Yesterday I Ran: MS + PTSD = Mess

Friday was a bad day. It hadn’t been, until someone unexpectedly phoned me from the MS clinic, and the conversation sent me into an emotional tailspin thanks to PTSD issues. It probably didn’t help that I was 70 hours into a mimicked fast and had just started my period. I was hangry, crampy, and when certain things are brought up, I’m really reactive.

This person meant well, just trying to help. But this person is unknown to me and I don’t like ‘meeting’ people for the first time over the phone because I can’t get a read on them. Body language is really important to me, and I really hate being expected to put my medical care and mental health in the hands of people I’ve never met and can’t pick out of a lineup. I have trust issues, what can I say? Things are different now thanks to Covid, but that doesn’t mean I have to like it.

Early in the conversation, she asked why I needed sedation for my MRI. I said that I have panic attacks if I’m not. Just the question got my back up. It’s not so much the claustrophobia, which is definitely a problem, but the noise is the biggest issue.

If I’m sedated though, it just sounds like I’m at a crappy rave which is only slightly more tolerable but at least I don’t freak out.

Then she asked what happens during a panic attack, and that’s when things really went emotionally downhill for me. Why does it matter? Why do I need to revisit how a panic attack feels? Part of my irritation was, I’ve discussed my situation and history with my doctor who has prescribed sedation for the purposes of MRI and absolutely wants me to use it. Therefore, I don’t need to justify or re-explain medical decisions that are none of this woman’s business and between cancelled MRIs and the other AHS stupidity delaying my access to definitive medical care, I’m quite fed up with people who don’t have medical licenses thinking they get a say in my medical care.

Which wasn’t what she was trying to do, but it made me mad anyway.

Partly, I was also angry because it took me back to all the years of gas lighting. Back then, I wasn’t allowed to have feelings, and if I had feelings, they were wrong. I spent years justifying and explaining my feelings, only to be told I was ‘melodramatic’, ‘ridiculous’, ‘crazy’, ‘confused’, ‘blowing things way out of proportion’, or my favourite, being told ‘that never happened’ or that it might have happened, but why would I feel that way about it even if it did happen? I learned pretty early on that there was no point talking about my feelings because I was always wrong, and it’s really safest to just not have feelings so they can’t be used against you.

I’ve only been dealing with feelings for about the last year. I know, sounds weird. But it’s been a long time since I was in therapy for PTSD, and it’s been a long time since I talked about some things. So when this stranger asked me why I needed sedation and what a panic attack feels like for me, emotionally I felt like I was again being judged for having feelings. Weak feelings. The wrong feelings.

Logically, I know this person has no power over how I have an MRI. She can’t decide that I don’t really panic in the machine and therefore I don’t get to be sedated. I don’t even care if she thinks I’m a giant weak baby.

Emotionally? That’s a different story.

I wanted to scream, “I’m allowed to feel my feelings! My feelings are valid and I earned my mental health issues and I don’t have to justify or explain sh*t to you!”

I don’t push my feelings down into the ball of rage in my belly anymore, at least not for long. When it’s an appropriate time and place, I just sit with them for awhile. I figure, if I’m having a powerful knee-jerk emotional reaction to a total stranger, I should probably explore it because it’s not about the total stranger. It’s about me and something I obviously need to process. I knew she wasn’t the problem, but I had a hard time not being snippy and a few times, I absolutely bit her head off even though my emotional upheaval had very little to do with her.

My caller made the right point that, my MS diagnosis is actually a smaller problem at this moment than the PTSD. MS sucks. Disabilities suck. Having PTSD makes it harder, I think. She seemed to grasp pretty quickly that my entire life has fallen apart in the last year, on every level except my marriage. This mess has been very good for my marriage, and it’s probably been good for some personal growth. But financially, personally, professionally, physically, health-wise…I lost everything. Just when I thought I had my feet under me after one crisis, the universe kicked my legs out from under me again. Over and over and over.

For the past year. I’m tired to my very bone marrow.

She also seemed to understand that not being able to run or walk properly, losing my strength, sometimes being unable to move or speak for periods of time…it meant I could no longer run from an attacker or even a ticking package. I can’t run from a burning building. On a bad day, I couldn’t fight off an attacker either. I’ve been in an emotional tailspin for months about that. Oddly enough, even with PTSD I never worried about being out and about in public because I’m very tall and not delicately built and I walked like nobody better mess with me. Since October of last year, I walk like a wounded animal. I might as well wear a sign that says ‘easy victim.’ Nothing says ‘come take my purse’ like a woman shuffling along with a cane.

My physicality was the one thing I’d always been able to count on, my whole life. I’ve learned that I couldn’t always rely on others for anything good, and I can’t rely on karma or the universe to be kind and cut me a break. But I was always strong. I could lift whatever I needed. Carrying patients and other physically demanding tasks at work were no problem. I had enough stamina that I could work for a week on only a couple hour sleep. But suddenly, I couldn’t even count on my own body anymore.

I figured our conversation was redeemable when she said, “That’s a lot to process. Platitudes won’t help you. You know too well that the world is not safe, both personally and professionally.”

Thank you. Yes. And the church says ‘Amen!’

She asked what I learned when I was in treatment for PTSD years ago, how do I manage my anxiety? I got really snippy and said that I used to deal with my stress and my negative feelings with physical activity. I said I used to sprint, and I can’t anymore. Plus, I used to ballroom dance, and I can’t anymore. Once upon a time I worked out regularly, and I can’t anymore like I used to. I used to go outside and hike mountains, but I can’t do that anymore. I cook a lot now, but it isn’t as effective. For me, fight-or-flight activation needs physical movement to dissipate the adrenaline and the physical feelings of stress.

We did talk then about nervous system activation. She told me me about the amygdala and what happens to the nervous system in PTSD. I already knew but I wanted to suss out her knowledge. I’ve known since the PTSD diagnosis that my fight-or-flight system is over-reactive and hyper-vigilant. I think that contributed a lot to my broken brain stem.

She said my nervous system has been trained to be hyper-vigilant because it had to be but now my nervous system needs to be regulated and retrained. She had some good ideas, a couple new ones I haven’t encountered before so I’m happy to give them a try.

The phone call ended on a much higher note than it started but…

Phone calls from anyone related to the MS clinic send my anxiety into overdrive. I don’t know these people and the thought of being permanently disabled or even getting worse isn’t something I can emotionally handle right now. Probably never. Three-quarters of my life has been abject misery and just trying to survive. I’ve survived what I’ve survived, I had made great strides with PTSD treatment, but now my future is financial ruin, disability and being a burden on my husband until I go into long-term care where some underpaid, under-educated, under-trained person can wipe my ass and hopefully turn me over a couple times a day when they aren’t looking after twenty other people so I can stare at a different wall?

I decline.

I was physically ramped up from then on. Running down my list of coping techniques, I tried breathing exercises. Then I tried a warm bath AND breathing exercises. I tried reading, a cup of tea, playing a game on my phone, eating a good meal. Finally, I just crawled into my bed early because I love my bed. It’s comforting and soft and warm. I took a sleeping pill. Nothing worked to move the tension and anxiety out of my body.

I felt tired but wired. I felt like I needed to go for a run, but I haven’t been able to run in months. It took me forever to fall asleep.

Usually when I fall asleep after a hard day emotionally, it resets me. I wake up feeling fine. This time, I felt better in the morning, but not fine. If I describe Friday evening’s anxiety like a rolling boil, then Saturday was a gentle simmer. Manageable, but it was still below the surface so it wouldn’t take much to get me back to a boil. I hate feeling that volatility. Everything is on high-alert and it’s impossible to relax, even if I look fine on the outside. PTSD is something that gets inside and messes up every aspect of life.

Mid-afternoon, I’d had enough. I felt so wired, even though I’d been sitting quietly for hours, that I was sure someone would be able to hear me humming like a live wire. I needed to run. Or at least try. I figured, since so much has improved since the end of April, I’d give it a try and see what happened. If I couldn’t run, I could pick up moderately heavy things and carefully put them down repeatedly.

Yesterday I ran.

It was only twenty minutes. I’m not a distance runner anyway, I’m a sprinter. I did 6 sprints for thirty seconds each at 4.4 mph which is barely a jog. But I haven’t been able to run or jog even a step for months. The signals from my brain were too slow and the mechanics of running were suddenly beyond me. I couldn’t lift my left leg high enough or quickly enough, I couldn’t dorsiflex my foot, I couldn’t keep my balance shifting my weight from right to left, I couldn’t flex my hip. All of this is required to run, and I couldn’t do it anymore.

Yesterday though, I ran and it was amazing. I’m hopeful that if I keep practising I’ll eventually be able to move faster. I don’t need to set any land speed records but if I can once again do a few sprints when I need to ‘discharge the capacitor’ of the physical mess that is anxiety, I’m happy.

After I ran, my left leg decided it needed to be in timeout for awhile so I had to haul myself back upstairs and drag my leg along with me for awhile. That wasn’t great, but it was the greatest post-exercise high I’ve had in almost a year. Emotionally, I was completely blissed out.

Yesterday was splendid. I’m hopeful the MS symptoms will keep improving. I’m still working out my PTSD issues and it’s a lot easier when I can use physical activity to help. It’s also easier to process hard things when MS disability isn’t an outrageous overshadow.

Thanks for all the kind words and support that so many of you have sent my way 🙂 If you’ve been sending me positive thoughts, I appreciate it very much.