The cost of 4 hours fun

Last night I was able to do something I have not been able to do in a long time. I went to my work Christmas night out. I had a fantastic time and really glad I made the effort to go.

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For a work Christmas night out most will be planning on what they are wearing, where to go for pre drinks and maybe have food in for the day after when you are hungover, but for me it was far from this there was a lot more planning and making sure everything was ok so I would be able to last the time and not have too many ill effects.

The preparation started middle of the week before by not dropping my prednisilone dose down. I have been trying to wean it down but I decided that to enjoy the night I would need to keep my steroids up which is not ideal but sometimes we just need to take more meds to give yourself a boost and enjoy yourself. After work on Friday it was time to down tools, have a nice bath, early night and rest. This was the theme for Saturday too as I knew to be able to have fun I need to conserve my puff, and energy and limit what I was going to do during the day. It is a choice between rest and have fun or no rest and no night out.

The rest sure was worth it and all the preparation. It was a personal triumph because for once all the planning and running through scenarios that might happen meant I was ok and managed everything ok. I did perhaps over do it on the dancing but I do love a ceilidh but thanks to modern technology I was alerted by my watch when my heart rate was way way too high and I needed to stop. I had given myself till about 11pm to be out till and am pleased that managed till 1030pm  before I decided to quit and go home. It wold have been so easy to think sod it an stay on longer but I made the right choice to go when I did as I don’t want to risk anything too much and really pay as a result of it.

Today has been a flop. My body is aching, my chest hurts, i feel short of puff and just a bit  rubbish, but at least I am feeling rubbish because I did something and pushed myself rather than feeling rubbish and not having a reason for it. One thing that really bugged me and it bugs me a lot but more so when it involves people who I know is those that decide to smoke and because its cold outside they smoke right at the door so when you open the door you get hit with a plume of smoke rather than fresh air. I guess when you smoke you don’t think about the air quality but when you have lungs that are twitchy and you have done all you can to ensure you are safe and avoiding triggers but still cant avoid them.  I find it really selfish because it is putting others at risk and effecting others along with yourself and those others have not asked to breathe in air packed with nicotine, tar and tabacco. I know some will think I am being unfair and its coz there was drink involved but Im pretty sure if I was to do something similar where it had a negative effect on them, there would be questions about it and a fuss would be made. Alcohol always seems to be an excuse and people don’t know what they are doing when they are drunk. But if you don’t know what you do when your drunk you shouldn’t be drinking.

Thankfully because I had my trusty portable nebuliser in my jacket pocket, inhaler in my trouser pocket and my buff to keep my neck, mouth and nose warm I was able to self treat and get myself home in  a reasonable state. It scares me to think that if I had not made sure I have all this stuff with me I would no doubt end up in hospital at the hands of other people. I may sound grumpy and you may think why did I bother going but I am glad I went and was all good while I was inside it was just when it was time to go home that things were not as great.

So Sunday (today) was a day in bed, resting and recovering ready to face the next week ahead with minimal ill effects. A Sunday roast with my mum and step dad set me up for a quite evening before back to work tomorrow.

I am really pleased with how I managed everything in the lead up to the night out and then knowing the right time to go home rather than pushing on because I was having a good time. It has taught me that yes the planning and pacing is worth it and it does work but also that its ok for my body to need extra time to rest up for something but also rest after the event. We all have different reasons for things and just because I need to plan things in more depth doesn’t mean I cant do them and doesn’t mean I should avoid them. I am glad it was a good experience as I was apprehensive that I wouldn’t cope, or that I would get carried away and push my limits therefore ruining the evening for others who would need to help me because of my inability to look after myself.

For pacing I have found the website My lungs my life really helpful with tips on pacing, planning and how to manage your condition while juggling all other aspects of life.

Ask me questions about Patient & Public Involvement???

I was recently interviewed as part of a study to evaluate the impact that patient and public involvement (PPI) has on research specifically within the Asthma UK Centre for Applied Research. Some of the questions made me reflect on my time with AUKCAR, how I got involved, what I enjoy doing, what I am not so keen on and what the positives have been. One question near the end of the interview was about retaining the PPI group, growing it and ensuring the longevity of PPI within the centre. I use my blog here as a way to talk about my life with uncontrolled asthma, the things it stops me doing, challenges I face but also the positive aspects of having uncontrolled asthma and the opportunities I have had which I would not have had if my asthma was run of the mill (it would be wonderful to have “normal” asthma and maybe one day soon).

I know some readers here will know what PPI is and may even be involved in AUKCAR already or other PPI groups but for those who are not I want to take the time to explain more about what PPI is, how to get involved in PPI and the real benefits to both the PPI member and also the researchers.

I could talk all day about PPI and how much I love doing it because it really has been life changing, but what is it? It is not payment protection insurance (which so many people think when they hear PPI), it is not sticking a patient on a trial steering group because a tick box says you have to, it is not to do the “right” thing so you get your grant for your study, it does not undermine research.

PPI is working with people who have or are affected by a condition to benefit research by keeping it appropriate to those with the condition. It means research is not just being done for research sake rather the end result will make a real difference to real people who currently struggle to live with a condition.

The benefits of PPI are multiple both for the patient being involved in PPI but also for the research and researcher. Personally PPI means a lot to me. It has taken what was a very negative and depressing situation and turned having asthma on its head and something positive has come out of it, from a selfish point of view it really has saved me, but then looking at the wider picture doing PPI has given researchers the chance to learn about the condition they are investigating. Not everyone doing health research has a health background and therefore don’t know the impact of having something like asthma on life but utilising PPI groups can help them understand and get the best possible outcome for their research and make it really beneficial.

Before I talk more which will probably be in another post I wanted to give readers the opportunity to ask me questions about PPI or AUKCAR, which I can then answer publicly here on my blog, it can be any question at all because if you are thinking about it there will no doubt be someone else out there thinking it to.

Please ask away!!!

Asthma Arcade

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I had a fantastic opportunity to visit Victoria Primary School in Edinburgh with the Asthma UK Centre for Applied Research. The P7 class had been learning about asthma, how it effects the lungs and breathing, what can make it worse and also what can be done to help it. As part of their learning they designed games uses a fantastic product called Bloxels where they could create characters, levels, baddies, fun fact clouds and all sorts which is then scanned and created into a virtual game on an iPad.

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The kids we saw had invited other year groups in the school to come to their Asthma Arcade to learn about asthma as they played the games. It became quite competitive as the P7 kids were wanting to get rave reviews from the others who came and played them. It was amazing to play what they had created and to see how each child was totally different and could go crazy with their imagination. There was no 2 games that were the same, some I found very difficult but I think that is more because I lack gaming ability than anything else.

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Seeing schools using novel and new tools to help children create and learn about something as important as asthma in a fun way and they all understood the reason for doing it. Some of the children had asthma and some didnt but the enthusiasm each of them had made going today really worthwhile even when presented by one child with an Asthma UK donation box asking for money!!! (sorry Asthma UK I didnt donate as didnt have pennies on me, but always willing to donate). If you want to see more the school has a twitter account where you can see more about their Bloxels and Asthma Aracade using this link: Victoria P7

I cant wait to see more that comes from this and hope that we can use their input in SPEAK Asthma events and meetings that we do in the future.

Having people who understand

One thing I have found often and more so just now is finding those friends who really understand what life is like. I have a great circle of friends but there are only very few who really appreciate how I have to live my life and the accommodations I need to make.

I have found since my breathing has got worse and everyday life needs to be planned out  it becomes harder to fit in and be able to do everything that I may have been able to do a few years ago without a second thought. I hate to think that I leave friends in the lurch but I know often I don’t commit to plans because I am worried that I will say yes and then have to pull out of something. It is just easier to not commit or turn something down to avoid the disappointment to me but also the inconvenience to others it causes if I cancel- and there is that bugging thought I have that they will just stop asking me to things as either I say yes and don’t go or just say no.

There are those few people in my life who really get what life is like and can understand how difficult it can be. One really good friend who I met at an event with Astra Zeneca just gets me and gets life. He understands, he has had asthma control his life too and desperately tries to do what he can when he can and doesn’t stop trying. When you have someone who you don’t have to ask to walk a bit slower because they can tell by the sound of your breathing that you need to slow, they don’t look at you as though your head is about to fall off for taking medication in public and someone who you can say what you really feel to. I have been so lucky to meet Anthony and since we first met conversation has come so easy and there is never that awkward silence.

When I first met him I had not long come out of intensive care and had pushed myself to go to London to speak at an Astra Zeneca event. He said as soon as he saw me he knew I wasn’t well and could tell by the way I was and the way I held myself. I guess us asthmatics do have a way about how we sit, and talk as I can tell with others if they are having a tough time with their breathing. He was so good to me and not in a pitying way but because he knew just what it was like. We have shared our challenges of living with uncontrolled asthma which stops us doing a lot of what we would like to and many of the frustrations which we both find everyday.

I really do cherish friends like Anthony because asthma can be so isolating and until you have had the struggle of not being able to breathe you really don’t know what it is like and can never know. We can give you an idea for example breathing through a straw, with your nose pegged and running up stairs but with this when it gets too much you can take the straw out, nose peg off and take in big gulps of air. With asthma you cant do this, you just have to ride through it and hope the medication works soon before you get too tired. Anthony is one person who I can really say if things are really rubbish, and that it is all too much, or that having asthma like this scares me, it really does and I hate that there are others who have it like that too but then I also don’t feel alone in feeling scared of asthma.

Being able to work together on projects with AUKCAR and SPEAK Asthma has been great as we both love working with children and people. When it was suggested that Anthony might want to come up to one of the SPEAK Asthma groups I couldn’t wait. We were able to spend time wandering around and seeing the Ice Sculptures at Edinburgh’s Christmas and then go to the meeting with the children and young people. It had been a bit of a touch week but this just ended it all on a high and made things all ok. I am looking forward to January and the Annual Scientific Meeting in Bristol where we can catch up again and arrange many more trips.

 

Rum- A History

The holy men from columns isles

With reverent step and show

By cool green dale and still blue loch

To others quietly go

O’er lonely moor and mountain praise to their god doth rise

Eagle startled soars aloft on dawns radient skies

 

Through narrow gap see shore and loch

The voiding Norsemen pour

The Holy men of Preistsdale a top they are no more

Ruined, sad and silent lies the humble cell

Desecante, blackened, broken the sacred silver bell

 

Peaks stand silent mourning tears on Kilmory’s strand

Families from home uprooted to die on foreign land

Sighs from holy Priestsdale stir the evening breeze

Wondering at mans cruelty to innocent as these

 

On a cool clean autumn morning the gentry well evolved as one (?)

To the new built lodge at Papadil the guns the gillies bore

The reeds and grasses whispered to the holy ones as these

Children in satanic mills died for the life of ease

 

The modern travellers weary gasp on the scene below

Ruined lodge and stricken trees mid primrose golden glow

On secret rock and hillock quiet spirits gently smile

Knowing that one the least of these would linger yet a while

 

Pale moonlight casts cold shadows on sterile counterpane

The useless restless fingers clutch and twist in vain

In far off lonely Preistdale the wise ones sit and wait

‘Come’ they whisper gravelley Come tis not to late.

 

Robert Fulton 21.08.2011

Grandpa

Today for me was a day spent reflecting and remembering. Remembering the good times. It is the 6th anniversary of my Grandpa’s death. A sad day but also lots of memories which made me smile whether it was walking up Corstorphine Hill in companionable silence only to be questioned by my Granny when we got back who wanted to know what we talked about. She could never believe that we often didnt say much. I also remember the times where we would wind my granny up about her soup and little things.

He was always there for me, he and Granny would take me back to school when Mum or Dad couldn’t, and he would always write to me with some pennies for ice cream when I was at school. One memory I remember so clearly was when my Uncle died, Uncle Dermot was brought back to Dovecot Road and spent his last night at home with Granny and Grandpa. I didnt go to the funeral but the day before we went round to Granny and Grandpa’s to say goodbye. The dining room had been cleared and Dermot’s coffin was there standing proudly in the middle of the room. I remember Grandpa standing next to me saying ‘its ok lass’ and we put our hands on his coffin to say goodbye.

He was a remarkable man, a man of few words sometimes but I will never forget him. Towards the end of his life he was in and out the hospital a fair bit. At the age of 90 he under went triple heart bypass but the night before his operation when I visited him he had written a poem (on the the back of his physio exercises!).

I have now deciphered his writing and typed up his poetry and will post it here.

Its hard to write.

Over all the years I have had my blog I tend to write freely, tell my story, sometimes it is a bit of a rant at things that have gone wrong or just being frustrated at my body not doing what it is meant to be doing or not doing what I want it to do! Its gets to me, more than made it should but sometimes we can’t help how we feel.

For anyone who knows me, you know I am a planner. I like to know what I am doing from one day to the next and will plan what I am doing. I just like to know whats happening, and having a body that doesn’t always allow for planning gets to me so much.  The last 6-9 months I have been having a really weird time and not really knowing what I am doing and whether I am coming or going. It feels a lot of things are up in their air and I am not sure what I am doing.

I can normally manage things ok. With the help of a psychologist who I reluctantly started seeing years ago. I remember sitting in clinic getting upset because I was so frustrated by the never ending cycle of being on steroids, being off steroids and back on them. He suggested (kind of told me) he was going to get me to see the psychologist attached to the CF unit because my asthma was having such a big impact on all aspects of my life. At first I felt like he thought everything was in my head and I needed my head examined but I soon learnt that, that was not the case and she was actually really helpful and did exercises about pacing (something I am still rubbish at) and how to deal with being in hospitals, and also the recovery when your back home. It was really helpful and I have been lucky to have that support through with my new consultant (who I have had about 5 years now!) too. It doesn’t get away from all the stress of it all. I can implement the skills they have given me but it doesn’t stop me getting upset and finding stuff hard.

I can normally keep a hold of my emotions not too badly in front of friends etc. It tends to only be family who see me upset and very rarely does anyone else. But this last week it felt like everything came tumbling down. There was nothing really specific which set everything off. With winter approaching its a risky time of year as chest infections are rife and having had 2 already which thanks to prompt antibiotics I have got on top of them but it is a huge fear that there will be an infection or a trigger that will set my chest off and back to hospital I will need to go and everything that is involved in that.

For some reason everything hit me and felt like a massive weight that I just couldn’t lift. I would say it was scary to feel like I did but it wasn’t pleasant as I just couldn’t see the point of continuing to keep fighting for what? I work and I am so grateful for that but sometimes it feels like I can’t even do my work properly and thats all I am really doing now. I have given up playing sport, and put the focus in to work as I need to make sure I am well enough for it otherwise what is the point. Things that I have to give up frustrates me as Im not really winning the battle by doing that and at work it all got to me. I couldn’t hold it together and totally broke down. i just couldn’t help it and ended up taking some days off to have a break and get my head sorted.

Over the past 10 years I have been able to live a really independent life but recently it has been harder and have relied on more people. Everything also became more real when being awarded a disabled parking badge, bus pass and railcard as well as being awarded PIP for the maximum term given to. This sort of cements that my health is not what it was or should be, but it also sort of makes it official in a weird way. as before I would just get on with it and if I had to park further away as there was no parking I would just get on with it and maybe walk a bit slower so didnt get out of puff but now I can park closer when I need to. It is odd. I am so grateful for everything and hope that one day soon I won’t need these things and can go back to work full time (maybe- hopefully!) and even run another 1/2 marathon maybe.

I think now I feel better and I have had a lot of positive things to do recently such as the SPEAK Asthma group and helping set up a critical care PPI group at the Royal Infirmary in Edinburgh and I love ding all that sort of thing. In the near future I have a few things coming up too such as being interviewed by my brother for a news thing he is doing and then more SPEAK Asthma group meetings to. Being involved in Scotland Lacrosse has been great as well and with Home Internationals coming up in Edinburgh in the New Year how can I not be looking forward to the future.

Asthma is such a frustrating condition and so misunderstood. Its not from lack of trying to understand it and better control it. Sometimes we just need to curl up and hibernate and ride out the storm. New drugs are on the horizon which hopefully won’t bankrupt the NHS like some some drugs seem to be doing. Until then pacing and enjoying the opportunities I am given to the best of my ability.

After all- no one knows what could be round the corner.