I Hate It, I Hate It, I Hate It!

By Sally Farrier

2 min read

I'm a bit frustrated right now. I'm hoping some of you can help me! I'm going to give some examples of why I hate myasthenia gravis (MG).

Trying to keep a schedule

I'm a pretty scheduled person. Even when I was a stay-at-home mom, I kept schedule of what to do and when. Each morning, along with a cup of coffee, I'd make a list with time frames of when I was going to do what. Even when I was employed full-time, I would get up each morning and make the after-work list.

I guess I kind of get that from my mom. I know for a fact, to this day, Mondays are laundry day; Saturday mornings always for dusting and cleaning the bathrooms. I know because those were my jobs growing up! Vacuuming and sweeping took place every afternoon. But, unless my MG is well controlled or in a remission, there's really no way to set a regular schedule right now. It is challenging to get anything done on time with MG.

I'm not lazy

Looking back, I'm sure I made those lists because I had undiagnosed myasthenia gravis, all my life. That was my way of making sure I got things accomplished and didn't convince myself I was just being lazy. I had heard that from others all my life. I knew it wasn't true!

If I didn't get something done, I would always make sure it was on the priority list for the next day.

My home has never been spectacularly clean, but I can guarantee that at least twice every year I would clean, every wall and ceiling. Every nook and cranny was scrubbed clean, even with life as a "soccer mom" and working full-time.

Raising kids and MG

I always had to chuckle when my oldest son would proudly introduce me saying I taught him how to cook, clean, drive, fish, hunt, and sew! Then ended it with ... "well, pretty much everything I know how to do, Mom taught me!" (I have 3 kids, they all learn the same stuff.)

Funny ... I now realize the basics things my kids learned, like cooking and cleaning, stemmed from my lack of ability to physically do all that stuff myself. I knew when my kids were having to help me get dressed, something was wrong!

I needed naps, the kids didn't. I just didn't know I had MG. I've always been able to go for a while. Then I needed stop to rest. For my kids this was normal.

My reality now

Now I don't make lists anymore. I mostly think about things I want to accomplish. Although, in the last week, I was actually able to drive on my own 2 times. It was not far, but for me, it's been almost 2 years of not driving.

I also got some old carpet off 5 steps, cleaned them up, and got them ready to redo. I added stick-on curtain rod holders and put curtains up. Although, half the curtains have now fallen down. It never ends for me!

I was doing good enough. I even applied for a part-time job! Thrilling ... especially when I got a call about the possibility.

But now, again, all of my energy is gone. I'm not sure when I'm going to get it back. Can I have a job again, please? This so very frustrating! Out of curiosity, what is life like not having MG? I truly want to know!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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P.clark22 Member
I have always been a doer With five children and a full time job I was busy to say the least Now I get maybe 2 hours a day for housekeeping or shopping and I am done in I am retired now but I should have more energy but I don’t If I move fast often I fall Dropping things is a daily thing now I also have arthritis so I have hip an knee pain What can anyone suggest to control pain Pain that can easily climb to an 8 out of 10 Does anyone have any suggestions as there is so much I am told I can’t take as it interferes with my medications 
1. Sally Farrier Moderator & Contributor
 <inline-mention username="P.clark22" user-id="6145481"/> 5 kids that did keep you moving!! I am not quite old enough for retirement (60 years old), but I hear you about should have more energy and dropping things & falling!! About 2 good hours a day for me also.... Maybe.... Arthritis on top of MG, I am sorry to hear that!! I too have arthritis. They don't play well together in my body!! I have used many different things for pain that has worked. Anti-depressants often prescribed for just pain like we with MG have. I have taken generic Celebrex (helps the arthritic pain.) The old standby of Ibuprofen & Tylenol. I have used the eliminate 6 diet for arthritic pain. For me I have also found that massages & just relaxing to "massage type music" helps. Hoping you can find some relief Soon!! Hugs to you!! Sally Farrier...Myasthenia-Gravis.com (team member).
Bonnie Member
Sally Your post is enlightening. When we are faced with these challenges, we have a choose to wallow in self pity or find the best way to cope. You are an inspiration because you have found your way and for so many years. I can only describe life before MG as something I took for granted. Jumping, running upstairs or even climbing a ladder. Talking and laughing without having to stop to rest. Simple tasks that others can do effortlessly. “They” have no idea what it is like not to hold their head up, to have double vision and not able to drive With meds I feel so much better. But I can’t walk far without rest. I use a walker and wheelchair. I feel lucky I can do that much. Thank you for being part of this community where as you said we all help each other. Hugs to you, Sally. I wish you well 
1. Sally Farrier Moderator & Contributor
 <inline-mention username="Bonnie" user-id="4267629"/> Thank you so much for your encouragement!! Hugs back & warm wishes to you!! Sally Farrier...Myasthenia-Gravis.com (team member).
Juliana Texley Moderator & Contributor
Many of your experiences are much like my husband's. He used to be able to accomplish tons. Now he tries to put a couple things on his "agenda" for the day, and that might even not happen. His "schedule" might be a single bullet--and yesterday, even that didn't happen. There is a meaning of "fatigue" that is much different than others would understand. Tuesday we worked together to change lightbulbs! Still, I'd encourage everyone in the community to be positive about what can be accomplished--and not feel like a failure when it doesn't happen. Break jobs into smaller bits. This week we encountered two new home improvement jobs that would have been business as usual five years ago. I asked him: Which one is possible, which one should we hire? No guilt, just logic. The danger of trying too much is risk of an accident or a flare. It is just not worth it. The value of trying a little is a real sense of accomplishment and a step toward normalcy. Wish that for all of you. (Juliana, team member).
1. Sally Farrier Moderator & Contributor
 <inline-mention username="Juliana Texley" user-id="4153227"/> Did you have a good time changing light bulbs together?? I hope you did!! Yes, a positive outlook is what everyone should strive for MG or not!! Somedays just getting up is a real accomplishment. That is why I do my daily "agenda", not to feel bad if nothing gets done. But at least I had a plan that might get done... I learned a long time ago that "Normal" is only a setting on a dryer!! There is in reality no "Normal "in life, for anyone!! What we call "normal" is a facade to make us feel more at ease and in control. When our "normal" gets shaken it takes longer to get our footing back on steady ground. We also have home improvement jobs that need done. With all of my health issues and my husband with his. It is going to be interesting!! (My son & his friend that is a contractor, are going to come help!!) Otherwise, we would need to look for someone to hire. Because we don't want any accidents or flares for either of us. From the day we first moved in together the rule has been not to tell the other what to do /clean/fix. (Kindly asking is different) We are both adults and can figure it out. If one/both of us can't or does not want to.... do/clean/fix it, then hire someone who can. Like you said.... No guilt, just logic. It has also saved a lot of needless stress. Best wishes to both of you, Juliana!! Sally Farrier...Myasthnia-Gravis.com (team member).
Bonnie Member
Oh, Sally. I empathize, as many here must as well. I took pride in the fact that I mowed the lawn, I enjoyed painting and small house renovations, and I helped my husband haul wood inside every winter. He was a great cook and we shared many chores. I was strong and healthy. We hiked, we had bicycles and loved the outdoors. I began to have symptoms two years before being diagnosed. I ignored the inconvenience of feeling tired, losing balance, being clumsy, even difficulty chewing. When I had breathing problems, I went to the doctor. Once diagnosed, I realized all of those symptoms were part of MG. I HATED not being in complete control. I HATED not being strong and not having the endurance I once had. I understand how devastating this is. In the midst of all of this, my husband suddenly died. Of course, putting things into perspective was now very complicated. I HATED being alive and my world as I knew it ended. I have two grown children who pulled me out of the rabbit hole. I fought against everything until I learned that acceptance was what I had to do. Now If I go on a long trip, I need a wheelchair. Sometimes I need a walker. I can't say I like it, but I am happy that I can breathe. My new life is not what I had ever dreamed it would be, but I keep fighting to enjoy little pieces of my miserable life. Grief almost ruined me. That is a part of me now that can never go away. MG is also a part of my life that will not just vanish. I have learned to accept help when I need it and I still strive to be independent. Find your acceptance and never give up.
1. Juliana Texley Moderator & Contributor
 <inline-mention username="Bonnie" user-id="4267629"/> The trick is to take joy in small steps. I once wrote a comment based on a children's book: "I'm in charge of celebrations." So are you! (Juliana, teammember) 
2. Sally Farrier Moderator & Contributor
 <inline-mention username="Bonnie" user-id="4267629"/> I am so sorry to hear about your Husband!! Hug to you!! I found my acceptance years ago even before being diagnosed. I am almost 3 years in of a flare from a 10-year remission. My symptoms started when I was 10 and I didn't get diagnosed until I was 58 almost 59. My kids grew up with Mom not being able to do much all the time. But after a remission for that long with no diagnosis, so no medication. It is like starting over but now with a DX and medications. And now knowing it is not really ever going away. That realization is a comfort and hard place to be. I have used a walker, neck braces, wheelchair, shower chairs & adult diapers on and off for almost 30 years. Like you and your husband... my husband & I share many (all) chores, including wood cutting (we have an outdoor wood stove to heat our house). We move here in the middle of the remission. Like you my life Is not what I had ever dreamed. But it's wonderful at the same time. Sometimes that fight to just enjoy pieces for me can get overwhelming. In the last 52 years my life has changed many, many times all because of MG. That is why I ask "Out of curiosity, what is life, like not having MG? I truly want to know!" My part-time "job" I got that I was thinking I was going to have to give up (when I wrote the article) is going great!! I am going on 2 months now with tons of support from employer, co-worker & costumers. Lol... found out that Most of my co-worker also have chronic health conditions, most just as debilitating as MG in their own ways. So, we all help each other!! Hugs to you Bonnie & don't ever give up!! Sally Farrier... Myasthenia <a href='https://Gravis.com' target='_blank' rel='noopener noreferrer ugc'>Gravis.com</a> (team member).