multiple sclerosis
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04222
I did a series of social posts today because – as usual – I had trouble sleeping last night and I occupied my mind by planning my outfit.
Medicine Day clothing is tricky, because it has to be super functional in a number of key situations (vein access, rest room usage, etc). But I don’t like repeating outfits two months in a row, and I don’t like looking a hot mess.
Mostly because when you go to the hospital to get an infusion for an autoimmune disease, you’re treated like you’re a hot mess, have no brain and possibly can’t speak (among other, de-humanizing things). So I like to look sharp, so that I am taken seriously. It’s my hope, at least.
Anyway. Thought I’d share them here. Because A. My outfit was in fact, on point. And B. It’s good info for future use.
Final pic is my workout. The longer I’m on Tysabri (at the start of my eighth year currently) the more tired I get on infusion days. And working out actually helps clear my brain. But getting motivated to work out is a challenge. I managed to do it today. I hit 1k rides on the Peloton.
Not so bad.
Xoxo, g
01222
Another month.
Time is crazy to me. Sometimes I’ll stop and wonder where I am, as though the wheel is spinning and I’m just skipping around, not having landed yet. It’s disorienting and I reach out, trying to find my roots.
LIke – how did we buy a second house only three months ago? Was it really only three months? I mean, it’s February 1st and we bought the house at the end of October … so that’s five calendar months, but only three full months since we did that thing. It’s insane to me.
And on Friday we head back to the city for medicine. It feels like forever since we were last there … but it was only four weeks. This will be my second infusion of 2022 … craziness. (Plus side, I’ve almost hit my insurance deductible and things will start costing zero dollars soon! Benefit of being a sick person, I guess? Hitting those thresholds early on).
When I am tired or I have a headache (regularly occurring things) time stops existing. Everything is paused. Tasks that would take five minutes get kicked down the road. Everything feels overwhelming. I’m grasping for time to steady myself and also wishing it to pass and finally reach the end of the searing pain.
I’ve gotten good at existing within the pain – at getting life things done. But by the end of the three days (that’s the typical length) I’m so exhausted from enduring the pain – from smiling – that it takes another couple days to recoup.
I’m tired of apologizing and explaining. I’m tired of feeling bad that I can’t just exist as a regular person. I’m tired of all the pressure and judgement I put on myself. Because even if it is other people, the only judgement I really feel is the judgement coming from within.
Fucked up, right? Yeah, it’s a side effect of having an invisible illness.
Xox, g
24jan22
I made an unspoken deal with myself this year. I said, ‘Self, let’s try to blog every day again. But let’s not talk incessantly about how tired you are. Let’s just agree that being exhausted is status quo and therefore unnecessary to pontificate on.”
Whether it seems obvious or not, I have actually tried not to blog about headaches and fatigue and all the things that are part of my daily life. I have tried – with varying degrees of success – to blog about my thoughts or other, possibly more interesting, things.
I am tired tonight. The kind of tired that starts with a burn in my shoulder and progresses to bone deep cold and culminates in brain fog and the loss of any sense of balance. I’m just reaching out for something to hold onto to keep me upright.
I meant to blog earlier today (as I often do) but life happened – family drama and bookkeeping and laundry and dinner. You know the things – the things that have to be done but take up time and energy. The latter of which is in very short supply for me.
Anyway. My hope is that I read this blog post tomorrow and it makes some sort of sense. Right now, I’m going to put on pajamas and climb under multiple blankets next to a space heater and hope to stop shivering and fall asleep.
Xox, g
21jan22
I got to yoga late this morning – not so late that I missed the start of class or anything, but late enough that I ended up front & center (literally). I don’t mind front but center always poses a problem. I usually use the wall when I begin tipping over and it absolutely helps me during balancing postures.
Today was Fun Friday Flow and as I said to Sue (our teacher) after class, her definition of fun is wildly different than mine! It was a challenging class partly because I had no idea what was coming and for my MS body, that’s a real challenge. But in its own weird way, practice was fun. Because I was fully present. I couldn’t not be. It was just me and my mat and sweat. For seventy-five minutes. And that was glorious.
Sue began by having us think of an intention, and I didn’t so much have that as I had a thought. Nine years. That’s what I kept thinking when I was wobbling or unsure. When I needed to center myself and come back to the basics. When things felt too hard, or impossible.
As of today, I’ve been diagnosed with MS for nine years, And I can still get on my mat and I can still practice. And some days are better than others but they are all better than those first two years of Lydia(my cane) and losing the ability to write and sliding helplessly down the slope of disability. I can walk and I can think and I can – if I’m disciplined – do more than one thing a day and survive.
I’m healthier than I ever was as an adult without an incurable neurological autoimmune disease. That’s a certainty. I eat better and drink better and sleep better and exercise better and think better than young, ‘healthy’ Gwyneth ever did. I’ve learned a lot in nine years. I’ve felt loss and I’ve felt despair, yes, but I’ve also felt joy and accomplishment.
MS is hard. It’s hard for many reasons, but a big one is that I don’t look like much of anything should be hard. I look like a healthy forty-something. And I am, but I’m also not. It’s weird and uncomfortable living with that juxtaposition.
But I’ve been doing it for nine years. Like I’ve been saying all day – wild.
Xoxo, g
6jan22
Tomorrow is medicine day.
I have a raging headache today because I’ve pushed myself too hard too many days in a row without resting. And with no real rest in view. Plus we’re forecast to get a lot of snow right about when we’ll be driving to the hospital. So, yeah. Yay?
It’s one of my least favorite new MS things, these headaches. I’ve been tracking them for about a year and the only thing I can find in common with all of them (other than their 3 day life span) is that they come when I’m ‘getting into a groove’. Aka working out a lot and feeling like a normal human (running errands, cooking dinner ….pretty regular human stuff). Anyway. I’m a little frustrated. I’m obviously exhausted.
But I’m wearing my tie dyed PSU sweats and we’re gonna watch an oldie but a goodie tonight. So it’s not a total loss of a day. Plus, Lucy had a spa day (mani, pedi, bath, teeth cleaning…. Basically the works). We’re doing alright.
Xoxo, g
Day 361
It’s been a weird month.
This morning, a Monday, I got up, put on the same type of clothing I always put on (workout gear) and began the day. Even though husband has been laid up and living in his office for the past week. Even though there was nothing to do, nowhere to go. Even though I was feeling adrift.
And now, as I sit on the couch, sipping my chai as snow softly drifts to the ground, I feel at peace. Life isn’t easy. Life can be pretty unfair and difficult and destabilizing. I think I front-loaded a lot of my trauma — even MS doesn’t feel bad every day all day. But maybe it all has a little more to do with awareness than anything else. Being present, having the ability to realize that life *can* happen to me, or I can live. It’s up to me.
I am always tired. True. But not so tired I can’t live. And there’s maybe a little more planning and thought that goes into my travel, my movements through the world. But I get to do those things with husby and for that, I am eternally grateful. I get to do those things, full stop. That is a blessing.
Life is about learning and growing. And doing it the best we all can within the world we create for ourselves. I think I’m doing my best. I think I’m learning and growing and finding peace in my own truths, my own choices.
Xoxo, g
Day 343
Per Dr. M’s instructions, I spent today doing nothing (I knew – despite a long, long To Do list, that I was exhausted). I messed around with photos on the internet. I drank a delicious soy chai. I watched the first two episodes of “And Just Like That.”
And then I found myself staring at the ceiling in my gym, not quite paying attention to a Peloton guided meditation while testing out my new infrared sauna blanket.
PS. I know that whole last sentence is ridiculous. In fact, I thought about it while lying there.
As I lay there, trying desperately to listen to Anna Greenberg’s instructions to tense and release all the muscles in my body, I thought about what a weird wacky road I’ve been on. I’d say the last nine years or so, but it’s really just life. Not just MS.
There was a moment in my life that I was so broke I was crashing at a friend’s apartment, eating her peanut butter out of a jar and making biscuits with Bisquick and water (things readily available to me that cost zero dollars). I remember spending my last five bucks on a pack of Parliament Lights and going to a bar where I knew the bartender so I could get a drink. I ate fast food or whatever I could scrounge at the restaurant (I never worked anywhere with staff meals, but man that would have been nice). I slept odd hours if I slept at all. I had shitty friends and dated shitty guys. I mean, if you could call it dating. Or friends.
Today I have an infrared sauna blanket, a Peloton, a full fridge and a plethora of NA beverages (because I quit drinking almost two years ago and smoking many many years before that). I sleep 7-9 hours a night and drink massive amounts of water. And green smoothies. With things like spirulina in them.
It’s a far cry from that lost twenty-something.
When I think about it, I often wonder how I got to where I am now. I wonder how I didn’t lose my way completely and fulfill all the expectations of the little rich American girl. (I never thought I was rich. My parents would balk at that description. But as a nearly 42-year-old I can say quite plainly that I grew up really well and my life was very different from many many other lives from age zero to about eighteen. And my life today is very nice and we live very well. The difference? John + I earned this stuff. It makes it feel different somehow). How did I end up figuring it out when I felt completely lost most of the time …. Truth? I couldn’t tell you.
Anyway. Back to the infrared sauna blanket.
It’s a funny thing to just keep hoping that something will be *the* something. The discovery that makes the aches and stiffness of MS go away. The something that makes having MS less hard. I keep searching and trying and getting discouraged but trying again. Because if I stop trying then I’ve given up, right? And the MS will never go away. So I have to keep trying. I have to keep doing all sorts of odd things that other people swear are their saviors. I have to keep trying things like infrared sauna blankets.
Because otherwise, it’s over. And I don’t want it to be over. I don’t ever want to admit defeat to MS.
Anyway. I’m all over the place. I told you I was tired.
Xox, g
Day 342
Yesterday was a Doctor Day.
So we shlepped into to Philadelphia, dealt with the obligatory parking issues and elevator issues and finally saw Dr. M to do the dance we’ve been doing for about eight years. How am I feeling, he asks without actually wanting to know. He scrolls the computer screen looking at my bloodwork, typing sporadically. We make small talk about the Grateful Dead. Talk about some intriguing research being done in the MS field that isn’t really relevant to my case currently. I tap my fingers, let him know if I can feel the cold metal, walk back and forth across the room on my toes and my heels, in a straight line. I hop on each foot. He disappears to “look at my scans” for a good twenty minutes. They are fine. We will see him in another three months to do it all again.
My prescription – as per usual – includes doing much of the same (eating well, water, sleep etc etc etc) and continuing to work on my anxiety levels.
Thanks.
So easy to say.
But it isn’t just anxiety about paying bills on time or Lucy’s medicine. Or picking up the dry cleaning (which I forgot again whomp whomp). It isn’t just anxiety about MRIs and walking in a straight line.
It’s low level anxiety about everything. Is it a sign … is it MS? Am I getting sicker? That’s the rub. Everything could mean worsening disease. Or it could mean nothing. And I don’t know. And honestly, my doctors don’t know. We’re all just guessing based on other people having this same diagnosis, this same combination of brain and spinal lesions and vitamin D levels, and glucose and all the other levels measured on a metabolic panel.
It’s anxiety about being sick but not wanting to be treated as sick. And sometimes needing grace without condescension about being sick. But not wanting that sickness, that moment of weakness to define me. Because I’m more than that. I’m more than lesions and fatigue and diet protocols and doctor appointments and numb feet and bladder issues.
Anxiety about the fact that once that side is seen, people cannot unsee it. It starts to define me and the anxiety of being limited and then limited again because I have multiple sclerosis. People making accommodations and acceptions and then … pity.
Anxiety about pity. Anger and anxiety and frustration and rage.
Because I’m here and I can’t fix it. I’m here and I can’t change it. I’m here and no one seems to be working on a way to get me out.
Anyway. That was yesterday.
xox, g
Day 314
Every time the seasons change I am convinced that my MS is going to kill me. That I did something to make everything so much worse and it’s the beginning of the end. All the work, all the effort to stay as healthy as possible has been for naught. I have failed and MS has taken control.
And then I remember that this happens every time the weather changes and to just give myself a break from the anxiety and panic and worry. Easier said that done. Isn’t that the truth about so many things?
It has been a long learned lesson that I still forget every few months. Right now I’m dragging, my eyes tired and my brain short-circuiting like wires doused in water. I’m praying that the temperature drops and stays low, because these forays back into the 70s kill me. Every. Single. Time.
It’s a hard assignment – learning how to best live. I don’t think it matters if you have an autoimmune disease or are just human. Figuring out how to live — really live — is exceptionally hard. There are pitfalls and doubts. There are difficult questions you don’t know the answers to. It feels scary and intimidating and never-ending.
And it comes back to a simple question — Who am I?
Not “Who was I” or “Who do people think I am?” or even “Who do I want to be?”
Just … Who am I?
I have a million answers and none. I breath in and breath out, my fingers hovering over the keys. Who am I ….
Tough question.
xoxo, g
Day 293
When I finally decided to get up this morning, I did it in one motion. Blanket back, legs swung round, eyes bleary, body heavy, my torso suddenly vertical and painfully stiff.
I’ve been feeling heavy lately. Without a particular reason why. Maybe its Lucy’s tumor — now removed and tested and benign but the scab still healing and the cone still on. Maybe it’s our newest little dream that we’re slowly willing into reality — a dream I hesitate to talk about in absolutes or write about at all. Maybe it’s just being tired because life never does slow down — that moment of relaxation always just out of reach.
Today I went to physical therapy despite it being the last thing I wanted to do. I signed up for yoga and promptly cancelled my booking. I want to sit and feel the fall, feel the cool air slipping through the open windows, filling our home with a delightful chill that necessitates sweatshirts and fuzzy socks and blankets.
I want to take my dog for a walk in the autumn sunshine and come home to curl up and read a book. I want to breath and think and try to let go of the desperate stress that pervades every corner of my world.
I do not want to adult or even human today. I can’t bear small talk and niceties … discussing anything other than nothing.
I want to be alone. To be quiet. To write and read and be comfortable and comforted.
xoxo, g
D5 Creation