By Victoria Goody, Chief Executive
I started feeling unwell on January 28th and 10 days later was admitted to hospital, where I stayed for 8 days with a diagnosis of Guillain-Barre syndrome, an auto-immune condition where the nerves fail from your periphery. After treatment, I was discharged to continue my treatment as an outpatient. Otherwise I am a fit and healthy forty-seven-year-old who exercises numerous times a week and is very active.
The strangest thing about Guillain-Barre is how it has impacted my proprioception, touch and sensation; and I wonder if my experiences will illuminate how potentially any of the people we visit might experience life. The first thing to say is that the things that I have a great deal of trouble with are incredibly random – and I can’t explain why some things with similarities don’t seem to have the same impact.
My sensation in my feet is returning (slowly) and unlike four weeks ago, I am no longer falling over, or using a stick to walk. Katy the Physio has me doing exercises and walking at least 3k per day which can leave me exhausted, but on flat tarmacked surfaces is quite do-able. What challenges me now is situations when my brain and feet really need to work together: cambers on the pavement, stairs and steps, uneven cobbles, badly maintained paths and worst of all, surfaces that have been adapted. Two in particular are a challenge: those small round surfaces that alert people with limited vision to where the edge of the road is, and a special surface added to a wooden bridge in the village to stop people slipping when it is wet. Even through shoes, both of these small and seemingly incidental changes to the surface are extraordinarily painful across the bottom of my feet. The small changes throw me off balance as my brain power is all consumed with keeping me upright.
My hands are a really curious mixture: they are both very numb and also hypersensitive. My hands “fizz” with electricity which is really strange but I know is a temporary and good situation – it means sensation is returning. My thumb pads were the first thing to go and they are very tender and unable to distinguish temperature. Anything sharp is hideous on my hands: the edges of packets (that sort of rigid plastic like a cheese wrapping is horrible), 90-degree metal corners with any pressure is painful, such as cutting anything with a knife and fork, and catching my own hands with my finger nails. So much so that I’ve cut all my finger nails off down to the quick, and the physio has given me thick plastic tubes that go over a knife and fork. Some things that are painful I can’t avoid (brushing my daughter’s hair) but mostly I can choose not to do pain-inducing things. I can use technology – I have a children’s bath thermometer so I don’t burn myself.
The randomness of what I can and can’t do – and the fact that it changes week to week – gives me a slender insight into the challenges some of the people we support with sensory processing issues might face. Imagine the floor being painful or being asked to keep up, and not being able to say the floor itself is painful. Or being encouraged to be independent with food, when the implements themselves cause pain. Being where I am and not being able to explain what hurts so much and why,
I am lucky – I’m able to get adaptions because I’m able to recognise what is hurting me, and ask for help to make reasonable adjustment. I know to avoid the bumps in the road, and go slowly over the tree roots near my house. I’m able to ask for knife and fork covers and so on. I can’t imagine how hard it would be not to be able to verbalise these challenges and get help to make life easier. I also have the considerable comfort of knowing I am getting better and this situation will not last for ever.
The experience illustrates clearly how normality varies and is in constant flux. There is a balance to achieve between acceptance of that which may have altered forever, and those things that we must strive to regain. There is a striking similarity to the process the population of the planet is currently, in spring 2021, undergoing. What will the post Covid (or indeed the living with Covid) world look like? How can we ensure our anxieties are both acknowledged and addressed? From a professional view, as CEO of Us in a Bus this will prove just as challenging for our team as my personal journey with Guillain-Barre syndrome.