I had another hospital appointment last week.
It was just to get the results of a test, but it was frustrating for a number of reasons. The consultant who saw me was not my normal one, and he just barely glanced over my notes before dismissing me as ‘deconditioned’. He told me to go and exercise and I would get better.
I am so fed up of that line.
I’ve been told I am deconditioned for years. I am constantly told to go and exercise, or do yoga, or get my fitness better, and then all my issues will go away. The problem is, I do exercise as much as I possibly can. I have been working to increase my fitness for years. Trouble is, it’s difficult to exercise when five minutes of walking can leave me breathless and in pain. Never mind that I can’t climb a flight of stairs without ending up doubled over and wheezing.
I used to have good fitness. I was a woodwind musician at a top music college – my breathing was much better than most people my age/height/weight. But something happened close to 3 years ago that affected my breathing so badly that I can’t play my instrument anymore. Since then, things have just detiorated until now I’m stuck struggling with walking or climbing stairs or even standing up, some days.
It is endlessly frustrating to have doctors tell you, ‘Just go and get fit!’, without actually reading over your notes.
If the consultant from last week had read my notes, he would have seen a number of slightly abnormal results that have kept my main doctors concerned about me. He would have seen that, while my heart is structurally sound, it consistently works too hard, and not just because of nerves. He would have seen that my anabolic threshold is much lower than it should be for my age/height/weight. He would have seen that I get breathless much faster than I should, and that I have lost a lot of weight over the last few years for no adequately explained reason.
But no, he just saw the lack of fitness and instantly told me to exercise.
It undermines me and my struggle to get told this so much. It undermines me when I have to ask for help when something is too heavy or awkward for me to lift, or when I have to send my brothers upstairs to fetch me things because I can’t go up there myself. It makes me feel weak, and pathetic, because I should be able to fix myself through exercise when I can’t. I have tried so hard and it isn’t working. If anything, exercising more makes me feel so much worse and makes my general health worse, until it is all I can do to drag myself out of bed.
I am tired of being dismissed and ignored when all I want is to get better.
I am not blaming the consultant, however. It isn’t his fault he didn’t have the time to read my notes properly, or that he hasn’t followed my case in every intricate detail, or that my case is a complicated one. I understand that. But, he very nearly stopped all my investigations in its tracks, and I had to remind him that my usual consultant wanted to refer me onto other doctors and order other tests. So, he is getting a second opinion, and then he is going to do that.
This process is extremely frustrating. I keep trying to stay positive, but the entire last 3 years of my life have been full of appointments like these. And if they aren’t like these, then they involve doctors saying, “Well, I don’t think you have this, but we’re going to test you for it to make sure.” Then the test takes a couple of months, then the results take a couple of months, they come back negative, and the doctor says, “Yes, I didn’t think you had that, so you’re fine! Oh, but there might be one other thing you have, so we should check that too, though you most likely don’t have it.”
And on and on, in circles, until I’m even more confused than I was in the first place and still feeling sick and weak and in pain every day.
I just cannot believe that it is normal for my body and fitness to have taken such a sudden downturn 3 years ago, and for there to be no physical explanation for that. I was at the height of fitness, and now I can’t even climb the stairs in my house. Surely there has to be an explanation for that. Surely there is something wrong.
I know my GP agrees, as does my normal consultant. They will keep investigating.
I just hope the road isn’t too much longer, and I won’t have many more appointments like this to contend with before it is done.