I need an attitude adjustment. There’s just no other way to look at it. So, I’ve come back here, my place to examine all things outside of my control, in the hopes I might come away with something positive because I feel desperate. There’s just no other way to look at it.

I’m looking inside myself this time because searching out there in the world of chronic illness information and support is leaving me flat. I find myself wishing I could just stay in bed and forget all of this is even happening. That’s not easy for me to admit because I want with all of my being to be better at this. I want to master MS the way I’ve solved problems in the past but I never learned what to do when your actual problem is yourself, your own body, a thing completely outside of your control that should be in your control, at least partially, but just isn’t. I don’t feel any of the things people have told me I am, things like brave, strong, relentless and unstoppable. I read those comments and I feel like a fraud.

I feel very stoppable. I feel stopped.

My forward momentum coming back after my baclofen pump surgery in February has taken a bizarre turn backwards. The independence I was beginning to feel a month or so ago seems like a vague dream I once had where I was almost able to shower all by myself, could occasionally get myself up my front porch steps and where the threshold ramp to get inside of my house from the front porch was easy. I was close to being ready to try driving my car (in a controlled environment of course). I felt comfortable in my bed at night again. I considered trying laying on my amazing sofa at night instead of watching television from bed at night like a sick person. I really love that sofa.

But now a mere month later I am back to square one on all of those things.

A shower requires a wheelchair assist and an audience. My porch steps look like the impossible hurdle they have become. My car sits in the driveway looking all sexy and ready to go and I sit in the living room looking at it because the porch threshold ramp is too much for my body to manage. The old routine of watching Jeopardy with my mom and heading to bed before 8pm to watch television from the relative safety of my bed has become my norm once more. If I tried laying on that sofa I’d be stuck on it almost certainly. I am trapped in my home by wonky legs that are so stiff they barely budge and by the summer heat and humidity that my broken body simply cannot bear.

I am ashamed of myself because of how desperate I feel. I search for gratitude and grace in my soul and I find fear and anger. I tell myself I am blessed in so many ways but instantly forget them all the second I stand up and feel my legs that are somehow stiff and weak at the very same time. I cry. A lot. I’m not handling this well.

I’m so very tired. I’m tired of being tired. I want to stay in bed and hide from all of this but when I’m in my bed I can no longer relax because my legs go stiff making it difficult to get out of bed again when the time comes to pee for the 47th time in a 24-hour period. Bed isn’t a relaxing place. Again.

My doctor tells me we will get this right, that this pump adjusting business is a trial and error process that we will master once we hit the settings just right. Until that time, I continue to drag myself to the doctor’s office every few days to try a new setting one more time only to drag myself back again typically within 48 hours. Wait. I don’t drag myself anywhere, I have to be dragged by several people and driven by another. Sometimes getting me back in the house requires friends, family and the occasional neighbor.

I’ve made the phone call I have dreaded making almost from the day of my diagnosis.

I’m looking for a new place to live. My beloved house isn’t workable for me anymore. I need to assume I will eventually be in a wheelchair more often than not, and while there are worse things in life to consider, I can’t be in a wheelchair and live in this house. It just won’t work. MS wins again. I have to hope that the planets align and I find a living situation that is workable for me in a housing market in Pittsburgh where homes are scarce. In addition to the accessibility details I also have to find this new place to live within a short distance from family and friends because there’s always the lurking reality that I might need help and I might need it fast. This is a very specific and limited radius that I’ve defined for my realtor. I haven’t told my family I’m looking yet. I can’t face it. I have this feeling that I will know it’s the right thing to do when I find the place that fits all of my many criteria.

Don’t get me started thinking about how I will actually move. The burden that will put on others is too much for me to think about in advance. My brain threatens to explode every time I try to imagine moving day.

How will any of this work? How will I be happy? When will I stop feeling like a burden? Will a wheelchair and single-floor living really make this nightmare feel more like my happy life again? Friends who know more than I do tell me it will. They tell me it’s time. I’ve tried hard enough. It’s time for moving and hand controls for the car and becoming an inspirational cripple who has remade her life into something different and new and somehow found happiness again.

Ok. They don’t say the thing about being an “inspirational cripple.” That’s my ableist inner voice coming out to play on the internet for the world to experience just as if you, too, are living inside my head. I don’t recommend sticking around just now. It’s a rather inhospitable environment.

I find myself pondering the meaning of life and other really practical notions like what is the true nature of happiness, what are the elements of a productive, happy disabled life and wondering if I’ll ever have the energy or desire to wear cute outfits and put on makeup again. I told you the range of my inner thoughts was broad. I wish I could control it but my mind eludes me and laughs at my attempt to rein her in. I’ve considered meditation. It’s difficult to meditate when you can’t find a single comfortable position in which to rest, with a mind that can’t stop wondering whether or not the body it is attached to will be able to get upright again once the meditation is complete. This feels like a non-productive approach to mindfulness.

Lauren, my occupational therapist, was at the house yesterday working with me on upper body strength. We talk the entire time and it usually leaves me feeling physically spent but mentally at ease. Lauren has a very relentlessly positive position on my situation and I feel like I need her to spoon feed it to me regularly almost as much as I need her to put me through my rigorous routine of modified push-ups and standing arm biking. Without it, without her very practical but optimistic way of looking at my situation, I get lost in the dark and twisty places in my brain.

Lauren told me a story about another of her home patients that knocked me for a loop. I don’t know who the woman is or where she lives or anything like that – we are very respectful of privacy – but I’ve known that Lauren goes to this woman’s place after she leaves me and she often dreads it, not because she dislikes the woman but because she hadn’t been able to help her much and it was frustrating for both of them. The woman is around my age, married, with a grown daughter. Her “illness” was a mystery. She was experiencing strange weakness and inability to use her limbs. It was almost like her body forgot how to move itself or make itself act as a body should. The woman has extreme anxiety about this and understandably so. Much like me she want to figure out how to make her body operate even a little bit better but she works and works and nothing seems to take. At one point, Lauren suggested a visit with a neurologist to do more testing, to dig a bit deeper, and that’s exactly what happened.

It turns out that the woman has ALS. Her decline has been so rapid that Lauren had to shift into the mode of getting her as much supportive equipment as possible to help her maintain her life at home with her family. There is a hospital bed now and various lifts, a motorized wheelchair and a special recliner to prop her up in during the day. Of course, insurance now wants to cut OT home visits to once a week. This depresses the hell out of me. It’s typically exactly when you need to rely on health insurance that they begin trying to cut you off. Imagine paying for health insurance for fifty years of life only to have them deem you not worthy of further treatment because you have an incurable debilitating disease. I know how much my time with Lauren helps me not only physically but mentally, too. This all seems so very wrong to me.

I find myself unable to stop thinking about the woman newly diagnosed with ALS. I find myself wanting to be so grateful that I am not she. I find myself feeling guilty and sick knowing something of the despair she might be going through but exponentially more than what I experience in my own chronic illness journey. I find myself wishing I was a better person – that it didn’t take hearing a story about a woman a lot like me whose very life has been upended to make me feel more grateful for my own frustratingly broken vessel. I find myself being angry that life takes so much from so many but seems to leave others basically intact.

I find myself with tears in my eyes, again, wondering how we find a way to keep going. I find myself wanting to be better in so many ways. And I find myself lacking in mostly all of those ways.

I’m going back to the doctor tomorrow for another pump adjustment. I want to be hopeful and optimistic that we’re getting closer and my days of feeling like I’m moving backward might be coming to an end for the time being but I’m not. I keep taking ever more drastic steps to try and grapple with this new life in this broken-ish body and each time I see a glimmer of hope, I find myself back where I started again but no, I actually find myself even further behind. I intellectually know what it means to have a chronic progressive disease. You know this, as I know this. I’ve written about it ad nauseum right in this space and yet I find myself completely lost as if my diagnosis was just last week and not nearly five years ago. Five years! Where did they go? Where did I go? What am I even doing?

Right now, I’m writing. I’m waiting for my helper to come and put away the groceries I just had delivered. I’m listening to the guy who’s re-installing my grab bars around my new, higher toilet and hoping he gets done before I have to pee again. I’m looking at the clock and realizing that it’s almost time for Aaron, my physical therapist, to arrive and put me through the motions of working my legs hoping to make them somehow stronger while I wait for this pump situation to work itself out. I’m thinking about how grateful I am that I got a haircut in my kitchen yesterday because I couldn’t make it to the salon and my hair was about to drive me mad. I’m wondering how I can even care about something so dumb as my hair when nobody but me ever sees it. I am preparing to use the toilet downstairs because the guy isn’t done with the grab bars yet. Where are my shoes? I can’t go down to the basement without shoes my feet with get all dirty. I’m wondering when I will be well enough to go back to work so I can have something to think about that isn’t any of this. I’m wondering if unicorns come in the shape of a house all on one floor that’s not too far away.

This is how I get through my days, these days. It doesn’t feel like enough. It also feels like too much. Maybe you can relate.