When your body shuts down

 When you think you have your day kind of planned and you find yourself staying at home on the sofa. This is MS unpredictable always.

Now this may seem nice to some people who don't understand MS. But being forced to sit and do nothing is not always such a fun thing. Especially when you were the person who was always on the go. My house was super clean to a point it was over the top,my garden well..... the lawn was mowed and the outside area spotless. To top it off i loved decorating inside and used to drive to the shops and buy all sorts of furniture and decorations to fill our house. I would then re arrange my house inside,move furniture up steep stairs and be totally dangerous doing this. I would then pick up my two boys from school and continue my household tasks and two busy boys. To top it off i played tennis four times a week and bring my boys to their soccer games and not to mention all the school events i attended and watched their sports days. 

Coming home and having time to chill by the pool with a great cup of coffee and be ready to prepare our family meal.

In these days i met with school mums on occasion and had lunches or coffees and now and again some sort of mum day event. Basically my life was full stream. I could not sit down until my house was clean and usually had to make time to chill and have my coffee.

Now welcome MS....... my house is not so clean as it once was. In fact some days i just let it be.

My decorating desire is still here but i am no longer carrying heavy stuff. My heavy work is doing the groceries for the week. Usually i need the day after to recover.

My tennis days are long gone and even any sort of exercise is a challenge. I now try towalk as much as possible. Working out at the gym is no option as my body goes numb from using any machine.

So i just make the most of my walking skills which i still have.

My boys are now older so they help me most of the time. My youngest will walk our dog when I can't really move that day and my oldest helps more psychologically wise. He has his masters in psychology. 

Not every person with MS is the same,each one of us is different. Some might have no problem working out at the gym while another may find it impossible.

My husband cooks dinner now.Thank you.

I am still lucky i can do a lot of things but there are days like today,i am just shut down. MS fatigue has set in and my legs just won't work. Tomorrow i could be shopping and no one would know any better.

What's hard though is friends and family members ( not all ) have a hard time understanding. On the outside they may see nothing as it's invisible. Or they may not believe because as many people with MS know " we look so good". This is a huge problem in our community because we feel not believed. That we are faking it. We look good so we must have no pain or fatigue or many of the symptoms that come with MS. You also hear " why don't you try harder" or be more positive? Usually this is said by people that don't have MS. They mean well but just have a hard time understanding the complexity of this illness.

This is where the difference comes in regard to friends. You may notice i wrote in my pre MS diagnosis I would have lunch,coffee and events with friends. This tends to change for many that have MS. We cannot be predictable like we once were and things get cancelled last minute because we may not be feeling well. This results in people not understanding as you seemed fine yesterday or 2 hours ago.

We don't have much in common anymore because most of us don't work or are very limited. Our life is very different to what it once was.

Not enough awareness and understanding causes these big problems people with MS experience on a daily basis. Usually that we become isolated, stop trying to make friends or keep friends. This is a huge problem people encounter.

Let's hope one day there will be more awareness and knowledge.

Stay strong my MS friends :)