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.

Sigh.

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. 

Authenticity

Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, and maybe sometimes drawing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that is happening around me. I want to make my experience useful for others on this blog, but I am still figuring this one out. I know others who are ill or disabled or face other challenges must struggle with living authentically. This is a strange ride indeed.

I have realized that I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bed-ridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else. 

I’ve been pretending to be one of them—living among the well who talk about traveling, doing yard work, or going places after work. Pretend to not be on an endless cycle of suffering and needing to go to the hospital. Pretend to not have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach. 

But as I have been getting progressively worse this year, I have maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the will power to keep up the charade. 

This is a good thing because now I can try to live a more authentic life. I have been lying to everyone and to myself for a long time—lying about what I am really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. Bullshitting is not really my deal. But I can put on a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough that maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s ok. I still use my polite words, “please” and “thank you.” I'm grateful for the friends and family who have shown their true colors and stood by me and for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means doing very little driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family, myself about what I am able to do moment to moment. I am going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I'll use my wheelchair when I should. I'll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means that I no longer care so much what others think, and that is incredibly freeing. I can deal with the stares when I use my walker. I can now pluck up the courage to say “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast and I’m going to stop fighting it so hard. It means suffering in silence less and maybe becoming in tune with the world around me once again.The future is very uncertain but I'm getting more comfortable with that. I am gaining a lot of life XP in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I am hard core. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids, salt, and chocolate close by.

How do others live authentically despite adversity?

The Long Haul

This post is filled with some brutal honesty and thoughts that have been going through my head for some time now, and I want to be authentic and post it. I think often about what I wish I would have known when this thing started a few years ago. There are many, but most of all I wish someone would have told me that this would be a long haul, a battle without an end. I was completely ill-prepared for the endless questions, suffering, progression of symptoms, testing, appointments, grief, and slowly but surely losing my ability to do the things I love. I wasn’t prepared for the stamina required to fight so hard.

Since this started in early 2011, I have always had this thought running through my head: “It will get better. My doctors will figure it out, I’ll get better treatment, and then I can get back to my life.” When I got ill and left school, I expected to go to a few appointments, get some answers, and move on. I had no idea what a behemoth Western medicine is, a convoluted matrix where the patient must coordinate his/her own care and grasp for anything meaningful that appears. I had no sense of the excessive amount of time from onset of symptoms to diagnosis and treatment. No idea how much energy I would need to read through piles of bloodwork and notes from doctors to find anything tangible, figure out which appointment and test is next, which doctor to add to the perennial, growing list of specialists, research to see what other patients are doing. Baby steps and waiting. The endless, soul-sucking waiting that never ever ends. I had no idea. 

I discussed stamina in another post and it’s something that I have been thinking a lot about this year, particularly because my health has taken a sharp left turn and I’m back on the long road to diagnosis again, rapidly losing my mobility. I’ve been thinking about how much I just want a day off. One day where I don’t have to fight so hard to do all the right things: take all the medication and vitamins at the right time, exercise, drink enough fluids, get enough salt, rest but push myself just enough, get enough sleep, eat the right things, go to all the appointments and tests and be willing to do whatever they say, try to have a life. Work so hard all the time, yet continue to go downhill. But I work hard every day because I need to know that I am doing everything in my power to try to have some semblance of quality of life. I like to be in control and it gives me—to some extent—a feeling that I am a participant in my own health. 

When I heard the news recently that Robin Williams had been diagnosed with Parkinson’s disease before he committed suicide, I felt so much compassion for him.  I don’t know what it is to battle addiction, but I have dealt with depression my whole life and chronic illness will take you to even darker corners of your mind. On the worst days, the thoughts that run through my head are unmentionable. When I look into the future right now, I don’t see the horizon. I see the edge of a cliff. I wonder if that’s what he saw too. Chronic illness and depression go hand in hand, and depression can magnify illness. The real battle is not the illness itself; it’s keeping a stranglehold on hope.

Yet, the future is not pre-determined, and many times I believe we think that when the worst happens we won’t be able to deal with it. The human body and mind are designed to survive and thrive and people can amaze themselves with what they are able to overcome. Chronic illness is no different. Hope and perseverance is all we have in life because there is no alternative. The stamina it takes to thrive and keep going in the face of illness is grueling but it’s possible. I won’t mention any hackneyed phrases about “staying positive” because I can’t always manage it. Illness is a long haul, but so is life. It is possible to have some faith in yourself and your body to sustain the muscle memory to keep going—to wake up every day and just keep going. You can look into the future and see the edge of the cliff, but you can still make the most of the walk before you reach it.