May is asthma awareness month!!!

May is asthma awareness month. Asthma is a disease which is so misunderstood. Many will live with asthma quite happily and think ‘its just asthma’ but then there is the small portion of people who battle asthma everyday and just getting up in the morning is achievable because of a concoction of medication and then sadly there are those who live with a empty space in their family where a loved one has died as a result of asthma.

So this month my aim is to try and out something everyday which will show what you can do despite asthma, what asthma has stopped people doing, what asthma has caused, what we have learned from having asthma, the day in the life of someone with severe asthma, work and asthma, sport and asthma.

But for today I am going to start on a high and write about the good side of asthma, its not a great disease to have and has dictated most of my life but having said that if I didnt have asthma I would not have had the oppertunity to do some of the most amazing things which I am so proud of.

Just now my biggest honour really is to be part of the ‘Healthcare Hero’s’ Book. I received an email the other day titled ‘Getting our Hero’s Together’. I am hugely proud to be part of the Healthcare Hero’s but have difficulty thinking anything I have done is special. What I do is to try and benefit people but essentially as I have said before if I didnt do things I would curl up in a ball and become depressed about how much asthma has taken from me and what it has stopped me doing becoming a total recluse. To be in a book with some amazing people is a true honour. Just to be along side a man who engineered a device for his own heart so he didnt have t live a life on blood thinning drugs, or the amazing lady behind compassionate care who has sadly died but her husband is continuing her work. To read the stories in the book or online is eye opening just seeing what people will do. So tomorrow I am going to Manchester to meet up with the other Hero’s from the book and for me I will be celebrating World Asthma Day but also overcoming a really difficult time for me personally so by getting myself to Manchester will be a huge achievement.

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Having a piece of writing published in the British Medical Journal was also pretty awesome. What makes it more awesome is that I always struggled with writing throughout my school career and told I was lazy but it was not until I went to do my second degree of Nursing that it was discovered that I was dyslexic and pretty badly which meant I had a reader and scribe in exams and was given all this help to get me through my nursing. So maybe I would have done better than an E in English at school had I known I was dyslexic. I now have a purple cover when reading books and it makes life so much easier. Back then I never thought I wold ever be a published writer but I am. What is even greater is that it was a learning tool for Dr on how to treat an acute asthma attack and seeing this implemented in practice is awesome especially when I was in resus once and one of the Dr’s said they read this piece about the things asthmatics find helpful when having a severe attack. I was able to write to him on the paper and pen he offered me to say I wrote it. I was so chuffed that it has had an effect on some Drs practice.

My next thing which has helped me through the last few years is my involvement in Scotland Lacrosse. After moving from a field position to the goal (18years after last stepping in a goal) I never thought much of it but being able to play for the Scotland B team at Home Internationals was awesome but then after having to stop playing even in goal I was able to take on the position of Assistant Manager which I was kindly given the nickname AssMan (short for assistant manager) which I have decided to own. I am one for nicknames and never been called my real name except at work and research stuff so AssMan joins Tux, Olive, Ollie (of all spellings), Liv, Livi (again many spellings), Wivvers, Wheezer to name a few, I am sure there are more that I have forgotten (or intentionally forgotten). Being able to go to Florida with the Scotland team in the preparation for World Cup was amazing and probably once in a lifetime experience, but I will be able to see them in action at the World Cup as I will not be with the Scotland Team but will be joining the Technical Crew doing match statistics for the World Cup so will be front and central for most matches- although I will need a lot of concentration.

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But my proudest achievement is being part of the Asthma UK Centre for Applied Research as a Patient and Public Involvement lead and helping facilitate SPEAK Asthma- the children and young peoples group. Having a role like this has given me a totally new perspective on research and opened my eyes to how much researching actually going on.  It has also given many other opportunities such as speaking at the Annual Scientific Meeting (and crying during my speech but at least I wasn’t the only one who cried!), giving a lecture to Masters students who are doing a Masters in Clinical Trials, I have been able to go to many different things at the Scottish Parliament and was invited to the British Government last year but sadly due to my asthma I was not able to. I have also spoken at events with GSK and learnt about new medications which are coming out and also now do work with Astra Zeneca for their Patient Centricity program. It is so awesome all the things I have had the chance to do because of the centre let alone all the things I do with them such as lay summary reviews, PhD application reviews, help PhD students, the list is endless and I love every minute of it even when not feeling 100% I still want to go to things as its such a great centre and has really given me my life back and given me something to do when I am not feeling great. It is putting a really big positive spin on a bit of a rubbish situation.

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I have things coming up in the near future which I am looking forward to such as the Usher Institute Showcase and being involved in things with the European Respiratory Society as well as getting emails from a variety of different researchers (not part of the centre but from all over the world) who have read this blog and want to get in touch.

I guess having things I am proud of really do keep me going when things are not so good. I was able to draw on these things when I was last in hospital and didnt think I was that unwell but was as my best friend thought I was drunk with the messages I was sending but the admission was really hard especially the 3rd time the ITU Drs came to see me and this was after being discharged from ICU but kept getting worse again and I really thought I didnt have the fight left in me to keep going and not let the attack get the better of me but thinking about all these things I am proud of makes the fight worthwhile- that and thinking of all the Scotland players as they do their insane strength and conditioning stuff- I guess asthma attacks are my version of strength and conditioning although an asthma attack burns and insane amount of calories as I found out from waring my FitBit during one attack!!!

But keep hold of the positive things in your life and these will keep you going and help you reach and achieve your goals no matter how big or small they are.

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(I got this bracelet from a really good friend who knows just how tough life is with rubbish lungs but this saying says it all!!)

Dyslexia and me

So I touched in my last post about having dyslexia and was kinda shocked by the number of people who wanted to know more about it and how it affects me.

It is a bit of a complex story really. I had what my family thought to be dyslexia since I was in primary school. I think I first went to learning support in about P4. But my parents had to ask for me to go to it. They could never work out why I was so slow at reading and hated reading. I found it really hard. I spent the rest of my school days going for learning support. I was also kept back a year at school to before my GCSE’s started as it was deemed I was ready to do them. At school I always worked my ass off to do well but never quite achieved as well as I should. I ended up with a D and two E’s at A-level. At this time I still was officially diagnosed with dyslexia. I went to uni and my lecturer asked if I was dyslexic as my work had the points but made no sense. I went to student support who brushed it off with not having the correct essay writing technique. It was not until I started at the university I am at now that I actually got tested and had a full report done. The results were a bit shocking and brought up some huge issues with both schools I was at.

I had the Bangor Dyslexia Test which were just basic questions. I then had the Wechsler Adult Intelligence Scale done which was more interesting. The average score for a normal person is 10 +/- 2  for each section with people who suffer dyslexia falling out with the norm. My results were as follows. Information (general knowledge) 7. Digit Span (ability to recall numbers) 6. Vocabulary (defining words) 14. Arithmetic (mental) 14. Comprehension (measure of common sense) 15. Similarities (knowledge of word relationships) 10.  Picture completion (finding the missing detail) 6. Picture arrangement (putting them in the right order of events) 0. Digit Symbol or coding ( making unfamiliar symbols against familiar numbers) 3. Written word rate free writing 16 per minute. The following parts of the previous test a dyslexic person is expected to score low  on information, digit span, arithmetic, picture completion, picture arrangement, digit symbol coding. Dyslexic people are expected to perform well on similarities and vocabulary. I had no idea of this before i started and other than arithmetic which I scored above average on the rest I was well below average compared with the norm.

There were other parts of the test aswell but the overall result said I suffered from dyslexia at the severe end of the scale. I also have Meres Irlen as well. This was some what of a shock when I received the news. I kinda thought I would be dyslexic but not quite as badly as I am. This is why my parents are so annoyed with my schools because they should have picked up on it. I wasnt in a big school and my biggest classes were 13 people. I am glad that I got the diagnosis eventually as it made me feel better because now I know there was a reason for not doing well in school despite working so hard. I would spend longer on homework than anyone else and still not do well.

As it now stands I get a huge amount of extra help daily. When on the computer I have a programme that reads the screen to me so i don’t have to read it. I can also scan anything into the computer that I have to read and it will read it back to me. I also have a program where I speak into the computer and it types what I say (I don’t use it so often because it annoys me!). When I do need to read something I have lilac overlays to go over the page to make the words stop swimming around so much for me.

On a day-to-day basis i find dyslexia really does affect me. i am paranoid about time management and panic I wont get somewhere on time. I also don’t like going somewhere I don’t know. i always go somewhere first to scope it out before I actually have to be there. It seems really silly to the outside people but I find being in shops quite overwhelming as I often forget what i have to get and will get confused that I just go home. In groups of friends I will often repeat myself  a lot mainly because I have forgotten it I have said something. Sometimes people think I am just not paying attention but it is how my brain works. I have to write everything done otherwise I forget what I am doing or have to do. It used to drive my mum insane when I was younger if we had a list of things to do I would go to where I had to go but would forget what I was meant to do there. My writing is also awful. If i can get out of handwriting I do. It is illegible and also i write my letters back to front a lot of the time and get some letters muddled up and don’t know what tp put so just guess!

My love just now is golf and even that gets impacted by dyslexia. In golf you normally look for the other persons ball aswell as your own. If i go to find someone elses or concentrate on someone elses game i forget I am meant to be dealing with my own game. Because at the Golf club I am known for being ditsy it’s not too bad. I just laugh it off so no one expects me to watch out for someone else. When we come to adding scores at the end I get shy and hide away when doing it because I just can’t cope with it sometimes. I can do mental arithmetics but not 18 numbers.

I try to not let dyslexia impact my life and it doesn’t to a major extent but it does on a more personal level. I get frustrated with it. Often I know what I am trying to say but just cant get it out. When I had my assessment for dyslexia it was found I actually have an above average IQ but have really problems expressing my intelligence due to dyslexia holding me back. Which is kinda weird. To think had I been diagnosed earlier and the schools paid attention to my parents concern I might have done better at school and not ended up doing sport and then i wouldn’t have ended up doing nursing. Who knows.