My MS is better. My hypertension is worse.
Health has been a struggle for me over the last month. MS relapse. Tons of seizures. And now, because I haven’t been able to exercise, and we’ve been eating convenience foods because it’s just too much work to do all the dishes and cook on top of dealing with regular household chores and being ill. Thus, my hypertension is out of control.
Adam – 1, Seizures – 0.
My husband, being the observant person he is, helped me realize that the amlodipine I’ve been taking to help control my blood pressure has been causing me seizures. It’s a side effect that happens to fewer than 1% of people who take it. So, I stopped taking it yesterday. It didn’t really seem to be helping me anyway, considering that my blood pressure WITH the drug in my system was 167/102 first thing in the morning.
Today, with no amlodipine in my system, it was 158/111, and I haven’t had any seizures. I would rather have no seizures and high blood pressure than to have seizures and high blood pressure. Quitting that med actually improved my health. 😛
I have an appointment with my cardiologist tomorrow afternoon. I have MRIs on Friday afternoon.
I don’t want to sound like I’m unappreciative of modern medicine, but it’d be super-great if my medications didn’t cause more problems than they helped.
It’d be even better if I could just be healthy. Seriously. Any time now.
Self-Compassion Level: Critical
One of the things that I’ve had to work intensely on since being diagnosed with MS is self-compassion.
I am a ruthless tyrant to myself far more often than I’m friendly, and I’m not proud of that. I mean, really, who would make herself take the CA bar exam twice while having MS and dealing with 30+ seizures a day, and then convince herself that failing that exam is evidence that she doesn’t deserve to live? Someone who has absolutely no compassion for herself. None.
It’s the same unhealthy mindset that lets a person believe that they deserve whatever abuse they’re dished out, by anyone. It’s not healthy. It smacks of low self-esteem.
When I can’t do chores or exercise, instead of feeling sorry for myself, instead of getting angry at MS or seizure disorder, I tend to get angry with myself. It’s as though I genuinely believe that I can do anything I put my mind to, and that all I need is a positive attitude… but positive attitude doesn’t cure paresthesia, muscle cramping, weakness in your limbs, or fatigue.
When I’m frustrated and angry, I forget that I didn’t choose MS. I’ve had to acknowledge that if I hold myself responsible for all the bullshit caused by a disease that I didn’t choose and that science doesn’t know the cause of, I’m actually engaging in victim-blaming. I’m being abusive to myself.
It’s too easy for me to blame myself for things I can’t control because it makes me feel like I have some control, when I don’t. And that combo of Automatic Negative Thoughts is called “Emotional Reasoning” with a side of “Personalization” *sigh* At least I recognize it.
Keeping It Real
The truth of the matter is that I’m having a hard time grieving for the life I had hoped for and worked towards. I’m stuck in the bargaining phase. I keep thinking stupid, irrational things — like, if I eat healthy enough and I exercise enough, maybe MS will stop bothering me forever, and I can try to have a normal life again. One where I can drive a car and have a job… or even go out for more than an hour or two by myself, safely.
I see stories like Dr. Wahls or Tanya Penny or Kristen – stories of women who have, one way or another, managed to improve their physical condition despite MS, who think that if you do the same things they do, your MS symptoms will vanish. Their stories used to inspire me to make positive changes in my life, but honestly, at this point, they just make me angry as hell. And jealous to boot.
Why does it make me so angry? Because they all try to tell you that through behavioral modification (eating paleo, doing yoga, “releasing stress”), you can stop your suffering. They suggest that you can control this disease through willpower. Their points of view make you responsible for the way that MS has been ruining your life. It means that *you* are the problem and not MS.
Do I think it’s a good idea to do yoga? Absolutely. Exercise is important!
Do I think it’s a good idea to eat paleo? Yes! Eating less processed food, sugars, and salts is good for almost anyone. (Folks with low blood pressure need salt, though.)
Do I think you should strive to be stress-free? Of course. Stress is awful. Everyone should try to have less stress. In a perfect world, having nothing to do would mean you were stress-free, but not having things to do causes stress too!
But has doing any or all of those things made my MS better at all? No. Not even kind of. Not ever.
It’s like being flipped the middle finger by reality.
The Shame/Guilt Pit
So what do you do when you have first been forced to admit that you’re not in control of MS (so that you show proper self-compassion and are not abusing yourself), and then are continually bombarded by the message “You can control your MS” by people who are just plain fucking lucky?
You constantly question yourself. You try everything you can, whether science backs it or not. And when nothing makes any difference, you get to feel the disappointment of failing yourself on a fundamental level.
If you haven’t tried absolutely everything, you get to feel like you’re causing the intense, chronic pain and muscle spasms. You get to feel guilty about being cared for and guilty for whatever emotional pain you’ve caused your friends and family by simply enduring this — because no one would have to endure this with you, if you would just get on with the business of curing yourself.
So am I a victim of MS? Or do I buy into the often proudly-touted ideal that we are not victims — that somehow, magically, I can kick MS’s ass, and that I am just not doing enough to make it stop?
Do I buy into the idea that I am a knowing accomplice to my autoimmune function, or do I admit that I am being forced to deal with its fallout? Is it really a good idea to choose to take responsibility for something I cannot control by convincing myself that contrary to medical scientific evidence, I can control it? Nope. That’s delusional.
The troll in my inner monologue is constantly asking me, “WHY DON’T YOU MAKE YOURSELF BETTER ALREADY, RAE?! CLEARLY THIS IS YOUR FAULT.”
But it’s not my fault. I am not the bad guy. If I were, we’d have some idea as to why people get MS. We’d know how to avoid it.
Maybe I am an asshole for thinking that until anyone can provide repeatable medical evidence that their methods stop MS in its tracks, they should shut the fuck up and stop pretending that they have a cure. Shaming millions of people who are suffering with a frightening disease for not acting like you do is not ok. At least Dr. Wahls is doing the research studies…
If there were a real, proven way to make MS stop, I’d do whatever it took. I am beyond ready to stop feeling bad.