Do Over – Chaos and Order
It’s been tough for me in the last year or so; I started 2015 off with a slow and steady relapse that made me realize that Tysabri, the treatment that had given me my life back, was no longer working for me. Because of this I decided to try the treatment Lemtrada, a type of chemo agent that was relatively new for the treatment of multiple sclerosis and though not too much was 100% known about it, the one thing that everyone seemed to agree upon was that it had to get worse before it got better. There is not a “set in stone” timeline yet but most people say that the first year is rough and then it starts to get better. Well, I am only about 6 months post and it has definitely not been fun so I can only hope that I will start seeing some change soon!
OK, so why am I telling you this? Well as rough as it’s been on my body it has probably been worse on my mind; my mental/emotional health I mean. Lots of depression, anger and negativity. Lots of dwelling on the past and thinking about how much of what I used to be I miss and how “I will never have that again”. Inevitably my mind went where a lot of people’s minds go; “I wish I could have a do-over”. “If only I knew back then what I knew now I would have done so many things differently.” I would have been more active, I would have focused so much more on physical fitness, diet, keeping my brain active, etc. Things would be so different…
But there is no “do over” button in life, that would be nice wouldn’t it? All we can do is try to fix the mistakes we made in the past and what sucks about that is so many things in life are like a piece of fine china; it doesn’t take much time to drop and break but how long does it take to glue every shard of glass back together? Forever! It can take 2 seconds to break an arm but months for it to heal. The brain is no different it seems. When you don’t take the necessary precautions to try to prevent a relapse you can quickly fall apart but the rehabilitation process takes forever and just like that china plate will never be the same after you glue it all back together your body will never be 100% the same! It is always easier to create chaos than order.
So now I feel like I have once again “hit rock bottom” so I am trying to decide how to go about piecing my life back together. It feels like I have just been trying to keep my head above water for so long that I have stopped doing all the little things that may have actually been helping keep me a little stable. Things like taking cool showers instead of warm showers, not eating out, making sure I get all the right foods and vitamins in me, etc. Things that individually may not do anything but collectively might actually help my MS. I guess I have felt like such garbage these past 12 months or so that I just wanted to feel “comfortable” despite the fact that long term I was doing more damage and contributing to the very things that have made my life miserable! But it was easier…
I recently had a relapse again and am just now starting to recover so I am starting to feel a bit better as in, I almost feel as good as I did 2 months ago but not as good as I did before Lemtrada. But, progress is progress. So now I am trying to motivate myself to start doing all the little things that I did when I was first diagnosed with MS that may have not even done anything but at the time I was just trying to do every little thing that I could even if there was not much evidence to support it. I remember taking baths in ice water to try to “reduce inflammation”. Did that actually help? Probably not but I was in “fight mode”, “I will do whatever it takes mode” and maybe, if anything, it was good for my mind. Good for keeping me fighting instead of giving up. I need to get back to that state of mind because how else will I beat this? Because there is obviously no “do over” button in life.
Have you experienced any of these vision symptoms? (select all that apply)