Alone with MS? Are You? Really?
Am I alone with MS? I do wonder that, sometimes; at those times of fatigue and frustration when the darkness envelopes you. When you pound the floor having fallen again; when you curse this monster inside you; and when you cry out “Why me?”
But, of course, I am not alone — nor one of the lonely ones, of whom there seem to be too many who have MS.
First of all, on a personal level. My sweetheart wife Lisa married me almost five years ago with the knowledge that multiple sclerosis was an uninvited guest at our wedding and our subsequent life together. She is my wife, lover, best friend, and carer.
Secondly, neither of us are lonely, as we live in a great community in which people are always willing to lend a hand — sometimes even two.
Thirdly, there the other people with MS. They, like me, are always ready with words of comfort, ready to pass on their experiences and dispel both myths and the worries of others. When we lived in the UK, Lisa and I were both members of a support group and attended monthly ‘gatherings’ where, over a convivial meal we could exchange experiences or just enjoy the social occasion.
Practical help was also important. On one occasion, a new member wanted assistance applying for a UK disability benefit. During the course of two visits to our home, she had applied for that benefit and for a second that I recommended. Delighted to say that she was successful in gaining both of them.
Since moving to Spain last year, most of my “fellow patient” contacts have been through the social media. Oh, but what a splendid community that is. There I mix with others that have MS but, more than that, I belong to different groups with various MS-related interests. These include HSCT, various disease modifying drugs, no drugs at all, fatigue, wheelchairs, accessibility, and general disabilities. The possibilities are seemingly endless.
Never alone with MS when blogging
As a career journalist, writing is one of my passions and so it seemed only a logical step to start my own blog. And last August, http://50shadesofsun.com was born.
It started off as a run-of-the mill affair until, this year, many more viewers started visiting the site. They were especially interested in disability and similar posts. So, the blog began to focus on Health and Disability issues and has not looked back since.
And that’s what brought me to the attention of Multiple Sclerosis News Today and why I am here now, together with you in a new community. Actually, if you have a moment longer, let me tell you a brief but true personal story.
When diagnosed 14 years ago, my condition was described as benign. This was, probably, because the symptoms had only developed slowly over 25 years and the neurologist said he saw no reason why it should get worse any faster in the future. But it has.
Never having had an MRI scan since diagnosis, the best analysis of my condition was by an MS specialist nurse in the UK who said that HE (a nurse, not a doctor) thought I’d had RRMS but now had SPMS.
Last week, however, I heard something different, thanks to Multiple Sclerosis News Today, and it makes sense. Having interviewed an MS doctor in the United States as a follow-up to a story, after it was over, we were just chatting and my symptoms popped into the conversation. She asked a couple of probing questions and then said that from everything she had learned, she would say I had Primary Progressive MS.
Suddenly, the light went on. Yes, there are good days and bad days but never a serious relapse in the way that people with RRMS experience. Right from the start, mine has been progressive, thankfully only relatively slowly so far.
Now it’s just a question of waiting to see my new neurologist here in Spain, to see what he or she suggests next.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this blog article are not those of Multiple Sclerosis News Today and are only intended to spark discussion about issues pertaining to Multiple Sclerosis.