Making Plans
Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to the spontaneity of the symptoms, which regularly leads to a complete change in routine, where I find myself juggling the day around to coincide with the pain and fatigue. More often than not, I have to save my energy for the things that matter most and make contingency plans to make sure I get something productive done every day. Of course, if I find I haven’t done anything constructive, it drags my mood down, but at the same time, I struggle to accept that it’s okay to have rest days when battling this progressive neurological condition.
Hearing Loss
There are a lot of hidden symptoms with superficial siderosis; for example, people sometimes talk to me and don’t realize that I’m deaf; however, when I do tell them I’m deaf, they say, ‘but you don’t look or sound deaf.’ I’m not one for wearing a badge that says, ‘I’M DEAF,’ because being deaf doesn’t define me; it’s just part of who I am. Other deaf people might feel differently and want to show their disability, but that’s not for me. The one thing that does bother me is that it’s 2022, and not all services have accessibility for deaf people. I mean, how hard is it to communicate via email?
Pain Management
Having a bad day of pain can really take its toll. You might have read some of my previous pieces about the zapping pain I get at the back of my head; which still to this day is a big issue for me. It’s not only the pain; it also comes with dizziness and nausea. The three combined make it so difficult to do anything, and on a few occasions, I’ve had to miss my neuro-rehabilitation sessions to lie down and rest.
New Symptoms
The latest addition to my symptoms is neuropathic pain in my feet. Previously at night, when trying to sleep, it was the tinnitus keeping me awake; hissing, buzzing, and crackling in my ears. Now I’ve started to get this intense pain in my feet that seems to be driven by them being cold. I purchased a hot water bottle for my feet, which slightly helps to warm them up, but it does not take away the pain as such. I find that good sleep can help to reduce the severity of the zapping at the back of my head, but sadly my ears and feet don’t want that to happen.
Some Good News
I finally have a date set for the cochlear implant surgery in London, and my consultant neurosurgeon has booked me in to have more injections in my neck to (hopefully!) relieve the zapping pain. Of course, it comes to something when you’re looking forward to having surgery and needles in your neck, but that’s the reality of superficial siderosis.