I finally saw my Primary Doctor after a three-month hiatus. My faith in doctors is renewed anew (is that redundant? Even if faith is renewed more than once?). She is a GREAT doctor. She’s a family doctor with no specialisation in any of my issues, but she seems to have knowledge of so much across the board ~ and she cares, which is more important. After our appointment, she wrote me a long email which was so thorough and thoughtful that I almost want to post it here.
Our current plan is a two-week “wash-out” period to get a new baseline of my symptoms. I’ve already gone a week without the supplements, now I’m going to go two more weeks without vitamins, medications (except inhaler, fiber and colace), acupuncture — everything. She also wants me to consider adding back in all foods during the wash-out period, but I haven’t decided on that yet. If this diet is helping with inflammation, I don’t want to stop it. It’s repetitive and gross, but I’m probably eating better than I ever have in my life.
During these two weeks, my doctor is going to do some research into the best drug options for CFS patients, so we can have a new plan going forward. It’ll probably be something like elimination diet, coupled with adding supplements one-by-one, then adding medications and probably the Chinese herbs. I impressed upon her the need for a painkiller option first and foremost. If I can’t take away pain, I can’t function and, it turns out, the quickest way to send someone who has had no recent trauma or loss in their life into a deep depression is to give them chronic pain with no source of relief.
I went to acupuncture yesterday and the Good Master said that he would have expected a positive change in some area by now (after three sessions). Not only that, but, because of my crushing headache after our last session, he wanted to hold off on needles lest he aggravate it more. “It” being the pathogen — the Dark Yin. Instead, he did moxabustion, where he burned mugwort – a herb – over areas of my arms and legs to influence qi and blood flow.
My husband couldn’t drive me to this appointment, so I drove for the first time in 19 days. The first horrible thing that happened was I realized just how bad my brain fog has gotten and how diminished my concentration and cognition are. This symptom was not one that bothered me too much during the first ten months of this illness and, when you’re alone and quiet most of the day, the loss of your words/ multitasking ability isn’t quite so salient. The upshot is I shouldn’t have been driving and I won’t try again any time soon. I had every drop of my concentration focused on the road. I had to think about what the red light meant and go through the driving steps in my head: blinker on, check blind spot, change lanes, blinker off, check mirrors… Basically, driving like I was taking my test at the age of 16. The worst part was I went down a one-way parking garage ramp the wrong way on my way out of the acupuncture building. One of those spiral ramps. The parking attendant said, “You almost hit her!” about a lady coming in. But I didn’t. I DID almost hit the side of the spiral ramp coming down. Just get me home.
The second horrible thing was, as soon as I pushed in my clutch, I felt something happen in my back. A body deconditions very quickly. Muscles lose strength and flexibility no matter how careful you think you’re being to keep moving each day. Driving the car is physically very difficult. I never knew that before. And when I got home, my lower back grew worse and worse until it was about the third worst pain I’ve ever had in my life. It was about an 8 out of 10. I couldn’t get up and down by myself, I couldn’t walk unsupported. It was all-encompassing and made me acutely aware of how much worse things could get. Thank you for showing me the light, oh wise all-knowing Universe, I need to be grateful every day that my back isn’t tweaked. Please give me back my normal M.E. pain! I gave in and took a quarter Norco. It gave me relief for about an hour but my breathing all night and all today is even tighter. I hate feeling like I am having a 24/7 asthma attack. It is scarier than you can imagine. I can’t seem to figure out what makes it better or worse. Is it the dogs? The dust? Is it this terrible allergy year? Is it the Norco? Does the inhaler make it better? Kinda. I’m not wheezing, not rattling — it’s just tight.
So, now we’re back to the wash-out period. I’m going to try to bear all pain with no painkillers of any kind. And it’s good because last night just reinforced that an hour of relief from Norco isn’t worth days of respiratory depression (there’s that word again).
I obviously did not do my walks around the house the last few days, but I will take them up again with renewed commitment once my back heals. Being breathless from walking to the toilet and unable to push in a clutch has scared the shit out of me. I need to save some semblance of strength or I will never get better.
I get to see one of my brothers tomorrow after more than a year. I am grateful for big brothers. They were my first teachers, my first inspirations. They taught me about music and humour; they toughened me up and protected me. They are the most grounded and real people I know. Plus, they gave me nieces and nephews. I’m grateful for them, too. 🙂
Take care of yourself. No matter how little you think you are doing, you probably are still not doing little enough. That is a lesson that I am still trying to learn as well. If I am getting worse or having symptoms at rest, then I am doing way too much. If I am getting better, then that amount of activity is probably okay. It’s a supremely difficult thing not to push too far in the moments that everything seems to be doing okay.
I had a couple of horrible experiences trying to drive too, those last times. Whoops. I’m glad you made it home safely, if suffering for it.
Every time I read one of your posts, I feel like your story could be mine. I had to stop driving 3 years ago after driving myself to a doctors appointment and realizing how unsafe I was to be driving. You are so lucky to have found a doctor who is willing to listen and educate herself on this horrid disease. I moved to the Seattle area about a year ago, and when I told my new Dr. about having M.E., her response was “I don’t know anything about that, do you need any of your medications refilled?” End of visit. She didn’t even want to hear anything about M.E., much less learn about how to go about helping me. I haven’t seen her for 9 months, not only because she is so unhelpful, but I’ve gotten much worse to the point I am too ill to even go anywhere. I really need help getting better, but yet am too sick now to make it out the front door! I was hoping you wouldn’t mind sharing the name of your doctor as I really need someone who can help me (even though I don’t even know how I would make it there.) Thanks for sharing your story, I hope you are feeling better soon!
God, Kari, I am so sorry. I think I sent you a private message with all my doctors’ info. I hope you got it. Keep me posted on how you are doing and if you are able to make it to an appointment. I’ll be thinking of you!