Neuro Fatigue is exceptionally difficult to describe if you haven’t experienced it. Furthermore because of its ambiguousness, its identification can often be challenging. When my Occupational Therapist first mentioned Neuro Fatigue following my strokes, I naively assumed its management would be fairly simple. I’d become overwhelmingly tired and need to sleep. How wrong I was! Neuro Fatigue is a hidden disability, so hidden in fact, that often the person experiencing it doesn’t know what it is!
The experience is as personal as the individual, so it can be overlooked or misinterpreted on a daily basis both by the person experiencing it and others around them. Neuro Fatigue was described to me by a fellow stroke survivor as comparable to swimming the channel in a fur coat, having just finished a marathon.
How I manage…
Since Neuro Fatigue is a complete enigma, the best way I find to manage it, is by imagining I wake to 10 percent battery on my mobile phone. All the phone calls, messages and internet I use; that 10 percent has to last all day.
Recently, I have been practicing the art of being more tortoise, when I’d formally been one of life’s hares. The need to take smaller, slower, more considered steps to win the race and regain control over my Neuro Fatigue. It means saying no to things, being as adept as a ninja at finding resting places and limiting my time spent, but not avoiding, activities I have identified to cause brain drain.
The word of the month at Right at Home Solent is tenacious. It’s appropriateness as an adjective to describe the characteristics required for Neuro Fatigue management, doesn’t go unnoticed on me. You have to keep trying to identify triggers and manage them no matter how many times you fall at the first fence, to catch sight of the finishing line.
My learnings so far (I’m still learning)
It hasn’t been until the most recent part of my journey, that I recognise, I’ve been in state of semi denial regarding the impact of my head injury. On my first day at Right at Home Solent, I sat listening to Kirsty Emmence, our Deputy Manager. She spoke so passionately about the individuality of care and it sparked a reality check regarding my rocky road to recovery.
My pride and my misconceived idea of home care being reserved for the truly incapacitated, had negatively affected my recovery. I was far too proud to ask for much help, but the transition from hospital to home was overwhelming. This led to depression and a prolonged sense of failure. Despite many years of working in the health sector, I held a ridiculous notion, I would recover from head trauma like I would a common cold.
Hindsight it a wonderful thing, but if I knew then what I know now about Right at Home Solent, I would have picked up the phone and enquired about a support package tailored to my needs. If you are in two minds about how home care would support you, I wouldn’t hesitate in recommending you give them a call to find out. You can call the office on 01329 233755, request a call back here or email on [email protected].
So what’s the solution?
Sometimes, just knowing you are not the only one facing something is a solution in itself. Knowing that its not “just me” has helped me. I want to help more people through this earlier in their journey. If you want to chat anything through, feel free to email me on [email protected] I’d be delighted to get in touch.
Below are a couple of great resources I have found very useful:
Hi – I’m Rachel!
Oh, and just to finish, I’ll be publishing a blog every Sunday. So we get to know each other a bit better, here’s a picture of me below.