What is it like having MS? Part 2

Continued from Part 1..... An MS hug is not the cuddly, comfortably loving hug you get from a person you care about, it's a gripping, tightening, contraction of muscles around the mid section that just won't release... and when it does it comes back in waves... and there is nothing I can do about it, nothing short of high doses of pain medication that can give me about 2-3 hours of relief where I can get some rest in some obscure position lying on the floor, huddled with heat packs and pillows scattered around. This can last for about a week or two and then it disappears. Try doing that when exhaustion is already a daily grind.

As time has gone on, I find that my fatigue is probably the hardest to contend with as it interrupts everything, shopping, school commitments for my kids, even just going for dinner with my friends and family. I am finding I am trying to organise these things for the middle of the day so I know I will be able to get through them. When it's a night time commitment, my anxiety of not being able to completely enjoy myself (and letting people down - blame the fact I'm a Libran!) starts to get in the way and I am trying to work through in my head how I can leave earlier without inconveniencing anyone and so Nick can still enjoy himself without having to worry about me. As well as scoping out the nearest bathroom and fresh air and a place to sit. And it's not just the act of going out, it's the noises and smells and lighting that can be like an assault to my senses. All of these things play havoc with my nerves and as a result I feel sick, more exhausted, weak and my vertigo comes back in spades and I can't get home soon enough. In some cases, I have barely made it to the next suburb and I have had to turn back home.

So as the years have gone on, my quality of life has suffered, I am finding I can't be my natural self, which is that outgoing, happy, bubbly person that can work a room and talk to anyone, have a few drinks and dance until the sun comes up... I am turning into someone I am not 100% comfortable with... I am hopeful that with this treatment, I can slowly return to the person I am, my true self, my happy and fun-loving self. Not just for me, but for my kids and for Nick. Please don't mistake this as a cry for pity or a plea for help... it is merely my story and my experiences that I felt was important for me to share, because MS is a silent, and for the most part, invisible disease. People see the outward effects, difficulty walking and clumsiness, but it's important that you also know what goes on behind the privacy of our front door where I can hide it from the world. But hiding it, helps no one to learn, and grow and to understand. I could go on and on about the symptoms of MS, but that would take several entries, but hopefully I have given you enough of an insight on what it is like to be someone with MS.