We love to talk. Issues, symptoms, what’s your neurologist like, what DMTs, if any, do you take? How long are you diagnosed? And there are so very many opinions! All sorts of things are discussed when MSers get together, online or face-to-face. But how do we do it with grace and kindness without dumping on someones path to enlightenment?
I was involved in a discussion where someone shared how well they were doing, crediting their change of health with better diet, exercise and more sleep. It works for him- he’s feeling better, pins and needles gone and he’s really enthused by his experience and wants to share it. Some people cautioned him to be careful, he’s only new to MS, to watch out for the ‘snake oil’. I know people want to ensure that he isn’t being naive but I did think it was a little tough.
Yet, it is what we all need, others to critique our beliefs about how well we are doing. This causes us to examine why we’re doing what we’re doing and to make truly informed decisions. But it also forces us to honestly reflect on our true state of health and self.
There are snake-oil sellers everywhere waiting and wanting to exploit our vulnerabilities. Early on, post-personal tsunami, I remember being told of the miracles of some juice that cured MS, it was only €€€€ per week and could only be bought from XXX person. Totally faux. There are faith-healers that have the cure and whilst this isn’t in my value system, it is for others. All I try to do for great health is to learn, read and discuss everything and go outside my comfort zone. There is no such thing as carrying on life as normal with a chronic illness. We do all we possibly can to give ourselves the best chance possible and for all of us as humans, it includes a great diet, plenty of exercise and more than enough sleep.
Recognising that there are also many different paths to enlightenment, to self-preservation after getting diagnosed with MS gives us strength and allows us to change our mind and strategies. We all know how dealing with this condition can be a monstrous, daily toil of decision-making, as well as being a revelation as far as human resilience . There is better medical treatment than ever before for MS; there is more research, there is more interest and thanks to the internet, we get to learn from other MSers who understand what it means to live with it.
It is up to every individual to to make well-informed decisions and do what’s right for them based on their values and well-interrogated research (on nutrition, exercise, mental health, medical treatment, rehabilitation, work etc.). Don’t get distracted by people who claim to have a miracle, over-night cure. This is a marathon, we do things everyday to stay in shape, stay well and build resilience. Whatever we do, we need to be prepared for change and readjustment. Nothing is ever the same since the D-Day, yet life can be better than we ever thought possible when we were first told we had MS.
Check out the Overcoming MS Recovery Programme and buy the book by George Jelinek- a great resource.
© Emma Rogan 2016