A few weeks ago, a small child asked me why I need to use a walking stick … “because I have wobbly legs” came my reply. She was happy with my explanation and that was the end of the conversation.
More recently, a friend asked me how my legs felt …not a rude or intrusive question, but a genuine attempt to understand how my MS feels and affects me. I realised that I very rarely talk in detail about this, partly because it varies such a lot from day to day (or even hour to hour) and also because it’s so very hard do describe.
MS isn’t like anything else I have experienced and it can affect any part of the body, any movement or function and any sense or perception. The brain and spinal cord do an amazing job of transmitting messages around our bodies, but when these messages become distorted or are blocked or diverted, the brain tries really hard to interpret them in some meaningful way. This leads to some rather bizarre sensations.
In our everyday lives, there so much about our amazing bodies that we take for granted …walking, talking, moving around, completing any simple or complex task etc etc. Most of this we just do, without much thought and without forward planning. Even standing, walking and remaining upright are a result of complex messages between the inner ear and the brain, the eyes and the brain and between all the muscles in the body and the brain. The brain is constantly monitoring these messages and making adjustments to how you stand and move, to ensure you remain upright and can make movements with control, accuracy and safety. This is all happening at lighting speed, all the time, without you even knowing about it …amazing!
Unfortunately I now find that I do need to think about it, all the time. Every time I stand up or sit down, when walking, standing and staying upright. It’s exhausting. A momentary lapse in concentration can lead to a fall and falling hurts …a lot!
My stick gives me a little bit of support, so that I don’t have to concentrate quite so hard. At home I cruise round the furniture and door frames like a toddler. Everything I do takes twice the energy, twice the time and a bit of planning. This all becomes even more challenging when I’m tired, stressed, cold or if I’m somewhere unfamiliar. If I’m outside and it’s wet, windy or icy, if the ground is sloping or uneven, it all becomes even more difficult. That doesn’t mean I can’t do it …it just means it’s harder and uses up more of my precious reserves. I seem to spend a lot of time deciding on what or whom I should give my energies … everything comes at a price.
As well as balance problems, I also have problems with pain and spasticity in my legs. Most of the time, my feet and lower legs feel like dead, cold heavy weights. Do you remember that feeling when you were a kid and you’d play out in the snow in your wellies for just a little bit too long? Your feet would get colder and colder, then start to sting and hurt then start to feel a kind of numb and uncomfortable pain. This is how my feet feel all the time. I’m told that the usual sensory signals from my feet are jumbled and confused, so my brain is trying to interpret them as something it knows.
I have other strange sensations in my legs too. It seems we must have an awareness of clothing touching our bodies all the time, except sometimes I don’t! Sometimes, it feels to me as if I must be wearing shorts due to the absence of this feeling, or as if my top has ridden up at the back. Sometimes I feel that I have patches of intense hot or cold on various parts of my body (usually my legs), yet the skin doesn’t feel hot or cold to touch. Sometimes I have a sensation that something tight is tied around my legs … I have itching, tickling, crawling sensations … my poor brain is obviously very confused by the signals it is receiving. This collection of symptoms is called Paresthesia.
I also experience MS muscle stiffness in my legs and hips. Sometimes this painful and uncomfortable and at other times is just a minor feeling of stiffness.
So, with this combination of balance issues, paresthesia and spasticity, I very often have wobbly legs and perhaps my first explanation was a good summary after all!
The guys have collected their medals and headed home for a well earned rest, some warmth and a Sunday dinner!
