By the time this reaches you, loyal reader, it will officially be summer. The prospect of warmer weather, sunshine, and all that comes along with summer used to excite me. I despise cold. I don’t even like being a little chilly. Therefore, I always looked forward to the summer months. This has changed drastically since diagnosis. A year ago, just a couple months since diagnosis, I had no idea what to expect from the coming summer months. This year I do. I am not looking forward to the coming days. Heat is now my enemy. It is apt to trigger symptoms, and in my case, these symptoms have caused me to completely change the way I approach summer.
As the temperature rises, I have more bad days. The fatigue becomes a heavier weight. Trust me, too. Weight is the best way to describe it. It feels heavy. Simply lifting myself to a standing position is a chore. It’s as if I constantly carry a fully loaded back pack that never comes off my shoulders. Once I do get up and moving, I’ve got to face the challenge of the fact that as soon as I walk out of my air conditioned home into the summer heat, my right eye, which has never been the same since the initial attack, is going to blur over as soon as I step out that door. There seems to be no avoiding that. The hotter it gets, the blurrier the vision.
Additionally, a different form of focus is affected. Concentrating on anything becomes more difficult. It’s like my brain can’t fully grasp the simplest of subjects. As I write this, I’m having trouble keeping my thoughts on the subject. I’m sitting at the desk in a quiet setting, yet attempting to concentrate on my writing feels like I’m in one of those money booths. Do you know the ones I’m referring to? A glass booth with a fan under the floor stirs a flurry of dollar bills around the subject inside. That person tries to grab as many swirling bills as they can before the countdown hits zero. In my case, I’m trying to concentrate on catching one particular dollar bill out of the hundreds that are being kicked up in the whirlwind that envelopes me. I can locate it, usually even get a hold of it, but then the wind surrounding me causes it to slip away and I have to try to lock on to it’s location once again. The warmer my body gets, the more difficult this becomes. It’s truly dizzying.
And speaking of dizzying, the hotter I get, the more unstable I become. Do you know that feeling that you get when you stand up too quickly and you have to take a moment to steady yourself before taking a first step? Yeah, that happens to me most times when I stand up, as the mercury rises.
To compound that situation, my legs become shaky, numb, and unsteady more often. They feel like I have just finished a good jog. They feel tingly and weak, without the precursor of exercise. This is what I have to look forward to in the coming months. This is my MS in the summer.
So no bones about it, it’s a challenge. This year I know what I’m in for. Last year, right about where I left off in my last post, I had no idea. I really hadn’t expected it to be so severe. I had started the Aubagio treatment, and had started to look into supplements and the like. The Aubagio was making a definite difference, at the time. My eye wasn’t reacting to temperature changes nearly as drastically as before. My energy was up. The numbness and tingling in my extremities had diminished. My outlook was hopeful and bright. Yeah, I had this thing in check.
Then came the heat. At first, I tried to ignore it. I tried to push through it. I thought that mind over matter, with a little help from cooling neck wraps and headbands, would keep me in the range of activity that I was used to. Boy howdy, was I wrong.
The worst was the frustration and guilt that came along with it. Jen and I had worked our yard together for the 9 years before. Now, though, I would last about an hour at best before I would have to sit down and rest for a bit. If it was really hot, 100+ degrees, I would sometimes only last for 15 or 20 minutes. I felt like I was letting Jen down. She ended up doing the majority of the work. It made me feel like I was now so much less than I was before. There was no mystery that I never enjoyed working in the yard, but I always did my fair share. Now that I couldn’t, I regretted every time I complained about doing the work in the years past.
Sometimes, out of pride, I would push on longer than I should have. This would leave me spent and almost useless for the following day or two……and that was best case scenario. There were a couple of times that I had pushed too far for too long that I almost lost consciousness. Everything would start to get fuzzy. The ground beneath me seemed to no longer be solid. My peripheral vision would fade to a dark gray as if I was in a tunnel. I knew I had pushed myself too far. So did Jen. Trust me. Once I regained full awareness, I was duly scolded by her.
I began to hate the greeting, “How are you?” Innocent enough, right? The problem is, I felt crappy. But most people don’t want to hear that. When they use said greeting, they really don’t want to know how you are, for the most part. They are just saying ‘Hi’. Yet every time someone would walk up to me and ask, “How are you doing?” my mind would struggle to come up with a response that I didn’t have to struggle to get out. ‘Okay’ didn’t work, because I wasn’t okay. ‘Not bad’ didn’t suffice, because, often, I felt horrible. ‘I’m getting by’ became my go to. I was getting by. I am getting by. But it often isn’t easy. It was like I had suddenly had my 20 gallon gas tank replaced with a 5 gallon tank. I could start off strong as ever, but then, would start sputtering long before I should be out of gas. Soon, much sooner than I liked, I would have to pull over to the side of the road in a stall. And nothing but time and rest was going to refill the tank. It was just something to which I had to face and adjust my life accordingly.
It’s a year later now, and I still don’t think I’ve fully come to terms with that truth. I still often try to push myself further than I should. Although, I do my best not to get to the point of passing out.
During this period of time last year, I was having regular visits to the neurologists on a monthly basis. They like to keep a close eye on the newly diagnosed to see if the medication is having the desired effect, and to see how the individual is responding to the treatment. During this time, I had follow up MRIs six months after I started the medication. This time, a small lesion showed up in my brain. Before that, they had only found one on my spine. Needless to say, it was unwelcome news. I wasn’t prepared for that. Jen, unfortunately, hadn’t been able to come with me on this visit, but by now I had become quite comfortable with asking questions. So, while I stared at the pea sized white anomaly on the image of my brain, I asked how much this should concern me. Was the medication not working? Dr. Rhymes With Gong told me that due to the size of the lesion, and the fact that it had not been there in the MRIs months before, she felt it had probably made it’s appearance in between the time of the last MRIs and the start of the medication. She felt the Aubagio had nipped it in the bud shortly after it had formed. I could only hope she was right.
I had one more monthly visit after that one. This time, Jen made sure to be with me, because, as usual, she had more questions. She is very good at being thorough with defining situations like this, and I couldn’t be more thankful for that.
Now, on this next visit, I got the little hiccup that I had mentioned earlier. It caused yet another, thankfully shorter, ride on a rollercoaster. She informed us there was one more test she wanted to perform to make sure that yet another disease that MS had been mistaken for in the past, was off the table. This disease is known by a couple of names. Devic’s disease and Neuromyelitis. This disease is often characterized by immune attacks on the optic nerves and the spinal cord. You can see why it gets mistaken for MS. The reason it became another emotional rollercoaster ride is because the treatment is much more invasive. The neurologist told us that the process for fighting it was almost the same as fighting cancer. Chemo, powerful drugs, and an immense effect on my everyday life. Great…………Once again Lewis Black’s voice rang in my head. “Son of a bitch!”
So, once again, about five or six vials of blood were siphoned out of my body. It was a very odd situation this time, though. Turns out this disease is so rare that the technician who drew my blood had never heard of it. After drawing the samples from my arms, she had to refer to a book that was about as thick as five volumes of the Encyclopedia Britannica to look up the code that would be needed to let the staff know what to test for. This did not comfort me at all.
As I left the office, fear and uncertainty had once again enveloped my thoughts. Would I have to start taking chemo soon? Would I be able to work and contribute my share in the near future? Would I soon be bed ridden? All I could do was wait for the results and hope for the best. God, I hoped this wouldn’t take too long to get the answer. I thought I was done with the guessing game. Apparently, I may never be done with it.
Yup. I’m going to leave you with another cliff hanger until next week. I had to wait almost two weeks. I’m only making you wait until next Tuesday. Count yourself lucky.
Until then, thanks for reading, and try to stay cool as we officially swing into summer!