It Is OK To Change- Especially If You Have A Neuromuscular Disorder
We are the privileged few. The chosen ones.
You know, the ones diagnosed and living with Myasthenia Gravis.
Myasthenia Gravis affects 20 per 100,000 people worldwide
Aaah, now that we have the official stats in place let us get on with the art of living a fruitful life with Myasthenia Gravis.
Acceptance is by far the 1st step towards management of Neuromuscular disorders in general and Myasthenia Gravis in particular.
So easy to write. So difficult to imbibe and implement. No wonder I decided to write and speak about it only when I completely accepted that MG is a reality of my life.
I learnt and accepted that it is OK to change your life and day to day living as per the health condition and the muscle strength to make it easier for myself and indirectly easier for my family.
These are simple adjustments that go a long way in easing the discomfort from the fact that one is unable to do things all by oneself. See if you would like to incorporate the same in your life or that of your loved ones having neuromuscular issues.
- WAKE ME BEFORE YOU GO GO GO: Should actually be DON’T wake me up before you go. Let me sleep till whatever time. It is OK to sleep till 8 or 9. I don’t have to jog or go for a marathon practice session. My body is asking me to rest a little more and I shall do exactly that.
- MUGGED: Yes the mug in the bathroom. It weighs like the 5 kilo dumbbells I used to effortlessly pick at the gym 15 years ago. They are heavy to pick as is, add water to that and you are doomed. So I found an alternate. There are smaller mugs available, a little bigger than your coffee mug! It suddenly eases the effort, both physically and mentally. It is OK to buy one.
- HELPPPPPP: A magic word. Help. Take help. From whoever is close by and or is close to you. There are things that you might not be able to do all by yourself today so it is OK to ask for help
- Bath: Oh this is a killer on those ‘bad’ days. One has to psychologically prepare oneself for the event of the day! Ask someone to scrub your back. It is better than gasping for breath and lying almost dead for the rest of the day.
- Changing clothes: Do you know how difficult it is to put your hands in the sleeves and pull a shirt over your neck and shoulders? It’s a task as difficult as climbing up the EBC (Everest Base Camp) except we do it each day. Take help from a family member for God’s sake. Feel like a kid. Get pampered.
- Hair wash: Hair wash day is the one of the most grueling days of the week. However, we now need to adjust the days and frequency according to our energy levels and muscle power. Each hair wash is generally accompanied with red, swollen, watery eyes because you are unable to keep them shut as tightly as before.
Solution? Lessen the number of washes if possible. Change your hairstyle as per each passing day, Day one-Ooooo…..blow dried hair. Day two: pony tailed hair. Day 3: Plaited hair. Day 4: The gelled and bun look. Day 5: Good Lord…hair wash day…but this time ask someone to wash it for you. And it is OK to ask.
- BABY FOOD: Mish mash your favourite foods and eat. It’s better to have overcooked rice and millets than to struggle with it and overwork the poor facial muscles. No one is going to judge you on what you are eating and if someone does, you do know what to do. Take help from someone and shove it up the person’s nose.
5. NO MEANS NO: We never learnt it all our lives. Now is the time to say it. Say no to:
- Parties and weddings: Please tell me if you remember who did not come for your wedding or party from the long guest list that you missed terribly that day? No one misses the absence of a guest in a big party or marriage ceremony. It is fine to be cuddled in bed, conserving energy for the next day rather than being at an open air wedding, putting your lungs at risk and rushing to the ICU.
- Movies: It is OK to say no to a movie plan by friends and family. Thank God we live in the digital age and have options galore: Netflix, Amazon prime and 200 channels on the telly. Eventually we shall get back to it but presently chances are that apart from a movie we might catch an infection too.
- Visiting guests: Say no if you are not upto it. If they understand keep them in your friend list but if they get upset, chuck them right away. Also, unashamedly ask and ensure that they are not getting a cold and cough as a gift for you.
6.FOOTSIE: Silly me discovered this just recently. When bending down leads to breathlessness like you did a 20 minute treadmill at the speed of 7, you need to change the tactic. Use your foot instead. Ofcourse, it is to be done only by those who have leg and calf muscle strength. But yes you could use the foot to switch the floor buttons on and off, to pick things from the floor, to clear the bed with one leg swoosh (when no one is around to see or help).
7. REST REST REST: It is Ok to have a mid-morning, afternoon and a mid-evening power nap. That is like energy bull for us.
These small changes, need to be incorporated when the going is tough. Once medication comes into effect, the symptoms subside and we see remission at the end of the till now dark never ending tunnel is when we can get back to a more action oriented life.
Till then my friend, the key word is OK.
OK to take it easy and OK to take help.
Meanwhile, as always, a small little prayer that the medical fraternity finds a sure shot cure for Myasthenia Gravis soon. Very soon.
PS: The song playing on the radio while I was writing this suddenly seemed so apt. Sharing it here to make your day a trifle more brighter than the cloudy day in Delhi.