There is no denying it, having MS can feel like the end of the world, particularly when you are first diagnosed. You can even feel cursed that you have been struck by this unbelievably evil disease OR did you great the beast within you, yourself? It's an interesting question. When you start taking your head out of the sand and converse with other people who have MS you start to see similarities in your life path. Some of common factors I have discovered are - anxiety in teens and early adulthood, health issues around tonsils and glandular fever, drug taking, panic attacks and unhealthy diet. Don't you wish you could go back to the beginning with all the knowledge you have today and have do over? Sometimes I think that BUT then I might not have ended up here with my family - would you take the opportunity if it was offered to you? Perhaps you may end up on a different path with different challenges. So, as much as I would love to be able to walk unaided again I wouldn't change that path that got me here. It may be that my MS is a result of all these things added together - let's face it, the scientists can't work it out otherwise they would have a cure by now, so it could just as well be these were the triggers or perhaps it just is what it is and we are just randomly selected to suffer with the ups and downs of it all.
One thing I find strange about MS is this...
15 days ago was the start of 10 really good days for me. My walking was still bad but it was good bad (those with MS will know what I mean), things were easier. My movement around the house was easier, my legs were stronger and everything felt really positive. Then poof those days disappeared and I've had 5 days of hard work - my body doesn't want to do anything even standing for long periods is hard. I have still carried on as much as normal - I still did my workouts, I even cleaned the bathroom and I still cook dinner most evenings. But my body is not working well.
How comes one day my movement is so much better than another day and this comes and goes all the time with MS - which means underneath the MS things work still surely? So, what is making it worse in those periods - is it the food we eat? the amount of sleep we get (and yes in my diary my sleep has been worse for the last week) but why are our bodies so susceptible to the slightest change? This has to be based on something we are doing. I am also mid-cycle so again, I think this has a negative impact on my body - but why?
No wonder they can't cure MS it is a minefield - everyone is different from the other. With cancer you know the pathway - although there may be differences within individuals the path is pretty constant. I am sure the person who figures this out will win an award because there surely has to be answer there somewhere. It just seems to me that they are always looking for a cure to fix things rather than looking at how it all starts in the first place and then working through it find a cure. Diet and supplements have to be key - how can the pharmaceutical industry ignore so many positive stories that are out there and why aren't scientists looking out for us rather than lining the pockets of these big corporations with drugs that don't cure. How often do you hear positive stories from the major drugs they push out there? I hope in my lifetime they get answers, real answers that actually eliminate the problem entirely.
I try and educate my son on the best way to avoid being targeted by MS but he doesn't pay much attention to me. However, he does take 4000ui vitamin D3 daily, he does eat lots of fruit (could do with improving his veg intake), he exercises, he doesn't really drink and he definitely stays away from smoking and drugs. I just hope in time he will see the benefits of living a health life and I hope he won't be cursed with MS.
I also hope with so much more information online that those who get diagnosed today can inform themselves with information beyond that of a neurologist and make a decision on how to move forward based on all of those resources.
To end, why not listen to the Little MS Sunshine podcast I recently took part in with Emma and Anthony. I hope Emma won't mind but I've used her image in my photo for today's blog. Emma has lots of really great podcasts you can listen to so take a look at her Twitter account as well.
Thanks for your blog. MS is so frustrating the wy it can feel so random somedays, hey?