How do you live in the moment? (18 July 2021)

Be mindful they say.

Live in the moment. 

Meditate. 

Mmmm.

I try to be positive and live life to the fullest I can. But several things get in the way of a positive mindset.

Reminders are everywhere about the reality faced every day... how challenging it is just to walk from the sink to the fridge, getting changed from swimming, collecting the kids from school, normal things. Then regular routine things you have to do, meds, procedures that slap you in your face several times a day; so that no matter how positive your day is going you're rudely brought back down to earth.

Then there is the seemingly continuous downward spiral. Theres a poem I once read about the last times, and you don't realise at the time. It's about parenting, so the last time you have to lift your child the help them post a letter for example. You don't realise at the time that it will be the final time, the moment passes unnoticed. Last month I did a walk from my house round about. My husband does it most days and thinks nothing of it. I dont think I could do that now. And these things happen all the time, and I do notice. 

I love the things I do, and appreciate them massively, but it seems that happiness is often tinged with grief. 

But I know I'm lucky, and feel selfish for being down. I also want to be a positive, happy influence on my kids life. I find it hard. Another thing I feel I fail at often.

Live in the moment.

Happy for what is, sad for what is already lost....and what will inevitably be lost next. But not wanting to miss the positives of now.

Finding things tough going.

#ms #mumwithms #talesofamumwithms #disability #lifegoeson

Wheelchairs (July 2021)

So, as the world tries to return to normal, I find myself pondering electric wheelchairs. 

Many years ago a dr told me to get over myself and use a stick, it will help you save energy. He was right.

I find myself more and more realising that I dont do things, miss out, or push myself too hard which ends in disaster; either because I struggle to get home, or I am exhausted and unable to move - no exaggeration. 

I always said I dont want to be stopped from doing things. Last week I was unable to watch my son play his match. So I need to get over myself and get something that will help.

All that sounds logical and very straight forward. But of course, as with most things, things are not that simple. 

There is the emotional struggle, very selfishly - what it will mean for me. But also it is a massive big deal for my family. They didn't ask for any of this, but then, I suppose, neither did I.

I know they will get used to it. It will just take time, and adjustments. Understanding how much adjusting is also difficult for those around me.

Up until now, my stubbornness,  strength, and determination have enabled me to mask how difficult I was finding things physically. But I am no longer able to cover it up, so the jump for others to see is massive; from seemingly managing, to really not coping with basic mobility at all.

So, get it sorted woman.

#ms #mumwithms #talesofamumwithms #disability #lifegoeson

A Bit of Calm (10th April 2021)

A bit of calm...

So since October I have felt at 6's and 7's...no purpose, no work, exhausted from home schooling and then home schooling again. I have struggled, not knowing my role any more. Having more time but still being shattered and not knowing what to do.

This Easter week has been lovely, the first time in ages all off together. We sat one afternoon and watched a Star Wars film. Very much loved by most in this house. I swing from appreciating it, to stressing that there's too much violence for the small one. Today I watched more removed I guess and saw it differently. I gained clarity. They do talk a load of rubbish at times but some gems of wisdom it has!

 “I need someone to show me my place in all this.” – Rey
I know everyone just wants to find their place, I just think recent events have highlighted this personal battle for me.

"We're going to win this war not by fighting what we hate, but saving what we love!" - Rose Tico
I've been focussing on things I cannot fight, things I cannot win or change - when I need to focus on the positives and who I am lucky enough to have in my life.

It's Official - School's going back! (4 March 2021)

I've felt quite melancholy over the past couple of days and only just started to realise why.

It's been exhausting, and driven me crazy, but I will always remember this year with love. The year we stopped and spent time together.
Its helped keep my little ones little, with few outside influences, shut away from the world. Safe.
And now I have to let go.

I've had 3 big roles as I see it in recent years. Not unusual things, but everything feels like an achievement for me at times, even little things. Up to the summer I was working, and being a mum and all that entails. Then working from home, and home schooling and all that entails. Then keeping my little family going as the pandemic continued and all that entails,  including being a diplomat, a peace keeper, negotiator, plicatior, energiser, chef, cheif snack provider, activity suggester, mood raiser etc.

But now what? I've loved having my family wrapped around me. Difficult yes, but I've loved keeping them all safe and close, being responsible for their well being.
What will my role be when they go back to school? I've had to give up work, so things don't return to normality for me.

Yes I will be needed but not a million times a day to get logged on, to encourage a more detailed paragraph or forming letters correctly, or a hug when needed during the day or a snack to keep going. And that's as well all the other roles needed to be filled and already mentioned.

It's been so hard it's driven me to tears. I need it to be over, everyone needs life to move on, including me. But my role recently has been multi fold and intrinsic to everyone and everything. And, perhaps the biggest thing - it's allowed me to over look or more easily put to the back of my head, my seemingly constant decline.

What do I focus on now?

Day Zero (17 Feb 2021)

So today is Day Zero.

Exactly 11 months since we went into lockdown as a family I had my vaccine to protect against COVID 19.

A very bizarre experience. I felt I was looking at a film, but I was part of it. A year ago the scene would not have been a reality, only part of a fiction story.  But on a warmer, sunnier day than the snow we have had of late, I was directed through cones to the red marquee.

Lining up 2 meters apart. Everyone in masks. All treating these events as a matter of course.

Name. D.O.B. Time of appointment.  Hand sanitizer. Zapped with temperature gauge.
More queuing 2 metres apart. The foot fall at this one centre must be amazing. Directed to a cubicle. Explanation. Confirmation of details. "Are you sure you are still happy to have the vaccine?" "Yes please, very happy."
All done. "Thank you so much!"

Directed to wait. All seats sanitised as someone leaves, ready for the next. Someone gets up too early to go....he is questioned. There is something about the juxtaposition of our free society with this mass centre full of rules which must not be broken but is also full of positivity and hope for the future. Hope that this will give us our freedom back.

I waited my 15 minutes. Walked out into the spring sunshine, with a smile. Full of that hope.

#mumwithms #ms #coping #disabity #vaccine