Monday, November 20, 2017

Some Thoughts

I have some thoughts I need to get out and I need a space to talk. 

I'm having a hard time getting myself to keep going right now. It's been over 2 weeks since my trip to the UC Davis Myasthenia Gravis Clinic but I am still trying to recover. I'm just so tired. So completely worn down by having to fight so hard all the time. The doctor I saw at Davis told me the treatment I've been on and state I've been in the last few years is just "barely keeping you out of the hospital all of time." When she said that my whole body sighed in relief. It isn't my fault. I'm not a failure. I've worked so hard to try to improve and get my life back but I haven't been able to make any significant strides toward improvement, no matter how hard I've tried. It's not my fault. It's not my fault.

I wish I could communicate what's it's like to always live precariously on the edge, to always have to fight so hard just to maintain. I can't though, not right now at least. 

I'm so tired. I just want my freedom back, to not have to look at the clock constantly because I have to rest every hour. I want to be able to move, to make plans, to play music, to see friends. I want to have a life again. 

We go back to Davis in a few weeks and that appointment will be much harder than the last one because I have to do an exhausting test in the morning then multiple hours of an appointment after. But my doctor is going to create a treatment plan with this appointment. There's hope. I'll finally have a treatment plan from a Myasthenia expert who can make sense of this magical medical mystery body. There's hope.

But right now I'm tired and worn down. I'm listening to Harry Potter and rewatching The West Wing, two things I always turn to when I need comfort. I'm angry, I'm frustrated, I'm disappointed, I'm happy, I'm sad, I'm laughing, I'm crying. I'm too tired to make sense of it so I'm just going with it. Push to the other side until I can't push anymore.

So I'm in bed eating my lunch, trying to hold my body up, listening to my cat snore, and watching the bluejay eat the bird food my husband put out outside my window. If I live in these moments, I'm ok. So right now, I'm ok.


  1. I'm very impressed that you wrote this pots. Bravo!

    I also have times when I find it very difficult to keep going. So I get this. And it is really validating to have doctors let us know that they see how sick we are, right?

    It's so crazy how often we blame ourselves for not being healthy. For me, I think this comes from years and years of doctors suggesting that my illness actually was my own fault. And family members, as well, sadly. That damage is really hard to undo.

    The other day I was reading an article on resilient people. I realized partway through that I was thinking of resilient people as being people other than me. When I asked myself why this is, I realized that it's because I'm still sick. Isn't that crazy? I don't think of myself as resilient because I have somehow failed to get better. When, in reality, it's actually not getting better and somehow managing to survive this that is what makes me resilient.

    I also realized that I wasn't thinking of myself as resilient because I am so often sad. Finally, I had to stop and think to myself again, "April, you are still here. That in itself is evidence that you are resilient."

    BTW, when I think of people who are resilient, you are the first to come to my mind.

    You look very sad in this photo. I really hope this new doctor makes a difference for you.

    Much Love,



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  2. I feel for you Stefanie. It's a long road.

    "It's not your fault." It's not our faults. Thanks for the important reminder. When I get a bit of a remittance from my symptoms, I try to stretch it as much as possible, often against my own good advice...but to get out and live after being confined for so long is intoxicating. I get carried away and get 'snapped' back sharply and painfully to the fact that there is a disease process. Even if I feel it on the inside, not being able to always see it on the outside plays with my own head - it is so tempting to pretend there is no illness in that moment - so I am not surprised that other people don't 'get' the invisible illness thing but the least they can do is accept and respect our truths.

    I am guilty of wanting to 'push' things. I need to be reminded that it is okay to not push. To just be. It is so hard when your brain wants to do so many things. I can only imagine your frustration and boredom. I try hard to reduce 'push' to 'nudge' when I want to do things I know I oughtn't. Where that boundary line is, that's the difficult part because it is always moving and sometimes one just wants to push to find out where the line is today.

    I am so sad that your 'line' is so fine right now. You are doing the right thing by 'just being' and living in each moment. It is interesting that you have the same strategy as me for managing the difficult days "right now, I'm ok". Wishing you small joys in these things.

    I'm sorry that you have been struggling so hard for so long.

    May your upcoming tests and appointments go well and not set you back too far. Wishing for useful results for you so you can make better progress. Hang in there! x

  3. It's not your fault! Just thought I'd say that again. I have to tell myself the same thing a thousand times a day and I still can't understand it.

    I'm sorry you're going through all this. I won't offer you any stupid platitudes. But I am glad you're feeding the birds as I know that helps me a lot, and a cat's snore can be almost as soothing as its purr.

  4. I knew you, and I know you. You always did your best back then, and you're doing your best right now. That's who you are.

  5. Sounds like you and my daughter have much in common. Dysautonomia and the list goes on. She had to quit her job recently because she just could do it anymore. Tired of being tired. Hang in there.

  6. You have poured it all and did well, its therapeutic and perfectly all right to vent it out about your pains, struggles and achievements. Please do not dread your next appointment, just mark it as a challenge and reward yourself when you are back after successfully facing all the tests.

  7. I came here from your post on the mighty about leading double lives. As I lay in bed right now trying to breathe and cope after trying to pretend to my kids and husband that I'm ok , and looking out my window by the bed looking at the cardinal babies who are learning to get food from the feeder that MY hubby put outside for me ( my hubby is my hero just like in the article yiu said your hubby was yours ) all my brain can think about is the fact that it's coming soon - I've been getting worse the past couple of months and cold and flu season is here which means I'll be sick 24/7 with random things like scarlet fever or labyrinthitis and pneumonia- always pneumonia- I know that the point where thr jig will be up and I won't be alone to pretend anymore is coming. The thought of tryong to fight a cold right now exhausts me - there's no way I can fight pneumonia or bronchitis or staph and be able to try and carry on another life as someone who everyone knows has a bunch of health stuff wrong with her but she still does stuff like run errands and go get coffee with a friend etc..... that- part of me will be over and the part of me that lays in bed to exhausted to even breathe sometimes so she just passes out for a bit..... that part of going ti take over and will be the whole me. I think about it every night before i fall asleep.... what else can I hurry and push thru and get done before the "s.h.t.f." as I call it. I think about the fact that my sweet hubby falls asleep on thr couch each night about 10 minutes after he finally gets a chance to sit down ands watch some TV or Netflix. That's my fault because I'm not doing everything i should be. He has his job and I take pride in mine - or I used too. My house looks like an episode of hoarders right now and I'm considering tying one of those 5 hour energy drinks just so i can do a few dishes. My kids are teenagers now and theyfe had a sick mommy for 7 years now. They're so independent they could all live alone ands be just fine.... ..even my 14 yr old who can cook better full meals and dessert, better than me and my hubby combined. I want to write for them and gather pictures and memories, leave a legacy before im completely stuck in bed. The guilt is worse than any pain ive ever endured ands i have twi if thr most painful conditions in the world according to doctors.... that pain feels like a stubbed toe compared to the guilt. The article you wrote was so incredibly perfect as to what ive been going thru and its given me a tiny inkling of hope that maybe one day I will be able to just accept it and maybe even stop stressing myself out over everything that I can just hang out with my kids here in bed and watch movies and give advice etc.. maybe one day I'll be able to let go of the part of me that pretends to be well. Thank you so much for writing that article it has meant so very much to me.
    - jl

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