Whats your reality??

The other day I picked up my medication from the pharmacy and laughed when the handed me over a shopping back but then went back for another one!!! I know all the people in my pharmacy well and will always have a chat with them but I have never really told them whats wrong with me. They know I have asthma but they don’t know much about it etc, until the other day when I hadn’t been in for a while. I collect my dosette box weekly from them and will get a top up of inhalers etc every so often. She asked where I had been so I told her I had been in hospital and thats hy hadn’t been in. She was shocked. She said she didnt realise just asthma could do that to someone. I went on to explain a bit more about it and how it impacts me and explained what all the meds I take are for. She said she ha wondered as didnt think asthma could be like that. She said it must be hard but its life. Life for everyone is hard at times but it is what you make out of it.

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I have days where I really resent having asthma and wish I could go back to primary school I think P3 was when I was on just one preventer and a reliever and that was it. That would be wonderful but then what would I have achieved in life if I didnt have the difficult asthma. I am sure I would be proud of my life but Im not sure I would have done nearly half of what I have done and a lot of it is because of my asthma such as publishing an article in the BMJ, playing for Scotland in the Home Internationals, be back as a goal keeper in lacrosse, speaking at so many events, speaking on a masters course at Edinburgh Uni, being a nurse, being development director for Lacrosse Scotland, being a PPI lead for AUKCAR, being a RaP volunteer at Asthma UK. None of these things I would have done and I also would not have met some fantastic people on my way and made some great friends. I am thankful for my asthma to have given me these oppeturnities inspire of also giving me some of the hardest times in my life and living with the fear that it could kill me one day. (but then as my mum says you could cross the road and get knocked down by a bus so you never know what is runs the corner!!!!

I would love for a day when my breathing is a little less challenging and a little less limiting but I think in a small way I am glad it has shaped me the way it has.

The reason I wrote this out was because I just picked up my meds as I wrote in the start and I organised them into my cupboard to make them all neat and so I know what is where. I was getting lost with the meds and what I was taking when. It was over whelming but my pharmacist has reduced that a lot by sorting my meds out weekly but they were also all in a box just chucked in so never knew what I had and what I was running out of. Now they are neat in a cupboard which I can close the door on. Closing the door- after some carful tetris packing because it wouldn’t shut the first time round, made me think about what we hide from the outside. What is our own reality and what is the reality that we allow people to see. My life on the outside is very different to life in my flat. I find when I am at home I am resting and doing treatment to allow myself to go out and about and be with friends or coach or something else. It is like two polar worlds- one which is in preparation of going out or the recovery of being out and then the being out and doing things. Its keep the private and the public separate until you read this and realise that asthma is not just asthma but it is much bigger. It is life changing, life threatening, life limiting.

 

But take each day as it comes and rise to the challenges that are thrown at you and achieve what you dream of achieving as it is always possible it just has to be achieved in different ways with some imagination sometimes. For instance I always wanted to play lacrosse for Scotland but never did I think it would be achieved by being in the goal, I thought if it was to happen it would be playing out field.

Good things come to those who wait.

Life is for living not watching it go by in front of you!

 

Are you your illness/ condition?

Recently in a lot of groups, on Twitter, Facebook and Instagram there have been various projects or statement about not being your illness/ condition and not letting it define you. So many people have been jumping on this and saying how they are not their condition, or that their condition is part of them but not who they are.

I’m not sure I agree with this. Asthma has dominated my life and dominated it even more so for the last 11 years. If I was to say I am not my condition or my condition does not define me would be a blatant lie.

I am my asthma and asthma is me. I will never be able to get away from it or have some memory of asthma around me everyday. As terrifying as having asthma is, as life limiting it is I am embracing have it. There are some really rough days where I wish I didnt have asthma. Those days where it is a fight to get every breath and just drinking is a mammoth effort I do wish I didnt have asthma. Then there are the days when having asthma doesn’t inhibit my ability to do anything as long as I take my inhalers, tablets and nebulisers. Those days are great. With the good days come the bad too.

Wishing for a cure is something I do everyday. To have a cure would mean my body is not crippled by side effects from taking prednisilone, my heart rate would drop below 100, I wouldn’t have a constant tremor from relying on short acting beta agonists, going outside I wouldn’t have to worry about what may happen which could provoke an attack, i wouldn’t need to plan my day around medication, I wouldn’t be on first name terms with my pharmacist, I wouldn’t know all the nurses in various respiratory wards around the UK. These are all things I wouldn’t have to do if a cure was found for asthma.

BUT

A cure is not going to come in the near future as nice as it wold be so until then I embrace having asthma. It is me, it is a massive part of my life. I hate it but at the same time having asthma has given me so much to live for. Just by having severe asthma I have done so many things I never would have thought about doing. My life is now defined by having severe asthma. My work was chosen based on my asthma, my volunteering is based on having asthma, my work with the research centre I would not do if I dint have asthma, my involvement in my lacrosse club would not be what it is if I didnt have asthma. I have no idea what my life would be like, Im sure it would be very different but would it be different in a good or bad way? Its a question I can never answer and I don’t want to know the answer.

The only thing I do want just now is to not have so many life threatening attacks which land me in the resus room and weeks in hospital. Those are fights I could do without. I would also love for my consultant to be able to over me different treatments to try and not need to take my case to a group of experts to try and find some kind of treatment to give me some life back.

In all I am my condition. To say Im not would be a lie. But I am proud to be defined by my asthma. Not having asthma I wouldn’t have done all I have. It would be nice for it to be a bit better controlled but in the future it will be.

What I want to say is all those who don’t want to be defined by their condition think about what you have done because you have it which you wouldn’t have done otherwise? Our conditions are part of us. They make us who we are. The stigma around having them is hard but when you embrace it mentally you can deal with it so much better!

It never gets easier!

Just under 2 weeks ago I had another pretty serious asthma attack which ended up with me being admitted to hospital for over a week. Over the years I have had loads of asthma attacks and all of varying degrees, different situations and surroundings yet this past one is one I am finding the most difficult to process and one I am feeling the most insecure and scared by. As far as asthma attacks go it was not the worst but not the mildest either. So what is bothering me so much?

The weeks preceding the attack I have been slowly but surly going down hill. I was having difficulty fighting off a viral infection which plagued me. Ironically when I got up to go to work the morning I ended up having an attack I actually felt better and thought I had turned a corner and was throwing off the infection. The previous day I felt awful and was debating not going into work. I felt better so I went in.

It didnt take long or much to start me sliding down the slippery slope. I had to go from inside to outside and back in again to see a patient and doing this really hit me. The change in temperature felt like fire in my chest. Walking back to my unit it felt like someone was tying a belt around my chest and not letting any air out. By the time I got back I knew I needed to go home but I didnt want to admit it. I found my charge nurse and told her. I don’t think I needed to tell her I was not well as her reaction was to take me into a treatment room for me to have a neb. I struggled to put it together but didnt want to show how much I was not managing. My charge nurse was great. She asked if I needed to go to A and E at which point I said yes. No sooner had I said yes, I was in a wheelchair and on the move to A and E. We flew through the corridors of the hospital. I don’t remember it at all really. The next thing I was there in triage having obs done. From here on everything moved so quick. I was hoisted up onto a trolley and taken through to the Resus room with a consultant and reg who looked after me. My anticipatory care plan came into its own as I didnt need to say much and all the information the Drs needed was there. I was in Resus for quite a while before I was stabilised and brought back into the main bit of A and E. The Drs were all fantastic. I needed a lot of IV medication this time. IV aminophylline was started in A and E. For me we normally wait a bit and see if lots of nebs etc can get on top of it because of the issues with my heart but the Dr’s decided to start it. I was glad as I was getting very tired and felt like I had no energy to fight anymore. I was moved through to a monitored bed in the assessment unit after that to wait to be seen by Respiratory and a bed in the Resp Ward.

The whole A and E experience was really weird for me. In fact the whole attack was. I don’t know how to feel about it. It was a number of firsts for me. It was the first A and E visit using my anticipatory care plan which worked well so thats good. This time was the first in a very long time I have ever had anyone with me in A and E. I often find it difficult to have people around me because I see how scared they can get and the fear I see in them makes me scared which ends up being a bit of a vicsious circle. I did like having someone with me. It was a comfort when getting stabbed and poked and all sorts to have someone there to distract you and take your mind off it. The other thing about this attack is that it was the first really serious attack I have had at work in front of my colleagues. I have had days where Im chesty and not great but never had a full blown asthma attack in front of any of them. They are all nurses so will have seen people with breathing difficulties but when it is your colleague it is a bit different. Part of my anxiety about this is that sometimes when I have an attack due to being short of breath and oxygen etc I can do and say stupid things (for example I once tried to squeeze through the cot sides of the bed cause I thought this was the way to get out of bed!!). You can do and say stupid things in front of family but work mates is a bit different.

I shouldn’t be surprised that it has happened. I have done pretty well to avoid any major attacks in front of them until now but it has shaken me quite a bit. This whole admission has shaken me quite a lot of a few different levels. I will post about them once I have sorted my thoughts from the rest of the admission out. I have only processed the acute phase of the attack as so much happened.