Currently uncertain

This last three weeks and one week out of hospital has flagged up a huge range of thoughts and questions to me. I keep questioning everything just now and really feel like there is no going forward. I feel exactly like I did about 9 years ago after I spent over 3 months in hospital trying to get control of my asthma but each time we got control something else would trigger it and I would be set back again. This is what the last admission felt like although it was not 3 month only 3 weeks but it was equally as scary. At the end of the 3 month admission I left the hospital with a PICC line in my arm, attached to a syringe driver (eventually to become 2) and requiring nebulisers every few hours. After this latest admission part of me wondered what I would be leaving with.

 

Thankfully I only left with needing nebulisers every few hours and there was no PICC line or syringe driver however part of me now wants to be back on the syringe driver as it made such a difference to my life. It gave me freedom to enjoy things again and not feel short of breath constantly and getting wheezy with the slightest thing. Unfortunately here in Scotland they are not a fan of sub cut terbutaline so the chances of going back on it are slim to none instead we seem to prefer steroids up here- which yes they work but they are wrecking me and I know that when I start reducing them I won’t have the side effects from them but my asthma will get worse again.

Over the past year particularly I have questioned my life more and more. Questioned what I am doing and am I doing the right thing. Each attack I have I am needing ITU intervention and spending longer in ITU and therefore spending longer in hospital and longer recovering post hospital. I also find that ITU get called a lot once I am on the ward as well because I deteriorate and have the potential to need to go back there which is scary in itself when you have an asthma attack on a respiratory ward with respiratory Drs around who can’t control the attack and stop it getting worse that ITU need to come. As each attack escalates it leaves me thinking what happens when ITU can’t do anything- then what, what will happen then, there is nothing past ITU they are as far as you go with medicine. I don’t want to think about it but these are the thoughts I have especially when I am in hospital and having just dodged yet another ITU admission.

One other thing that really plays on my mind is what I am doing with my life. I love my job and would hate to have to stop work but just now I feel so bad that my colleagues get left short staffed when I am not there for extended periods of time, my patients get left, but also I can’t give my job my everything because if I do then I work and go home to collapse in a heap and can’t do anything else, if I push myself then I end up missing stuff or doing things as well as I should. Just now I am missing work and feel bad because I have just been away on holiday and even though I had an awesome time and the Drs decided it was not being away what made me ill I feel bad because I shouldn’t be able to have great holidays and not be able to do the same level of work. The one constant I always have and can always do no matter what is my involvement in asthma research, I can do that lying in my hospital bed, in my own bed, on my sofa, in the middle of the night when I can’t sleep. I can do it whenever and wherever I am and this I take a lot of comfort from because no matter how I am feeling I will always be able to do something and do something that I love.

I never in a millions years thought that asthma could leave me questioning so much and leave me with so much uncertainty. I recall on time during my last admission when one of the junior Drs was staying with me while the consultant got the ITU team to review me, I remember crying and telling her I can’t do it. I didnt have the strength to fight anymore and fight off another attack. The Dr was so reassuring and I can remember her saying that I could do it but I still find myself thinking I don’t have the strength to keep fighting all these attacks.

Asthma UK recently published a report for severe asthma and while there is promising advances in drug therapy particularly precision medicine with the new monoclonal therapies coming out but even they admit there is a big gap in the market for those with non allergic asthma which is the category I fall into. I have many allergies but it is to a very specific thing salicylic acid which just happens to be in absolutely everything and anything. So I guess we just have to wait longer in the hope of new medication and until then use what we have and rely on good old prednisone for keeping me stable or as stable as I can just now.

This post i think sounds quite negative but it just the reality of how I feel just now but I am hopeful that once I gain some strength again I won’t feel like I do now and won’t be questioning the future and what I am doing with my life. I must remember I am lucky that I have the life I have and make the most of the opportunities I am given and not one breathe be taken for granted.

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