Methotrexate on Friday. Did nothing on Saturday like usual, but was able to sit up and have dinner with the family.
Sunday felt like crap, as noted.
Got into it with my husband regarding my overall plan of care and “where this is heading”.
He attended one doctor’s appointment with me last week, pulmonology, and I have no evidence of disease in my lungs. And as noted, this doc even questions my entire diagnosis. To him, if I have no evidence of disease in my lungs, I don’t have sarcoidosis.
So to my husband, who has a plethora of other issues going on right now, I should be doing other things for my health. Seeking out a second opinion, seeking out some other treatment other than the methotrexate. Exercising (ha!). Supplements. Witch doctor?
I have been a nurse in a western form of healthcare for nearly 10 years. It is very hard for me not to follow the traditional western form of healthcare. Yes, I have seen a naturopath a few times in the past year. I stopped taking the herbs she suggested when I essentially relapsed in mid July. I didn’t want the herbals to interact with the impressive list of other medications I currently take. And I know that she would tell me to stop taking the steroids and methotrexate.
It is just so difficult to make these decisions. This is my vision. My future.
So I overdid it yesterday. Probably to prove that I can.
I cleaned the kitchen. I folded laundry. I took a shower. I made the bed. I helped to cook dinner. I made cookies.
That might not sound like much, but to someone who just took a dose of chemotherapy less than 48 hours prior and was still walking around feeling like she had lead in her limbs, all of that was quite an accomplishment.
And today I slept until 1 pm. And got a migraine. And had horrible chest pain for about 20 minutes. And no appetite.
But I did the dishes and cleaned the stove. And made the bed. I drew the line at finishing the laundry and making more cookies (my daughter is on a baking trend).
As I do feel better as compared to last week, I still feel like shit. In my head, I can do all of these things. And then I go to move and I’m reminded with pain or an actual inability to move. Yeah, I sent out that little signal in my brain “right arm…move” and nothing happens. Or it happens, but not as fast as I would like. And against extreme resistance.
With the fibro diagnosis, I had to learn to live in a new reality with limitations on my physical abilities from normal to subnormal. For example, I couldn’t do what normal people with normal stamina did. I learned my limits over time, and it took around 3 years for me to get that down to a science. I learned that I can go shopping…but my limit is between 2-4 stores before I have to go home. Or around 4 hours. If I had an all day type activity planned, i.e. concert, amusement park, wedding, travel, I knew I would need the next day or two to recover. I had to constantly think about how much activity I would be doing and how I would feel the next day.
I also learned the value of “emotional energy”. Stress and emotional issues can exhaust me just as much as physical activity. I improved greatly when I left my ex husband. I was able to return to work full time, something I wasn’t able to do since my diagnosis (almost 4 years at the time). I am now acutely aware of how to spend my emotional energy and I jealously guard what I choose to spend that on.
With this new diagnosis I am debilitated further. It feels like I have taken another step down the disability ladder. Currently I am home all the time. I usually don’t have the stamina to drive longer than 10 minutes. Grocery shopping longer than 15 minutes is unheard of. But I’m able to do more with each passing week.
I just don’t like this limbo period. I seem to forget that it took years for my fibro to get to a stable position to where I could predict it. Even then I was caught off guard at times when it would flare up.
So I learned a few lessons yesterday, or relearned:
- Don’t over do it.
- Don’t try and hurry up and get things done just to prove that you can.
- Take frequent breaks when doing activity so that you can complete that activity.
- If you can’t do it, you can’t right now.
- The world isn’t going to end because laundry isn’t folded.
I’m supposed to be thinking positively right?
Well, I didn’t eat all the peanut butter cookies today. That’s a small victory.