Yesterday was one of those strange days. It was a day off with not much planned other than clinic but it ended up being totally manic and rushing here there and everywhere.
Every month I have to go to clinic and see my respiratory consultant and have a battery on lung function tests. Lung function fills me with impending doom on several different factors. The person that used to do lung function was lovely and I knew her well as have been going to her for about 12 years but she is now based in the labs and not in the clinics so its someone else. I was excited last time because the old lady was back and she didnt treat me like an idiot other than laugh at the concentration I had to apply when doing my FeNo. So yesterday was another new person. This one had i had enough puff I would have blown her out the room. I took a real dislike straight off when she asked me why I am getting lung function when only had it last month and that I don’t need it all the time. Im sure if I didnt need to do it my consultant would not make me do it as he knows I hate it. After my FVC and FEV1 I was told my results were rubbish and I was not trying hard enough. If only that was the reason it was so shit!!! My lung function was 48%. A whole 1% higher than last time. For the last year I have been sitting between 45 and 50% so Im stable even if the woman didnt think I was trying hard enough!!!
I was tired by the time I saw my consultant. He didnt really have much to offer and I was pretty deflated after the appointment. He told me my lungs were really fragile and one of the most difficult brittle asthmatics he has had to deal with for a while. Part of that filled me with fear. I had thoughts that this is how life is and its not going to change. I desperately want change even if just to change inhaler at least I feel I would be doing something. I have to go and have cardio pulmonary tests done to see what state my lungs are in and also when under stress. So I await that date to come in the post.
Yesterday evening and today I have felt very distracted about what the future holds and how life will be. It sounds very sombre and melodramatic but when a specialist consultant tells you that your one of the worst brittle asthmatics he’s seen it doesn’t fill you with hope of better breathing in the future. Work was a pleasant distraction as I was able to focus on others and not myself. I almost forgot about my appointment until I came home to find a letter from the hospital below my letterbox. My mail consists of either drs letters/ appointments or bank statements. I couldn’t work out what it was as I have appointments for everything I am waiting for so was not expecting anything. The letter was an appointment with my old consultant again. I was pleased it meant she read my letter and would give me a shot.
After my last asthma attack at work which ended me being admitted for a week I had a very long conversation with my old consultant about the way I left things and why I saw a different consultant. She was fabulous about it and was not surprised. It was through sheer frustration as no one had answers I had to try and see of someone else did but alas no. Once I was discharged I wrote to my old consultant asking various things and really saying exactly how I was finding everything. I am not the best at opening up about how I feel in person I just say Im fine but deep down Im really not. I express myself best putting pen to paper. I did this and was really nervous. I didnt know what she would say or do. I have been given an appointment to see her in 6 weeks which I am glad of. I have a far better relationship with her. Mainly because I have known her since she was a reg under my old con who was fabulous. Writing meant I could say things I would never normally say. I am not one who does not skip clinic appointments even if I feel like it. Mainly because if I did no one would take me seriously and think I want to get better and also my situation at work means I need to support of my medical team and I don’t want to give them any excuses to write me off. I did ask that by going back to see her if I could not go to the nurses every month as I found it so demoralising. Going each month to be told just keep doing as we are and see what happens. I don’t need to waste a day off to be told that when I have been waiting and seeing for the last 5 years. What happens is I do good then I do bad and my steroids get increased, i do good and they get decreased then I do bad so on and so forth.
I hope that this appointment may help more now that I have written how I feel. It may not but I feel totally lost. I don’t know what to do for the good or the bad anymore. I have stopped playing sport to help one side of my asthma but this has been detrimental on my mental health as no longer have an outlet. Part of me wants to play sport so at least I have a reason for my asthma being so rubbish but I am terrified of having an asthma attack.
6 weeks I am sure will fly in and will see what happens at the appointment.