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Where people living with asthma and caring for those with asthma discuss their symptoms, treatment and life with the condition.
  • Too Young

    by Plumie on 27 May 2011

    I am too young for all the groups and help that is there for people with respiratory problems. It is really annoying me. There are sports groups, there are social groups, there is housing, there are care agencies but GUESS what i am too young! There is no support for people with respiratory problems who are under the age of 50! I am totally annoyed!

    I have been having a really nasty time with it due to all the government and council cuts. I have lost a lot of help. I am struggling with exhausion at just trying to live the very basics. It is hard times. My medical team are being fantastic and are supporting me with lots of letters but it has not stopped my income being reduced and my home care being reduced. People just do not seem to get that a young adult can have respiratory problems just like elderly can.

  • Fog, fundraising and goals!

     

     

     

    “If you marry a man like your Daddy, you are in such big trouble my girl!” Oh my god I am having conversations with Lottie dog, okay that is not unusual, but forgetting that she is a dog and not human is.  Life has been a bit like that the last few months, my brain, or is it my mind is having an identity crisis almost on a daily basis and roll on 19th April 2011.  Bring it on, can’t wait, well I will have to of course.  So what is so special about 19th April 2011, my latest Open University Course will be over.

     

    So with the latest assignment on my mind it is hardly surprising that my mind is all foggy and I can only view a distance of a few inches, and the horizon seems an impossible goal (Psychologically  of course) Tongue Tied.  Richard is currently next door writing an essay, and I think his horizon is looking a little fuzzy too. At least my study goal ends on the 19th April, Richard doesn’t end his studies until the 24th June, but there are other goals we both have to achieve in the next couple of months.

     

    My goal by the end of June is to lose a stone, though this week I have fallen off the diet wagon, and eaten chocolate biscuits, ice cream and sweeties.  Last week I was a good girl and stuck to my diet and didn’t lose a single pound, and so with the stresses of writing and studying for my latest assignment I am currently munching or is that crunching through pineapple chunks, not the healthy sort.  Richard is undertaking the Beach to Beach bike ride for Asthma UK in May of 140 miles so he is currently training (and losing the weight), and is now managing to cycle 60 miles in one ride.  Well I say managing, there are a lot of moans and groans, creaks and snapping of joints, and plenty of jokes provided by me about tubs of Vaseline and the benefits of wearing proper cycle shorts.  Richard so far has turned down my offers of getting him some cycle shorts on the basis that they leave nothing to the imagination Stick out tongue.   

     

    As part of Richard’s fundraising efforts, I have been collecting sponsorship from neighbours, family and friends.  So far everyone has been really kind and supportive when asked direct but messages via Facebook asking to donate via his just giving page have proved fruitless. Whether this is because people are fed up of being badgered to use these Just Giving pages for various causes or afraid to use this method of giving we don’t know.  Though these aren’t the only ways Richard and I will be raising money, we will also be doing a car boot and Lottie and I for one day only are going to become Wheezie Fairies dressed in lime and purple for a one day street collection in high town, using the motto “Help the Wheezie Fairies become Breathe Eazi Fairies.”  Of course not all Asthma Sufferers wheeze, but I think the slogan sounds good and if it gets people’s attention on the day, great.  For any of you in follow Asthma UK on Facebook I promise to post photos of Lottie dog in her fairy costume.

     

    Asthma wise at the moment I am doing very well, walking a lot with Lottie, and enjoying the current mild weather even when it isn’t dry.  Such a relief to see those dull and cold days of winter gone.  I have had a couple of visits to A & E but thankfully no admissions, and my contact with the local respiratory department has been zero.  Though this hasn’t been by choice, just simply appointments have been cancelled by the local hospital and since my point of contact left the local respiratory department has left, support is now non-existent.  So 4th April shall be interesting when I see the respiratory consultant………………………………………ummmmm!Indifferent

     

    Thanks for reading, sorry to my followers for leaving it so long!

     

    Cheers Katina aka Lottielou5972 Geeked and the Lottie Dog

     

     

        

  • New year New Beginning New Start

    by Plumie on 01 February 2011

    On 1st january 2011 a young man proposed to me. I am engaged to be married! I am going to be getting married. He is not bothered about my physical disability he just loves me for the person i am. It was such a fantastic start to the new year.

    My health has deterioated a lot since i last post but i am slowly learning to live with it, I can only leave the house when accompanied by another person. My breathing varies widely on a day to day basis.

    I have just been discharged from hospital so am on the steady gradual build back up as far as i can before my next admission which could be anytime.

    I have finally been allocated a new social worker and i will be asking for a carer to help me through out the day when my finance and father are out at work. It is very hard being young and housebound because you watch other people go by your window and you see people on television doing all you would love to be doing. I find it very challenging to remain positive when i see all the things i could be doing but cannot due to my disability. I do not pretend to you that it is easy to live with a disability because it is not. Nor do i pretend to you that it is easy living with severe asthma because it is not. I never know when my next attack will be nor do i know if it will be the one that kills me.

    At the moment all the reforms that are being made are really worrying me because i am not sure how they are going to affect me care or finacially. I already know i am unable to work and i need my PCT nurse to help me manage my condition and it is looking like i will lose out on both of these and on the care i get from social services. It is very hard times at the moment and i am struggling to remain positive.

    I keep an achievement book so i can look back at what i have managed and aim to achieve more each day.

  •  


    Whew, think I have over done it on the menthol, feel like I have fallen in a vat of Vicks Vapour Rub!  Bit itchy tonight, so just had a shower with some menthol based shampoo and covered myself in aqueous cream with added menthol as prescribed by dermatologist.  Certainly clear your head standing next to me right now!  So how’s tricks?  Well, mmmmmmmmmmmmm okay I think, well today has been.

     

    Walked Lottie Dog and Poppy Dog this morning for a couple of hours, Poppy being yet another neighbour’s dog that I occasionally walk, Lady the Shit Zu was unavailable, as in gone out with her Mummy, Lottie Dog was disappointed because she didn’t get to rob Lady’s dinner as per usual.   Met lots of fellow dog walkers, got covered in muddy paws while Lottie and Poppy decided to have some beauty treatment by wading in some cow slurry near the local dairy.  So on walking back home through the local city park with slurry covered dogs wondered who the mad ones were, those out with their children in their new clothes received for Xmas carrying crying children plus bikes/toy push chairs or me with two slurry covered dogs.  Them I think, dogs don’t answer back!

     

    So Christmas is over WHOOPI, I know that sounds so baa humbug, but I really hate it, the stress, the commercialisation, and the family rows.  Not for me Christmas is to be spent at home with Richard and Lottie dog, going for nice walkies and munching nice things.  That’s not to say that there haven’t been any rows last year (well it is 2011 now).  Slight set to on Christmas afternoon over car.  Apparently my fault, because I put the anti freeze out of sight.  What is she waffling on about I hear you ask?  Well Christmas afternoon decided that I was fed up with doing the usual walk and got Richard to take the car out, and go somewhere else for a walk with Lottie, unfortunately due to the adverse weather conditions our car engine had froze, and about four miles down the road our dear little Ella (The Car’s Name) sounded like the Titanic going through ice, and we all know how that ended!  Thankfully we limped home, and after some more anti freeze and starting the car several times a day for a couple of days the car recovered.  So why was it my fault?  Well Richard says if I had not have put the Anti Freeze away, he would have remembered to put some in, yeh right!

     

    So what has the above got to do with Severe Asthma?  Well directly absolutely nothing, but since this blog has become published on Asthma UK also, I have received a lot of response to it via Facebook and the AUK message board, where I also sometimes write.  Whilst all the response has been polite and mainly positive, there have been a few who have responded in a way, that I didn’t expect.  A few have responded by saying how sorry they feel for me, and sending their sympathies.  I don’t wish to sound ungrateful but I don’t require anyone’s sympathies, if I want to feel sorry for myself I do, but others feeling sorry for me will achieve nothing.  All I want from my readers is empathy, and all I want my blog to do is educate others about the difficulties of living with Severe Asthma and make my fellow sufferers know that they are not alone.

     

    So how are the ole wheezie tubes?  Wheeeeeeeeeeezie, wheezie, squeaky, little bit tight, or none of the above.   Right now, none of the above, an hour ago, a bit tight, this morning all of the above, until I popped some smarties.  But such is life, being a brittle/severe asthmatic its part of me.  Still managing to avoid hospital as an in patient, but in recent weeks popped in A & E for a brief visit, after chemo and met some of my little green men while I was there.  Back to having Chemotherapy for a few months again, its definite I do have Churgs Strauss Syndrome, couple of months ago, started having problems walking again, so it was decided that a couple more months of Chemo would be beneficial.  And the chemo is definitely beneficial because I get speedy juice (Methyl Prednislone) before hand which both my Eczema and Asthma like. So roll on next Friday when I get speedy juice and Katina becomes Super Woman, because on Saturday have to go to Birmingham for Open University tutorials, and I tend to find places like Birmingham not great for Asthma because the pollution just triggers me off.  So the speedy juice will be extra useful.

     

    So until next time HAPPY NEW YEAR  and just another 358 days until Christmas 2011.

    Hugs Katina Geeked

     

     

     

  • Bottled It!

    by Lottielou5972 on 01 November 2010

     

    Bottled it!

     

    1st November 2010

     

    Saw my respiratory nurse for the last time today, she is off to pastures new, and I am going to miss her expertise and support a great deal.  There were a few tears on my part because I am a little stressed and had to get a few things off my chest, we parted without any answers, not that there could be any!  Just that sometimes like anyone with various medical issues sometimes I need to offload.  Pity I couldn’t do that with my respiratory consultant also today!

     

    If I have said once, I have said it a hundred times, please, please, please all you medical professionals out there, tell your patients prior to walking into a consultation that someone else will be sitting in, and ask the patient’s permission.  I know that the hospital I attend is a teaching hospital and therefore it is to be expected that at sometime you will encounter students, but not every patient is comfortable with an audience.  And I am a patient who absolutely hates an audience, ward rounds for me when I am in hospital are horrifying, I feel hemmed in and intimidated by them.   So consultations when it is only me and the medic are generally easier, but not today I had an onlooker, and only realised once I had stepped into the doc’s consultation room.  He didn’t even introduce her, or mention why she was there!  Last time he had an onlooker he introduced them and asked my permission once I was in the consultation.  Also a big no no in my book!  I feel uncomfortable being asked this in front of the “onlooker” and put on the spot, and usually feel that I have to say yes and so do.

     

    So there I am stressed, trying very hard to pretend that the onlooker isn’t there and failing miserably.  I couldn’t be honest about how things really were, I didn’t lie, just didn’t really say a great deal either.  Mentioned very briefly that he couldn’t blame my current state on my insistence, of being around dogs all the time, as lately this is barely happening because I feel so lousy.  Told him I was pissed off (and yes I did swear in front of him) that I wasn’t with Lottie Dog and Richard on the Lugg Flats right then, rather than being stuck in a consultation with him.  I said it rather light heartily, though it was true, but I was trying to cover up the awkwardness that I felt in this situation. Got checked over briefly and it was suggested that I go up to 50 mg o Prednisolone because of my current state, which I told him I hope works because I am supposed to be going to my first tutorial at Birmingham University this coming Saturday.  So then we chatted briefly about my course, at this point he is being really friendly, but it doesn’t work when I feel like a rat in a pet shop, with all those silly people staring at you and tapping the glass.  By this point I had probably hadn’t been in this consultation for five minutes yet and I was asking if I could go, like a pupil waiting to be dismissed from the headmaster’s office (yep been there, but he couldn’t cane me, they had banned it by that time, I had blacked another girl’s eye).  I was then asked when I wanted to come again, to which I replied never, because he couldn’t do anything and I didn’t want to waste his time.  He said that he didn’t view these appointments as a waste of time, well they are to me if I can’t be open, and I can’t be open if I have an audience!  On leaving I was told that my respiratory nurse was leaving, to which I replied that I knew and could he make sure that her replacement was a good looking man, which provoked a smile and a wee bit of a laughter.  And then mentally I shot out of his office and the clinic at the speed of light sadly the body took a wee bit longer.

     

    Afterwards I met up with Richard and we ate out and he asked me how things had gone, told him that I had bottled the whole appointment, and the only good point was that I managed to think before I spoke.   He asked about what, and I said that at one point it was said that I knew my chest better that the doc did, to which I nearly replied yeh 42 DD (Thank heavens I didn’t).  Got boobs on the brain at the moment, Richard was rubbing some cream onto my neck last night and whilst I was gazing at him told him I was jealous of his small boobs OMG LOL.

     

    Earlier in this blog I mentioned being “stuck in the headmaster’s office after blacking  another school girl’s eye,” and this is a very tiny part of a much longer and bigger story.  This bigger story is why I don’t do an audience, I can go to any event as long as I am not the focal point.  Throughout my childhood, both in and out of school I was bullied for having Eczema and Asthma, the abuse was often physical as well as mental by groups of other children, rarely just one child acting totally alone.  The only time I felt safe and happy was either when I had my head stuck in a book or with my then dachshund Rusty.  The day that I blacked that other school girl’s eye was the day I could no longer take the physical abuse, I was twelve, the mental abuse continued for several years longer even after I left school.  I left that identity behind when I left my home became Katina (I was never known by my proper name as a child) and moved to be with Richard 17 years ago in Hereford.   Strangely I am thankful to those children who abused me earlier in life, I can’t hate them now, after all they were only children, but they have made me in part who I am today and I wouldn’t change me for anyone, but being the focal point of their attention has had a lasting impact.  Today now nearly forty I still prefer my own company much of the time, love having my head stuck in a book and of course being with my beloved Dachshund Lottie Dog.

     

    Thanks for reading,

     

    Katina aka Lottielou5972 and Lottie Dog xxxGeeked

     

  • Sorry I haven’t blogged for a few at months chaps, but I am back, so for those of you who like my blogs stick around, and for those of you who don’t “why don’t you go and find something less boring instead.”  Those of you will get that last bit if you are from my generation.

     

    So how’s tricks?  Not great always was crap at being a “woman of mystery.”  Asthma whilst hasn’t put me in hospital has been quite troublesome.  That is not to say that the little green men, big yellow bus and me have become strangers.  Oh how I wish!  Can’t even sit at a bus stop reading a book and waiting for a bus without them tooting their horn at me, and waving like mad!  Honest some of them do, even get told off in the street by off duty paramedics if they think I am rushing about.  I suppose I should appreciate their care and thoughtfulness and inside I do, but occasionally it would be nice to be incognito.  But that is what it is like living in a small city, I live in Hereford.  So why after months of writing under the name of Lottielou 5972 am I about to reveal my real name?  Well very soon this blog will also be appearing on Asthma UK’s website, and there my photograph (oh the fun my husband had shooting the perfect photo for that) and my name will appear.  Some probably recognise me anyway, because of Lottie Dog and the fact I mention her and use my real name on the AUK message board,   So for those of you who don’t know me I am Katina, which means “Pure and Difficult,”  pure I think not, difficult oh yeah!  But to my friends I am simply “Kat.”

     

    My second course for OU Social Sciences recently finished, and the next one starts 6th November, the stress and the fact that our kitchen cupboard now has one less glass stored in it hasn’t put me off.  Though I fear the husband at times in the future will wish I had quit.  For those of you who wonder what on earth will someone who doesn’t work use social sciences for you will be surprised?  The skills have enabled me to write constructively in other situations, for example someone made ill informed comments on the Asthma UK Facebook page, which caused some lash back.  So I suggested in reply that rather than be critical of this person we could do better by making sure that people become better informed and point them in the right direction. Second example I was having a conversation with someone in my city centre, somehow we got onto the subject of immigration and employment, the person who I was having this conversation with was well informed and the conversation was becoming very interesting.  And then the unthinkable (well in my book anyway) a stranger butted in and started ranting, so what did Katina do?  Well I challenged her information, and would she be prepared to change if we didn’t have immigrant workers?  She backed away without a word, lesson here is just don’t have an argument with Katina, unless fully informed and backed with evidence.  This is what studying with the Open University does to you.  Even hubby Richard can’t say yes or no to me without explanation!

     

    So what else is going on, well myself like many others I expect are worried about the forthcoming changes to those on Incapacity Benefit.  I have spent my life fighting for housing, benefits and acceptance of my Brittle Asthma, just when my own life was looking so much better I fear change might come about because of ignorance.  I shouldn’t be fearful because I know I am genuine, but very often the system makes you feel differently even though you shouldn’t.  So to try and address my concerns I spoke to my local MP briefly last Friday after a meeting about another local issue.  I was presented with a card and told to make an appointment, oh what I surprise when I discover that the next surgery was full last Friday and another won’t take place until 10th December.  Think he and his PA have communication issues, but on her suggestion I have written a long letter with an added 36 page document written by Asthma UK called  “Fighting for Breath,”  pointing out certain page numbers that highlight my concerns, and emailed it to his London email address.  Oh well she said put it into writing!

     

    On a lighter note, despite my Asthma being troublesome Lottie and I still do some walking, all be it gentle strolls.  Richard does the outdoor pursuits stuff with her instead.  So to end here is a little ditty I wrote recently after one of our walks:

     

    Katina & Lottie went for a trot down by the River Wye, whilst Lottie had a widdle, the sky did piddle,

    Oh Why, oh why, oh why?

    The ground is now boggy and Lottie is all soggy,

    Oh why, oh why, oh why?

    Homeward they trot, soggy and hot.

    Oh why, oh why, oh why?

    Bathroom is bound for Lottie the smelly hound.

    Oh why, oh why, oh why?

    So somebody please explain to me, that when Lottie is squiffy, she is sorted in a jiffy, and I am left to drip dry?

     

     

    Thanks for reading chaps,

     

    Love Lottlelou5972 aka Katina

  • Self Management

    by Plumie on 24 September 2010

    Hi

    Sorry for the lack of posting my computer broke. I now have a new computer and finally firefox so i can blog. Yippee! There is so much to update you on.

    Firstly my whole health has deterioted massively, yesterday i was just discharged from yet another admission that was caused by an infection. I am home but very weak, drained and tired. I am finding that antibitics are not fighting infections in me any longer so my consultant has decided next time to try the traditional method. I am not sure how this will work but i guess only time will tell me that. I am finding it very hard to be back home i barely have the strength to sit and type with my laptop on my knee let alone get up and make drinks or snacks. Thankfully i do have home care coming in to help me twice a day.

    Secondly i am slowly learning how to self manage all my health conditions with very little help. This is a huge achievement for me.

    Thirdly my asthma is controlled but tempremental.

    Fourthly I have my first boyfriend and he is not bothered that i am an ill lady he is happy with me the way i am. This has made me very happy. Especially as i have been very down because my health has been going around in vicious circles. At the moment i am unable to leave the house due to lack of strength and energy. I keep building it up only to get knocked back down again.

    Fifthly i find the majority of the worlds population are not very understanding towards people with long term conditions they seem to class us as lazy. I do not think this is fair and it has upset me quite a lot recently, as i really want to be doing things i just cannot. I physically cannot do it no matter how much i try!

    Any way i hope to update more often again now, inbetween admissions.

    Hope you are keeping well

    Plumie

  • Asthma from Heart Attack drugs?

    by MrTebes on 08 September 2010

    Hello Everybody

    As an introduction to this blog let me give you my history.

    I was fit and healthy with no ailments until May last year when at the age of 55 I was surprised with a heart attack. No signs, no warning. But hey - I pulled through OK and I am now physically fit.

    Well, almost.

    Last May I was put on the usual cocktail of drugs for patients with Heart Disease (Aspirin, Bisoprolol, Ramipril etc).

    After a few days I returned home with a stent which fixed my heart but I noticed sharp pains in various places across my chest. These continued almost very day but weren't particularly painful. I had no idea what these were - and no one was able to advise me. Last winter I spent a few days outdoors when it was cold (on several occasions) and then the pains became very noticeable and I felt very tired - sitting down in the warmth seemed to help. After it became really bad during a week in the Cotswolds in March I called my GP who referred me back to the Cardiologist.

    Within 5 minutes I had described my symptoms and he told me that it certainly was not my heart (angina). To him it seemed more like ASTHMA! I have never had asthma in my life so was quite surprised.

    My GP's response was to reduce my beta-blocker (Bisopolol) to the lowest dose and give a me a Ventolin inhaler. That was April. On several occasions since then I have taken a couple of puffs with the inhaler which usually helps for a while. But the frequency of sharp pains in my chest is increasing - so the reduction in beta-blocker dosage has not helped at all.

    Does anyone know if Aspirin or Ramipril could be the cause of my asthma? I have searched the internet and some US blogs suggest that Aspirin could be the cause. I have heard horror stories about Ramipril.

    The continued attacks are very disconcerting.

    Any advice or comments would be most welcome - please!

    All the best...

  • Tuesday 3rd April 2010, 4.15 am

     

    Hells bells, what the Dickens am I going to write about in this week’s blog? How taking Prednisolone can make me euphoric and lack inhibition.  Don’t worry I won’t be describing any antics how I have stripped off at the local rugby match, I only watch it on TV.  Oh well that’s the first paragraph taken care of. 

    Initially the following won’t make sense to you but please stick with it; all that I write in this paragraph has taken place at comedy gigs over the last 10 years or so.  Bill Bailey gets a female member to say into a microphone Jean Michel Jarre is crap (French Musician), Bill programs it into his fancy computer jiggery and keyboard, and the keyboard plays “Pop Corn.”  I yells out Jean didn’t compose that; Bill yells back there is always bloody one!    Jo Brand tells me I should be in the nut house after discovering in the course of my usual heckling that I then used to wander about locally with two rats on my shoulder, and I reply “Well you should know you used to work in a nut house.”  I have snogged Lee Evans at the end of a gig, and only recently I heckled Jason Manford so much, he wished my husband the very best of luck because the poor ****** needs it to live with me. (This is only a small selection of the poor comedians I have heckled over the years)

     All of the above has really happened, and I can truthfully say that I was in complete control and my lack or inhibition and euphoric behaviour was down to my pure enjoyment of the shows and my cheeky personality.  How do I know? Well I would not have had such a good memory of those events.  Prednisolone to those who are not aware can affect your mood, making you feel either low or extremely high, I have experienced both.  Low is easier in some ways to deal with, people think you are miserable cow and just tend to stay away, but when faced with someone who is high as a kite, it can be rather embarrassing. Hubby in the past has had to put up with me chatting about utter rubbish for hours, but because I was so euphoric I can’t tell you exactly what I said because I had no self awareness.  It also caused problems when I was still working, I got into trouble for giving all the men in my department a hard time, they would start a joke and apparently I would always take it one step too far.  It was a family member who had to take me to one side and explain that I was actually making the men feel very uncomfortable and my male boss was too terrified of me to say anything.  Back then I was just starting to take huge quantities of Prednisolone on a regular basis, I now attribute this behaviour to the Prednisolone because even though I still have a very cheeky personality, it is only something I share with a chosen few and I always know where to draw the line.  These days because I have been taking Prednisolone for so long the euphoric behaviour rarely happens,  I generally only experience it when I have been taking mega doses for weeks, then the episodes are generally short lived, and I tend to be just a little more talkative than normal.

     

    But without the help of Prednisolone I have just experienced an euphoric moment, its just gone 4 o’clock in the morning (yes I am really writing this at a stupid hour, but once I get creative, I have do it or the moment is lost) my blog writing has been disturbed by watching Harry Hedgehog crawling around in a bag of decorative slate eating snails and slugs outside the bedroom window, he was making little higgy pig noises of delight and I have been giggling away with the sheer pleasure of watching him.  Oh well expect Harry Hedgehog is making higgy pig noises somewhere else now, Lottie Dog is in slumber land making slobbery noises probably dreaming of food, if her daytime activities are anything to go by, hubby is back in slumber land too after making me aware of hedgehog, and I am now going to join him, whilst trying to avoid the temptation of sticking my cold feet on his …………………….legs, well what did you think I was going to say?

     

    Cheers Lottielou 5972 

  • The Bionic Leg

    by Lottielou5972 on 29 July 2010

    I'm feeling poo, well not literally, but I suppose I do most days, well sort of true/not true.  If I was talking about tidying up after Lottie Dog, like any responsible dog owner should true, if I am talking about my Asthma, well I cannot even explain how it effects on me on a daily basis because, being a variable condition and being Severe my condition changes or can change quite suddenly at times.

    For those of you who read this blog regularly you are probably thinking well she wrote about "Variable" last time, well true but having read Asthma UK's report on Severe Asthma published last week, it is nice to see in print exactly what I and many other Severe Asthmatics experience on a daily basis, but as to it making a difference, well until our conditions and daily effects are really pushed into the public limelight, and shoved (yes shoved) down the throats of Department of Work and Pensions, NHS, and the Government I expect little will change.  Discrimination has been a big part of my life where Severe Asthma is concerned, I have been openly singled out in Asda's Disabled Bay, recently the car park attendant made a big display of checking my Blue Badge, but didn't check the ole biddies who had just parked their car, hello just because you are over the age of 70 doesn't mean you automatically have a Blue Badge, likewise just because you are 39 doesn't mean you don't need a Blue Badge.  Has you can imagine I didn't let the attendant get away with that one!  Stood just a short distance away from him and made my feelings publically know, and a short while later he came up to me and said "oh you do sound poorly today," I just pretended to be deaf also and walked off, wasn't in the mood to make him feel less guilty at that point.

    Regularly I feel that I have to explain why I have a bus pass, live in a ground floor flat, need my husband to carry heavy things because my disability isn't obvious, but why should I?  Well as a member of staff at the Royal Brompton once told me, you don't need to explain yourself, but in real life invariably you do, humans very often will except nothing less than an answer, and if you say nothing or tell them it's none of their business you are considered rude and unpleasant.  Mind you sometimes rude can be good,  when someone gives me a dirty look for using a disabled parking space, waving my syringe driver at them instead of giving them the finger can be hugely satisfying.

    The worst case of discrimination I have ever experienced was probably by the Department of Works and Pensions several years ago.  I was medically retired when I was 23 to my disgust.  For years I have hated the fact that I do not work, and until this incident tried all sorts of ways to get back to work.  For several years I studied at my expense professional interior design and finally undertook a HNC in Spatial Design.  I chose this path because building design had always been an interest and  I wasn't encouraged as a school leaver down this path.  On completing my course I felt that I wanted to put what I had learnt into practice and because at this time I was doing very well with the Asthma that I could undertake part time work in this area.  Having not worked for such a long time knew that my best way back into work was with the help of the Department of Works and Pensions.  On my appointment day my interview took place in a windowless room with a female back to work advisor.  The conversation went over my work history, why I wanted to return to work and I also showed her a portfolio of work I was now trained to do.  During this time my syringe driver made its usual buzzing noise as the syringe driver is driven, i see a curious look pass through the advisor eyes, I say nothing (I confess I am enjoying myself too at this point, thinking here we go again), my syringe driver goes again, the advisor starts looking about the room.  To make the introduction of my syringe driver rather relaxed so people hopefully don't get too worked up about it I tend to use humour.  So on that basis I told the advisor I had a bionic leg, my syringe driver goes again and then I say that I was only joking and actually I have a syringe driver.  Advisor asks what a syringe driver is, I explain that with the aid of my syringe driver and the medication in it I can lead a much more comfortable life.  Advisor still cannot understand what a syringe driver is, so I break it down into two separate words and explain it even simpler terms.  She still doesn't understand (god we employ such people in the civil service, and I can't even get a job), so by this point no other option is available and I remove bag from under the tunic I was wearing, takes out syringe driver and show her exactly what my syringe driver did and where the medication was delivered. Ta Da!*!*!  Did she understand after all of this, no not really, she just saw a medical device, couldn't appreciate that because of it I was enabled.  So the outcome was that I was told to go and do voluntary work for 12 months and then return for another back to work interview. Crikey, bloody hells bells, disability doesn't mean you cannot do something, it just means that you have to do things in a different way.  In my time I have done all sorts of voluntary work, from working at a Nature Trust to working at my local hospital and 12 months from the end of that interview I knew my life wasn't going to change and neither was the Department of Works and Pensions.  That might sound rather negative, but this story happened 6 years ago and people today are still experiencing difficulties getting work who have long term health issues.  I know of one person who fought her local NHS employer who sacked her because of her Severe Asthma, she won her case thankfully, happy ever after, no not really the Department of Works and Pensions offered her a role as a Sales Assistant.  Not only was the job totally unsuitable because of her health but the poor lass is actually very highly qualified with a degree, total insult.

    Yes my blog has been quite serious this time around, but discrimination effects many Severe Asthmatics on a regular basis, and I just wanted to highlight some of these issues try make those who read this more informed and aware.  Asthma UK's report on Severe Asthma does this well, but unless you know of it's recent publication you are unlikely to read it.  So I urge you please visit Asthma UK's website and download it and read.

    Cheers Lottielou5972

     

  • Variable

    by Lottielou5972 on 22 July 2010

    Weather variable, pants variable (not as variable as I would like, why do manufacturers think everyone over a size 22 wants to wear apple catchers?) Asthma variable, they say variety is the spice of life!  Well I don't like it, I want warm sunny days without the humidity and Asthma that lets me do what I want to do when it suits me, not when it suits the Asthma.  Yes you got it Asthma is playing up again, and I am really cheesed off.  Last week for any of you didn't read my previous blog I was going to Wales for a few days, well hubby, Lottie Dog and I did go, and for any of you who are wondering (who read the last blog) I took way too many pants.  The break didn't go as planned, "Ella" (that's our car) broke down, but thanks to a lovely RAC man got us to a garage where our car was repaired within 3 hours, but that wasn't before I had a hissy fit and burst into tears in front of RAC man, having a total melt down because I was scared stiff that we wouldn't get back to the marina where we were staying in time to fill up syringe driver.  On a good day leaving the syringe driver off for a while is fine for a bit but right now I can only get by for about 30 minutes without it, and couldn't cope with the idea of being unwell away from home and familiar hospital staff.  It is tough enough explaining my condition locally, but when my hospital notes appear (all 6 volumes of them) it is easier, away trying to explain my condition would be extremely difficult, something I have never had to do yet, of course I carry all the necessary letters in case of emergency when away, but like anyone I think when ill would rather be at home to deal with it.

    Due to the very precarious state of my Asthma, I didn't get to do any of the walking I would have liked to have done, and had to be content with hubby and Lottie coming back with photos of their exploits, whilst I just read and listened to music on the narrow boat.  Now back at home my Asthma and general state of health remains precarious, Tuesday because of my health I was struck down by fatigue and out of the entire day was only awake for 3 hours, and then even though awake was so tired could not make head nor tail of anything I was doing.  Yesterday (Wednesday) I went out to town with Lottie, to do some of the everyday stuff we all have to do like banking etc., and last night really suffered for it, my Asthma was quite bad and as often happens when my Asthma is bad my Eczema flared badly and I itched from head to toe making me thoroughly miserable.  For which hubby bore the brunt of later on that evening.  Later I was in desperate need of my hair brush, not to brush my hair as most people would use it for but to scratch my back with, I do own a back scratcher but find my hair brush is more effective.  I couldn't find it, and swore blind it was in the bedroom, ranted at hubby who bless him searched high and low also to no avail.  He then asked me if it was in my little back pack, well ***** hell should I know I yelled back, which when he searched it was.  Did I thank him, no I didn't, just went off and had a another hissy fit in the bath tub.  Of course I shouldn't be so crabby to my other half who is trying to help, but that's what it can get like when you tired and getting no let from the symptoms of Asthma and Eczema, they truly drive you round the bend and off your trolley.

    Having now had a bath, nebbing while hubby is applying cream to my itchy skin hubby asks if I would like a big fan, but warns me that I will have put up with it yelling and cheering all night, he is trying to lighten the atmosphere and make me laugh bless him, but sour puss that I was just said yes please and my little electric fan was replaced by a big one to try and cool me down.  Thankfully between some extra smarties (tablets), big Gail (electric fan, many of the things have pet names in our house), all the bedroom windows open I did manage a reasonable night.  Today the skin feels a lot better but the Asthma remains variable, done some ironing and written this blog, but that is all as I simply can't cope with getting hot and wheezy together right now.

    So tonight the only threesome I am interested in is Gail (Big electric fan), hubby and me wearing spotty pants, well they say variety is the spice of life LOL .                                                                                        .  

     

  • Pants

    by Lottielou5972 on 10 July 2010

    Pants, yes life is a bit pants this week, Asthma pants, and how many does a girl need for a short break in Wales.  Any answers to the how many pairs of pants does a girl need will be gratefully received, feel free to leave your comments at the end of this blog post.  Actually only joking about the last bit think I just take the whole drawer problem solved, well that "pants" problem.

    Asthma starting to play up again, on Monday of this week going to the respiratory consultant, yeh everything fine, steriods back down to maintenance level of 20mg, no syringe driver, walking every day at least a couple of miles with Lottie Dog, next day stable Asthma has gone off on a holiday and variable Asthma back in residence.  No reason that this has happened, of course the weather is very hot but it has been for several weeks and apart from hayfever I have been fine, yes some decorating has been done in the flat this week, hubby did it I disappeared out with Lottie Dog, but can't blame that because I decorated another room last week with the same paint and was fine, so typical ole me like the meaning of my real name being difficult with the Asthma again.

    So what else has been "pants" lately, well I saw the pants of a drunk I found out cold on one of my walks with Lottie Dog, and for once had to call the little green men with big yellow mini bus to his aid rather than mine, but that "pants" story isn't as "pants" as the respiratory appointment I just mentioned above.  I really like my consultant, but this time I feel a little cheesed off with him, got invited into the consultation to be told that we had an "observer,"  did I mind, well actually I did, but I am "pants" at saying yes I do mind, and then I just couldn't wait to get out of that room.  It takes me ages to trust anyone, and sorry I am not going to open up to anyone that it has taken time to build a confidence with in front of a complete stranger.  To any medic reading this please have the decency to ask your patients about observers in consultations prior to them entering that consultation room, some people like me feel that they are put on the spot when it is said in front of a potential observer. Anyway in the short time I was with my consultant told him that I wasn't using the syringe driver at that time, and got asked was it because I was being denied the medication, which I felt was a stupid question because he knows me well enough now, that should such a thing ever occur I would be chewing his or the respiratory nurses ear off (not literally, but I am not the kind to let the system walk all over me).  Then asked whether I was still getting my "Drugs" from another consultant, and if I was perhaps that is why my Asthma is so good!  Which again I felt a bit annoyed at because 1.  The drugs, are chemotherapy and I found myself explaining myself to the observer, in a jokey way to get over my embarrassment because the way my consultant had approached it. 2.  I had previously told my respiratory consultant that the other consultant had said the chemo would have no effect on my Asthma.  And at the end of my brief consultation (because I made out that I was super happy with everything because I couldn't bear to be observed) the respiratory consultant then said maybe next time I see you, you will be off steriods too, I think he was probably joking but come on, I have been on steriods for 30 years since the age of 9 not likely ever.The whole consultation was a total waste of my time/consultants time/observers time, I was in there for about 3 minutes and no one learnt any thing, because my barriers just went up.

    So to regular readers of this blog you have read the word Chemotherapy and thought hells bells she has Cancer, well I don't, I probably have a very unusual condition called Churgs Struass Syndrome which rarely people with a history of Asthma or allergies can develop.  Because my symptoms are the possible/likely early stages of this condition and because of my previous medical history Chemotherapy is used in the first instance.  The dosage I have is fairly low and apart from starting to feel a lot of fatigue now, I haven't experienced any side effects so lucky ole me.  I have a few more "slugs" of chemo to go as my other consultant calls them then yet more tests.  And depending on the outcome of everything I may well be treated with another immunosuppressant drug, but that will need to be considered carefully because it can I have been warned cause lung inflammation by the consultant, and having Asthma already, well who knows!

    So "Pants" for reading this, sorry I meant "Thanks," no not really just my terrible sense of humour creeping in again,

    Lottielour5972

     

     

     

  • oops July is here!

    by Plumie on 03 July 2010

    Sorry folks for lack of blogging, just realised it has been a month again! Ooops!

    Asthma has been doing pretty well and i am managing to build myself up quite nicely. Had a few blips here and there but no emergency visits so all in all quite good.

    Last week saw a visit to Alton towers, this was an enjoyable day although i am not quite sure my lungs agreed. I also do not like lifts for disabled people to get to the rides. Press and hold button in order for the lift to go up in pitch blackness. I used my wheelchair all day for this visit and still ended up very breathless and wobbly.

    Today my new housemate has moved in to join me in the house. Company at last! Yippee!

    Wonder how long it will take for her to become sick of my coughing or the lack of me being able to do lots in a day?!

    Social services have finally got there act together and i now have morning and evening calls, help with socialising in my wheelchair, help with shopping and accessing medical appointments, help maintaining a housing contract and bills, and a cleaner! So that my lungs can be relieved of as many dust mites as physically possible.

    Will try to blog more frequently this month although not promising.

    Plumie

     

  • It has been a wee while since I have posted here, and the same can be said of the "little green men," there have been no close encounters with them either.  So from that last little bit you can take it that wheezie tubes have been behaving themselves and life as been pretty good.  After spending months on high dose prednisolone I have at long last managed to get back to my usual 20mg.  Oral Theophylline has recently been stopped because despite increasing the dose I still have symptoms and so my respiratory nurse agreed that taking it was no longer necessary if I wasn't finding it beneficial.   I have also been managing without my subcut Bricanyl, but now I am down to my 20mg of Pred shall probably have to start using it again soon, as use of little blue puffer friend is becoming more frequent.  

    But as I said at the beginning of this post, life has been treating me pretty good, in the past month I have been walking daily with Lottie Dog and a neighbour's little Shitzu Lady regularly joins us.  Our walks have included many gentle rambles and some have even taken us up Garway Hill in the beautiful Golden Valley in Herefordshire and the Malvern Hills.  My walks have brought me, hubby and doggy friends lots of pleasure and a great sense of wellbeing, particularly me because it has been months since I have done any proper walking and really missed the wonders of the great outdoors.

    Now the summer is pretty much upon us, the pollen is causing a few problems but because in myself I feel so well not finding it too much of a trial, though could have done with the postman on Monday morning being a little more diplomatic about my appearance as opposed to telling me I looked rough. Nice! Not!  Besides at 11 o'clock in the morning anyone looks rough, or is that just me?  Generally I never feel or look human before about 3 in the afternoon.

    Several weeks into my Open University Social Sciences course now, and sent my first assignment in Sunday night, hoping I will get a reasonable mark, did start the course a bit late because of the health issues and was allowed an extension but just did my best and got it in on time as I didn't want to fall behind with the rest of the course. Still struggling with being motivated, naff at routine, can't see me ever changing but I have also discovered a great new author in crime thrillers and so I spend hours with my head stuck in the wrong kind of book. Which is also a bit annoying for hubby when he wants to sleep at 2 am and I have the light on reading, and with the World Cup starting tomorrow shall have my head stuck either in a book or studying because I can't stand the football.

    Sincerely hoping that my health continues to be reasonable for the foreseeable future because there is so much do around the flat, a new floor and total redocoration of the hallway, major paint job in the bathroom and bedroom and 60 feet of 5 foot fencing to be repainted.  Of course I won't be doing it all myself, but want to be in the foreman position dishing out the orders to hubby, only joking about the last bit, plan on helping as much as possible too.  You are probably thinking crikey she has it all planned, well I do, but I had it all planned months ago but because of poor health it all went on the backburner.  Really hoping this time that it all gets done.

    Anyway getting on now and my crime thriller is calling me, hoping who ever is reading this, is not having too tough a time with the health and wishing you all a lovely summer.

     

    Lottielou5972 xxxx

     

     

  • June is here!

    by Plumie on 05 June 2010

    Hi

    Sorry for being so long in posting. I have been really busy and therefore needing to rest in the quiet moments i have had. My asthma is behaving quite well at the moment. I am still getting frequent symptoms in the night but am managing ok through the days. I saw my consultant the other day and achieved a normal spirometery so i am quite happy. I am still on 5mg prednisolone as a maintance dose. I am experiencing lots of cramp in varying places from legs to ribs this i am told is the nebuilsers that cause it. I am managing to play 3 short flute pieces a day and am looking to build this up. The hayfever keeps taking my voice and leaving me with a croak but apart from this i am doing quite well.

    I now have a simple routinue which i am mainly managing to follow so this is quite encouraging. I hope other people are coping ok. I am starting to accept my new slower lifestyle and i have almost learnt how to listen to what my body is telling me.

    Plumie

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