Coping with Neuro-Related Health Issues
I’m not sure when I first noticed that my health wasn’t doing so well. It was sometime around the time of our second child’s birth, and with night feeds and then teething, it wasn’t all that strange to be feeling constantly tired. It’s just part of life for a newborn’s parents. You live with it. After the newborn stuff, came the teething and again, the tiredness is dismissed, but slowly the months passed, the baby became an all-night sleeper but my tiredness didn’t disappear.
Other problems such as headaches, memory loss and confusion had been attributed to the lack of sleep, but once the sleep was resolved, and these other issues weren’t more medical advice was sought. The baby is now 4 years old, and my health issues are worse and I’m now under the “care” of a neurologist who has undertaken many tests but still can’t diagnose what the real problem is. He’s currently got his money on the “epilepsy” button, but it’s so non-typical that I expect that to change soon.
The lack of diagnosis is frustrating but what is more worrying is that my situation isn’t rare. There are many people who are living with chronic fatigue, memory loss, co-ordination issues, headaches, vision distortion, audibility issues, etc who are expected to just pull themselves together and get on with their lives as if nothing was wrong because they have no real visible symptoms and no diagnosis that they can offer for their inability to move faster, or remember what happened at yesterday’s meeting.
Neurological issues that can be on this kind of scale could eventually be diagnosed as Chronic Fatigue Syndrome, Multiple Sclerosis, Epilepsy, Lupus or a list of other less familiar conditions that fit within the same “pick and mix” symptom range. The main problem is that there is often no test that can be taken that will state with 100% accuracy which, if any, of these conditions you have – or even give a definite 100% accurate “you have not” result. They have tests that can say that you might have, or might have not, but none of the tests are conclusive for many of these symptoms collectively.
This makes coping with neuro-related health issues difficult because you aren’t just fighting your body on a daily basis so that it does the things it’s supposed to do, but also you are fighting a medical system that is happy to leave you dangling for months between visits. If you know someone who has these kind of symptoms, don’t assume there’s nothing wrong with them or they’re hypochondriacs, they’ve got enough to do trying to get answers from their neuro team without dealing with your judgement – it’s not easy to pull yourself together when parts of your body seem to be invisible to the brain at various times of the day!