The last few weeks have been pretty rubbish since getting out of hospital so I kind of had all my eggs piled in todays clinic appointment thinking there would be some magic wand waved and all would be fixed- Im not sure why I thought this as I have just read the report on Severe Asthma published by Asthma UK who say they are a long way off making break throughs in non atopic asthma. So its not like I was going to bounce out of clinic like I had a new set of lungs. I know its going to take time for things to settle and hopefully out of clinic something will be done about my restless legs and arms as these are doing my head in at night, and during the day. A horrible side effect of prednisilone, theophylline and the buckets of salbutamol I like to consume on a daily basis!!! I was reassured last week when I was having a really low point and wondering how the next years will pan out and what more can be done but a asthma nurse specialist who I know and is unfortunately a kids asthma nurse reassured me that I am with the best and just need to keep positive. I think knowing that your with someone who is one of the best in their field does reassure you.
After clinic I popped up to work which is a longer walk than I thought/ realised. It was good to sit down with one of the charge nurses and have a chat. I worked out that this is the longest time I have been off since I moved back up to Scotland from Winchester. It was also my longest stay in Intensive care and longest stay in hospital so I can’t really expect to bounce back. One thing I did take from our chat was abut what I do in my time when recovering and also on my down time. I sort of realised I don’t do much I can do when not well. I love my job I think because it is giving people with long term conditions and a lifelong need for medications and therapy the ability to take control of their treatment and their wellbeing. They do the treatment they fel not so bad, they don’t do it they feel bad, but I do feel I can relate with my patients because I know what its like to be dependent on medical professionals, medication and will often joke with friends who are also asthmatic and some of my lacrosse friends that I am pharmaceutically enhanced, but I guess this is what my patients deal with too. I guess what I am trying to say is I know they don’t want to do treatments all the time and want to have a life so I guess it makes them normal like everyone else who doesn’t have conditions and being able to have that relationship with patients and ou can tell them you know thy won’t do things every night you need them to or whenever you need because something else might come up but if they are honest with us then we can work around it to make sure they feel good and can do what they want within reason.
To say I live for my work I guess in part of me I do as I love it but then I also do all the patient and public involvement stuff with the Asthma UK Centre for Applied Research which has now grown out of just the centre but now I do work with The Wellcome Trust doing some speaking with the PPI lead at AUKCAR and also speak on a Masters Program for Clinical Trials at Edinburgh University, the European Respiratory Society, theBMJ, Cochrane Library (something that totally intimated me as a nursing student and could never navigate my way around and now I peer review articles for them- how times have changed), Asthma UK RASP Volunteer and also part of the Astra Zeneca Patient Centricity program. All of these I love but they are very much throwing asthma in my face and I am confronted with it every time I sit down to review something, or speak at something but with that its for the good of people looking to help people with asthma to improve their life but also people with other conditions especially with other companies I am working with but also the more general PPI things I am doing so I guess having this mix of things really does help keep the focus off the asthma and doesn’t remind me all the time of the life I could potentially have if there was a huge breakthrough in asthma research.
I also like to be involved in Lacrosse and am lucky enough to be assistant manager (aka AssMan- in jest) of the Scotland Team. But I do find my involvement hard. I can’t do all I want to do especially coming off the back of admissions but what I have found is that stringing sticks mainly for club mates, other club teams, school kids and a few national players. Stringing sticks is something I can do no matter how unwell I am. I can do it in bed. I find it oddly relaxing and therapeutic. There is also a lot of online stuff I can do trying to sell t shirts to raise money for the Scotland squad to get to World Cup this summer, so even when not able to physically do things there is still something I can do. I am looking forward to World Cup this summer. I won’t be with the Scotland team as committed to doing match statistics before I became involved in the Scotland setup. But I will hopefully be able to watch most of the Scotland matches and fingers crossed be well enough to really enjoy the World Cup.
For the time being I need to just rest, recover and get myself back to good health and get back to work.
This is a totally added bit to this blog post but as I got into bed tonight and found a salbutamol inhaler in my bed. Over years I have found salbutamol inhalers have been a kind of security blanket. I find I have to have one with me everywhere even when Im using my nebuliser a lot as I am just now so have no idea how a MDI inhaler got in my bed. I have not actually taken a puff of one for a while. I do remember nurses laughing at me as they wheeled me across the ward to the bathroom while on oxygen and IV Salbutamol yet I insisted on bringing my inhaler despite the fact that I had 20mg of Salbutamol coursing through my veins every hour so no idea what I thought my Salbutamol MDI which gives 100 micrograms per puff. It does not compute but it really is my security blanket. God help me if GSK ever go bust as I would be without my security blanket of Ventolin MDI.
ANONYMOUS-ASTHMA 