First off, I want to apologize. Not because there’s necessary anything to be truly sorry for, but because I have created this space for you to better connect with me. This space where my story and experience can exist, and I’ve been absent.
I’ve been absent since May, and although I’m proud of shifting to learning to love life and for digging deep with my piece on impostor syndrome, I’m not proud of much else.
I’m really good at suffering alone and deciding that my emotions and my thoughts are something that I can handle.
I was also really turned off from writing due to some very complicated guidelines regarding the lifestyle program and to be very plain, I was convinced in sharing my progress related to the program or not, I could lose this very space I’ve come to cherish so much.
So, I’ll admit. I’m not doing well.
In June and July I had roughly 6% of my days in severe pain (June having no 9/10 pain days, July having 1, the other % consists of time at level 8 pain).
May to June saw a drop from 45% of the time being above or at my pain threshold (7-10) level pain to a shocking 33%. This, I attribute to cutting out my abortive medications and adjusting my breakfast to aid in my stomach pains.
This percentage increased to 35% in July, to which I attributed it to the stress of moving and being in a new environment. July also saw a dramatic increase in my moderate 5-6 level pain.
But as I look at August, sitting here in writhing pain, I see this percentage is roughly 39% and is subject to go up or down over these last few days of the month. Unfortunately, the large increase responsible for the spike, comes from my severe pain days almost doubling.
I do absolutely want to interject and mention that last October this percentage was well above 60% and I don’t want to diminish the progress I have made, but rather acknowledge that some of my worst months came from adverse reactions to medications (like October and earlier this Spring). Being under 50% is incredible for me, however I am still well within and incredibly above the range of being severely disabled by migraine.
Now, many of you know I am a firm believer that set backs are often just speed bumps in our journey, except from here it’s hard to truly accept that framework.
If I wanted to talk about speed bumps I could talk about meal planning. I could talk about cockroaches. I could talk about being allergic to CBD oil. I could talk about bumping my follow up appointment with my neurologist back over a month because I was afraid to Uber to my appointment. I could even go so far as saying overcoming nausea but having a new annoying eyebrow twitching symptom, is a mere speed bump.
But this month, is a setback.
Of course I’m learning, but you see there’s this idea that we’re supposed to learn from everything that happens to us in life and honestly I’m a little over it. I’m done making extra charts and connecting thousands of dots that point me to no new direction.
This month, I’ve found more walls are being walked into. I’m more unsteady when I walk.
Last week I collapsed. I talked about collapsing over a year ago when it was more regular and the exhaustion would just over take me because I was pushing myself too hard. But am I pushing myself too hard now? It had come out of the blue. I’d been feeling really great and was met with the stress of dealing with my landlord and the exterminator. And suddenly I was sweating and couldn’t eat. Within an hour, the sweat had turned frigid and I was as cold as what I’d image frostbitten limbs are like. I couldn’t even move. I had to brace myself on my counter meeting with them, and spent the next few days recovering.
Most days I’m in excruciating pain. My hair is beginning to hurt all the time again. Brushing it, putting it up, tying it back in a braid… hurts. The constant painful tenderness has returned to my face and my neck.
And I can point fingers all I want.
I can say the heat is getting to me. That 100 degree weather and constant thunderstorms are taking their toll.
I can say my move finally caught up to me.
I can say money is causing stress. I mean hell, I found out I’ll be getting Medicare a whole year early but its over $100 more expensive than my current insurance and I’m required to opt into it.
I can say that the continued push from those around me saying I’m destined to do all sorts of great things is getting to me. Some of us would really just kill for an office job that paid the bills that we could go to consistently.
I could say I’ve stressed myself out trying to market different things like my art. I can even say I learned from this one that it’s incredibly clear that whatever the future holds it will not include marketing myself because I just honestly hate it.
But pointing fingers doesn’t get me anywhere and looking at any one of those factors won’t improve my health. I can’t control the minimal funds from social security, that issue is much larger than me and I’m fortunate to have been able to work prior to my disability so that I can collect SSDI rather than SSI. I can’t control the weather. I can’t control other people’s thoughts. And what I can control – myself and my responses – are actively being worked on day in and day out.
And I truly just have to focus on the day to day. On getting up, enjoying my coffee, eating all my meals, and not ending up in an emergency room.
In June, my goal was to get moved out into my own space and from there judge where to go next in the Fall.
With Fall approaching, my goal is to take it day by day. My goal is to have brunch with my best friend for her birthday and yes even have a mimosa that’ll cause me pain. My goal is to find just one thing I can do for my birthday, even if it’s a private bagel and lox bar all to myself on my kitchen island. My goal is to finish The Stand by Christmas.
I will not be seeking employment, I can’t.
I will not be seeking further education, it simply doesn’t serve me.
But I’ll be accomplishing my goals and learning about exactly what I want life to look like and slowly creating that life. Because although no one wants my life to look like endless pain, its been 1244 days and the truth is, this ugly part is a part of whatever picture I create.
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