Monday Musings: What is ‘Normal’, Anyway?

I had a thought the other day whilst I was getting ready for bed.  I have been struggling with a week-long cold/flu/fatigue/sensitised skin/extra spastic legs situation.  As I was brushing my teeth for bed, I wished, ‘I hope that I feel normal tomorrow’.  But what did I mean?  Did I mean the ‘me’ without MS? No, I meant the ‘me’ without the added cold/illness that I have now that is making me feel extra rubbish, worse than my body already feels naturally.  This extra illness has caught me by surprise; since following the OMS plan, I haven’t had any type of cold/flu/illness (I attribute that to the abundance of colourful veg in my diet)… but I guess, as a result, this one has hit me like a ton of bricks.  My body just isn’t used to it.

I can’t remember what it is like to feel ‘normal’, to not have painful legs or a ‘humming’ feeling all over my body.  It is so hard to explain to those without MS, the symptoms are often just so random, but the best way that I can describe this ‘humming’ is that I have a low-grade electrical current running through my body and buzzing throughout the day.  My mobility problems, which are worsening, are like I am treading through thick mud every time I attempt to walk.  I sometimes dream that I am walking without difficulty; I still remember the ease of it, how light my body felt.  I miss it.

Normal Is So Much More Than How Your Body Feels

It’s so easy to fixate on how my body feels; I live with it every day, after all.  But my symptoms don’t just affect me, do they?  They impact on everyone in my life. Sometimes it can be hard for me to consider that.

My children are going through things that I never went through: dealing with a sick mum and having limitations imposed upon them because of it.  My husband has to navigate life with a sick wife that he needs to support, both emotionally and financially.  Their bodies are ‘normal’ but what they are going through is not.  At least, not compared to others.

The thing with our children is, ‘they do not know what they do not know’.  In other words, they don’t know what it is like not to have a sick mum.  They get on with it, they adapt to my changing needs and, yes, they get frustrated, but I still get told that I am ‘the best Mum ever’.  So, this is ‘normal’ for them.  But my husband knows what it is like not to have a sick wife (me up until about 6 years ago).  He can see the impact that chronic illness has had on our lives, and he is still here loving and supporting me despite it.  His normal has changed, just as mine has.

Everyone is Going Through Something You Can’t See

The idea that everyone else has it better than you is a thought that many of us feel.  But one thing that my chronic illness has taught me is that no one has it as easy as you think they do.  Since my MS symptoms have become obvious, friends seem happier to tell me the troubles they may be going through.  Troubles and worries that I would otherwise know nothing about. I recently chatted to an old school friend who I used to admire for her self-confidence (she almost seemed ‘too cool’ – slightly aloof) and it turns out she was cripplingly shy and nervous to chat to people.

Peoples’ behaviour may not reflect their true feelings and experiences: I know that my children, for example, are well-behaved at school but their frustrations about my MS come out at home.  Hell, my frustrations about my Multiple Sclerosis come out at home; in public, I am smiley, happy Jen and put a brave face on it, on the whole.

So, What Can We Do?

For me, focusing on my body, how different my life is compared to how it used to be, worrying about my children, husband and family and how my MS is affecting them is counter-productive.  Worrying isn’t going to do anything, except make me feel even more rubbish and guilty than I already do.  I have MS, it has imposed changes on my body and my family’s lifestyle that I just need to accept. That doesn’t mean that I can’t have times when I can’t feel pissed off – and it doesn’t mean that my husband and children can’t feel frustrated and pissed off.  It means accepting that, again, there is no such thing as ‘normal’ when it comes to feelings.  And that how to deal with them most effectively may differ from person to person too.

For me, as I have written before, yoga and meditation are my go-to for trying to keep my feelings and body in balance.  I’ve been trying to encourage my daughter to have a go at kids’ yoga to help to make her feel calm.  Well, she told me.  She made it very clear that she just wasn’t interested in yoga, but then tentatively said ‘baking makes me happy’.  Guess what we have planned for after school today?

I think that is the key: using strategies that work for you to make you feel as well as you can be.  That may be through a boxercise class, screaming into a pillow, painting, gardening, going to therapy, catching up with friends, sitting in the sun. Anything that helps you and knowing, accepting, that you might have to work through a few different things to find out what helps you in particular.

Hope that you liked reading my thoughts for today 🙂

Till next time,

Nothing Days