and enjoys a number of hospital visits!!!
For my sons, this disease is part of their lives and they are used to not being able to walk up the stairs because they can't breath, or having to rest for 3 days after an exciting day out to cadbury's world, (WHICH WAS FAB) but as a mum to watch your baby gasping for breath and slipping into unconsciousness in front of your eyes is the most terrifying and heartbreaking scene you could ever imagine. The fear that every breath may be their last and the fact that you can't control that part of their life that you so desperately want to control is your worst nightmare come true. The thing I want to do the most is take the asthma away and give them my healthy lungs, and maybe allow them to enjoy a normal day, just one of childhood.
The blessing is my beautiful sons never ask why me, or complain when stuck in hospital for two weeks at a time, hooked up to all sorts of machines. I am a very, very lucky mum to have such kind and generous children whose illness gives them more empathy for other people who are a little different and maybe aren't the slotted into the normal box.
So anyway I'm going to be blogging about how everyday life is as a mum and the highs and lows of living with asthmatics. The next few months will be interesting as we will discover what they can do for Jack (11 year old) and how his life will change once the endocrinologist become totally involved.
Will bore you again soon

Just saying Hi

My asthma is quite light and doesn't on the whole get in the way of my day to day life. I will be posting in what way it does occasionally get in the way. But mostly I will be a wee cheery soul. 

 GrannyMo 8 )

Friday, 3 April 2009


Today has been a tired day but i have had a hectic week. I go to scotland on monday for five days hopefully will be a rest, but will all depend on the size of the hotel and things like that i guess. I am now using my wheelchair less and really noticing an impact on my breathing, i am more breathless and more wheezy but still battling on. Things are going well over all.

Wednesday, 1 April 2009

A family perspective

I sat down to right a blog as figured I haven't done one in ages on either my blog or this one. It is time to update. Well not really update. I decided to speak to my mum briefly about her perspective of living with me as a brittle asthmatic. She decided to write a small piece. I have decided to use parts of it as I never realised quite the impact it has on her as a parent.
Asthma is something that has always been in the family so it is nothing new me being diagnosed. There is a strong family history of asthma and eczema. It is something that you either have on or the other or both. There is no one without one or the other.
As a young child the asthma was well controlled and it tended to be my brothers who ended up in hospital with broken bones or concussion etc. As i got older the roles changed it ended up me being in and out of hospital more and them less as my asthma attacks got worse.
Mum wrote "as a parent watching your child struggle to breathe is the most terrifying experience. You cannot compare it to anything else as you are helpless. There is no way you can help them breathe. The most distressing part is that as a parent the natural instinct is to cuddle and hold your child but often this makes their experience worse"
I never realised or really considered what an asthma attack must be like from my parents perspective. Mum explained how frightening it was and how she wishes it was her when I struggle. It is something I would never wish on anyone. I have always wanted to live my life how I wanted to and never took into consideration the fear that they suffer.
the last 7 years have been very difficult but last year i temporarily left university to try and get better. My mum wanted me to stay back at home and transfer university but me being stubborn I was having none of it. i went back down south as soon as my consultant said it was ok. I never thought about how my mum must have felt. I got irritated by the daily phone calls from her. She explained to me that she "called everyday as she was worried if she did not hear that i was ok she would not be able to settle. You can text when your in hospital so how do I know your ok?". previously i had been in hospital and not told my mum but had text her and said i was ok. However it came out in the end that I was in hospital.
it was a hard conversation speaking to mum about it all. I guess I was quite selfish as I was wrapped up in how I felt about my asthma and did not consider that others had to deal with it. the were having to live through it as I did too.
Mum explained that life would be adapted when i got home to make sure the environment would not trigger any attacks and so that we did activities that I could manage. i had never considered this and feel quite upset at the lengths they go to to help me and protect me. i had no knowledge of this.
I always tried to live a normal life and thought I was however I have now seen that life is not quite so normal. People adapt around me despite me doing what i what.
During the conversation with Mum she asked me if I ever wished i didn't have asthma. Of course I do wish I didn't have it but at the same time I don't. Mum couldn't understand why i would wish to sometimes still have asthma. I tried to explain that I have done things that i would never have done and met some great people. She couldn't quite understand.
Does anyone else wish they did and didn't have asthma??