I've been home for a few days. I've spent most my time resting. It's so nice to have my bed back. As well, while it was great to see family, the pressures and energy of visiting were draining for a person who's ill.
It was ghastly hot down south and that too, took a toll on me. The day my friend Cathy drove me to Toronto to see my specialist, as we were driving into the suburbs, we noticed a haze -almost like a cloud. At first I thought it was the humidity, then I realized it was more than that. It was clearly a haze of poor air quality. It made me feel so spoiled and blessed to live where I do. Although it's been hot here too, the air is cleaner and there is less humidity. My roommate called it "freshness" the other day.
The photos I've included here are from day trips to local sights with family. The one of the garden is my mom's "bank". My parents have a steep hill on their property and she's filled it with perennials and flowing bushes as well as little paths made from natural rocks and stones. The photo does not do it justice.
The last day of my visit I saw my specialist. It was a good appointment. It's just such a relief to talk with someone who sees 100's maybe 1000 patients with M.E./CFS a year. She's been doing it over 15 years. There is such a loneliness to having an illness that's invisible (you can't see I'm ill by looking at me) and virtually unknown to most regular GP's. I was so so sick this spring and yet my GP here knew very little about the illness and had nothing useful to offer me.
Among other things, I talked with my specialist about how with M.E. there's such a number of disturbing symptoms. I can't discuss them with my GP without presenting myself as a hypochondriac. Unfortunately, I've had some fairly significant "new" issues this year that I just sat on (and lived with) waiting to see my specialist who I knew would take them seriously. I was able to discuss most of them with her, but it may be that she can't help me too much with them, being that I see her at best maybe two times a year.
My specialist's main form of treatment for everyone is "pacing" and "rest". We talked about my inability to rest when I'm doing well. For some reason when I'm feeling decent I feel as if I want to do lots. I have trouble believing I'm really that sick (even if I was in bed feeling awful a few days earlier). I think it's a combination of things: guilt over being on disability allowance especially on my good days, my desire to be active, my ironically "high" energy personality, not wanting myself or others to perceive me as weak or useless.
Ultimately I think my specialist and I disagree that all relapses are caused by a lack of pacing. I think sometimes as M.E./CFS sufferers we can't control everything. I think we can do everything "right" and still have crashes. That being said, I am going to try to pace a bit better again anyways. When I was visiting family I was feeling decent so I threw caution to the wind and did WAY more than I should have rather than face the awkwardness of having to say "no" I can't do this or that. I get so sick of always having to advocate for myself and my need to pace and rest! Now that I'm home and ill, though, I guess I wish I had insisted on more rest. Maybe the solution is to become a hermit (NOOooooo!).
As for the antiviral, I started today. It will be hard to tell at first if it's working due to the regular fluctuations I have with the illness. Hopefully there aren't too many side effects and I can stay on it for a while and get a sense long-term if it makes a difference.
My Dr. said to be very careful not to push too hard if I start to feel better. She had a physiological reason why, but I can't remember the explanation. Only that if I start to improve, I shouldn't jump into a more active lifestyle - that I should continue to pace and rest throughout the day. As for the placebo effect (improving because you believe something will work) I don't think I will get it. I've tried WAY TOO many treatments over eight years to get my hopes up.
Glad you are home and resting with all that clean air to soak in. Love your photos. Your mom's "bank" garden is beautiful. I'm glad you had a good visit with your specialist, and hope the antivirals prove helpful. I agree about taking things slow, even though I struggle with that myself to this day. :)
ReplyDeleteI love your mom's bank. It's beautiful.
ReplyDeleteYou're not alone in pushing on when you feel better. I follow the pacing and resting 'way' trying only to do 80% and saving 20% for recovery. But if I'm in the middle of something groovy I'm not about to stop. I have boom bust cycles, they are not as bad as they were a few years ago, but they are still, very definitely, there.
I'm off to see family at the end of the week and I think my experience is going to be similar to yours. I will try and take it easy (hollow laugh).
Rest up now!
Good luck with your family visit Jo....I hope you set better boundaries than I did. I like the 80% 20% rule, it's just following it that's hard. My Dr. actually says 50% hahaha.
ReplyDeleteLaurel - such a struggle to slow things down...it's not like I'm anywhere as active as I once was....I feel like I've slowed down enough already!!!! I'll let you know how the anitvirals go.
Good luck with your new meds, I hope they give you a little bit of relief. And yes, your photos are beautiful! I didn't realize that your specialist was in Toronto. I'm just about an hour and a half from there, however I'd have to pay out of pocket because I have US insurance. It's good to know there's someone competent in this condition so nearby just in case.
ReplyDeleteDo you have AC to beat the heat whilst you wait out this flare or are you in an area where it's not that muggy and hot?
Have a restful week!
jenji
I disagree with your specialist that we can 'pace' ourselves to a good place. I just don't believe that. I can pace perfectly and then rash because the weather has changed which caused the barometric pressure to change and which then lands me in bed.
ReplyDeleteThere are just too many variables outside of our body and inside our body (emotions, bugs, etc) that can negatively affect our good days or bad days.
I'm glad you had a good visit with your specialist and your family. The garden is very lovely as well.
jenji, sounds like you are close but I think she takes only people from Ontario....Do you have a decent Dr. where you are?
ReplyDeleteDominique, I probably misinterpreted her a little. I know she believes infections, toxic exposure etc. can trigger relapses. It's just she's had good success with improving people through pacing (although she doesn't believe it is a "cure"). While I agree in pacing I also think with me I need to learn to "let go". I'm not sick through my own choice and even if I live a perfectly paced existence (which I have for certain periods) I may still have ups and downs.
Sometimes internal forces like illness or external pressures like family/kids cause our pace to slow down. Whatever a person's diagnosis, it can be very difficult to change the image of how he/she expects to be able to operate in the world. It takes time to accept not only the diagnosis, but the energy conservation techniques as well. Energy levels can suddenly change; you are in a body that is different than you are used to. People at both ends of the ability-disability spectrum need to implement energy conservation strategies to maximize functioning. The principle of "conserve to preserve" applies to any disability, even those with "invisible illnesses". No one but ourselves can ultimately control rate of our own pace. We are the gatekeepers of our nutrition and energy output.
ReplyDelete