The ups and downs of this dis-ease are so hard to share with those who have not experienced it. Over time and through experience many of us have learned that it is difficult for others to understand how depleting it can be to live with disabilities that are quite often changeable and unpredictable. It is just too exhausting to constantly explain all the subtle and the not so subtle accommodations and adaptations that are made just to get through a day; so they often aren't mentioned. Add to that, having symptoms that are constantly there, medication side effects and the emotions that arise as a result.

That is a huge load which becomes overwhelming for us at times; so I think that when we do express our frustration and suffering when it becomes too much to handle on our own, we should remember that others have perhaps not been privy to the build up. To them it may just come across as us having a "bad day". They simply may not appreciate the ongoing nature of our suffering; much less how to help us deal with it. Because of that, they might then experience their own form of frustration at not being able to make it all go away.

I think that it does help to let others know that when we are overwhelmed, that what we are looking for may be some something as simple as compassionate reassurance in the form of a comforting hug, some kind words or maybe a bit of assistance with everyday sorts of stuff that isn't getting done. My late DH was awesome with that, but after his death 7 years ago, living alone and carrying on has been difficult at times. There have been experiences with levels of isolation that I didn't even know existed; yet a simple act of kindness can be so uplifting.

I remember coming home to a great unexpected gift after I had been away for a week to attend medical tests and specialist appointments in the city (I live in a small town). My house/pet sitter and a friend had committed "a neatness" in my house and yard while I was away. I arrived home exhausted and depressed, but my mood instantly changed when I pulled into my yard. The lawn was mowed and the flower garden had been weeded and watered. It got even better when I entered the house because the floors had been washed and the floor mat carpets had been cleaned. There was even a vase of fresh flowers and a sweet note welcoming me home on the kitchen table.

I almost cried, because it was so wonderful to know that someone cared enough to reach out and show it in such a meaningful way. It was such a relief to have those chores done as I had not been able to do it properly for some time due to spasticity, fatigue and severe headaches. It meant so much, yet although I tried to express it, they may never understand how much of a load had been lifted from me by their kindness. It really helped to change a deepening sense of isolation that I had been experiencing; and for that I will be forever grateful. Things like that will never be forgotten.

May you all experience such compassion and kindness from those in your life.
What another wonderful gift it has been to find it in the genuine kind thoughts of those who do understand what we are going through here on this site.

Thank you.