I haven’t touched this blog for……well, a very, very long time. Major self-pity alert for this post. This past year and a half have been utterly brutal, taken me to my knees. I felt on top of the world back in 2020. In January 2021 I began to feel unwell. And things spiraled rapidly out of control throughout that year and then into this year as well, continuing as of this day.
Out of nowhere, so it seems, a rare neuromuscular disorder called Myasthenia Gravis knocked me on my ass. Seriously, it came on so rapidly and I had no idea what was happening to my body. Let’s just say it is a very seriously disabling condition where your brain fails to signal your muscles to move. My facial muscles included – so I had symptoms that were stroke like, which sent me to a neurologist. The only “positive” is that it was able to be diagnosed quite rapidly. My symptoms came on so fast and so severely I had an abnormal neuro exam and that was that.
Then, quickly on the heels of that, my malaise and fatigue were so bad after a metric crapt ton of testing, I was diagnosed with heart failure. Which has nothing at all to do with the MG. I have NONE of the risk factors for heart failure, zero. So to say this was shocking, a complete blow, is putting it mildly.
It took at least 6 months of trying a bunch of meds to get the MG semi-sort of under control. I have to have plasma infusions every 3 weeks. The heart failure is not curable, only “managable” with drugs that have to be tightly controlled.
My former vibrant life is over. I am now 99 percent housebound.
I really despise the term “chronic illness,” it’s just such a depressing thing.
There are a million “communities” on the web having to do with it. And I’m going to be honest, a lot of them don’t really sound too horrible to me. There are so many vague “I just don’t feel good” ones out there, with these self-professed “warriors” almost just reveling in making it their entire identity. I feel like I’ve got one of the worst cases out there. I really do feel that way, and it makes me angry and bitter. The running theme of 99 percent of these communities include the term “WARRIOR” as in fill in the blank “chronic illness” WARRIOR. If you have fight enough in you to go to war with whatever you’re dealing with it, you don’t know true brutal suffering.
That “I’M A WARRIOR” mentality sounds so incredibly smug to me. You can’t defeat severe illnesses like these with the attitude that it’s a “war.” And that you are a heroic warrior. You just can’t. When it’s this severe it has you in a death grip and to have the audacity to think you have any control over the havoc it wreaks on your body, on your life, is the height of hubris. It’s laughable.
I am not a warrior. I’m a victim and I really don’t give a flying f**k how grossly pitiful that sounds.
The thing is, I will have to come to TERMS with being a victim of these diseases. I will have to come to a place of acceptance that my life has completely changed. I will have to make peace with the fact that no, I cannot “fight’ them. I can, however, learn to LIVE with them. To somehow accept them and accept my new normal (I despise the term “new normal” too, but it’s apt, I confess).
I’m nowhere near that. I keep thinking “surely this will get better,” but if you know anything about the diseases I have, the stats say “LOL NO.” I’m disabled now. It’s just a fact.
I am not a warrior. I have no “fight” in me, only the tiny spark of hope that I will learn to live PEACEFULLY with my life as it is now. To fight it like a war would be insanity, that sounds absolutely awful, what a horrid way to live, like you have to fight fight fight.
No, I’m not going to “fight.” I WILL, however, find someway, somehow, someday, to come to peace with this.
It’s that or wallow in my self-pity, resentfulness and bitterness forever, which I do not want.
However, I’m giving myself the grace to feel that way for now. I think it’s perfectly understandable to feel that way given that my life as I knew it was decimated within a few months, absolutely destroyed. What human being wouldn’t feel the way I do about it? It’s okay, I can allow myself to feel like a victim for awhile.
One thing I do know, and this keeps me going, is that there is not one human being on this planet that doesn’t have some massive cross to bear. It could be mental, physical, financial, relationship-based – no one lives their lives without some massive mountain of pain they have to navigate at some point.
This just happens to be mine.
I’m not alone in my despair, it’s just that MY despair is physical disability. And you know what? I have an amazing marriage, amazing kids, no financial difficulties at this time (that was a cross to bear for many years, but not now at least), no relationship struggles. I’ll honestly take physical disability over those kinds of agonies. I truly will.
And that gives me hope that one day, I WILL come to peace with this. And if I see one more blog, one more social media account, with someone smugly proclaiming they are a ‘WARRIOR’ against their illness, I will vomit. Good luck fighting fighting fighting versus coming to a place of peace.
I did warn at the beginning of this post that it would be a massive self-pity fest, and so it is. I acknowledge it. I accept it about myself. It’s okay to feel this way right now, all of this decimation of my life is still brand new to me, I’m still in mental/emotional shock right now.
But recently there is a spark of hope that one day I will come to peace with it all.
This post is honestly just for me, I almost hope nobody finds it. I needed to get it all out.
Here’s hoping my next post will be something positive. Here’s hoping I will return to this blog and it can be a part of my emotional and mental healing. The fact that I have a tiny tiny bit of hope at all right now is a miracle in itself, so I’ll cling to that.
Onward.
Yellow Spiral Notebook 