"MG is an autoimmune neuromuscular disease that affects voluntary muscles. Myasthenia gravis means "grave muscle weakness." Symptoms include weakness in muscles that control eye movements and eyelids, chewing, swallowing, coughing, facial expressions, arm and leg movements, and breathing."
"Caring for another person with a health condition is challenging, to say the least. In the case of the myasthenic patient, the level of care varies from day to day, sometimes minute to minute."
Together over the last 8 years of our life together, Eileen and I have learned that little is known publicly about this rare autoimmune neuromuscular disease. That, coupled with our experiences with an uninformed public and with sometimes just as equally uninformed "professional" healthcare workers, has stirred a passion within us to inform the uninformed. With the exception of the handful of friends and family members who have witnessed Eileen losing muscle function firsthand, few people truly understand what we go through. The looks, the comments, the judgement. At first it stings, but then you learn to be stronger. You learn to combat the ignorance, you try to be tolerant of the judgemental. You learn that your wife with MG wants to tattoo "I HAVE MYASTHENIA GRAVIS" on her forehead sometimes.
As a caregiver for a myasthenic, I can attest to the fact that living with MG is a roller coaster ride at times. The fact that the disease causes "fluctuating" muscle weakness is one of the factors that makes life with MG so unpredictable. One moment, an MG patient may appear "normal," while the very next moment may find them incapacitated by the loss of muscle function. For example, you may see them riding a bicycle one day and then using a mobility scooter at the grocery store the next. The "ups and downs" of the disease can cause as much confusion for the uninformed onlooker as it does for the patient. "I thought she was well, I just saw her yesterday and she was fine." "I thought I was well, I just rode my bicycle yesterday and I was fine."
Now, for the caregiver this fluctuation can be just as upsetting to them as it is to the myasthenic patient. Upsetting in the fact that they have to watch this disease have its way with their loved one, upsetting in the fact that they (the caregiver) are unable to hold a steady job outside of the home due to the unpredictable nature of the disease, upsetting in the fact that the Mystery Guest (MG) is not understood among friends and family... As a caregiver to a myasthenic I am more than happy to explain the disease to those who know little of it. I am, after eight years, a de facto expert on the disease as there is no better teacher than first-hand experience. I am a spouse , a parent and a caregiver. I have not held a steady job in over 8 years. When I do work, it is not a typically in some disposable revolving-door food service industry job that I know going into that I will have to quit and return home where I am needed. Even a part-time job 4 or 5 days a week for five hours a day is too much for me to be gone sometimes. Because of this, I have been called lazy but nothing could be further from the truth.
I work full-time in a very stressfull working environment and have to be a full-time caregiver at the same time and I think my Boss is getting fed up with me and my situation at home. I always sometimes have to leave work when am needed at home. I do my best to keep up with everything and I do my best to keep up with household chores (laundry, cleaning, etc), bills and finances, medical insurance, DHHR, doctor's appointments, and phone calls at home too when off work. All while also preparing meals, taking care of the dogs, keeping up with Everything and being the best spouse and parent I can be. It sometimes becomes overwhelming. It becomes so stressfull. Sometimes, It get so worse, that I am forced to take unpaid leave, which not good for medical and living expenses at all. Caregiver burnout becomes real when there is no respite from family and friends. Never in a million years would I have guessed that I would end up a full-time spousal caregiver. We are financially strained and my spouse need so many assistance devices and therapy sessions the expenses and doctors bills. Not forgetting transportation cost medicine it’s just a never ending story stressfull for both of us. We need your help! I need your help! My family needs your help! Help me to become a permanent caregiver to my sick spouse and our 5 and 10 year old daughters plz. 1 dollar donations welcome. Than