Foggy weather

Up until now, the autumn and winter hadn't bothered me over much. Foggy weather has come to our part of the country and boy! is it a reminder I have asthma. Store cupboards bare, forced a walk to the shops and back.

I've become used to mouth breathing only, from house, past the building site on the Main Street and to the shops and back. Even with my Buff over mouth and nose, today I found shoulders ached along the front almost as soon as I'd walked up the slight rise to the Main Street. Aching shoulders is something that generally happens when I've done a long walk up, in a rush. This was just a wee short walk!

Waited till sitting down in local cafe before lowering scarf and taking my Symbicort - 2 puffs to settle.

Later on we went to shopping centre and walking across the multi-storey to the shops and back, again I felt the chest tighten and the slightly 'out of breath' feeling start.  I'm guessing its down to this cold air to warm air thing, that always gets me. Plus the foggy weather these last few days. One can almost taste the fog - especially around the building site. I'm crossing fingers that once this building next door is finished sometime next year - supposedly April 2010 - that perhaps my asthma will improve and Peak Flows come up to a normal reading for age, weight and height ie 490 instead of 270s.

This building is a new health centre and so far in its construction, its not doing a lot for us. Dust, muddy pathways and noise from 7 am to 4 pm. Sometimes over the weekend and sometimes later if they're pouring concrete - and for which they do come round and apologise. Good lot, this building firm.

So weather apart, I'm doing ok-ish in my first winter with asthma. So far, so good.

PS today I put up the Christmas tree and decorated house. Present fluttery feeling in chest suggests I've done too much in too short a time. LOL

First winter

This is my first winter with asthma and I'm wondering what to expect. On the whole, this diagnosis of asthma has made little difference to my day to day living. Just occasionally will catch me out on a long uphill walk or if someone is brushing the dust from paving slabs in the garden. Cough cough. 


Last two nights, I've been unable to sleep with an odd feeling. Not tight chested like an elephants been sitting there, but more a light feeling like a butterfly has landed and beat its wings. Maybe its just me. Anyway last night despite trying all the counting and rhyming games that usually make me drop off again - it just wasn't happening. 


Downstairs for thimble of milk (how come when you want a glass of milk, there's just enough left in the carton for breakfast), couple of Pringles, three grapes - sour(!) - memo to self stop buying 'basic range' fruit in supermarket, desultory reading of book. Looked around room...i-Pod on table. How silly. How could I forget that's what I tell everyone else to do when they can't sleep?


Back upstairs, earphones in place. Wild Theme from Local Hero on repeat and next thing I knew it was 9.30 with building site over the fence in full flow.


But its a funny thing this having asthma at first. You don't know whether to blame for sleepless nights or not. Funny butterfly trembly feelings or not. Previous to the diagnosis, yes, I've had both. So is it just me, normal, or just that I may have had asthma before but only now have it confirmed.


Puzzling.

Splat whilst on holiday..

So my record attempt at staying out of hospital came to an end whilst on holiday in scotland.
Its that time of year when everyones coughing and sneezing and usually around september I get a cold which leads to an inevitale hosp stay. I didnt get one so kinda hoped I'd avoided it but nope 2 days in to my holiday I come down with one.
I have had 2 this year that have not gone to my chest (much.) now we know this is down to the subcut keeping lungs happy. So I was kinda hoping the same thing would happen. It didnt stop me quietly worrying that I was gonna have an attack but you cant say, yep think im gonna splat in a few days, people would think I was mad!
It hit me hard though and within two days I was in ITU in a strange hospital struggling lots and trying to avoid being ventilated, I came very close eeek.
I was in itu for 5 days as I was having issues with being hypoxic, now this is new for me as usually on the right 02 my blood gases settle within 24 hours. Nope on 15l my gases were still not good. They put me on a machine called a vapotherm, heated and humidified 02 via special nasal prongs! 25l on that and nope still not good add in another 10ls via mask, wow thats alot of 02! So this continued for a few days and I had a CT scan to check for a PE. All clear apart from infection, I just needed a bit of time methinks as after 6 days things started to settle and from then on thanks to 100mg of pred, iv antibiotics and all the other usual ivs I picked up quite quick. After 12 days I home, and a few days later after a 7 and a half hour car journey I'm home home.

So now I'm nearly back to my normal kinda. Have just started an open uni course which I'm loving so thats keeping me busy.

TTFN
Clarebear :)

Pick yourself up and give yourself a good shake

Recently i have been really down with my asthma and it has been getting to me. I have now decided that the more i am down the worse it will feel. So i have decided to get up give myself a good old shake and get back on with life.
My asthma is totally unhappy and not good at all, i am getting breathless all the time and coughing lots, i am limited by what i can do physically but i am now determind not to let it get me down. I have been ringing my poor resp nurse every day this week. They have increased my medication today and have said there is not a great deal that can be done until the frost comes along and kills the fungal spores so roll on the first frost i am waiting for you. Mean while i cannot stop my life and hide till it comes i have to get on with my life!

I have decided that i am going to spend my time doing the things i enjoy even if i have to do them slowly, so today i went to a coffee shop for my lunch. Later i plan to decorate some candles that i am making for my friends christmas presents. Tomorrow i am planning to go into town to get a few items.

I guess at times when your asthma is controlling you, you have to take hold of it and say no, i am going to controll you! It is hard work and takes lots of determination especially when you know your next attack could land you back in hospital but it must be done. Get out and enjoy your life even with asthma.

What is it with September?

I had a bad asthma attack on Tuesday night, resulting in an ambulance and a visit to my local A and E department. I get discharged later that night but I have not been great ever since. I have today been put on 30mg Prednislone for 7 days and i had done so well :( I had been off it for 5 months the last time in years and now i am back on it again! Boo!
I am getting breathless when walking around and i am really not feeling very well at all. I am nebs glore and lots of contact with Resp nurse.
I feel like i have gone back 100 steps as i am not even wanting to go out or do anything.
Every year Septemeber gets me, there must be something either in air or in pressure that changes to get me.

Wooo no ones 8logged in a long tme

My keyboard is misbehaving so if i miss out letters and use numbers instead you know why lol!
I have not 8logged on here for a while, so asthma wise things have 8een a 8it hmmm could 8e 8etter 8ut on the other hand, great cause I have not 8een in hosp for over 7 months, that a world record for me and su8cut has a huge part to play in this :)
A few months ago I did something silly and got a dog, well I have always 8een allergic to furry things ut I kinda hoped he wouldn't effect me too much, I was ok at first. As the weeks have go on I've struggled more and more and got that allergicky feeling. Whats strange though is that it wasn't immediate reaction ut has come on gradually, so ok, the hives did appear at first only a few and I ignored them then the eyes and chest started to get in on the act. I cant get rid of him! hes a rescue dog and what hes 8een through so far well its rather cruel and upsets me to think about it :(.
Sooo what to do, no idea!

Anyhoo nearly ended up eing admitted a few weeks ack, an increase in sucut helped a little. My consultant does not know abut little pip hes a 8it overprotective of me and goes on a rant if I mention any kind of furry animal to him, so ooopsy!
Had hosp last week and they were pleased lung func had gone 8ack up a 8it so let me off for now. Theres talk of starting on Methotrxate again which I'm kind of apprehensive about as the side effects can 8e quite nasty. I think its worth a try just to try and get my steroids down to a more resonale level. Lowest dose I have got down to over the last year is 50mg :s 10mg decrease in something I suppose.
So I have a few weeks to think aout the methotrexate.

In other news, I hate DLA forms! Any kind of form really lol! I have een getting DLA since the age of 6 so that's 19 years you would think they would give me a 8reak from filling in forms and get the message I'm not someone who's just after money and genuinely need it unlike some of the benefits cheats, wow I have 8een watching something called saints and scroungers on 88c1 and some of the stories on there are just shocking!

Anyway rant over.

TTFN
Clareear
x

What a summer!

Wow! Nearly into September already sorry i haven't posted for so long. So much has happened but the most important thing to say is I have only had one big blip and that i stayed at home(campsite) i didnt need hospital treatment! Woop Woop
Yes i have had days where walking any distance had me coughing and very out of breath but i have had no hospital admissions.
Over the summer i have had 3 germans come and stay at my house, there was a group of them come to my church and we took them on day visits four days in a row, my mobility scooter came in useful else i would never have been able to keep up. It even worked on cross country.
I have been on two camping trips they went quite well, i only had a few hiccups with distances from various places like toilets or shower from my tent and also got a little flooded by rain.
My asthma did get grumpy with the wet but all was good i battle forth.
At the moment i am doing a work placement at my local hospital it involves putting letters in envelopes and putting information on to a database. At times it is quite dull but it is certainly good to be getting out of the house. So there are pros in there.

Unfortunately the Autumn is coming the leaves are changing colour and i am starting to feel it in my lungs they are starting to play up and i am getting symptoms more often. EEK! Off to see my friendly and extremley good consultant tomorrow and my Gp has sent a letter to a immunologist for allergy advice, all i did was ask and he said yes he would try, what more can one ask?! I was completely amazed and stunned! Anyways hope people are doing ok, i am off to rest!

Dust and dirt

At long last, the buiding work has started on our new all singing, all dancing Health Centre. Progressing on site behind our garden fence, looking good so far. Lorries lined up cheek to jowl like on the Herbie films when the baddie wants to knock a little old ladies house down.

So far all they seem to have done is move earth from front to back of the site.

And that's where the problem lies for me. Earthy dust gives me tight chest and feeling I cannot swallow. Came across this trigger, when out in the garden over the summer watching my husband sweep up the dust on the paving slabs.

I'm keeping windows shut and sitting in front part of house whenever possible. Strange thing is, its fine when I walk past the site. Maybe its all concentrated in my back garden which sits a little lower than the building site.

Chap from buillders came around yesterday to photograph our back garden and others - no clue as to why. Interesting..

Hi Folks, Back again after a good holiday around the very far left hand corner of Scotland. Happy to report all my usual shortness of breath disappeared. I hardly needed the Ventolin at all compared with at home. Only really needed when single track road making a swift altitude change upwards and then some while later, on the downward slope - had me been hiccuping for a good ten minutes followed by the asthma cough.

Poolewe

Stayed at the caravan site in Poolewe. Poolewe Hotel - drinks are priced on the high side. G&T and a coke - £6.50. The views more than make up for it, though.

Spent two days going around the National trust for Scotland's Inverewe Gardens at Poolewe.

The original owner, Osgood Mackenzie, set out to make a garden of a rocky windswept peninsula in the 1860s.

They'd to carry in the soil in barrows - I will never grumble about the size of my postage stamp garden again. One puff here and there for the pollen and moist air.

Ullapool

Went to Ullapool next. I'd have preferred the campsite out of town but catching the early ferry meant staying at the town site. Still, it looks good in this evening shot around 8 pm. We could see the ferry coming up the loch.

Took three puffs of my preventer in the morning before any big events like going on the ferry from Ullapool to Stornaway and pleased to report that I was one of the few passengers unaffected by the ferry which took on the attributes of a fairground waltzer as it headed across the Minch.

Bus tour around Lewis and Harris.

Stopped off at Dun Carloway Broch which still has enough of it left over the centuries to show the twin walled construction. Made my way slowly letting fit people overtake me, to the top of the path. Even summoned up the courage to go through its tiny door. I can't get down on my knees due one thing and another. Really must see about that one day. So, crouching as far down as I could, made it inside. Breathed deeply before making the re-emerge again. Didn't feel too bad as others didn't even attempt entering.

Durness

Spent several days at Durness. First here in 1983 and again in 1987. Hasn't changed much.

But the Craft Village at Balnakiel seems a bit more commercialised with their website addresses. No wee crafty bits and bobs to bring back as a souvenir. Bit disappointed with that. I still have the small wood picture from 1983 and my daughter her hand-made jigsaw. Nothing like that here nowadays. Sad. Once known as an outpost of hipppiedom, the original hippes have either upped sticks or become more conventional.

Meanwhile Durness is largely unchanged. The hotel next the campsite - Sango Sands Oasis - has had an extension added. Food and drink are still good and prices similar to most places at home.

One additon to Durness is a John Lennon Memorial Garden. He would holiday here with his family, staying with and aunt and uncle. The main part of the garden has standing stones with the words from In My Life inscribed.

Back at the campsite, this was the view from our caravan window.

With husband at hand, I even got myself down on the beach at Durness. At the bottom of a high sandy cliff, there are no real paths. Being a scaredy cat, I've put off going down such places since leg break 2001 (slipped on a much smaller hill - wet grass at side of a hospital carpark. Ha ha.)

Coming back

Driving back, just coming up to the outskirts of Lanarkshire, I started getting hayfever symptoms of itchy eyes and clogged throat. Perhaps I'm allergic to Scotland's Central Belt. Bagsy a move to the far north!

Hot and Humid weather

I have recently discovered a new trigger for my asthma. When the weather is hot and humid this seems to set my asthma off, my peakflow drops and i need more of my reliever but as soon as it cools down or rains it all goes back to what it was before.
It is very annoying as i had just got most of my strength back and now on hot and humid days it feels like i have gone back quite a few steps. I get out of breath so quickly.
I am not sure what i can do to avoid this trigger but at least i am now aware of it.

One achievement is i have now been off steriods for 6 whole weeks!

Next week i am due to start a work trial to see if i can manage working with my asthma i am hoping that this will go well and that with time i will be able to manage a 16 hour a week job. I will keep you updated on on how it goes and i have everything crossed that it all will go well!

Stress and Asthma

Wow no one has posted anything recenlty.

Overall recenlty my asthma has been really well behaved but recently I have been very stressed and noticed my control has got a lot worse. Before when I was goign through a really bad faze asthma control wise Dr emntioned stress to me but I never felt stressed but I now think I probably was stressed that I couldnt conrtol my asthma and then it was a vicious cycle.

I know jsut now I can pinpoint what has caused me to be stressed and it coincides with my lapse in control. It has not effected me too much in the day time but the night is causing some really problems. I am up at all hours. The more this is happening the more worked up I am getting that it is the start of another bad patch and Im goign to end up going back into hospital.

It seems ot be a real viscious circle jsut now. I got stressed then my asthma got bad and now i am getting stressed because my asthma has been getting worse.

For me the main worry is not that my asthma is getting bad but the impact that has. I play alot of golf and being shakey from ventolin is driving me mad as putting when shaky leads to some very interesting putts and this could ruin some scores.

I start work soon so hopfully this will all blow over and I will be too preoccupied with work to eb abelt o be stressed!!!

Spring Cleaning

Keep telling myself that asthma doesn't get in the way of my normal life. 

Just occasionally it creeps up and says boo! Like today. 

Today, I decided to sort out my overcrowded kitchen worktops. To see just exactly what was taking up the space and could I re-arrange toaster, coffee maker, kettle, 2 microwaves, several pots containing wooden spoons, spurtle, ladle etc, etc. We'd bought ourselves a bread maker - makes very good bread - and needed space for that too.  

Pre bronchitis this year, I would've done the whole thing in couple of hours. To my surprise, this time I ran out of energy pretty well near the start. Had a wee seat and a cuppa.  Did a bit more, thinking where has my energy gone? Another longer seat, looked at emails and had another cuppa. Finished off with a quick tidy up of the surfaces ie put kettle back in usual position and cleaning stuff back in cupboard. Promised myself to do some more tomorrow.  

Its a puzzle cos most days, weeks even, I'm fine. Holiday weekend, I weeded for most of an afternoon with only one break. Get a bit out of breath on a brisk walk to the other end of our main street. Most folk would. But this? This was a bit puzzling. 

Went off to Starbucks for usual coffee and took my book. Just walking up the stairs with the tray had me out of puff again. Sat back and started on my fruit bread. Cough, cough. OK, take a deep breath and try a drink of coffee. Splutter, cough. Hadn't done that for ages! Ventolin ahoy! 

Two puffs and settled back with my book. Fine again, took my fruit bread and coffee.  

         ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Most times I have an easy life and completely forget (apart from the twice daily inhale) that I have asthma. Like yesterday, when someone came to the door with a survey on local transport. Did I have a car, use public transport, ride a bike, etc. 

"How is your health?"

"Fine" I said happily. 

"OK, so no long term conditions?"

"None. Oh wait a minute, yes!" I stammered "I forgot. I have asthma."

We both laugh as I explain it's a relatively recent diagnosis.  

Living with asthma? It has its funny moments. 

World Asthma Day - London/Birmingham!

Well! As Olive was saying, last week was World Asthma Day! Me and Emzieness spent a good portion of our day campaigning for Asthma UK! We left Leicester at about 7.15 to travel to Birmingham, to speak at a conference for P.E Teachers and School Nurses about our experiences with both. The Day was run by the George Coller Memorial Fund. This is a charity set up by a mum after her young boy died of asthma. There was about 20 Asthma Nurses there, and a consultant spoke aswell. It was a fantastic morning, and I learned a lot.

That evening we headed off to London to the Parliamentary reception at the Houses of Commons. It was great. There was a lot of MP's there, and a few people got up and spoke, including a 19 year old who had managed to get his asthma controlled due to the help of a fantastic asthma nurse. He highlighted that having asthma hasn't stopped him from doing anything that he wants to since he was able to get it under control. We spoke to a lot of MP's, and tried to get them to start taking more notice of asthma, and not brushing it under the table as "not serious".

Asthma control is very important. Thanks to having my asthma controlled I've been able to go SCUBA diving, do a Sky jump off the Sky tower in New Zealand, go Skiing and Travel the world for 3 months. Having asthma is not something that should stop you from doing many activities, and I know in some cases it is hard to get control of your asthma, but hopefully with the help of Asthma UK, more drugs will be funded and found!

Anyway, On the Wednesday myself and Clarebear went to London Zoo, It was a fantastic day out, even though we were both wrecked by the end of the day!

So what did everyone else get up to for LimeLight?

Here's some pictures! The first is the official one from Birmingham, and the second is one of mine from London!

Asthma in the Limelight- Scotland

To kick off asthma in the limelight and all the fundraising associated with it I went to Waverley Train Station with a women who works with AUK and some other volunteers to do a bucket collection for AUK. We were equipped with our buckets, stickers, lime green AUK t shirts and to top it all off a lime green curly wig!!! It was a great day a little cold at times but all in a good cause.

While collecting I had some interesting comments. Alot of people wanted to buy my wig and pffering alot of money for it but sadly I had to recline the offer (I grew attached to it after a while). Other people comment that asthma wasnt real and some people said they werent going to gove to an asthma charity cause it wasnt a worthwhile cause but if it was for cancer they would ahve donated. This really hit me hard at how people feel about asthma. The stats are horrific for asthma and yet people still dont aknowledge it along with other very serious diseases. In Scotland we didnt do anythign major for World Asthma Day because today Wednesday we have a Cross Party Group meeting in the Scottish Parliament whihc I am going to later today but I need to find my smart clothes first!!!!

Hope everyone else had a good day and week. Off to parliament.

Below is a photo of me ready for a day of collecting!!!!

Amazing Day Out!

On may day bank holiday i decided that i would go with my friends for an outing to the seaside. I got myself all organised and well equipted with my nebuliser, nebules, pain killers, wheelchair and other disablity accessories (disabled key and badge).
Told my passengers that i would be stopping for a neb break on route to keep my lungs in there normal routine.
Arrived at Bridlington couldnt find the disabled bays so parked in an ordinary parking space, I have not done that for so long, the spaces are so small it was quite amusing really, went to find out how much it was to park and discovered i could still use my disabled badge :D so it was free!
Got the wheelchair out, interesting in a normal parking space, went out to find my other friends who had arrived before us due to me needing to stop for neb break.
We must have looked an amusing sight, i was in my wheelchair and one of my friends who was pushing was wearing her inline skates. We had a great laugh!
Over all it was a great day out, as i had planned ahead we did not have any problems and all went smoothly and i was able to keep up with my friends.
Living with asthma you can live a normal life just by planning a little in advance and having people who do not mind pushing you around in a wheelchair or walking slowly with you.
I am now considering however purchasing a scooter so i can get a little more independance as i know there would have been no way i could have walked from the north beach to the south beach i definitely needed the wheelchair.
Just to encourage other asthmatics, plan ahead and you can have fun even with Brittle asthma!

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.

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.

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.

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.

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.

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!

Laters!

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
Kate

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 )

Quicky!

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.

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??

~Post by Numbers~

*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...

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!

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

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!

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

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.

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.

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.

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.

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.

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

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

Social services and cough!

I have started with a cough and i am breathless when i move around. I was doing so well but i guess this is the story of asthma. I am really really tired today. Been to town to get a few bits on the scooter but didnt stay out long as it is very cold out!

I have finally received my community care assessment today, i am not to receive any help from social services because i have only got asthma and it isnt in the class of receieving support. Very annoying but i guess this means i shall have to continue and find my own ways to cope with life.

I have at least been accepted for DLA higher mobility and middle care after a fight. I would not be able to get out and about without my car or being able to use a mobility scooter. I can use a wheelchair when i have help with it but i cannot push my self in it especially not on days like today when i am breathless before i even start moving.

I am off to sort out my box of important documents it is in a mess and i have loads of paper work to file away as it is correctly sat in a pile on my desk chair and growing daily. Just wondering how out of breath i shall end up, i am hoping i wont go dizzy but i am guessing i will. Asthma!