Friday, April 1, 2016

Climbing My Way Back

Hello out there. Sorry for the silence here on the blog the last few weeks. I’m working my way back to the world and the blog. It’s a slow climb but I’m making progress.

A few weeks ago, I did something really really stupid. I’m keenly aware of my limitations and I spend so much time managing symptoms and staying within those limitations, but I suppose I needed a reminder that they are still there. I tried to play with one of my nephews. It was just a few minutes of unbridled fun, but it was far more than my body could handle unfortunately. I often feel sad that I can’t participate in the fun when my nephews come over and I worry that they’ll remember me as a lump on the couch, but I should’ve been smarter. I guess all I can do is learn from the mistake and just enjoy watching my husband play with nerf guns with them. That kind of fun is just not feasible for me anymore.


I’ve had to spend much of the last few weeks in bed. I had to stop exercising and my daily walks so I’ve lost much of the strength I had gained. It took me about a week to recover from my mistake but then a severe bout of insomnia and depression took over. I’ve forgotten what it feels like to sleep through the night. It’s been weeks now. Sometimes I get stuck in these insomnia loops that I can't break out of. It's been awhile since I have had one this bad. The irony about insomnia is you think that the more your exhaustion builds, the more likely you'll finally sleep. Nope! It doesn't work that way. No matter how nicely I ask my brain to sleep, it lets me know that it is the boss and does what it wants. 

So this is why I haven’t been posting. I even had to take some time away from all social media for awhile too so I could just focus on surviving. The last three weeks have been a bit of a veritable shitstorm, but I’m trying to remain undaunted. I’ve had rough patches before, even really bad ones like this. I always eventually climb out. It was almost three weeks since I left the house, and I told husband I started to feel like one of those animals that lives in a dark cave for so many thousands of years it eventually loses its pigmentation and sight.

Day 15 Selfie 

The worst part about all of this is I had to miss multiple appointments and the important test I was supposed to do at Stanford last Monday. This test was going to be the catalyst to finally starting the standard immunotherapy used for Myasthenia treatment. At least, that’s what my doctor said. I’ve been waiting for years to finally start that treatment now. It didn’t help my terrible record of showing up to appointments and tests so far this year.

I am continuing to decline overall but I also keep screwing up and setting myself back. I’m sure many of you out there know this cycle: you start to feel a little better, you try to do too much, you end up immobile and back at the beginning. I keep doing this so I’m trying to finally learn from my mistakes and make some changes. Old habits die hard though.

I’ve stopped trying to use my stationary bike. I used to have some success using it and it does help my stamina but the last few times I used it, even when I was having a good day, I ended immobile for a few days. When I’m able to exercise successfully again, I’m going to stick to yoga and my short half block walks with my trekking poles. I was having some success with that. If exercise is only setting you back, then it’s counter-productive. This is what I’m finally learning. Exercise has to enable functionality, not the reverse.

I need to stop trying to do too much on days before appointments. I need to really take the day before to rest so I can show up.

If I do have a moment where the clouds part, the sun breaks through, and I'm feeling pretty good for just a brief moment, I need to not try to do everything I usually can't do to capitalize on that moment. I'm trying to remember that those moments do happen occasionally but they are actually a lie. No matter how good I feel in that moment, my limitations are still the same. Reminding myself of this will hopefully help me just appreciate those moments instead of pushing myself over the edge each time. 

One of my greatest fears in life is making the same mistakes over and over. So I’m really trying to stop asking too much from my body every day and hope we can live in a more peaceful communion.

The last few weeks have been brutal but there have been some bright spots. I try to sit in our little yard when I can. Some days I can’t but when I can I sit out there a few minutes at a time so I don’t crash too hard. It lifts my spirits. 

One benefit of being completely immobilized is I was able to finish two books and I re-watched multiple seasons of Downton Abbey. I also actually made it outside very briefly yesterday. Husband took me to the thrift store around the corner from our house and I got some beautiful framed vintage art. These were absolutely worth pushing myself to finally leave the house again.

My brain is mushy from such little sleep for weeks so this post is a placeholder until I can get some functionality back on all fronts. I have a sponsored post from SaltSticks coming hopefully next week so stay tuned for that. I love their product. I have some other posts I was working on and a few changes in mind for the blog. 

I can feel better days on the horizon.

I hope all of you are doing well out there. 


  1. Hi Stefanie, sorry to read that you have been having a rough time.

    You are not alone with insomnia and the way you feel about playing with your nephews etc. I totally understand the insomnia thing and have the same problem with wanting to do stuff (that the body shouldn't do) and wanting to do it so badly, that I impulsively do it and immediately regret it. (The worst one was 'breaking out' of hospital for a concert that I had been looking forward to for weeks and when I got back to the hospital bed that evening, it was pretty scary at how bad the body reacted.) When relatively well, it is so hard to restrain oneself from getting excited and trying to do all those things that had been impossible not that long ago.

    Do you think the change of seasons plays a part too? I am coming out of a week being bedridden and was getting the insomnia thing after only 5 days so I can't imagine how bad it must be for you after 3 weeks. After reading your post today, I can see how the insomnia is 'a thing' with being stuck in bed for extended periods.

    I am so sorry that you have lost all the strength you had gained. In such situations, I boost my spirits by saying, "You've made it before, you can make it again" but it is never quite enough to dispel the worry that the latest setback might be the one that ends with some kind of damage that prevents me from getting quite back up to where I was before. Does that ramble make sense? Do you ever feel that?

    What I have learned about exercise is not to 'push' it. Forget the "no pain no gain" motto. This is really hard for someone who liked the physical challenges of sport. The motto was modified to "Don't push it, just nudge it" but these days I have learned that "just doing" is sufficient for progress and any form of exercise that involves 'effort' (or 'pushing' the envelope) will end in tears.

    What you are going through is not easy and I feel for you because I have found myself in the 'crash/burn/overdone it' cycle too many times as well. Like anything, it takes practice but it would be nice if the boundaries stayed the same occasionally instead of changing all the time! Take care and good luck.
    You can regain your fitness. Persistence and patience.Hugs.

    1. Thanks for your kind words Jodie! You always boost my spirits. Summer is definitely the hardest time of year for me but it is only now starting to get warm. Do the seasons affect you? I'm going to remember "don't push it. Just nudge it"!

    2. Yes, Stefanie, the seasons do affect me although I haven't been able to identify specific triggers. Summer is difficult - it gets very hot and my body has trouble adjusting to the changes between outdoor heat, car oven heat, public places' air con which is usually set too cold etc. It doesn't cope with the heat as it is. It seems to mess up my blood volumes and I get dehydrated very easily. At least in winter, I can keep the heating low and rug up so that there isn't such a drastic variation in temperatures when going from indoors to out and vice versa etc. I love autumn. Daylight savings messes me up too - since getting ill, my body clock likes a set schedule and it takes over a week to settle into the new routine.

  2. Yes. I understand all this. Especially the part about your nephew. Mine are 4 and 6 now, and I can barely play with them, which breaks my heart. Plus they're 8 hours away, so I can't even get to them anymore. Somehow we'll get through this. Stay strong. xoxo

    1. Thanks April! It's just one more thing to grieve the loss of unfortunately. I do get a lot of joy watching my husband play with our nephews though. I'm hoping when they get older I can do sitting activities with them. Sending you love!


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