126 Isolation day 18

I’ve been a bit unsure on whether to keep updating this blog at the moment. My treatment is on hold, life is on hold, in fact all our lives are on hold, the whole world is on hold.  What strange times for us all.

I’m going to keep writing, because it really helps me to do so.  I don’t mind at all if no one reads! 

Well I’m now on day 18 of isolation and this time has been strange, interesting, unsettling, boring, frightening, calming and a million other things.  The first few days were really tough. It really felt that I would never see my friends and family again, I was scared I wouldn’t cope being entirely in my own and I was worried about what will happen with my MS while waiting for the world to go back to normal.

Since then, I have managed to get myself into a new routine, to get on with work, to do a few jobs in the house and to mostly stay positive.  There are times when it’s really hard.  My little house can feel huge and empty and at other times, small and oppressive. Sometimes I feel desperately lost and alone, but powerless to do anything about it.  I have lovely friends and family in my life and appreciate every single one of them.  I have numerous people I could call or text or message but somehow I don’t – this is something I am working on. Most of the time I feel fairly upbeat, positive and optimistic.  I feel grateful for what I have … my lovely home, my crazy cats, a job I love, my fantastic workmates and most of all, my friends and family.  But sometimes the misery grabs me.  I’ve always been like this but have always had options to go out do something, make plans, distract myself …it’s not easy to do that when you’re stuck inside your own four walls with only cats for company!

This is so true.  Right now I am safe and I feel luck to be safe.  I am able to carry on working from home and I have daily remote contact with lots of people.  I know I am in a much better position than many are at the moment.  I am only leaving the house for a daily walk in the local area and Niamh is doing my food shopping for me.  I can manage like this for as long as I need to.

I am trying to push myself to walk every day, even when I don’t really feel like it and I’m finding that it really does lift my spirits. I have enjoyed spotting children’s pictures in windows and noticing all the good things about where I live. 

I am lucky to live close to a beautiful park and am visiting when I can manage it. 

I realise that we are all going through a period of adjustment at the moment and we are all still processing everything we are dealing with and the rapidly changing world in which we live.  This will be taking a toll on us, even on a subconscious level.  When we are unsettled by change, it’s the stability of relationships that gets us through.  But relationships don’t quite feel right from a distance and that’s why I miss people so much and feel a bit out of kilter. 

Apologies to anyone I have accidentally left out!

So, how am I managing my time? 

Well I have discovered I feel much better when I stick to some sort of routine, so I continue to get up at my usual time and go to bed at my usual time.  I am working from home 4 days a week, which is helping to keep me grounded and gives a sense of purpose.  On the other days, I’m doing the usual housework, talking to friends and family, talking to my cats, trying a bit of yoga and meditation and making lists on all sorts of topics.  There are a few jobs at home, like putting pictures up, that I haven’t got round to doing and I’m telling myself how lucky I am to have all this spare time To get these things done …I just need to muster up the motivation to actually do it!  

If anyone has any top tips for coping with isolation, suggestions for new hobbies or activities I could try or ideas on how I can use this time to better myself, please send them my way. 

Apologies to anyone offended by swearing ?

I also have an important decision to make …do I cut my fringe or let it grow?!

Sia

119 Wobbly legs

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!

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44 What does it feel like to have MS?

Trying to describe how it feels to have MS is like trying to describe colour to someone who can only see in black and white!  It doesn’t feel like anything else, so there is no way of explaining it to someone who hasn’t experienced it. 

Wobbly legs, weird sensations, balance issues, vertigo, pain, tremors, tingling, spasticity, funny walk, poor grip, weakness, numbness, spasms, general clumsiness …these are just some of the physical symptoms of MS that I’ve experienced. 

Everyone’s experience of MS is different and most MSers find that their symptoms can change over time and can vary day to day, or even hour by hour.  I’m sure it must confuse some people to see me one day appearing to walk around without a care in the world and the next day to be limping and hanging on to the furniture! 

Earlier this year, MS Ireland decided to let people have a small taste of what it’s like to  live with MS. This video has been well received by the MS community as it demonstrates some of the small but multiple struggles MSers face every day …

The MS Ireland website can be found here.

I remember trying to describe my difficulties with walking to my children when my symptoms began.  Then I found this picture online and it helped them to understand 

I don’t mean that I see the floor that way, it’s just that’s how it feels to walk on a flat surface most of the time – slopes, steps, cobbles, uneven ground, all just add to the fun!  So if you see me walking on a flat surface, without a stick, please be aware that this is something that now requires concentration!

You can find out more about the common symptoms of MS on the MS Trust website …

www.mstrust.org.uk

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