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!

Fantastic Holiday

I went on my first holiday since my big asthma attack, this weekend, it all went smoothly and my asthma stayed stable and i had no problems.

I drove down to cheadle in stoke on trent, i spent the time with a friend i met at university. We played on wii fit and wii sports. We played board games. We went an indian restaurant and we also went for a few short walks. I also went and visited an orthodox church that my friend attends. I had a very good weekend. I am quite tired now but i am happy it went smoothly.

What a fabby week!

It was half term this week! Well, for people who go to college/school. Me and Emma took ourselves off to Buckinghamshire to see Becca and then Clare when we went to London on Thursday. It was absolutely brilliant. I haven't laughed as much in a very long time. I got sat on, locked in the toilet, fell off the roundabout in the park, and then managed to get a migraine. Typical :P.

I've got lung function tomorrow afternoon, seeing as my fecking doctors lost all my lung functions for the past 2 years, so I've got reversibility spiro, and stuff. Meh, I'm not looking forward to it at all. My chest hasn't been too impressed with me this week, and I know my reversibility is going to be rubbish. I'm rather worried that they're going to take one look at my numbers and go "pred." I'm the biggest, meanest child ever to be known when I'm on pred, and I sleep so much it's unreal. Not that I don't sleep unreal amounts as it is, but that's besides the point.

Anyway, I'll leave you with a picture from London!

London

It's me again :)



Well it was half term this week...and a bit of a mad one it was too. I finally got to meet Clarebear and finally got to see Becca again. Had a sort of mini splat and tested out the facilities at a different hospital, about had a heart attack watching Clare and Vicky on the dodgems, ate too much, laughed an awful lot and had the best time ever!

As always here are some pics....

Catch ya soon.
Emzieness xxx

Olive Update

This is a very quick post. I havnt fallen off the face of the earth but I have spent the past three weeks in Hospital due a very nasty asthma attack. I spent a week in ITU and am now on my second week on the resp ward. I hope to be going home next week as long as i keep improving. I will update a better blog later but get very tired jsut now.

Hope all are well.

Ol

KitKat - Update...

Hi all,

Just thought I'd blog and say that after about 5-10 minutes of thinking about it - my management decided to terminate my contract of employment due to my brittle asthma being a total pain in the rear all last year!!

I am now officially jobless and starting to feel like I am lacking purpose but it will be going through an appeal and then possibly tribunal so watch this space....

Asthma wise, I am doing OK, its sort of grumbling along really. I am starting to go out more now I have my disability bus pass which allows me to travel free on any bus service around my area. This has given me more freedom and has given me slightly more independence again too. I am however finding that the stress of everything that has been happening over the last few days is now starting to adversely affect my asthma, but I am doing things with friends most of the evenings this week to try and keep my mind occupied...

Anyways I am going to go tidy the front room up now and then going to have a long soak in the bath!!

Take care all!! :-) Xx

Plumie - doing well!

Hey, I am doing really well i have stayed in the green section of my asthma plan for two weeks (this is a really good thing). I am starting to use my nebuilser less in the day and am able to replace it with blue inhaler. I never thought i would ever see this day. My asthma is improving, although with brittle asthma, you can be stable for weeks and then suddenly SPLAT! I am hoping that i can get my full strength back so that when i do splat again i wont go as far back as i did in september 08.
I am starting to be able to walk further and stand up for longer periods of time without going dizzy or getting too shaky. God is so amazing! He is helping me to manage my condition and not feel too sad or down about it all. I have nearly finshed a course called Expert Patient Programme, it has really helped me to learn how to live more effictively despite having a quite a few long term conditions. I never really realsied i had more than one till this course.
This week shall be the test as i have been having 2 good weeks and 2 bad weeks, i am hoping i manage 3 good weeks or 4 would be even better! This week i am also going to be travelling quite a lot, going to see an old friend and also some family i am really excited and hopes my asthma holds out i do not fancy seeing any new hospitals. I am also starting aqua med at the local stadium, this is like aqua fit but it is for people who are on rehabilitation so is slower, i would love to with time get back to swimming. The steriods have finally had the cuddly affect on me, i spoke a little too soon that they werent. I have cut out snacks between meals and am trying to avoid as much fattening food as possible and just having lots of fruit and vegtables i will be glad when i am allowed to do more exercise, like walking to shops and doing folk dancing once again, i need to loose the cuddly effect and soon! I do not like it! :(
Things are going quite well for me all in all, i still have to use the wheelchair but as someone kindly pointed out it gives me freedom to be able to do what i enjoy without it i would be still house bound so the wheelchair is worth freedom! :D

Broken graseby pumps and grumpy lungs

I'm still getting used to being on subcut five months in, so sometimes I forgot I'm attached to something and get up without thinking and bang goes my pump oops. Well after a few months of constantly being dropped my pump started misbehaving, alarming at the slightest knock. I informed my resp nurse while at clinic a few weeks back and she said she would go get me another but I couldn't be bothered waiting around in clinic so said I'd come back another day, doh! big mistake as we know last week it snowed and snowed so going out was not gonna happen!
I then left it another week as it was still going.

Well Sunday afternoon I noticed my syringe was a little to full, and the lungs are getting grumpier as the day went on. Why do these things always happen at weekend grrrr! By early morning I was struggling, pump had given up on me. Hmmmm I know I wouldn't have made it to the hosp to collect new one. I gave up and rang an ambulance were I tried to explain what had happened once at hossie I was quickly sorted out with a new pump and after some b2b nebs and hydrocortisone I was ok!
I was discharged that afternoon (I wanted to go home by 9:30 by con made me stay till evening as sats were low, we compromised as originally he wanted me to stay overnight)
So lungs less grumpy and pump sorted yay!
I know the splat could have been avoided, but we learn by our mistakes!
Looking forward to Thursday as I'm meeting up with a few fellow aukers! Vicky, emz and Becca.
ttfn
clare

Argh!

Argh! For the love of all things holy! OK, I went to see my new GP yesterday. And they've decided to loose my poxy lung functions! Which means I've to go and do another set of spiro's. I hate spirometry. I can't do it. It's evil and always makes me seem much worse than I actually am. It also means going without my inhaler for 6 hours. Which just the thought of makes me panic. I'm relatively lucky that I got an afternoon appt, which means I can use my inhalers during the night when I wake up, which is something I probably would've ended up doing, even if I had've had a morning appt. So that's booked for the 23rd of this month. Blah.

So anything new... Hmm... I'm heading to Buckinghamshire on Tuesday! I can't wait! It's really wierd going somewhere in England and not having to fly over. I've got the flights and everything booked for it lol I'm not going to bother cancelling them. Easyjet try and charge a fee for cancelling a flight, which I'm having none of. Airlines get enough money out of me as it is, and I don't want to fund they're snobbyness. I've booked a flight home for a few days in March to see my mum, mates and boyfriend. I can't wait. It's been 2 weeks today since I left home, it's well wierd knowing I'm going home, but coming back here again. My mate said to me last night "You won't be tempted to stay now will you?" I know definately not, but it'll be hard saying bye to everyone again. It'll be good though, I really want to see my mum and nanny. I haven't seen Nanny since the start of January when she went to tenarife for 7 weeks. Ahhh! I'm so excited!

Anyway, I need to tidy our room up, or we'll have no clothes for Bucks!
ttfn!

KitKat - update

I have managed a grand total of 8 weeks out of hospital on Monday so yippee!! I am very excited by that as I feel like finally after a year of being in hospital constantly -I am finally getting my life back!! I am still feeling rough on some days but not everyday and that's the most important thing!

I am making the most of every single day I feel OK or good and doing stuff with my day! I am hoping that soon I will be able to get back to work but there is a dispute at the moment as to whether they want the hassle of making some adjustments to my working pattern etc-we'll see... watch this space!!

Anyways I have been out everyday this week - despite the fact that its still mega slippy outside and there is still a fair amount of snow on the ground!! I only got back home on Wednesday as I spent a week with family up north - saw my gorgeous nephew and believe me it was hard tearing myself away on Wednesday but I will be seeing the family again in a few weeks. Also planned to see clarebear too in march which will be great and I cant wait!!

Anyway I am going to have to get gone - gotta get dressed and get out of my house - need some shopping and stuff from town! Till next time guys (and gals) ;-)

KitKat Xxx

Introducing Lucy...

My name is Lucy, I'm 22 and I've been an asthmatic for four and a half years. I'm a happy, bubbly person with a passion for reading and anything pink! I love watching medical dramas and American TV boxsets such as Greys Anatomy, Gilmore Girls, Friends (of course!) and Dawsons Creek.

I was diagnosed with asthma a few days before I went to university after having a persistent cough for two months. Whilst at uni I seemed to get more and more chest infections and my asthma became harder to control. I also have multiple allergies including food colourings, aspirin, most painkillers (NSAIDs), the anti-sickness medicine domperidone and I also have salicylate sensitivity meaning my diet is very restricted and eating out / socialising can be tricky. The combination of severe asthma and multiple allergies means that I need to take lots of medicines everyday including four inhalers, six different types of tablet and two creams for my skin. I also wear a medic alert bracelet and carry two epi-pens everywhere I go.

There is a common misconception that asthma is not serious, it's not life threatening and that it's cured by a blue inhaler. This couldn't be further from the truth and it can be very difficult to get other people to understand when you try to explain what it is like to live with asthma, particularly asthma at the more severe end of the spectrum. Uni was a difficult time for me and there were lots of up's and downs. I had a lot of hospital admissions mainly allergy related until the salicylate sensitivity was diagnosed. Being in hospital a lot meant I missed a lot of lectures but I always worked hard to catch up, even writing essays in hospital if necessary.

I graduated in 2008 with a 2:1 and now work for my local council as a Community Information Specialist. I was absolutely terrified about getting my own place to live and starting full time work. I had no idea how this would impact on my health. I started work six weeks ago and so far it's going well but it's a struggle and I'm usually exhausted by Wednesday and need the entire weekend to recover. I've had one day off so far and a couple of afternoons off but I work flexi time which works in my favour really and means that I can start late and finish early if I'm not feeling so good. My manager has been very understanding about my condition but hasn't really see the full extent of it, I hope she doesn't have to! I love living in my own house too, I don't have to worry about keeping anyone awake at night if I'm coughing a lot but again it's a struggle when I'm not well.

Recently my asthma has become a bit more unstable and I was in hospital with a chest infection just before Christmas where they found that my adrenal glands are not working properly as a consequence of repeated courses of oral steroids for both my asthma and allergies. I'm waiting for further tests before my consultant works out the best course of action but there is a possibility of trying Xolair, a relatively new treatment, to see if it would help my asthma and minimise my steroid use.

Anyone who is reading this who isn't an asthmatic is probably thinking it sounds awful... it isn't all bad though, life just involves a lot of juggling and fitting in time to take my medication or rest if I need to. In 2008 I swam a marathon in a month raising money for Asthma UK. It involved swimming a mile almost everyday between April and May and I raised nearly £300. I still try to swim regularly now as long as I don't have an infection. This year I hope to run the Race For Life in June and go on holiday in September, my first time flying and going abroad with my asthma and allergies!

I've tried to write this post so that hopefully other asthma suffers can find something they relate to but also non asthmatics can develop an understanding of the true reality of living with asthma. It's not all blue inhalers and getting out of puff in PE!

New Patient Medical

OK, so today was my new patient medical at my new doctors.

Went in, did weight, height, BP, PF and all that rubbish. Somehow she already has my notes from old GP, so she knows my history. Apparently a PF of 300 wasn't acceptable. Now, see this is where I disagree. This is normal for me now. As much as my room-mate will disagree with this statement, I'm fine. We talked about different approaches to take, and it has been decided I'm going to see the GP tomorrow. This should be interesting. It takes me a long time to trust a GP, after I got a rather rubbish one a few years back, and then another one who can't tell her arse from her elbow. Hmm.... How long will it take this time?

So watch this space, I could be trialling some new wonder drug that cures everything. I'm thinking of asking for Paracetamoxyfrusebendroneomycin...

http://www.youtube.com/watch?v=jcrijUrDDiI

Plumies days

Since my incident with the snow on the car, i have been doing quite a bit. Been to church and still using the wheelchair, just walking to my car seems to have me huffy puffy. Why do boys alway seem to pinch your wheelchair as soon as you get out of it on to a normal chair? They seem to find it very funny. I think however it is very sad that people who can walk run and jump want to be able to mess around in a wheelchair, i do not think they understand how not fun it is for the person who requires it and that this person would much rather be able to run, jump and walk.

Monday i went to find about some voluntary work, after getting very lost and having to walk a lot further than the distance i was expecting i found the place. I think i will be doing 1 hour a week there. I am really looking forward too it. Next time i wont have to go nearly the distance now i know where it is, but it left me very very tired and i didnt sleep very well as i had done way too much walking.

Tuesday i went to the Stadium to meet up with a pals trainer (pratical activity leisure scheme). We had a good long chat on where my fitness levels werent and where i would like them to be. The lady explained to me why i get so breathless just walking it is all to do with the big muscles at the top of your legs they require a lot of oxygen and when you are not active and have breathing difficulties it can be very difficult to walk. So i now understand finally, i hvae asked many a medical person and they have never been willing to explain. i am happy now i know what it is. i also know breathlessness is a sign asthma worsening but since it hasnt worsened i knew that wasnt the main reason. I am going to be starting aqua med once a week and in time add in other sports. I am quite looking forward to starting some sport as i really miss it.

But i do know i have to be really careful not to over do it other wise i will go backwards and also if asthma is playing up one week i know i will have to be even more careful. Asthma really affects your day to day life, as one day you can be feeling great but you have to take it slow and other days you will be feeling horrid and unable to even get out of bed without being really breathless.

About Elephant2001/Vicky

OK, Well I suppose the right way to start this thing would be to say Hi! I'm Vicky, although I answer to Ickybob, Vicky, Icky Irish and Nutter. I'm 17, and have just moved from Ireland to Leicester. I live with my best mate and her family. 2 Asthmatics in one room. It makes for fun times.

I've got moderate asthma, and am quite lucky that it doesn't affect me that much. I'm having a bit of a rough patch at the minute, but I'm blaming it on the weather and stress. I've had asthma for about 3 years. I'm a bit of a nightmare when it comes to being co-operative, and tell my room-mate to bog off when she tells me to take my inhaler. Generally out of sheer stubborness. But other times I'm just being stupid.

When I lived in Ireland I lived with my mum, stepdad, little brother and our dog, that 2 weeks before I left had 4 puppies. I've met some awesome people through Asthma UK, without asthma, I wouldn't have met them.

I'm very lucky to have the mates I do!

Scary but funny snow experience

I was driving my friend home when all of a sudden there was a crunching noise and suddenly snow came down covering all of my windscreen i could not see a thing! I stopped the car and put on my hazzards while me and my friend laughed and laughed and laughed. Suddenly a very sharp pain, cramp like in my chest and it was getting worse the more i laughed it started to affect my breathing. Take deep breaths shot in to my mind, calm your breathing, try to stop laughing. After a few seconds the pain started to ease. My friend suggested she got out of the car to clear the windscreen and we both laughed again. The cramp came back panic set in, i got out of my car and stretched and i felt relief once more. I concentrated of taking deep breaths and trying not to laugh. Now when you want to laugh and are trying not to you know how hard that is! Thankfully i managed to calm myself and stop laughing, my windscreen was cleared and we could set off again.

As an asthmatic it is amazing how dangerous laughing can be, it can trigger an asthma attack off because it irrates and drys your airways which can cause tightness. It is unfair that something so simple like laughing can give you an attack. Thankfully this time using all my techniques i knew (stretches, deep breathing) i was able to prevent an attack and get safely on my way once more.

kitkat update...

I spent a good 12.5 hours travelling what normally is little over a 2 hour journey today. The snow really did cause total chaos. My chest was quite grumpy because of the chopping and changing into and out of warm/cold environments.

Nebs are a life-saver though and I did fine after a few throughout the course of the day. The staff at national express were great too-really helpful considering what awful weather they faced....

Ive arrived up north had cuddles with my newborn nephew watched bath and bedtime and I am feeling very content.. I am now off to bed myself as I am totally wiped out but have a busy day of baby cuddling ahead of me tomorrow!!

About Emzieness // Snow Fun

Hi,

I'm Emma, i'm 17 and i'm an alcoh...I mean asthmatic :).
I've had asthma for 3 years (On February 20th/21st) and although it is a pain, I suppose it's become a part of me. I have asthma- It certainly doesn't have me.


I'd like to share a few pictures of today. I spent today having fun with a fellow AUK'er and here are the results....











Without having asthma I probably wouldn't have met some of the great people I have and if I was given the option of those friends or asthma...Friends would win- everytime.

Emma x

Snow Day!!!

Its snowed an awful lot here lol!! Lots of the stuff piled everywhere near me - transport ground to a halt and no buses to my area!! mmmmm! Did sort of snow me into my house but I have managed to push my way through it now lol!

Bonus to all this is that my god daughter wanted me to make a snowman - I have started on this mammoth project - he is a slight snow mound at the moment though lol!!! about 3 feet tall though!

I have to go out in short bursts coming in for regular nebs and cups of coffee - and warming/drying out the gloves :-)

I still have a rather hideous chest infection but it tends to affect me worst during the night and early in the morning!! The rest of the day I have the odd rumblings of something but on the whole its all going OK!!

I today sent a very over due card of thanks to my old GP - this may seem strange but the woman deserves a medal for putting up with me for 8 years lol!!! She was one in a million and I felt she needed to be thanked for all her hard work, time and effort. Its strange how you get used to a certain GP when you have a chronic illness they sometimes do become very easy to talk to and my GP was no different to that - I didn't really find it too difficult talking to her about a variety of issues... My new GP is also great but having only seen her 3 times its still all very very new to me and needless to say its not as easy talking to her yet!!

Anyways Ive had my neb and my coffee and I am stalling as i am not really sure how to make and stick the head on my snowman lol!!! mmmmm!!
I'm off out again - bye guys!!

Xxx

Its just Asthma!!!!

I thought it appropriate to write this experience down and share it. It happened before Christmas but it has played on my mind for a while.

I was playing in a football match and am right wing. The first half I was running down the wing that our supporters manager and coach etc were on. This was all fine. In the second half we switched sides and I had to run the wing with the away teams supporters and managers etc. My team know I have asthma, how quick it goes off and what sets it off. Well I was running for the ball by the other teams group of coaches and they were all smoking I pulled up gasping for breath. It was like someone had shut a door to my lungs. They just wouldn't let air out or in. My team captain came over and helped me but she over heard there group of managers saying "its just asthma why do we have to stop the game" they started laughing and saying i was time wasting. Well my captain nearly flipped at them and a fight nearly broke out. My captain has seen me with my worst attacks so she knows that I don't stop for no reason.

I was told this story after I felt better and I could not believe that they said its just asthma. As sports people they should realise how life threatening asthma can be. I would also have thought that as Managers they would have more respect than to smoke on the sidelines of a football pitch.

I know I have often been wheezing and when people have asked me if I'm OK I have shrugged it off as just asthma but I am the sufferer so know how I feel.

When they said "its just asthma" it has really struck a nerve and made me really annoyed. We now tell the ref that people are not allowed to smoke on the sidelines. however some still do I just spend my time running away from them.

Maybe it is "just asthma" but I never time waste!!!

Allow me to introduce myself.....

My name is Emma- better known to many of my friends as either Wherrers or Emski depending on who you are. I have a pony and live at home with my parents and 2 (soon to be 3) dogs. I am currently studying for a History degree and loving being at university. I am just like any other student- lazy, enjoy the odd drink, eat way too much junk food,..... you get the picture. There is, however, one vital difference- I suffer from brittle asthma and have done since my previously mild asthma turned brittle at the end of 2007. This means in addition to my studenty activities I spend a large portion of my day taking inhalers, nebulisers and tablets just to allow myself to do these activities. At the moment this restricts quite a lot of the above student activities. I have managed to spend most of the term so far in hospital or at home due to being too unwell to return to Uni. Although my GP agreed last time I saw her that I was well enough to try returning this week. I was so so so happy to hear that :D. I have missed all my friends down there so much while I have been stuck up here.

Having introduced myself I realise that I sound pretty whiny but I am hoping that by next academic year it will be a totally different story. I have just started on a 16 week trial of Xolair. It does involve 2 injections monthly but seeing as I have managed 2 admissions in as many weeks and they involve an awful lot of needles I shouldn't complain ;) It is hoped that it will transform my life- getting me off steroids and generally improving my "quality of life". I have decided that a positive attitude will make it work :) I am aiming, if it does work, to run a half marathon in the next year and to lose the 'cuddly' effect that plagues so many of us who have to take large amounts of steroids.

I will keep you updated on my return to Uni- I am muchly excited about it :)

Thank you for listening to my rambling
Over and out ( I've always wanted to say that!)
Em
xx

Plumie - 01/02/2009

Did way too much yesterday and paid for it in the night, by having a lovely attack, if it can be called lovely?! Sat in bed struggling to breathe taking my reliever every minute until my symptoms decreased and finally disappeared just leaving me tired. Not something you want to be doing really at 2am. Would much rather sleep through this time!

Yesterday i went looking a new cars and testing driving some. I have chosen the car i would like and it is on order as it needs adaptations fitting to make it suitable to me. Hopefully it will mean i have a more reliable car and that it will be more user friendly too me. Like i wont get stuck trying to get out of it, i wont have to twist as much to see and i wont have to lift my own wheelchair out a special host will do it for me. (lifting a wheelchair is not good for lungs).

Yesterday, i was asked why i could walk around the house but could not walk around shopping centres or my church building. It has something to do with the size i believe and also how my chest is feeling on that particular day. It is very frustrating that people actually ask you why you use a wheelchair? When they think that as an asthmatic you should still be able to run around and do sports. My asthma really limits me and I find that I still cannot walk to the end of the street and back without having an asthma attack and feeling ill for the next few days following my little walk. Also my sats drop incredibly. I personally do not like having to use a wheelchair as i used to be so physically active playing sports and doing lots of walking but if i want to prevent asthma attacks and spend some time out of the house i have very little choice.
It is quite hurtful when people look at you and ask are you a fake? Deep down i really wish i did not need a wheelchair and that i could walk long distances and play sports but due to the many attacks and infections i have had in the last 2 years i need to take it really slowly and follow my medical professionals advice. I guess it is the things you need to do to avoid lots of hospital admissions.
I am finally back on my maintance dose of prednisolone hoping that I will be able to stay at this for a while and maybe even come off it without a big flare up. When you have severe asthma it is the little achievements that are so big to that individual. Please do not judge people by what they cannot do, but by what they can do. People pointing out what someone cannot do due to the asthma is really not helpful and actually quite hurtful.