multiple sclerosis
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Day 73
When John & I moved to Chester County nearly six years ago, we didn’t know anyone. Well, my parents, but that’s it. We had no friends down the street, we commuted to work and we lived in a little bubble of travel, our selves, Lucy and our house.
It’s funny how community builds when you aren’t even looking. Today, my yoga community and the broader community of people with autoimmune disorders rose up and illustrated to me —yet again — how important community can be. How important community is — full stop.
I’ve never lived in any one place for longer than six years. I hit that mark in the apartment — the first place John and I lived. And this July, I will surpass it when we hit the six year anniversary of moving into our first house. This house. Our home. In a place we chose because it just felt better whenever we were here. In a place where we have built community — with locals and business owners and outdoorsmen and yogis and other transplants. Where our community rises up and carries us when we need support.
When John and I chose each other we had very little else but ourselves to bring to the table. What we have we have earned together, we have built together. When I look around at my life, I feel blessed beyond measure in my partner, in our shared vision, our shared likes and values and hobbies and ways we see the world.
I feel blessed in the people who have become our support network — our friends and neighbors. To have built what we have built from nothing feels like a miracle. And I am so grateful for it.
Thank you Amy & Susanne. Thank you so very much.
Xox, g
Day 69
When I first lost feeling in my feet, it was December 23rd and I woke up in the spare bedroom of my in-laws. I thought maybe I slept badly, pinched a nerve. My feet felt floppy, as though they couldn’t hold shoes. As though I had pins & needles … that never ended.
Even when I finally got on a therapy that helped with my walking and my balance and my energy … my feet stayed stubbornly numb. I look at them and am thankful they are pretty feet. In my dark moments, I wish fervently to feel them again and hot tears sting my eyes. I smile at the tattoos that adorn my right foot — tattoos that I barely felt being inked. A tear slips down my cheek and catches in the upward crease of my mouth.
I try not to be angry at the things I’ve lost. I’ve gained as well, and mourning my losses won’t change their absence. I reminded myself of this as I struggled and wobbled and dragged my feet through a yoga practice today. Comparing today to five months ago is useless and honestly, both sad and pointless. Time marches on, my disease marches on and I can only be in my body of today.
It doesn’t change the deep despondence that exists in the dark corners of my soul. That is my truth, parts of the truth I carry behind my smile.
Xox, g
Day 68
There are moments in my life when I feel as though I am on bloodied knees, begging for mercy. And other moments when I feel blessed beyond measure in all that my life entails. It’s certainly a spectrum. (Sometimes daily!)
Living with an autoimmune disease has been one of the greatest teachers I could ever have asked for. It teaches lessons in patience and humility, in self-advocacy, in moderation, in values and what’s truly important. It distills life down and gives it clarity in a way that did not exist prior to the disease. It is as much a gift as it is a curse.
I remind myself of these things when I’m tired, when I can’t find the strength or the internal fortitude to keep doing all the things, day in and day out. There’s an awareness that is honed over years of being diligent about … well, life … that while beneficial, is also exhausting.
Practicing gratitude in the hard times is as important as remembering the truth in the good times. It is a balancing act, an on-going exercise in equilibrium.
It is always.
Xox, g
Day 62
Today was the kind of day that makes even someone like me wish for Spring. The weather was mild and the sun was shining. Everything felt a little easier.
I managed to be highly efficient all day — both getting in my Peloton miles and going to yoga (!!yay!!) plus running some errands, seeing the chiropractor AND making the majority of dinner.
I did all of it with a killer headache which is (for me) a huge accomplishment.
When I asked Dr. M for a referral to another neurologist last week I thought he took me seriously. (He *doesn’t do* migraines …. just MS). Three day long, debilitating headaches occurring after my infusion like clock-work seem … suspicious at the very least. But there was no referral in my paperwork and my disillusionment with modern-day healthcare deepens.
It’s just a frustrating place to be — governed by my health but unable to get any actual, comprehensive help. It’s all so fractured and not a single doctor wants to say anything for certain for fear of a lawsuit.
It’s exhausting. I’m exhausted. As though MS fatigue weren’t enough.
Ergh.
Xox, g
Day 61
Just as I was feeling up … then … without warning, I was down again.
Driving home from therapy this afternoon the fatigue hit me like a ton of bricks. I stared out the windshield, going through the motions of getting home but as though my body reverted to auto-pilot. I climbed the stairs. I pulled off my boots and put on sweatpants. I slunk into my chair and pulled the blanket up to my chin, closing my eyes.
I probably sat for twenty or so minutes, just letting my brain catch up to my body. Decompressing, slowing down. Re-focusing.
Fatigue is a weird animal. It’s not like being tired — it’s more, it’s all-encompassing, debilitating. It always wins.
Sometimes I wonder if adrenaline is what powers me through most days, and upon finally finishing whatever tasks are on the calendar, my body just collapses from the effort. It needs a re-boot. A rest. A moment of stillness, when nothing is required of it.
I’m climbing slowly out of the pit, stetching. Coherent thoughts once again populating my brain. Next is dinner. And then … finally … sleep.
Oh, what a Tuesday.
Xox, g
Day 55
I’ve heard that women almost immediately forget the exquisite pain that is childbirth. At least long enough that they are willing to go through it again (sometimes multiple times). They kind of remember. But not enough to dissuade them. And I’ve been told the pain is nearly unbearable.
I thought about that phenomenon this morning as I lay in bed, waiting for my alarm to ring.
Of course, I have no idea if it’s true or not, or how accurate it is. Because I’ve never given birth. But it made me think about the theory that everything we do as humans is driven by natural selection and the promotion of our genes to the next generation. Part of Buddhism — per my current read (Why Buddhism is True) — is detaching from the seemingly inherent pull of natural selection/acting in the best interest of our genes and instead detaching from those feelings; being an objective observer.
I woke up this morning feeling infinitely better than I have in days. And my first few thoughts included (but were not limited to) Ah, back to normal! Whew, I can actually get some stuff done today, Thank God my brain is working again and I can get a good work out in today!
The problem, as I got up and went about my morning routine (really intense stuff like skincare and laundry) was my assumption that this feeling — the one I had today of fairly good energy and the ability to function as a healthy human being — was somehow my “normal.”
That assumption has gotten me into loads of trouble across the eight years (and counting) of my multiple sclerosis. I think I feel better and therefore I can go back to overloading my body and mind and all will be indefinitely well.
Nope.
I’m the woman who just gave birth and then thinks it’s a good idea to do it again. Who forgets the pain and suffering of nine months of pregnancy and then pushing a watermelon out a hole the size of … well, woefully smaller than a watermelon. (This might be somewhat inaccurate … again, I’ve never given birth). The point is the same. Mild insanity.
Anyway, my moment of clarity today happened when I stopped myself and slowed down. When I considered that my life is just one big cycle of feeling good, overdoing it, and then feeling like death for a prolonged period of time, only to start it all over again.
How do I break the bad habit?
That’s a real question because I don’t know. I tried to be kind and gentle with myself today but I just wanted to DO SO MANY THINGS BECAUSE I FELT GOOD!!! It’s really hard not to take advantage of that.
I guess I just have to keep remembering the exquisite pain of overdoing it — the collapsing legs and the cotton-head feeling and the overwhelming and debilitating fatigue.
As my yoga teacher says, it’s a practice, not a perfect.
Xox, g
Day 52
Today has been a tough day.
Yesterday was a really tough day.
Tomorrow there is snow on the forecast. Possibly the last big snow of the season.
Up, down. Good, bad. True, false. Circling, repeating. Never-ending.
I’m glad for the snow. Snow offers the reprieve of quiet stillness. Solitude. No pressure to do, act, participate, go. A break from the unrelenting quest for normalcy amidst chronic illness. Fatigue. Body failure. Gray days, snow, rain. For me, they equal peace.
And right now, I need peace. I need stillness. I need rest and routine. I need grace.
Xox, g
Day 29
Today was a medicine day. And it was my first infusion at a new infusion site (my old site no longer does outpatient infusions). It was alright. I’m exhausted and don’t have much to say. Happy Friday! Happy We-Are-Almost-Through-January!
Xox, g
Day 22
The thing about being in constant, acute pain over a long period of time is that you lose all concept of reality. And then, when the pain begins to recede your body basically collapses from fatigue; from the sustained effort of constantly fighting and managing the unending agony.
I know that I need to see a doctor about these headaches. I know it, but just contemplating it exhausts me to the point of tears. After the absolute song and dance of my latest tele-medicine appointment, and the even more discouraging news and diagnosis’ (if you can call them that if even the doctor isn’t really sure) …. Anyway, the prospect of starting another health journey is both excruciating and heartbreaking for me.
Doesn’t mean I won’t do it. Just means I get a little more sad every time I do.
I’m hoping today is the last day of pain. I’m hoping that tonight I sleep. I’m hoping a lot of things.
Wish me luck.
Xox, g
Day 21/6
Eight years ago today, I was positively diagnosed with MS.
Sometimes I remember. Other times the whole day slips by before I realize.
Today I am in the second day of another killer headache. We are quarantining. I am tired, irritable, frustrated, sad.
But for some reason, seeing the date written out and remembering its significance made me smile. Eight years. It feels like a lifetime. So much has changed. I have changed.
Eight.
Xox, g
D5 Creation