DECEMBER UPDATE
Generally I have been doing fine overall, though there are days when the fatigue kicks in and I work at 25-50 percent of my capacity because that is just about all I can give. I try to avoid impatience and won't allow myself to be sad about this. I just do what I can and forge ahead. It means I'm always a little behind on tasks, but that will just have to be the way it is. I'm going with the "ask for forgiveness later" approach. I pretty much store up my brain "power" for my nights at work and let it fall apart when I'm not at the clinic. Luckily, I've only had one night where I really was so tired I caught myself in microsleeps. By and large, though, I'm on top of it.
Today I'm feeling very instructive and want to post about what it means for many to have MS, using myself as an example. Please read through as it's very likely you will learn something surprising about this disease.It's a fascinating science experiment to track how your brain functions following periods of busyness (physical and/or mental and/or emotional). Here's what happens to me, on a physiological basis:
- My frontal lobe, occipital lobe and subcortical brain (specifically the hypothalamus) are the sites of my lesions. These are regions of scar tissue where my immune system attacked my central nervous system, leaving behind individual "potholes" on the surface of my nerves (the myelin sheath) as well as craters in my gray and/or white matter).
The frontal lobe is in charge of executive functions, i.e.: cognitive processes such as recognizing consequences, making choices, monitoring social behavior, differentiation, long-term memory, verbal fluency, reasoning, task flexibility, and problem solving, planning, execution of ideas.
The occipital lobe is all about vision and color perception.
The hypothalamus controls basic "drive" functions, including eating, drinking, sex, temperature control, sleep, aggression, plus it releases hormones into the body to serve distant systems. - Frontal lobe: When I overdo something, I notice that my memory fails in terms of word or name recall. I definitely fumble with my speech. I also struggle to make decisions and feel as if I have ADD. When I'm especially taxed, my brain is still there for me, but it's at a much slower pace. Here's why: when parts of the brain have a lot of demands that the nerves can't maintain, other nerves cross over from other parts of the brain to compensate (thank you, corpus collosum). Which is really cool! But it comes at a cost. Your brain is fueled by glucose, and when other nerve clusters have to step in to compensate, they use up way more glucose than the normal nerves would use. This results in fatigue because everything slows down (imagine an excruciatingly slow computer or one which freezes up in the middle of processing). It's not the same as muscular "I just chopped a cord of wood" fatigue, though emotional and physical demands can also lead to this "cognitive fog," too.
- Occipital lobe: When I overdo something, I eventually begin to feel like I need reading glasses, and my prescription lenses for distance sight aren't strong enough. When I get my eyes checked, everything is fine otherwise. It's not aging, it's the MS.
- Hypothalamus: When I overdo something, I feel it mostly in being overheated all the time, as my thermostat is not working properly, so I'm hot all the time anyway... and when I overdo it, it gets even worse. I was probably the only person during our recent cold snap who drove with the AC on high in the car to cool down. The overheating is a problem with multiple sclerosis, as it is another cause for needing to slow down... inflammation leads to less efficient performance and things like disabling migraines.
In example, I was recently asked to help with organizing the volunteers for a dance studio event (this is someone who knows about my diagnosis), and when I told them No, you could see that they couldn't understand why I couldn't help out. Are you kidding? That just sounds like a living Hell to me right now. LOL. It's like asking a person with a broken leg to help somebody with packing and moving. I guess one could attempt it, but there would be much higher odds of failure.
So really the challenges are not even with myself but with others who may not understand the amount of energy and effort involved in just moving normally through the day. I try to not take it personally when those around me are disappointed (or even judgmental or upset) when I tell them No... they don't see my challenges and/or forget how they can limit me, and I've been such an active person in the past it seems impossible that I should have any barriers now, especially since I don't have the physical limitations with sight and/or mobility that usually accompany MS.
But take a look at its most common symptoms (from the MS Society website):
- Fatigue**
- Numbness**
- Walking (Gait), Balance, & Coordination Problems
- *Bladder Dysfunction**
- Bowel Dysfunction**
- Vision Problems**
- Dizziness and Vertigo*
- Sexual DysfunctionPain**
- Cognitive Dysfunction**
- Emotional Changes
- Depression
- Spasticity* **
- Speech Disorders*/**
- Swallowing Problems*
- Headache**
- Hearing Loss
- Seizures*
- Tremor*/**
- Respiration / Breathing Problems*
- Itching **
I have 12 out of 21 of these symptoms, but only 2 of them are apparent to others. I also have friends with MS who, were you to encounter them in the moment, wouldn't show that they were in the middle of an MS attack. And yet, they are, and they are doing everything they can to push through. It's like holding on to a rope with sweaty hands. You are constantly adjusting your grip, afraid of what will happen if you lose contact.
So I guess the point is this: though most people think of MS as a disabling disease leading to being bedridden or in a wheelchair or using a cane and/or severe vision loss/blindness, the fact is that most of us with MS don't have these symptoms, but a multitude of other symptoms which mess with our ability to lead normal lives.
It's tough for many, because we don't live in world which defaults to compassion when it comes to reacting to others' behavior. I feel luckier than most because I have loving and supportive people in my life who are understanding and accept that if I say I'm not 100%, I mean it. And my MS doesn't impact me at work (and my boss doesn't know, anyway), for which I'm eternally grateful.
But there are those with MS who are told they are faking it, that they are mentally ill, that they just need to buck up and stop whining/complaining. They are told to cure themselves with some sort of Chinese herb or to fix it with the Paleo diet or to have expensive, non-FDA approved treatments in Mexico or Switzerland.
The truth is there is no cure for MS, there is no supplement or diet which will reverse MS, and the cost of having MS can really take its toll on those with limited insurance and support systems (the price of a typical MS disease modifying therapy is well over $50k annually and that's not counting all the MRIs, the spinal tap, the medications needed to relieve relapses or offset symptoms or side effects of the medications).
I write this longish post for those people because, truly, MS is a curse, and they don't have any way to get relief without the love ans support and compassion of the people in their lives, whether they are friends or family or perfect strangers. I hope, as you set aside time to think about 2014 resolutions, you add awareness and compassion for invisible illnesses to your list. Not that you aren't already practicing these, as you are on this list of mine precisely because you are ... but it's never a bad calling to polish those skills and/or share what you know with others to help spread the idea that invisible illnesses are real and confounding to those around you who may not know better.
Okay, 'nuff said! I wish you all a peaceful and healthy holiday season and thank every soul out there who has shown me support and love these last 6 months. It would be tenfold more difficult to go through this experience of learning to live with MS had it not been for all y'all in my life. Hugs!
