Protecting My Mental Health: Leave Me Alone

Another day, another call from someone at the MS clinic, another blow to my mental health.

Today for the sixth time, I had to explain to someone I’ve never met that I’m broke. I’ve lost everything. I’m bankrupt. Ruined. I was below the poverty level last year (thanks Astral Harvest, hope you enjoyed your party). In October of 2019, I stopped being able to work thanks to MS. In March, my contracts for 2020 starting being cancelled thanks to Covid. So I explained to a stranger AGAIN how, other than CERB, I won’t be making any meaningful income for 2020.

I don’t have any money. I don’t mean, oh drat I’ll have to cancel my annual vacation to the French Riviera. I have to buy one less Prada bag this month.

I mean, I’m able to buy groceries for 4 more months by living really really carefully. If nothing else happens. Like, the water heater doesn’t blow up. After a few more months, I sure hope my disease lets me get a job flipping burgers somewhere in town, being managed by a 20 year old. There’s something to look forward to! That was definitely in my life plan.

I’m very excited about all the fun turns my life has taken in the past year.

I’m trying really hard to focus on rebuilding a new life and coming to terms with the end of my old existence. I’ve been through this grieving process many times, but this one is a little harder because it’s come with physical disability, not just emotional upheaval. I told one of the funsucker callers awhile ago that MS wasn’t even the hardest thing I’m processing right now and they were a little gobsmacked.

My mental health has taken a kicking. I have MS. A damaged brain stem. I have mobility issues. Because I can’t afford it anymore, I had to go off my anti-depressants last month. I’m broke. I have no money. I’ll never work on ambulance again. I don’t have reliable transportation anymore, and I can’t afford a new used car. I live in a small town and thanks to MS, walking isn’t an option any longer so getting to a minimum wage job in town would be pretty challenging and dare I say, stressful.

I’m just fed up.

It’s been hell on my mental health and every week or so, I get someone new from the MS clinic calling. I’m not sure if they don’t take notes during our phone appointments, or if nobody reads the notes prior to dialing my number but lordy I do enjoy feeling the shame of explaining once again, that I’m a 40 year old woman with MS and not a cent to my name. I can’t pay my bills. I can’t afford benefits, I can’t afford any medications, or physiotherapy, and my husband works every day at two jobs to keep a roof over our head because I haven’t been able to contribute since fall of last year. Life is grand, and every person who phones me wants to rehash this with me.

It’s hell. It’s embarrassing. It’s painful. And frankly, MS clinic?

It’s cruel.

Today’s phone call was about paying for the meds. Again, for the sixth time, I said I can’t pay for the meds. And I got the usual, “Well have you looked into…have you thought about…what about…”

Let me be clear, here, Carol. I have a Mensa qualifying IQ and an extensive trauma history. Trust and believe I’ve thought of all the possible options that would help me survive and care for myself. That’s what trauma survivors are good at, and I happen to be pretty smart, too.

So then I got, “Well I’ll have to have So-and-So call you. They’re who deals with the financial assistance programs.”

I swear, I felt something in my head explode. I wasn’t sure if my brain stem had finally burst, and my mental health was going to fly out of my skull and spray all over the walls.

Carol, why are you even calling me? My file should say, has said 6 times she can’t afford 28,000 a year for meds, can’t afford Alberta Blue Cross non-group coverage, does not qualify for subsidy, not pleasant to talk to…

How’s about, let’s skim the notes in my patient file before dialing my number? It’ll be better for all involved.

So once again, I’ve told the MS clinic something that they apparently didn’t feel like believing. I had yet another stranger phone me to reiterate that my life is pretty much ruined at this point and oh, okay I’ll have someone ELSE call you about the issues you’ve ALREADY painfully shared with us numerous times.

Two thumbs up. And then they have the nerve to tell my family doctor they have concerns about my mental health?

I suppose I had way too much pride before, anyway. I’d sure like to thank 2019 and at least the first 6 months of 2020 for fixing that little problem. I have no pride anymore. What should I be proud about, at this point?

I have an appointment with my family doctor tomorrow but I have to be honest here, just as I’ll be honest with her tomorrow.

I’m one more phone call from telling the MS clinic to leave me the hell alone. Book an MRI for next year and until then, lose my number.

See, most of the time, my mental health is fine. My energy is good, my mood is good, I’m excited about some new projects (I published a book recently, but that’s another post for another day!) and I think that I might be able to adjust to this ‘new normal’ even though I’m heartily sick of adjusting to new normals.

I’m working out again, doing my thing, feeling pretty good considering the disaster the last year of my life has been, and considering that pretty much the whole world is a dumpster fire right now for so many reasons.

And then, the MS clinic calls and by the time they hang up I’m usually sobbing, hyperventilating, terrified, angry, and wondering what’s the point of living?

I only want to be happy. Is it wrong that I just want to feel good, and I want my life to be fun for a change? But it seems my future consists of poverty, adult diapers, possible blindness, a wheelchair, long-term care facilities, blood draws every few months, maybe organ damage, a yearly MRI…sounds awesome.

It takes me days to recover my emotional equilibrium and talk myself off the ledge.

I usually recover just in time for someone new to call me and set the whole cycle in motion again.

I’ve also noticed, they all love to tell me how expensive the medication is. I don’t know why they keep reminding me. 50 dollars or 500 dollars or 50000 dollars…doesn’t matter. When you’re broke as hell, it’s all unaffordable and being reminded that they want me to take meds I have no hope of being able to afford, doesn’t help my mental health one bit.

The thing is, they’re nice enough but the clinic has done nothing to improve my quality of life.

The meds they want to put me on won’t reverse or improve my symptoms. The medication doesn’t even guarantee it’ll halt the disease, it has a 50% efficacy. To manage the side effects, I can take other meds on top of these meds. Blood work every few months to make sure my liver and kidneys aren’t being damaged. So much fun.

What’s actually been of benefit to me and my quality of life? Physiotherapy. She’s amazing and she also recommended at my last appointment (before Covid) that we try to figure out a way to get financial help for a prosthetic leg brace that’s thousands of dollars but will help me be able to walk and hike and be active like I want.

If I managed to scrounge up a thousand bucks? I’d rather spend it on things that have a demonstrable benefit to my quality of life, like some physiotherapy sessions and a leg brace.

I’ll have to see what my family doctor thinks but right now?

I’m leaning towards protecting my mental health above all else, and that’s going to require me being left the hell alone to rebuild my life.