My early experience of sensory impacts after stroke by Karen B
Try to imagine…
You’re out and about in winter wearing close fitting thin leather gloves. When you reach into your bag to search for your keys or your glasses, your train ticket or your wallet and can’t feel what you’re searching for. You try to slip your glove off, but you can’t….ever again!
Added to this loss of feeling you have lost your ‘mind map’ of where your fingers, hand, wrist and your arm are positioned in space. This ‘mind map’ is called proprioception.
Essentially you’re having a non-stop out of body experience on one side of your body. If you can’t see your fingers and hand, you can’t use them for anything meaningful. It’s like your hand is blind. It moves but it can’t ‘see’. You have one ‘good’ hand but you’re trying to live a two handed life with one ‘bad’ hand. Sometimes you wish someone would just unscrew your affected arm and take it away.
You have intense 24/7 pain through one side of your body making you want to jump out of your skin every time you touch something or something touches you. You can’t feel hot or cold or sharp or blunt. You cut yourself and you burn yourself often. Your brain is in a constant state of fight or flight. You can’t feel one of your feet so you often fall over. Sometimes you hurt yourself very badly, including breaking bones. You can’t ‘feel’ anything at all except pain, fatigue, grief and loneliness. You’re so tired you could fall asleep on your feet but you can’t turn it all off and you can’t relax or sleep.
You’re able to interact with other people for about half an hour of every three hour period and this sends you retreating to your bedroom feeling like your mind is imploding and there’s nothing you can do to stop it. You feel it’s all you fault. There must be something you did to make this bad thing happen to you and your family. Finally you get the results of the many tests you’ve had and find out your stroke was caused by a congenital heart defect, you don’t blame yourself anymore but feel like everyone else still blames you.
(The best explanation I’ve come across of cognitive fatigue is Christine Miserandino’s ‘Spoon Theory’)
Now you’re in my shoes please let me share my experience of sensory loss.
I am eight years post stroke and in this first blog (of two), I’ll tell you about the initial phase of my recovery.
Initially I undertook quite intensive therapy to get my fingers, wrist, hand, elbow and my shoulder moving again. With a tonne of hard work and determination and in a comparatively short time I had reasonable movement but couldn’t feel anything.
Most of my clothes and accessories I couldn’t put on without assistance, the only things I could put on were oversized stretchy things that made me feel frumpy and unattractive. At a time when I was coming to terms with my altered self, wearing frumpy clothes was much better than losing more of my independence. I ruined a lot of clothes and broke a lot of jewellery trying to put them on. I couldn’t tie up or style my hair, I couldn’t prepare meals for myself or my family, I couldn’t eat with a knife and a fork (it was one or the other), I couldn’t wash dishes, I couldn’t hang out a load of washing, I couldn’t dress my children or spend time with them alone. I couldn’t drive and I’d lost the ability to multi task. If someone talked to me when there was any background noise or activity I couldn’t understand what they were saying and I couldn’t make even the simplest of decisions. I couldn’t do anything in the outside world without extensive preplanning and within half an hour I would be feeling seriously distressed.
I once set myself the ambitious goal of walking two blocks to the supermarket to buy three things that I needed. I managed to walk to the shop without falling over and I found the first item on the shelf, but I was so confused by all the choices that I broke down in tears and returned home having bought nothing. I was incredibly self-conscious thinking people would notice that I was disabled. No matter how inclusive I was in my thinking, disability wasn’t me!
Finally I had enough stamina to tackle my appearance and arranged for a friend to drive me to a shopping centre so I could buy a bra that I could put on myself. I couldn’t find anything suitable so I asked one of the women in the store for assistance, she led me to a rack of items that looked like this!
I’m young and groovy and attractive; in my mind at least and I wear bras that look like this!
Once again I returned home empty handed and deflated. Finally a fellow stroke survivor used the term ‘emotional resilience’ and I realised that all the little setbacks and challenges I was dealing with all day every day were adding up, wearing me down to the point that I had nothing at all in reserve.
This blog is about the sensory impacts of stroke but in my experience it’s impossible to separate the physical and cognitive impacts of stroke from the emotional impacts, they’re a joined up package.
I think it’s absolutely okay to work through those impacts in an interconnected way and not push the emotional impacts away. In my experience it’s the emotional stuff that stroke survivors struggle with the most and I think it’s important to normalise grieving and emotional recovery.
What helped me at this stage of my recovery was finding online stroke support groups, they’re a mixed bag so be selective and opt out if a particular group isn’t helpful for you. I found a group of stroke survivors who were working through issues of parenting after stroke. I felt validated and together we worked out strategies of how to be the best parents we could in challenging circumstances. I learned how to be realistic about my limitations and how to let go of unrealistic expectations that I had of being an ‘optimal parent’. I found peace with simply being a loving parent and in the process I made some great friends.