This is partly a therapeutic post to get this off my chest and partly a post to which I can point friends and colleagues to avoid re-explaining everything every time.
Since mid-September 2017, when I had pneumonia, sepsis, and a spinal-column infection, I have been losing my hearing. It varies hugely as to how bad this is from day to day. Some days I cannot hear people when they speak directly to me. Other days it’s only when a room is noisy that I can’t discern speech. Music, when I can hear it, sounds out of tune. I have a tinnitus that sounds like multiple electric guitars feeding back at mid-frequency and high volume into my head.
The medical opinion is that this is being caused by my longstanding autoimmune conditions: rheumatoid arthritis and vasculitis. In these conditions, the immune system attacks the joints, the blood vessels, internal organs, and other parts of the body. That is, this is not the same arthritis as you get just by being old. These are the same conditions that led to my stroke last year. It seems that the disease has now turned its attention to my ears.
By way of treatment, we are upping my immunosuppression. This leaves me more vulnerable to other opportunistic infections. It’s why I got the pneumonia in the first place. We hope, though, that if we can get that under control, my hearing should partially - or even totally! - return. However, there is no guarantee of this.
There’s also little that audiology/ENT can do for now. Because the hearing varies with the immune system fluctuations, a hearing aid is no good. It would help one day and be too loud the next etc. If I lose my hearing more severely and consistently, which could happen, there are things they can do. But I’m not there yet and am rather in an interim phase where I might return to nearly normal or I might not.
I’ve really struggled with this over the last few weeks. It is shatteringly tiring trying to hear and I find myself using all my mental energy trying to parse sounds into words. I’ve been very depressed by it - literally reduced to tears through tiredness.
But for now I’ve just got to get on with life while we sort my immune system drugs. If I’ve pointed you here it’s to give you a background and to ask for your patience when speaking with me. I hope at some point in the future this post won’t be needed, but for now please bear with me.