Ah summertime!! The sun is shining, the air is warm and the snow has melted! For many, this is a time to celebrate surviving another winter and time for summer vacation. There really is nothing like summertime. For some, this time of year is met with cautious optimism.
What do I mean by Cautiously Optimistic? To start with, I am a fan of summer just as much as the next guy. I simply have to prepare myself for if and when the temperature get too high. You see, those with Multiple Sclerosis and Ostomy pouches for that matter, have to be prepared for the consequences of heavy heat. For most, when it gets too hot they may get a cold drink, perhaps alcoholic in nature and just deal with it. Grab a fan, go to a park and do what they can to cool down.
I’ll begin with the effects of heat on some with an Ostomy pouch. For starters, the pouch has a plastic flange that sticks to your body…heat, plastic and adhesives don’t mix well, especially when your body temperature increases.
Technology aids this with appliances that better tolerate heat than in years past. Apart from creating issues with the equipment itself, Ostomates tend to have mild to significant skin irritation. Incredible burning, redness and sometimes small ulcers underneath the flange itself. When the appliance needs to be changed, pulling off the flange can be incredibly painful. Then to irrigate and clean the area only increases the skin irritation. We do have many products to help in this although apart from increasing the frequency of changes we do, there is not much else that can be done.
Heat and MS don’t mix well together either. It is common for most MS patients to have some sort of intolerance to the heat. For myself, this can be severe at times. As I am writing this, there is a significant heatwave where I live, the Prairies of Western Canada. The temperature has been at or above 30C (low to mid 90sF) for over a week and the long term forecast only has a break in these temperatures for two days. There are many things MS effects in my body when it gets to warm. To begin with, my temperament. I’m sure my wife would whole heartedly attest to this. I deal with a certain amount of cognitive impairment on a daily basis, throw in heat and this impairment is compounded. I cannot focus on things. Even conversations, I hear the words being spoken to me, I just cannot process what is being said as quickly and often forget what was said sometimes within minutes. This creates tension for those trying to converse with me for obvious reasons. I also feel the tension, I feel embarrassed and frustrated for not being present in the conversation.
The summer heat also effects me physically. This summer, more than in years past, the tremors in my right hand are more pronounced. I do my best to shield these from others although it’s unavoidable at times. As I mentioned above, I tend to do more Ostomy changes than normal. When using my hands to complete these changes, the tremors create a whole new challenge. Trying to clean and prepare my abdomen is a challenge. When I’m ready to apply the new flange, the shaking makes getting a good seal difficult. When speaking with my neurologist about this tremors, he said there is unfortunately not much that can be done to lessen or prevent them at this stage.
Separate from the tremors, my legs tend to almost disappear from underneath of me. There is a drastic slowdown in the speed of which I can walk. Coupled with balance problems this makes life interesting. Needless to say, I will use my cane more often during the summer months. Walking a straight line is almost impossible, around the house I lean onto walls as an anchor. Walking down a flight of stairs can be an adventure, my eyes will not focus to well, so each step has got to be on point to avoid a fall.
Speaking further on my vision, let’s just say it gets rather interesting in the heat. Even with my glasses on, my vision gets incredibly blurry, sometimes double. I have had days where every so often I get a free light show. I see flashes in my peripheral along with dots. Again, this creates a bit of a distraction when trying to focus on tasks and conversations.
Then there is dizziness. As a father, I have tasks that must be completed. Kids tend to need to eat and be entertained lol. I am not one to allow MS to stop me from being a father to my kids, in the heat I do my best to stagger out the daily tasks. Planning time for me to rest in front of a fan in between. In the morning I will mentally plan out my day. So I know what needs to be done and when. This way I avoid doing too much at once. It will be interesting to see how my kids will remember these times when they are older. At the end of the day, I remind myself “It is what it is”. I cannot change how heat effects me, all I can do is be smart with the heat. Extra rest periods, lots of water and keep as cool as I can.
I do my best to maintain composure and focus. Although in the moment, it can be very challenging to say the least. Right now I am cool, to write this when I’m hot would be a completely different story likely filled with swear words. It’s not easy in the summer. But I do what I can. I may not be able to take our kids to a park when it is this hot outside. However, I do take them out when the weather is tolerable.
Life is a unique experience. I think back to my days before an Ileostomy and MS. Like most I looked forward to the summer. Going to the lake, the mountains, riding a bike and simply living outside. I never gave thought to an air conditioner or cooling vests, I had no reason to. I would be remiss if I were to say I don’t miss how I felt in those days. I remind myself if it were not for my life experiences, I would not be who I am today. I may have not met my wife which means I would not have the amazing family I do today.
I am a firm believer that everything happens for a reason. Life has a way of unfolding before our eyes. We may not know what is to come next, we can only live within our means and make the most of the ride before we hit the finish line. Remember this one thing;