Friday, November 25, 2011

On Holidays with Myasthenia.....

For those of you with Myasthenia, you know why I chose this photo. For those of you without, it is to give you a sense of what it feels like to walk in our shoes all day every day. It is like walking against the wind. Perhaps that gives a better perspective as to why we look normal in the morning and by evening everyone around us is telling us to "sit down" and asking "do you need help?" and "are you alright?"

These are all kind questions and we get used to them, however with someone battling the same roller coaster day in and day out it can be overwhelming in large quantities. I was always one to like the spotlight, I used to sing onstage for crowds, I enjoy public speaking...yes I am strange like that and no I don't claim to have the "moves like Jagger." But back to my point, while concern is kind it is not the type of attention I like or am comfortable with.

So this is how yesterday went for me:
6:30AM - 3:00PM - Worked, not too busy but enough to not be boring
4:30PM - ate a fine dinner prepared by my hubby and kids (I helped with the bisquits)
5:30PM - feeling pretty weak but not wanting to let anyone down went to my in-laws with Cindy
6:30PM - started feeling the dreaded full on weakness wave (the fact that I couldn't speak louder than a whisper by 5:00 should have been a clue but I am still hard headed an yes a bit in denial)
7:00PM - asked for a ride this point I couldn't lift either foot off the ground, was full on slurring my speech, and one eye was half open...this is when the barrage of concerned questions came about and also the time I just wanted to crawl into my snail shell and hide.
7:30PM - is good (or the same as it was yesterday)

Which brings me to the next topic I wanted to cover: I have lost the ability to assess myself.

As I have become more ill, I have avoided more outings, I am less social (well in the physical sense, I certainly make up for that on the phone and online) but I used to go out with friends all the time. So I am home and I accept my limitations and do what I can when I can, then I rest and I don't really take stock in how/when I am feeling weak like I did at the beginning of this illness. But the reality is (I realized last night in response to said concerned remarks) I am a wreck every single night. There isn't one day that goes by that I don't have double vision in the evening, lose the ability to speak like myself, lose the ability to lift things heavier than a water bottle and sometimes that too.

I am writing this post because last time I saw my neuro I told him things are going well, they are the same. Well they really aren't if I am honest. I am getting worse, slowly but surely, and I am just sitting here accepting it. Well I tell you what, I am not ready to give up the fight...I still have a chance at remission and gosh darnit I am going to fight for one.

So family and friends, that is what a Holiday is like with Myasthenia


  1. As terrible as i feel for you, I must say it's nice to know somebody feels the way I do. It's so hard to explain to others, doctors, even admit to ourselves that things are slowly getting worse and worse. I think it's because we are so used to adjusting to the minute by minute changes our disease throws at us. The % stronger or weaker that we are asked to describe to our Nuero's is infuriating to me. Better or worse than?... Yesterday, an hour ago, last summer or before I got sick? Hope your feeling well and strong today.

  2. I feel the same way. Its hard to have to explain to family and friends why I can't work out as much as them, walk up and down my 2 flights of stairs all the time, even chase behind my kids without feeling like I have to sit down. I can't even read bedtime stories to my kids without losing breat annd yawning like crazy and then not wanting to talk anymore. No one gets it. Its morning and I'm happy to have found your blog. I'm a mother of 5 girls and I'm just tired of not being able to do the things I used too. Medication won't work for me because per my blood test results the kind that I have would be unresponsive to it.