Sick and Tired of being Tired
Moving Forward Series
Meena Dhanjal Outlaw
Myasthenia Gravis is a Neuromuscular Autoimmune disease that causes a breakdown in communication between nerves and muscles. Thus, leaving the recipient of this condition with progressive weakness and exhaustibility of voluntary muscles. It is an autoimmune attack on acetylcholine receptors at neuromuscular junctions.
Now that I have explained the technical definition, quite simply it leaves me exhausted.
Long ago, people didn’t survive this disease. Now, with research we have treatment.
It was August of 2014 that I was diagnosed with Ocular Myasthenia Gravis, which caused extreme double vision and droopy eyelids.
By October 2014 it had affected my upper body. Had I not already been paralyzed on both legs, I would have experienced weakness there too.
Fourteen years prior to the diagnosis of MG, I sustained a spinal cord injury, which left me a paraplegic.
The MG definitely caused complications to the point where my insurance company has determined my condition as a quadriplegic.
I was unable to lift my arms without them fatiguing out within in a second. My mouth was affected so severely that I could not chew food, as well as, speak.
Most Myasthenics will describe the speech as if they were slurring after being intoxicated.
I didn’t have issues with autonomic dysreflexia, because it affected those with T5 or higher spinal cord injury. Now that my upper body is affected, I have to watch for such symptoms.
It has been almost three years that I have been treated with a combination of plasma exchange, auto–immune suppressant drugs, in addition to an anti rejection transplant drug.
My treating neurologist explained that this combination of drugs and infusion would allow me a better chance in reaching remission.
I believe I was reaching remission just two months ago. Then, I had a urinary tract infection and I relapsed. It was just that easy to relapse.
It took a re-evaluation of my treatment plan to get me back on track. Luckily, the next day, I already had an appointment with my neurologist. If I had not I would have probably had to make my way to the emergency room, as I was close to a Myasthenic crisis.
The anti-rejection transplant drug I was taking was changed. We have a new goal; by summer of next year I will not need to have any more infusions.
Instead, I would just continue to take the prescription medications. This is music to my ears. All the prodding and poking with the constant regimen of medications, infusions can be mentally challenging at times. There is a reason why some cancer patients give up. In fact, many of the drugs used to treat Myasthenia Gravis are used to treat cancer.
Three years is a long time to get used to the condition. However, it is interesting that it has taken me the same amount of time to as my paralysis, to now accept this.
What I cannot get used to though, is the chronic tiredness and limited amount of energy I encounter on a daily basis.
It was Christine Miserandino, who was diagnosed with Lupus in 2003 that created the ‘spoons analogy’. It was Christine’s way of explaining how to quantify the amount of energy she had throughout a given day. Each activity requires a given number of spoons, which could only be replaced as she ‘recharges’ which only occurs after rest.
When I first was diagnosed, I spent most of my time resting after each activity, whether it was brushing my teeth, brushing my hair, having a shower, and driving my car.
Regardless of any condition, when one has children, they still need to eat and require supervision.
I have two children that are still attending school. Therefore, the chores were still endless. In addition, I continued my writing endeavors, volunteerism and tried making time for friends, as well as, family, which became the most challenging task of all. They could not and many still cannot understand just how bad I feel at times.
I can truly say that the spinal cord injury is nothing compared to this.
When the doctor says, “You will probably not walk again and will function from a wheelchair”, I was able to deal with that.
My legs didn’t work? Okay. I will learn to do everything sitting down? Okay. So, I learned everything the physical therapists were teaching me.
It is only after aggressive treatment after being diagnosed with MG, that I am now as close to how I was with just the spinal cord injury.
Doctors still haven’t quite figured out the connection to fatigue and MG, but they do understand it is also very much a part of the condition.
Yet, as tired as I might feel each day, I still dislike pity and never stop pushing myself to accomplish as much as possible. And, if I feel sick of tired of being tired, I think at times, that’s okay too.
As for those that don’t understand, I challenge you to find out, therefore you won’t take it personally that sometimes I just have to go home and rest.
Myasthenia Gravis Foundation of American (MGFA)
Myasthenia Gravis Houston Support Group
Trini Mendenhall Community Center,
1414 Wirt Road,
Houston, Texas 77055
Facebook: Myasthenia Gravis Support Group Houston.
Website: www. Mghoustontx.org
Central Texas Support Group
Meets in Austin, Texas
North Texas Support Group
Meets in Greater Dallas
Meets in San Antonio
Corpus Christi, Texas