06/20/2012

This week has been VERY hot outside. Heat is not a good thing for us with MS. We tend to be heat intolerant. What does that mean? So, everyone gets hot so what... Well, folks with MS... our nerves are basically exposed... So think of it this way... You have a huge cavity in your tooth. The nerve is very exposed therefore, if you drink anything hot or cold it would cause you severe discomfort. Right? Same kind of thing with people with MS, our nerves are damaged. The mylelin coating around my nerves is damaged. So just like if your house wiring does not have the insulating coating - there is trouble if you keep turning on and off the switches. It is probably severe enough that you get a house fire. Well, that is what basically happens to me. My nerves are damaged and there are places (many) where there is no coating around the nerves. Severe heat or cold cause me to overheat on an extreme degree. Since I do not have that coating in some places, my internal thermostat literally gets "stuck". Then I am just burning inside and outside. Another way to think about it is, if your car thermostat does not work properly and you drive extremely fast (such as one of my races) the car will overheat, stop working properly, and may destroy your engine permanently. Same thing with me, I shut down literally. My cognitive aspects go right outside the door, my balance, the foot-drop, the tightness/banding feeling --- all of it escalates 100000000000000000000%. This is not an exaggeration... For me it could very easily lead to some time in the hospital to bring down that core temperature and then through IV steroids to bring the symptoms to a manageable level. So yes, heat and MS are very SERIOUS!!!!! So with my running I have figured out that the very second I cross the finish line - I HAVE TO COOL DOWN RIGHT THEN!!!! So I go to every race with a pack of blue ice. I have my husband and friends literally start putting the ice on me as I cross the line. It seems that if this happens before that thermostat has a chance to really get "stuck". Then I can be absolutely fine for the rest of the day... no problems. So as you can see, there are SO MANY things that I have discovered so that I can participate in this sport. I have had to figure all of these things on my own and what exactly seems to work for me. But - OK - if that what it takes for me to run, OK. I have my "people" that understand and are willing to help me. This is also why my race times are MUCH better with cooler weather. It is less stress to my body. But I also fluctuate the other way... I cannot handle it if it is cold. Just like that tooth with the big cavity - you cannot go eating the huge cup of ice cubes. Same with me, all those nerves are basically exposed. So the extreme cold causes me unbelievable amount of shear PAIN. So as you can see, I am a balancing act all the time. I never know when my body will fall out of "balance" but, to dwell on that is pointless. I believe in living for today and the now. I celebrate EVERY single time I run and work out... I celebrate my mobility!!!! There was so many years, that my mobility was so very limited that now I feel (even with my current issues) that I have much more freedom. It is a very strange feeling. It is like I was in bondage and someone untied me. So YES - it is a HUGE deal!!!! So that is why I have decided to keep a diary of my experiences and thoughts. I hope that maybe it would encourage others and I hope and pray that I will continue to progress. I know and truly understand that MS is EXTREMELY unpredictable. Who knows, MS may knock me flat and my running days are over. But then again, maybe not.... I don't know the answer. I know that my overall physical health is better than ever and my MS symptoms (on the whole) are fairly tolerable. What more can I ask for at this point? I feel EXTREMELY grateful to be able to say that. So YES - the nutrition and exercise are so very important!!! I know there are MANY days that after work driving home - I think I am so extremely tired... But I know that is that damn MS fatigue talking.... I go and workout and usually I get a burst of energy to get me through. Afterwards, yes - I am EXTREMELY exhausted. I cannot even verbalize my thoughts. I just go home and rest. Then after I am ready to go again. I know you may think this is way to masochistic. Maybe so. Also I will tell you that my overall health is better than it has been in decades, my fatigue level is better than it has in decades, my cognitive aspects have improved GREATLY, my balance has improved GREATLY, etc. So YES - it is worth it.... I believe that by being diligent with the exercise and nutrition I will prolong my decline with the MS. I will also be around and active whenever I become a grandmother. I had a very active grandmother. I plan to be that same way. Not the grandmother that the grandkids push in the wheelchair.... I want to play with them, run with them, jump, and climb.... To me that is a goal.... So I continue to push... Yes, I do take "breathers" now and then. They do not last long maybe a day of rest. But for me since the spasticity in muscles are so severe they become very very tight feeling. So working and stretching the muscles everyday is so very important!!! It is not like "normal" people. The tightness is awful. So stretching and working those muscles are imperative to my mobility. It does not matter if I am tired or don't have time.... No - mobility is way to big of an issue for me. I have been down the limited mobility road for too may years - I want OFF.... I LOVE being mobile and vow to do anything it takes to continue down that path. The sacrifice is WELL WORTH IT!!!!!!!!!! So go and do something... run, walk, swim, whatever... just move.... I have a saying on my ID bracelet "Just Do It". So no matter what just do it... whether you walk with a walker, cane, or just slow... move... "just do it"!!!!!!