I was reading through a friends blog recently and it made me stop and think how true everything was that she was saying/typing. It also struck me at how much i could relate to it all. The feelings of desperation, isolation, frustration, anger, sadness etc.
The blue parts are sections of my friends blog who I asked if I could use.
Some people (and sadly, I’ve discovered -even qualified doctors!) can sometimes have the misconception that having asthma is all about having a blue inhaler, and that if your asthma is bad it is simply because you haven’t taken it, or that it can all be cured by the miraculous blue inhaler!
It’s a condition that is very hard for healthy people to understand properly, and that stands whether I’m talking about doctors or friends. People with brittle asthma often end up on huge amounts of medication, some for asthma, and others to prevent or treat complications of the other treatment!
I have suffered from Brittle asthma for 5 years now and still dont understand so when you have to try and explain to people what it is liek there is no way they will be able to ahve any understanding.
I ahve found over the years I have fallen out with numerous consultants, fought with them over the best treatment plans, tried stranage medications even ones which help 50+ women going through menopause (that was not fun) in the hope of finding something that will stabilise things out. It is so disheartening to go to a outpatients and have you Con say to you that he doesnt knwo what to do he is going to ask his collegues at a different hospital. This just means you are getting passed onto yet another Dr whon is going to ask all the same questions again and go through the meds and tests and scans etc and maybe find something that the previous Dr didnt see.
Having finished working for six weeks which is one of my biggest achievements since I was diagnosed with BA and its worsening I have hit a pitfall. I thought things were good but two days after stopping work things have gone downhill. It is a struggle to walk any distance tonight. I have followed my protocol correctly but things are still pretty unstable. I am so frustrated. I was doing so well and really wanted to reduce my steriods next time i see my con which is in a few weeks but i doubt this will happen. He has a boundary which I have to meet befiore he considers a reduction. I have to have a pf of 250 and it cant fluctuate anymore then 60 between morning and night. Well today I blew 150 this morning then 280 at lunch and now 110 so I dont think I want to show him these results!!! if things are like this tmorrow then Im going to call the reg and see what to do as I am on pretty much max home meds just now.
While talking of meds. I quoted from my friends blog that brittle asthmatics normally end up on a huge range of medication. I figured it may be interesting for other brittles reading and others in general to see my list: Ventolin 5mg Nebs 3 hrly, Atrovent 500mcg nebs QDS, Saline nebs QDS, Pulmicort nebs 2mg BD, Seretide 500mcg BD, Flixotide 500mcg BD,Prednisilone 55mg (can be a split dose), Clarithromycin 500mg BD, Doxycycline 100mg BD, Mucodyne 750mg TDS, Montelukast 10mg, Fexofenadine 180mg, Loratadine 10mg, Calcichew D3 Forte, lanzoprazole 30mg, Ranitadine 300mg, Calcitriol 250nanograms, Sando K QDS, Alendronate 70mg, Paracetamol 500mg four hourly , tramadol 100mg QDS.
This is my daily intake for my asthma. I also ahve build up drinks to help maintain a healthy weight as it can be difficult to as I am on a very restricted diet due to food allergies mainly due to salicylates.
My brain is really jumping around tonight but earlier I was saying about havin worked for 6 weeks. This is a huge achievment and it may sound silly to some people I was so proud and got over emotional about it. I told my work mates how much it meant to be to be able to do things that they could etc but I dont think they actually relasied just how much of a big deal it is and I dont think it is something that could ever be explained. I did make a real mistake though.We had gone out for drinks and i got upset over being able to be out with them and being treated normally and they didnt treat me as a disabled person…well I walked promptly into the disabled loos while talking to them which brought a bit if laughter!!
I am due to start my nursing course in a few weeks which is another huge deal for me. it will be wierd though as alot of the staff at the hospital already know me. Well those on the wards i ahve been too. I think it may be bizzarre doing placements on there and not being wound up by them or being bed bathed or whatever. I seem to have a nack with nurses that once I am feelign better I get teased and wound up by them coz they think its funny and entertaining. I think is something to do with being about their age or younger and being the only one on the ward that is not gaga.
I do know one thing is that I value my friends old and new more than ever. Those I have made over the summer and those I have met through AUK etc and those who I jsut know. Those with brittle asthma, asthma, and people who are healthy and those with other health conditions. Friends make hospital trips more tolerable even exciting. I guess jsut now i am actulaly coming to terms with how much of an impact it has in my life and will have.
I have so much I want to get off my chest and put down but feel i really am rambling a bit and not making much sense. i will proabbly read this back tomorrow and wonder what I was writing about. thoughts are flying around and around. I am going to blame the dose of pred I was told to take at 6pm so I guess I will be wide awake all night.