I had it all under control. After coming down with a virus (mild flu?) in January, I got the message and seriously scaled back my activity. Joe Landson, Denise Lopez-Majano, and Claudia Goodell all came through for me in a big way, and shared tremendous guest posts to give me time to recover.
It took close to three weeks, but I clawed my way back to what my friend Trina Berne calls “Normal Shitty Baseline.” I felt my brain waking back up, and was able to start cooking dinner again. Then earlier this week, my husband came down with flu-like symptoms plus sinus infection symptoms. He went on Tamiflu and antibiotics, and while the drugs have helped, he has been pretty sick and miserable all week.
I bet you see where this is going. My nasal congestion and sore throat returned yesterday, and I woke up at 5am with a fever. Now I’ve got a call in to my doctor to see if I need Tamiflu. Because really, this is exactly what I needed to happen now. NOT.
What’s weird about it is how different this is from my usual ME/CFS pattern. For most of the last 19 years, I haven’t caught upper respiratory infections very easily. My husband gets several a year, but I almost never catch them. I know many patients are susceptible to any infection that comes along, but I seemed to be in the category of patients who were not. I always attributed it to a heightened immune response connected to ME/CFS.
Catching two bugs in a month is extremely unusual for me. It could be random chance, of course. But as with most symptom changes, I always wonder: is my ME/CFS changing? Is my immune system starting to break down after almost two decades of illness? Will this be the new normal?
Hopefully, I won’t get as sick as I did last month. Hopefully, I’ll be able to follow through on some of the posts I have planned for March. Hopefully, this is just a glitch and I won’t be dealing with fevers and congestion all the time.
Because life with ME/CFS can be miserable on a good day, and dreadful on bad days. Because I hate being held hostage by my body. Because I am already so limited by this disease, I resent the hell out of anything that limits me more. Because I would rather be writing.
That sucks big time, Jennie! The advocacy ‘forced upon us’ takes its toll.
Like you, up until now I have ‘missed’ picking up the bugs out there. If I am feeling ‘worse’ I wonder if I am getting a ‘bug’ or if the ME/CFS symptoms are up. I have opted to continue to get the flu shot because once, years ago BEFORE ME/CFS when I was working in the schools–I did get one of the awful flus–a HORRID experience I don’t want to repeat on top of ME/CFS. Flu shot ever since. BUT NO shingles shot—it is a live virus—Internist doc now says NO to shingles shot with ME/CFS—patients worse with shingles shot.
Truth be told, and I DO have a positive demeanor–honestly, I don’t consider ‘any day’ a good day with ME/CFS because the body always feels so rotten–and then worse from pushing ‘to do.’
Please take good care, Jennie, to get back to that ‘normal shitty baseline’–we know full well what you mean–take it slow and easy. Your body will be especially vulnerable right now.
Wishing you well along with the other advocates out there that are also suffering from the extra pushing.
Thank you so much, Ess! I always get a flu shot for the same reason. I am “working hard” at taking care of myself and resting.
I’ve had the flu twice this year! Every single person I work with has had it and my family. It is the most rampant ,since 2009, that I can remember. I can’t get the flu shot due to allergies. I got the flu on January 1st just like your husband the first time around. Now I have the full blown stomach flu with aches, chills, fever and stomach pain. I feel like I should just live in a bubble during the flu season! I empathize so much with you. So very sorry. I hope you get better soon.
Stomach flu is the WORST! I’ll take sinus congestion over that any day. I hope you feel better soon!
I am so sorry to hear this description of your sickness on top of sickness. The extraordinary time, attention and lucidity you bring to the ME/CFS community despite these awful challenges is quite moving. Working toward health with you in mind….
Thank you, Carol. This is so kind of you to say.
I’m with you on this one, Jennie. I’m going through something similar after only 8 years of being ill. For the last 8 years, I’ve caught almost nothing at all, or if I got symptoms, they’d be mild and exceedingly short-lived for a virus (usu. < 24 hours). This past winter, I've had one clear-cut cold, and some rather suspicious coughing. They've still been fairly short-lived, mind you, but the fact that I've gotten them at all is unusual. For now, I'm going on the belief that this is just random chance, but like you, it always makes me wonder….
My immune-to-everything stage lasted for 5 years, then I shifted over to catching everything that was going around. I think I remember Dr. Levine, my CFS doc, saying that was typical for people with ME/CFS. The good news is, the shift did not worsen my health in any other way (except, obviously, for the time spent coughing, hacking, sneezing, and feeling even more like death warmed over.) I hope that is also your experience.
I had a bad bug of some kind for weeks: chills, fever, dizziness, felt I’d fall down when I stood up. In fact, I went out, felt lousy, fell and broke my arm. Frustrating is the doctors at the urgent care facility looked at me without connecting when I said I had CFS and felt awful the day I fell.
But I had an additional virus for weeks, just recovering. Finally I don’t look like a ghost.
So, I sympathize.
And I can’t get a flu shot — got one years ago and got very sick with a high fever for three days, then too weak to go out for a month.
But I’m glad to know about the shingles shot, which I’ve said NO to when asked.
Hi Jennie,
Commiserations on the latest round of illness. This winter in the UK I was exactly the same. I figured it was because last year I hadn’t had a flu-jab for the first time, but I don’t know if it was.
Like you I seemed for 10 years or so to not pick up these seasonable woes – even without the jab – but this time round it hit before Xmas and then again just as I was coming out of it several weeks later.
Did the same with my Mum who has Rheumatiod Arthritis and hit Dad hard, but unlike Mum and I, he didn’t get it the second time.
It’s been very mild here so far. No cold snap to speak of. Nothing to kill of the bugs really, and it seems they also seem to occur around the time people switch on the central heating.
I hope if the doc prescribes the Tami it will help – though I didn’t think they did then with an active infection (but what do I know – lol).
Good luck with it all. In a wierd way I did quite enjoy my time with the flu. Because unlike my ME at least it was more visible.
Then I am kinda strange 🙂
No Tami for me. You have to start it within two days of starting symptoms, and I was nervous about it last night when my fever spiked. But this morning, I don’t feel any worse than yesterday morning. I hope that’s a good sign.
I was going strong too also… then I just relapsed and it is over six weeks… HANG IN THERE…
Kisses from Italy, Francesca
A few years ago when my “NSB” was higher than it is now I came down with a bad head cold. I was worried that it was a relapse, but then I realized that I still had some energy. I was sick, but not SICK. I remember being in the grocery store shopping all by myself (a big achievement), feeling all sorts of smug that I was just really miserable -but not road kill. Woo hoo! This is how Healthy people get sick! I thought maybe I was on the road to recovery. Bleh. My baseline is slowly deteriorating and it really sucks. I just have to take one day at a time or it can get overwhelming.
@Catherine K
I mean that **if** (heaven forbid) your immune system has shifted, I hope it does not affect your baseline (sorry, brain fog struck again.)
Jennie,
First let me say I haven’t been hospitalized since the first time I got this disease/in my 20’s. The things that happened to my body…it was not pretty. After yrs and yrs it left me.
Fast forward 30 yrs. later it came back for a visit. No sickness in that 30 yr break, none, no colds, no flu.
Going on 8 yrs of second bout. But I know a lot more now.
Same happened to me. Twice, last year, two months apart, two hospitalizations-5 and 8 days respectively. Different state, different doc, each time. How lucky is it to get two docs that actually care? lol..but it happened. Here is the jist of what they told me. My immune system is breaking down. While it is not as important at home, both recommended serious hand sanitizing when out in the community. Also for folks who come into my home. It has been 6 mos. so far so good. I have also upped some OTC vitamins.
When it comes to this illness “anything” can be “anything”. When my husband comes in every day, first thing he does is wash and sanitize his hands.
I live with pets, so rather than find out the hard way, I sanitize my after handling them to.
Most folks, even though they do this every day..if they do not have a serious chronic illness do NOT need to do this hand sanitizer thing. But WE do.
Hope this helps someone.
Thank you for all you do for us Jennie
Regards,
Carol Ann
Thank you, Carol Ann, great advice. I stepped up our home/hand sanitizing a couple years ago after a couple stomach bugs. We’re pretty careful, but not perfect I’m sure.
You have this blog so well organized, and I hope I’m writing this comment in the right place. When my ME/CFS is exacerbated, somehow my ability to write comments in the appropriate places goes out the window. But I’ll write this here.
On Saturday I went out for the first time in weeks to an actual event. I’ve had a broken arm, which has made it harder for me to do anything outside of home. I was outside for six hours. Much of the time I sat down. Then I stood for awhile intermittently. Then I went to dinner with friends around the corner from my apartment building.
Walked home with a friend, stood and talked to her for a few minutes. Then my legs started shaking. Does this happen to other people with this disease. (This happened to me about four months ago when I began to clean my oven for the first time in years. My legs and arms began shaking, I got dizzy. And then I dropped things because my arms were shaking.)
So the leg tremors have happened twice. I am worried my own baseline is worsening. It also means I can’t be outside my house for six hours even if I’m seated most of the time.
Kathy, trembling or tremors happen to me when I’ve pushed way too far. Electrolytes and fluid help me. It’s so frustrating to pay such a heavy price for getting out of the house!
On more weird thing happened to me on Monday night. After spending hours at my computer looking for photos and text on an issue, and finding it very late, I went into my bedroom. Suddenly, I saw bright neon color geometric patterns, the same one, like a octagon with jagged edges. It went on. i took my glasses off, still happening, went into another room, still happening. I had been on the computer, then watching TV. The pattern and colors kept repeating.
I looked up migraines, and the blog said they can have auras as I describe, without pain.
This went away after 20 minutes or so.
Any ideas on this?
Kathy, look up ocular migraine. Those typically occur without pain, I think.