I have so much to say and nothing to say. I have never been so emotional in my life and never been so numb.
Quick recap: while having a “good day” last Thursday, I met with my old bosses, went to a two-hour doctor appointment and walked around the dog park for an hour. For five days afterwards, I was in extraordinary muscle and bone pain, had crushing headaches, could barely move, couldn’t stop crying and have had night sweats every night. Last night I took a quarter of a Norco and it took the edge off the pain. A quarter of a pill! People take, like, ten of those a day. I don’t get it.
After researching the number of cases of M.E. that are significantly worse because of enforced exercise or the patient pushing themselves, I am hanging in this limbo of fear. Fear of unintentionally overexerting myself and setting back my recovery permanently. Can I not go to the dog park? Should I not be talking on the phone? Should I stop people from coming to my house? Because the second I feel better and the pain eases up, I want to do things. And by “things” I mean take a walk, try cooking a meal, fold the laundry, play with the dogs. And what if I try drugs that make me feel better? It’ll be even harder to refrain from activity. God forbid my pain is taken away and I walk upstairs too quickly or laugh too hard. I’m also in fear of losing all muscle mass, all flexibility, all joint movement, and, scariest of all, fear of irreparable damage to my bones. Years ago I was diagnosed with osteopenia in my hips after a bone scan. I think it was 0.1 point off putting me in the osteoporosis range. They told me to take calcium, vitamin D and do weight-bearing exercise. Did I do any of those things? Nope. I started taking vitamin D about 6 months ago, I still don’t take calcium and now I’m not eating dairy and I’m unable to do weight-bearing exercise. Or cardio, obviously, which is sorely needed, since I’ve never done cardio workouts. My job was my exercise ~ running around restaurants ~ and yoga, too, back in the day. I’m also in fear of the drugs that might make me feel better. I don’t want to try 20 antidepressants to find the right one, I don’t want to put on 30 lbs from Lyrica or gabapentin, I don’t want to feel groggy and crazy from sleeping pills, I don’t want to deal with weaning off and withdrawal symptoms… But, most of all, I’m terrified of an allergic reaction. Having experienced anaphylactic shock, swollen tongue, not being able to breathe, syncope, headaches that feel like you might die, low pulse etc… I know how scary it is. And I hope I never have to use my Epipen because I HATE epinephrine. It feels like I’m jacked up on speed and not in a good way. It feels like it stops my heart and then zaps it back at 5 times the normal heart rate ~ I won’t even let them use it at the dentist, I’d rather have a 100 injections in my gums than just one with epinephrine that’ll keep the anesthetic in my body. Finally, despite my 8 commandments, I am in fear of being home-bound (not homeward-bound, big difference. I wish I was…) for the rest of my life and losing my mind. Or, worse, being drugged out of my mind and my husband having to take care of me and losing his mind. Or, worse, getting worse in this disease or another disease or getting a cold or a chest infection or food poisoning or any of the millions of things that could make this so. much. worse. … and not caring anymore whether I even have a mind to lose.
So, my doctor appointment today. I had a physical and a stress test. They told me to fast for blood work, which turned out not to be necessary. I don’t know about you, but, not having my tea and breakfast in the morning messes everything up — and now that includes my supplement schedule — so, I was not functioning. I was shaking and achy and cold. My blood pressure was 84/60, my temperature was 99.4. A doctor finally touched me! He poked and prodded and said my labs looked fine (cholesterol, liver). Shocker. He wanted to do X-rays of my spine but I asked him to hold off because I have had a LOT of radiation lately and in life. He referred me to a neurologist and a rheumatologist (more doctors, yay) and gave me an Rx for Ambian CR and Lyrica.
I said, ” You’re starting me at the lowest dose of Lyrica, right?”
He said, “Yep, 75mg twice a day.”
I said, “If there is anything lower, PLEASE start me lower.”
He said, “Ok, 50mg twice a day.”
I said, “Ok, 50mg once a day.”
“Ok…50mg once a day to start with…at bedtime.”
“No, in the afternoon so I can monitor the effects.”
“Ok, fine…to start with. See me in a week so I can see how you’re doing on the Lyrica.”
“See you a week after I start the Lyrica?”
“Yes, which will be in ONE week because you’re starting it tonight.”
“Don’t count on it.”
That’s the exact conversation. I then went to do the stress test. They hook you up to electrodes and put you on a treadmill. It took about 45 minutes to get to the standing on the treadmill part. For fuck’s sake, I don’t care if you see me take my shirt off, you don’t have to explain everything in minute detail at a snail’s pace, I know what an electrode is, I know what a heart is, I am freezing and hungry and I’ve had no tea and I need to get home and sit down, hurry up! Here’s the sad part, I walked at 1 mile an hour for 2 minutes. It felt fine, like being at the dog park. Then she increased it to 2 miles an hour. This was fast for me. I don’t walk this fast since I got sick. I did it for 2 minutes and then the incline increased. I was fine, but starting to get worried about the repercussions. My thighs started to burn, but I was fine, it actually felt good. Burning muscles! What I would give to work my muscles so hard they burned from the effort and the next day I would be sore and think, “I had a great workout.” But, after the past 5 days, I was so scared of what this atypical movement would do to my body. The fear of tonight, the fear of no tomorrow. At the 6th minute, when the incline went up again and I really wanted to push myself, see how high my heart rate could go and feel my breath quicken, I quit. I felt okay, I felt I could have pushed through. I probably even could have run briefly, but I was too scared of what it would do to my muscles and how it might set back my recovery. The monitor moved and blipped steadily with my heart… But it didn’t show it breaking.