When it started
I fell and suffered lateral whiplash in January 2024. Obvious symptoms began late July. Diagnosed April 2025.
What it’s like
The symptoms I don’t have are: seizures, fainting and incontinence. I have all the others, fatigue is the one that really gets to me though.
I would like this story to bring encouragement. To let others know that life can still carry on, just a bit differently than before.
My husband and I run a very busy B&B, it is a stressful (and rewarding) job with a very physical workload, as we do it all ourselves. I have flare ups every day, we laugh at them if they are funny ( my speech flares come up with some real crackers), I rest when I need to and my husband takes over when I can no longer function (full paralysis), which I am pleased to say isn’t very often. I incorporate pacing throughout the day (25 minutes work/5 minute break), this helps enormously. I also do things much slower than I used to. I have two walking poles for my balance/leg dragging as and when I need them and I use a chair in the shower to preserve my energy. This helps keep the fatigue at bay. There are of course days when I can’t shake the fatigue or multiple symptoms and this will be because I haven’t slept well, had enough to eat or drink or have pushed through to “get things done”. Which I do not recommend at all, it’s not worth it.
For the movement and gait problems, the constant moving around of cooking/cleaning has helped me restore more fluid, natural movement and I have noticed these symptoms do not flare like they used to.
The brain fog/cognative issues are hard going, my memory is dreadful, and I don’t always understand what people are saying to me, it doesn’t help when I give them a blank stare and then raise my middle finger to them, this unfortunately happens often, but is amusing (thankfully). I have found people understand when you explain you have neurological problems and are quite willing to help or not laugh when it isn’t funny.
The sensory overload flares are more annoying for my husband really, I can’t listen to music, bare light or listen to him talk (chatterbox), he’s extremely understanding when I ask him to keep quiet (nicely of course). Earplugs/headphones and light sensitivity glasses are great for these occasions
I am much slower, which allows me to appreciate things more, I accept that I may not ever be how I was before, but this isn’t a sad thing, it’s just another phase of my life. My symptoms have reduced significantly since diagnosis, thanks to neurologist’s explanation, my husband for being who he is, very supportive parents and friends and copious amounts of sleep.
What helps
A quiet space in your home where you can reset your nervous system.
Acceptance rather than fighting the symptoms, don’t be frightened of them, just go with it, it makes them pass quicker.
Meditation/deep breathing.
Fidget toys.
REST
Pacing
Mobility aids (if required)
A message for others
For the newly diagnosed: be patient with yourself and the people helping you, it’s new to them too. Always look for new research, the more it’s looked at the more it explains and makes clear what is going on. Which in turn will help reduce the symptoms.
This is long, take your time.
Be nice to yourself, try your hardest not to dwell on what you feel you can’t do and enjoy the things you can do. Definitely have a sense of humour with it, it helps diffuse the flare up. Randomness helps, if you’re stuck in a loop of ticcing/dystonia/paralysis (anything) ask someone around you to tell you something ridiculous. It breaks you free of that particular cycle. It is important to help yourself as much as you can, it keeps the “wiring” working, even the smallest movements at first, it all helps. Don’t be ashamed to use any sort of aid equipment, if it brings you a better quality of life, then it’s a no brainer.
For the carer: be patient with the newly diagnosed and with yourself. Things will change dramatically. You won’t like what you’re seeing, it will be hard. Do not become a doormat, encourage the person to help themselves (within reason), it is beneficial for them in the long run. If the person is stuck in a position or just can’t move, walk calmly around in front of them, so they can register how to move normally, this should help.
For both parties: talk to each other, it’s a journey you’re both (all) on, tell each other how you’re feeling, there is nothing wrong with asking for help when it gets too much.
Thank you for reading
Anonymous
