multiple sclerosis
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27 juin 2023
When John and I got a bee in our bonnet last fall to sell our house and move up to Bellefonte permanently, we knew in theory it was going to be a long road, but we definitely did not have any idea just how hard these past seven months would end up being.
Add in a healthy dash of multiple sclerosis bullshit and the American healthcare system, and it’s been a very long, very difficult, very eye-opening 2023.
Tomorrow, we are due to close on our house.
This is not our first closing. It’s our third, so it’s not completely unfamiliar territory. But when the builder sent an email on May 31st saying that our closing date would be June 28, you could have knocked us over with a gentle breeze. This house building process has been anything but smooth and has left me at times heartbroken, disappointed and angrier than hell. I’ve never in my life spent so much money and had so little control. I have smiled longer and harder in the face of just mind-numbing condescension and bullshit than I did when I worked and let me tell you … that’s saying something.
Anyway, all this to say that as of today, we still have shit water pressure, our AC unit apparently won’t cool the house further than 68 degrees (words cannot articulate my horror at this news – that we would have to add to our HVAC unit in BRAND NEW CONSTRUCTION … ), our front porch pillars are 2x4s, no one knows how the generator hook-up works, people are still referring to the primary bedroom as master (can you see the steam coming from my ears?), the yard hasn’t been landscaped, our stove/oven is incorrect, there is a section of shingles that have been beaten all to hell (and on the other side of replacing our last roof after only six years, I can tell you that’s a sore spot for us), there is a portapotty on the edge of our driveway, a huge dumpster across the street and we have huge delivery trucks coming every day for the rest of the week. None of these issues include the things we have to do on our own – like the water softener so our pipes don’t get clogged with calcium and the tech consult so that our internet will work throughout the entire house.
Listen, it’s not all bad. This will be our very first single family home with a yard. The kitchen (other than the oven/stove 🤦🏻♀️) is beautiful. We are having custom closets designed. We just bought an incredible table and we can’t wait to settle in (even if Eli is going to most likely be a complete maniac).
I have a moment every day when I want to cry. I have many moments when all I want to do is sleep. But I also always think about all the things I’m grateful for – the parts of my life that make living easier. To begin, I don’t work. And even though I miss working, I am grateful every single day that hubs earns enough for us to be comfortable and be able to do all these crazy things. I’m grateful for air-conditioning and heating and NA wine and the ability to buy food and go to yoga and the salt room and all the things. I’m grateful for a husband and partner who loves me no matter what (and that gets tested a lot because MS is a lot). I’m grateful for my amazing family and my friends. I’m grateful for Eli. I’m grateful for travel and books and the movies. All the first world shit, Y’know?
Anyway. That’s where we’re at. I’m sitting at our kitchen table, frozen in a state of what should I do next? We aren’t moving a lot from this house so there isn’t a lot to pack. But … there is because clothing and toiletries (of which I have more than any one person should ever have!). We’re moving one fridge and having another delivered so food transfer shouldn’t be that bad. My high school reunion – which is Saturday – cancelled the day time portion so at least that freed up the weekend for us to work on getting settled in. I’m devastated (I’m the girl who wants to go to the reunion because she loved high school). But I also know that MS is knocking on the door and I’m going to spectacularly crash one of these days. And that’s not fair to John or Eli.
Xox, g
13 mars 2023
I sat next to a man this morning who spent some time expressing his thoughts on youth today, finishing huffily with “And I have cancer, boy-o.”
At first I thought Man, you’re one of those guys. While rolling my eyes. Because it seems to me that when someone expresses an opinion, a justification of why their opinion is correct is also always presented. In this case, this man’s issues with differing opinions than his own were dismissed because they were wrong, but also, his life experience clearly outranked anyone else’s because he’s doing all his living with cancer.
And then it occurred to me that so often, we are all so angry and frustrated and believe everyone else has it so much easier than we do because we assume we are the only one struggling.
Wouldn’t it be better if we assumed everyone was struggling with something? Because it gives grace, but also and more importantly (and most likely) it’s true.
It *would* inherently mean that we would have to acknowledge that our suffering is not above and beyond, that we are not inherently superhuman for managing to human while *also* dealing with our personal maladies.
***
I go back and forth on toxic positivity and ableism. I’ll own absolutely that as a person with a chronic illness, who sometimes struggles mightily to walk, I’m absolutely an ableist. I know this because every time my aunt talks, I hear again and again what I grew up with, and I realize that un-learning that will be a lifetime effort for me. A few weeks ago, she casually accused me of ‘loafing around’ as though managing my energy and my ability with my MS equated essentially to laziness. And as much as it stung (and as much as I haven’t gotten over it) I know that in her world, as in the world of my British grandparents, not being in motion implied without reservation, that I was being lazy. (Side note, I was actually taking Eli on a walk, so I wasn’t even home — but she assumed since I wasn’t visible, since where I was and what I was doing wasn’t immediately accountable — that meant I was off somewhere being lazy).
When I think of my family – particularly my mother’s side of the family – I feel sad because all we’ve ever done, my whole life, is present a ‘public face’ to the world while keeping our trauma and our hardships efficiently and resolutely hidden. Health issues, emotional struggles, life hardships – no one talked about any of it and when I finally got wind of something, it was sometimes years later, after everything was over and done. And even then it was whispered about it a shameful manner.
What a disservice that was to my mother, to my father, to myself, my brother. When I was diagnosed with multiple sclerosis I don’t remember talking about it openly at all (to be fair, my mother had also recently been diagnosed with stage four cancer). I grew up with a cousin whose illness was never discussed (I learned last year that she is bipolar. I’m 43). My grandfather’s stay in a hospital when my mother was young is still hazy — was it for PTSD from WWII or was it for alcoholism? I couldn’t tell you. It was probably both. My family is cagey and in-direct. And so, so British.
***
Anyway. I think my point is that every person is struggling with something. We have been fed a toxic lie of perfectionism that just doesn’t exist. And it never, never did. So we are all trying – in our own ways – to be something that is completely illusive. It isn’t real.
What I like most about how I deal with my MS now is that I’m pretty open and direct. I don’t have to remember who knows what because nothing is a secret (although I rarely tell my MIL anything because by the time she’s done telling the whole family, I’m dying tomorrow and it’s unlikely they will ever see me again. Which is its own, special kind of exhausting).
Today I’m sitting at Fox Chase Cancer Center. Hubs is having a tumor ablated. I’m listening to Andra Day’s “Rise Up” on repeat (I’ve done that for both his previous surgeries and it works for me). My legs are shitty – that’s what happens when I’m stressed out. I worry fleetingly about what people here are thinking of my stilted, teetering walk, and then remind myself that they have their own burdens to carry (it’s a cancer center after all).
Two more hours and hopefully I can see husby.
Xox, g
27 janvier 2023
Having MS sometimes feels like a life of quiet desperation.
Right now I’m in the throws of it, having struggled quietly for weeks. Not sure exactly what’s wrong, not sure how to fix it. Just picking up the pieces and mending everything over and over again. Sometimes I feel like I’m losing my mind. I wonder when I lost it …. Was it fast and I just adjusted on the fly or has it been slow- little bits over and over again until I look in the mirror and don’t know myself anymore. Don’t know what to say or do. The weight of life pressing unrelentingly on my shoulders.
If you look up multiple sclerosis, amongst all the technical stuff (myelin sheaths etc etc) is usually a list of ‘probable’ symptoms. But as every article says, in one way or another, no two people’s MS is the same. So the symptoms vary, the severity varies, how each of our bodies react is different. Treatments, therapies … it’s all sort of a crap shoot. When you find something that works, hang on for as long as possible. No matter the potential side effects. Just keep doing what you need to do to live. I mean, that’s the gig.
I write a lot about how life used to seem black and white to me. And then I got MS, and everything became a blur of gray. Living in the gray was and continues to be uncomfortable. It makes me angry. I have good days and bad days and I ebb and flow between hopeless and hopeful. I smile a lot when I don’t mean it because it makes people uncomfortable to have to face my realities. It’s easier for healthy people to take me at face value and not lose any sleep. Besides, they have their own troubles, their own difficulties.
It’s fucking lonely.
I don’t know how to be a caretaker or a support person because what I used to think was good isn’t good for me. And so I try desperately to have compassion and grace for the people who don’t understand, can’t understand. Being the sick person and being the person who watches from the sidelines — those are two very different roles. When my mother was dying of cancer I know that she suffered unbelievably in the privacy of her own room, by herself. She made Herculean efforts to appear to all of us as though she was okay. But I think I knew she wasn’t okay, and I didn’t say enough because I was trying desperately to respect her humanity. Even though I understood the indignities of being sick I didn’t understand facing mortality and I certainly wasn’t going to make any assumptions. I allowed that space between us out of respect for her -or so I told myself – but probably also for myself, because I didn’t know how to bridge that gap without fumbling and making untold amounts of errors. Would she have felt less alone if I’d said something? Or would it have made her feel more vulnerable? I am not sure. I don’t know.
Right now I feel let down by my body, betrayed and wildly out of control. I don’t know what signals are being sent, if I’m getting them correctly (neuropathy) or understanding. I think I know and then find out, I don’t. I’m so tired and so sad and resentful. And we are living in a tiny house where neither one of us feels as though we have any personal space, and Eli is in peak terrorist mode. It’s been a really rough January. We are limping into February, wounded and defeated. Everything feels impossible.
I wish that the sadness wasn’t so all-consuming. So utterly palpable. I wish for so many things. And sometimes it feels absolutely impossible to remember the good. To remember that time is the great equalizer. It will continue to tick by, whether I’m happy or sad or defeated or triumphant. And we will continue to move through this life, this one and only precious life we have been given.
xox, g
18 janvier 2023
Sometimes the sadness is palpable. I’m driving in my car, my beautiful, I-love-it-so-deeply car, and the sadness thrums like the bass line in a Billie Eilish song. I wish I didn’t get sad, I wish I could ‘fix’ it, but the truth is that after 43 years, I know that the sadness comes and it lingers and then it goes. And it’s just a waiting game.
Last fall was a whirlwind of quick decisions and even quicker action. We decided to adopt Eli, and then we decided we liked it in State College better than Downingtown, and then we decided to sell our house and then we sold it and moved more than half our belongings into storage and then we went to France because isn’t that what you do?
It’s hard to remember fully what the last four months of 2022 were. They were hectic and quick and hard and exhausting and rewarding and …. so, so fast. One moment we were shuffling through paint swatches to paint the walls and the next we were on our hands and knees with Magic Erasers, cleaning the base boards of all the stairwells in anticipation of showings. Suddenly our home of seven years wasn’t our home anymore. All the routines, all the comforts we slowly built disintegrated as we took down pictures and packed boxes full of kitchen equipment and office supplies and books. We wedged things into our tiny Bellefonte home, hoping that we could get a new house built soon. Then we picked a lot to build and made deposits and picked carpets and flooring and light fixtures and where all the electric outlets would go. We picked more things than I’d ever thought about in a house. We signed piles of papers and wrote the biggest check I’ve ever written. Then we packed up our truck, scheduled walks for Eli, and got on a transatlantic flight. We rode trains and hiked through mountains to see glaciers and ate indulgent French food.
And then we came home. And picked up a (much) larger Eli and trudged back to our tiny, stuffed home in Bellefonte, longing for our bed and our couch and our TV and our coffeeshop. And then, before we even got bored with this little moment of mundane-ness, we got *back* in the car and journeyed south again, for MRIs and medicine and doctors appointments, and Eli’s vet appointment to get neutered. Because in all the back and forth and packing and picking and planning and packing … we hadn’t gotten a new vet.
Tomorrow we drive again. For more meds. For Eli follow-ups. I’m not surprised I’m sad. I’m surprised I’m not more sick.
xox, g
17 janvier 2023
I blinked and fifteen days passed.
We spent over two days journeying home to America from France. First to Geneva, then Philadelphia via Madrid, then a night at Dad’s and then, finally … thankfully, we got home. Sleep in my own bed is like liquid gold. The soft snurfle of Eli curled up contentedly between us, the rhythm of our night time routine, the food we love in the fridge. So much cold water. Delicious.
And then more travel, doctors appointments, Eli’s little boy surgery to prevent any more little Elis.
I think I have a stomach bug but who knows anymore. My neurologist seems to be indifferent to the ebbs and flows of my health – as long as the MRI scans look solid, as long as my organs are functioning – all the other bi-products of MS are insignificant. Except, they aren’t insignificant to me. To my life. To the exhaustion and the fuzzy-headedness. The inability to function in a society that insists we be producing every moment of every day.
I’m so tired. I’m tired of being tired, I’m tired of explaining (with a smile and self-flagellation) the basics of my version of MS over and over and over again. I’m tired of feigning ‘okay-ness’. I’m tired of dreams slipping out of my fingers, of watching the time tick by slowly, unable to do anything except survive. I feel as though I’m drowning, slowly, sipping air every few minutes so that the agony never quite ends.
I’m tired of feeling alone.
I always wave it away, assuming I miss my mother and by default the loneliness cannot ever be assuaged. But I think I’ve always been alone. A little American girl overshadowed by a British family who never talked about anything, a family who shunned illness as though it was the worst of all deformities. A little American girl whose father loved her but didn’t quite understand her. Why isn’t she more British like her mother, his beloved wife? Why is she so … contrary?
Change is uncomfortable. I know this. I spent my life changing. Changing schools, changing houses, changing after-school activities, changing lives. It’s always uncomfortable because the unknown is uncomfortable. The devil you know is better than the devil you don’t. But why? Because the devil you don’t could be ANYTHING and at least the devil you know is a known quantity. Knowing is infinitely less scary than not knowing.
Walking away from a life – even one I consciously built – is what I do. It’s what I’ve always done. When things get too familiar, too comfortable, I get antsy.
This blog post is about nothing. It’s about this moment in time. Home from five days at my Dad’s house, finally back in a safe space – a space I can live and exist without having to justify or explain. That having MS is hard. And it’s unpredictable. And I can’t promise anything. Ever. That sometimes I don’t have the patience or bandwidth to be pleasant and nice and accommodating. That sometimes the bigotry and bias and lack of perspective is suffocating for me and I don’t have the forethought or inclination to sit silently by.
Did I mention I’m tired?
I’m so fucking tired.
xox, g
03822
My mind is a jumble today.
I woke up in the darkness of the early morning and fear gripped me. I was paralyzed with worry that another headache was coming. It was funny to have that reaction – not the haha funny obviously but the strange funny – because I hadn’t really realized how afraid I am of the pain until that moment. Or maybe I had full clarity of my own feelings for the first time. I’ve lived with headaches for so long and I think that now that I’m on medicine to help mitigate, I am afraid it won’t work. Sort of like the MS treatments I did for the first two years of my diagnosis that had zero effect.
Being chronically ill is exhausting. I’ve probably written that sentence a million times on this blog. Last night I went back and read some of my earlier posts and I found it both troubling and interesting how the same thoughts and feelings come up again and again. As though I’m trapped in an unending circular maze.
Anyway, I thought maybe I should refocus on something more positive. The things that bring me joy.
I have a friend who is five years into writing her happy thoughts on Facebook and I believe that time spent focusing on finding those little moments is rarely wasted. The energy we send out is the energy we attract.
I love my chai tea. There is comfort and joy and safety and goodness wrapped inextricably in that twenty ounce cup with the green logo that I buy nearly every day (and sometimes twice). I used to say I would quit it one day but now I acknowledge that the pull of that little daily routine is too great and too joyful for me to ever consider eliminating it.
I love when my delivery of catheters arrives. I don’t know that I’ve ever talked about my catheters on this blog or even on social media. It’s a private thing, dealing with the myriad of bodily function issues that come with MS. But I’m ripping that band-aid off because if someone judges me for catheter use then I didn’t really need them in my life in the first place. I get shipments every three months that I have to authorize online two weeks prior and sometimes I skate a very dangerous line of nearly running out before new ones arrive. At my last urologist appointment my doctor increased my prescription so not only did I receive a huge shipment of catheters (which brings with it the knowledge that I can pee comfortably for the foreseeable future) but I got six extra boxes, which is just joy personified for me.
I love when I sleep five hours without interruption. It makes a huge difference in my health and my happiness and it happens rarely, so it is something to be celebrated indeed. A good night of rest for me is two to three hours and then (after a pee break) another five or six solid hours. I’m a whole new person and I am so grateful.
The sleep thing has become a big deal because one of the triggers of my migraines *could* be lack of restorative sleep on a regular basis. As I’m not even a week into my new preventative meds, I don’t know and my new neurologist has just joined the case, but it’s one of the top things he thought could be a trigger. (And I always thought I was a good sleeper … haha, jokes on me!).
Anyway. Tomorrow will mark one week on headache medicine. I haven’t had a headache but that doesn’t mean much at this point. I don’t feel any different so I am deeply worried. Probably what woke me in a panic in the middle of the night.
Living in fear is pretty tiring. Kinda like MS. Meh.
That’s why it’s important – every once in awhile – to stop and smell the roses. (Or the chai tea 😁).
Xox, g
02822
It’s Day something-or-other of migraine meds and so far, not so bad. I haven’t experienced any specific side effects that I’m worried about. I don’t love taking medicine (especially the kind that has warnings about stopping usage) but I am also so desperate to slow down the onslaught of pain that some of my morals and values get blurry. I don’t love that, but that’s where I’m at.
I take medicine (aka get an infusion) for my MS. I guess it’s only logical and inevitable that I will be on meds to help curb my migraines as well. Despite working hard to keep my body as healthy as possible.
On a different note, had a lunch meeting today about an exciting prospect. I don’t want to talk too much about it until a little more time has been invested, but I feel good about something for the first time in what feels like forever. And that’s sort of miraculous.
Anyway. I made it through another day. I even managed to eat fairly well (despite two chais). It’s always a work in progress. But it feels okay today.
Xox, g
27722
I always start the year off strong and then sometime in March completely fall off the wagon. It’s sort of like my meditation practice. When I’m in a groove, it’s excellent. But it’s so easy to fall out of the groove. And then realize I haven’t blogged in nearly four months.
Tomorrow I have an appointment with a headache specialist. I have been tracking my headaches for about a year and a half and they occur much too frequently and are far too debilitating to continue to ignore them. Once upon a time — a nearly forgotten time — I did not get headaches every other week that took me out for three days. But here I am now, hoping that tomorrow is the beginning of a solution.
I think I’ve figured some things out but then something happens and I’m lost again, searching in vain for commonalities or some kind of fixable situation that can be addressed. Hormones, infusions … nothing is the same each time. It’s maddening.
Anyway. I thought I’d come back here to blog. To hold me accountable, sure, but also to document this journey from the semi-beginning.
For the record, as usual, I feel like shit. Not just physically (that’s kind of a given especially since I am coming off another headache) but mentally and emotionally. I’m angry, frustrated and feeling impotent in the large machine of western medicine. My right leg hurts through its numbness – something nearly unbearable. My hip sears in pain like the sizzling of meat on a grill. My left shoulder aches and throbs, sending me messages I cannot interpret. My right ankle drops, tries to lift, and drops again. The numbness burns. I want to cry. I am resentful of everything MS has taken, resentful of how much more I will have to set down along the way.
Tomorrow begins another quest for wellness. Another walk down the de-humanizing hallway of neuroscience. I know that I have to make changes – diet changes and exercise changes. Life changes. I’m angry about that. But anger doesn’t change the facts.
Either I change or I continue to decline. There are no other choices.
Xoxo, g
16322
Usually, when I’m sick, I’m not so sick that I can’t do things. It’s more like – slow down, don’t work out, get some rest and drink some water. This sickness … this has slayed me. I’ve been lying on the couch, nodding in and out of consciousness, reminding myself that I have things I’ve committed to (yoga teacher training for one, but this blog, French lessons, meditation … the list actually goes on). I’m basically able to do the bare minimum and even that exhausts me. No food sounds good, water doesn’t taste good (strange for me) and even sleep doesn’t feel like it helps much.
There’s certainly a marked difference between baseline sick (aka, having an autoimmune disease) and acute sick (where I feel like I am now). I keep reminding myself that it will get better … but I keep waking up and it isn’t better, so that’s highly discouraging.
Also, I used an ab wheel on Monday for the first time, and after thinking I broke my back (and realizing I’m not as strong as I like to think I am) my entire core has been burning since this sickness began. And that, plus the GD poison ivy and this sickness — it has been a very rough week.
Xox, g
15322
Today, I’m sick.
Not normal-every-day-having-MS-sick, but sick sick. Congestion and low-grade fever and dizziness and …. You know what I mean. And I haven’t been sick like this for … years, honestly. I took a Covid test (because those are the times in which we live) but it’s not Covid. Just your run of the mill sick – yay?
I thought a lot – as I struggled to do simple tasks – how much we all take our health for granted. Even me, with MS. And husby, with MEN1. Doing simple things – laundry and dishes and feeding myself — all so painfully exhausting, requiring so much focus. When I finally collapsed on the couch (after showering – which exhausts me on a normal day) it didn’t take long for me to nod off. But sleep is fickle when my body feels this way – I have to pee or my airways are stuffed or my throat is sore or … or ….or ….. The list is on-going. I think I was up every hour last night – even husby commented that it wasn’t a good night and left me in bed when he took Lucy to the vet.
It’s one of those days. At the beginning of one of those weeks. Time will keep marching, it always does, and life will continue. And the ebbs and flows will come and go. I just need to surrender to the ride. And since I’m so tired and feel like such poo, that’s just what I’m planning to do.
Xox, g
D5 Creation