Since I decided to write a blog, I was afraid of days like today. This was why I wanted to have three posts ready prior to the website launch date. However, that didn’t happen due to various reasons, one of them being my health. The three weeks prior to the launch, I pushed my body to its limit; my body is now pushing back and giving me all sorts of symptoms to struggle with. My second post this week was to be about why I decided to write a blog. I decided, instead, to write this post about my current flair-up of multiple sclerosis (MS) and trigeminal neuralgia (TN) symptoms that I have been struggling with since late Tuesday and have worsen since then.
The key thing to remember with my symptoms is that they are not the same 24 hours a day 7 days a week. Sometimes, I feel good for a couple of hours in the late morning and then the next minute I have an intense strike of my trigeminal neuralgia pain in my right eye – like a lightning bolt. Other times, I feel a bit fatigued so I take a nap hoping to feel better, only to feel twice as worse when I fell asleep. MS is VERY unpredictable and unreliable. It creates havoc in my social life, and any type of work I do. I am learning to manage it better. It’s taken me years and I am still learning. Next week, I’ll return to my original plan of discussing why I chose to write a blog and describing trigeminal neuralgia (TN).
Both MS and TN are neurological disorders. In MS, the myelin sheath (which insulates the nerves protects communication travelling along the nerves) breaks down. Thus, when demyelination occurs, the myelin sheath breaks apart and messages travelling along the nerve are not properly delivered to the right place. For example, during a flair-up of my MS symptoms, my right leg does not lift as high as my left leg does; also it is painful to walk. With MS, there are a variety of symptoms, such as (but not limited to):
- muscle weakness
- fatigue (same as above)
- heat/humidity sensitivity
Today, my main MS symptoms are extreme weakness all over my body, fatigue, and pain in and trouble walking with my right leg. Defining MS weakness can be difficult. Try to imagine the last time you were really sick with the flu. Remember how weak your body was? You couldn’t really sit up, let alone stand. Moving around to go to the bathroom or get food was so hard to do. This is how I feel when I have MS weakness.
My MS fatigue usually occurs on a daily basis, but at varying degrees. Today, it was a “7.” My fatigue feels like I have to exert so much energy just to keep my eyes open, my body awake, and my mind moving. All I want to do is lay down and rest and sleep; this may be true even though I may have slept 9 hours that night. My thoughts are sluggish. It takes me so long to think – to compose even this seemingly straightforward post. It’s as if my body and mind are moving through sand; like my mind is moving through quicksand sometimes.
Trigeminal neuralgia is also a neurological disorder (usually occurring on one side of the face). My TN is on my right side and feels as if there is a sudden shock-like, electrical pain in one or more of the three areas of my trigeminal nerve (get it “tri” meaning three. I know lame..but give me some leeway today):
- Forehead and eyes
- Cheek and the side of the nose
- Lips and jawline
Today, my main TN pain is in my mouth/lips and along my right jawline. In addition to my TN pain, there is a side-effect of a TN surgery I had in 2006 that resulted in a constant feeling of pain and numbness called anesthesia dolorosa. We’ll discuss it more when I do my post next week on TN. For now, just know that it feels as if there is a persistent low level buzzing. Sometimes the buzzing and pain is more intense than others. Think of it as the static on a radio. When you turn up the volume, the static is louder (my static is more painful). When the volume of the static is lower, my pain is less. Well, today, my static is fairly bothersome – a 6 on a volume scale of 1 to 10. It is painful enough to limit my talking. This is one of the reasons why I started a blog: to reach out to other people through the web because I could not always keep in touch by speaking on the phone. I became active on Facebook, Twitter, online-chats, because speaking was becoming more difficult for me
Why Tell You All Of This?
In this post, you got a peek into what are some of my “not-so-great days.” This is NOT a pity-party. I have lived with this at varying degrees for 12 years. I know that eventually the pain, weakness, fatigue, everything will go low enough on the intensity/volume dial that it will not stay in the foreground of my days. Nothing stays the same. When I am in extraordinary pain, eventually the intensity will decline. When I am feeling good, eventually I will be in pain again. The “When?” and the “How Long?” are the unknowns and were scary for me for many years. This is true for anything in life. If we are having rough times with our spouse, eventually things will get a bit better. The when and how long from now are the difficult unknowns. I have to be patient, not add to my pain by getting emotionally upset and anxious, and I have to persevere. Please understand that I don’t do a great job of managing my MS and TN all the time. I cry. Feel weak. Lash out at loved ones, I feel down and get depressed at times. One of many things that keeps me going is that I have hope in that I know my situation will change, even if it’s in a small way. On my part, I have to work at patience, relaxing, ask for help with loving-kindness, and truly have hope in my heart. I have not always been able to do this. The main turning point was November 2011 when I chose to reach out to others more and not live inside my own head and think that what was happening to me was the worse thing in the world. Yes, it sucks. Oh, TN and MS are my enemies at times. I am sometimes jealous of healthy people. However, these emotions make me feel worse because they fill my heart, my soul with darkness. And darkness is heavy. My life is heavy enough with my illnesses, why should I add to it? This is where I have a choice on how to respond (rather than just react) to my MS and TN. I did not have a choice about getting them, but I still have a choice on how I want to be defined by them. But this takes time; it took me many years and I’m still working on it!
***Has there been a time in your life when you felt overwhelmed by situations, life events, or bends in the road that were confronting you. How did you face the situation(s)? (For example: Did you try to find some managing techniques, get help from friends or others, make it an enemy, etc.)***
I would love to hear your own stories and/or comments you have. And if you have any questions – please don’t hesitate to contact me via the CONTACT Page, Facebook, Twitter, or by email at firstname.lastname@example.org
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I’ve enjoyed sharing with you –