I haven't felt like I have much to say, hence the week and a half since my last post.
I'm holding the status quo with health these past two weeks.
I have had some little ups and downs. I've also been managing a few short outings a week. I do crash a day or so later (about 36 hrs later), but then after a couple of days, I manage another little outing.
Today I had lunch with a friend which was great...but afterwards I came back to bed in tears I felt so terrible.
A good analogy of living with M.E. is to compare energy or decent moments to money. People with M.E. have almost no money (energy) to spend. And for some reason, activity of any kind (phone call, visiting, lunch out, a bath, etc) costs 5X as much money for us as for a healthy person. We are so easily depleted. Sometimes I get sick of the fact that everything nice comes at such a great cost.
This is the week of my MRI. I feel weird about it, like if I talk or write about it I may jinx it. I'm not looking forward to it, but if it's like the rest of my medical past, the results will be normal or "inconclusive" anyways. I'm not looking forward to being jammed in a loud small tube and given contrast (re: toxic) for 30-45min. Thankfully, this time next week it will be over and that will be that.
Hey, a few short outings a week sounds great!! That is sure an improvement over where you were, right?
ReplyDeleteThe money analogy is a good one. And you are right - it's amazing what takes "energy." My mom kept leaving me messages last week but I just didn't feel up to making a phone call or spending time on the phone.
I finally called her back today - I am back on Imunovir after a torturous 1-week break and feeling like myself again.
I hope you are able to continue to enjoy your outings and are able to get outside and enjoy this lovely fall weather!
Sue
Live with CFS
You're right Sue, I am doing better than most of the last year so I should be grateful for that. I just get tired of being sick (as do we all I'm sure). I'm glad you've picked up a bit again after your crash too.
DeleteI am still in awe of your camping trip - so be gentle with yourself - i would not be looking forward to an MRI either - my grandma use to always say when i was worried about a test she was getting - "i just tell myself it won't last forever" - not a bad mantra! i agree love the money metaphor - its like we are buying Gucci but getting the knock offs! xoxo heather
ReplyDeleteThanks for the support hkd. The friend I went out to lunch has had some major health stuff and gave me some good advice "close my eyes"....simple, but I think that might help. And I read your message to me about your illness history. It sounds like you're came on in fits and starts. Hope your travel went well.
Deleteabsolutely agree with your energy analog of ME. we don't have saving bank. every bit of energy come from whatever we get from foods, and they all are instantly spent.
ReplyDeleteenergy come from foods. animals (include humans) cannot produce foods by themselves like plants, instead, they eat other life forms for foods. all these years my problem come from "foods". i also suffered a terrible "hungry" symptom which whenever i was hungry, i felt like dying. so i figure there is no other way to cure this problem except eating. so i ate a lot. now, my energy level improved.
for what i know you seem to have stomach problem. that's crucial. i hope soon your stomach function improved so you could eat more.
Thanks for the response Yun Yi....yes I do think my intestinal and eating problems play a role, however, they are only a piece of the puzzle for me I think. I also have some serious viral and immune issues (even some fluctuating neutropenia) and some significant OI. It's such a puzzle to figure it all out isn't it?
Deletehi upnorth - i thought i would answer the pancreas question on your blog so you would see it - anyways - i have always had blood sugar problems - low blood sugar if i don't eat frequently and when my thyroid was overactive i would have my blood sugar drop rapidly after meals - my body was putting out too much insulin too fast so i think i have always had a bit of a achilles heal with my pancreas - my doc in phoenix also talks about how much chronic infections "eat' they need sugar so your pancreas is working hard to deal with these infections - i think i have been dealing with die off from infections and my pancreas couldn't keep up - chronic diarrhea and a pain that i can feel my insides pulsating - obviously if it was full blown pancreatitis i would need to get more serious hospital like help - but this is more an mild chronic inflammation - i take homeopathic pnacreatin glandulars - by Professional Complementary Health Formulas out of Portland ( i am sure you can google and find them ) i have had really good luck with their products - especially their adrenal formulas b/c they aren't too aggressive - you can email me at hkdreske@aol.com if you would like a more detailed info of the route i am taking to deal with this illness - best to you and thanks!
ReplyDeleteThanks for replying Heather, I don't really know what's wrong with my gut, it's def. something....This past winter I got two major viral gastro infections which triggered some major issues. For four months all I could eat was certain blended soups, avocado, and rice crackers or noodles (white only). Since getting ill I've had intestinal problems but this was worse. After endoscopy, the Dr. diagnosed GERD, minor chronic gastritis and three very small ulcers....also IBS meaning we don't fully know. They also did a CT and had concerns about my pancreas, hence the recent MRI. I know I've have upper left abdominal pain since getting ill. I've been told it is prob. spleen due to my immune issues, that it's my stomach, that it's my bowel.....I don't know but I think it has something to do with eating. It will be nice to have all this scanning done with even if they find nothing....I can't imagine any more tests that I haven't done. I wouldn't want to take something even a supplement if it wasn't targeting the actual organ at issue. My body's pretty sensitive to stuff and it all costs $ as I'm sure you well know. Sounds like you are clear on that in your case. I'll email you and you can tell me more how you got that figured out.
DeleteHi Upnorth, I hope that the you know what (don't want to jinx it) went well. And I'll ditto you and Sue, infact nearly everyone with M.E. about talking wearing one down. At the end of the 90's when I became aware that something was terribly wrong the one symptom I didn't tell my doctor about was that my voice could wear me down, the phone and out to lunch with friends. I knew if I mentioned that I'd be put in the psych. category so I kept to muscle weakness symptoms. Well, I sure hope you've made it through last week and all is calm. Leah
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