Good morning–It feels that way here…a morning that is “good” …following a string of day beginnings that I can’t remember. We conjecture, my husband and I, that I have the flu (seasonal? H1N1? I do not know).
We conjecture rather than know, because living with ME/CFS/FMS is much like having the flu everyday. There is pain, there is exhaustion, headaches, weakness, dysregulation of body temperature…that go with these illnesses. It is hard to tell that something isn’t a worsening of symptoms, a “crash” or “flare-up”, but is instead is a “normal people bug”.
In my memory the past days are blurred…my husband reminds me that I’ve been in bed, rather than on the sofa or recliner, that I haven’t been riding my waves…rest, get up and do a little something, rest, get up and do a little something…Instead it’s been a rest, get up and try to do a little something, rest, rest, rest, rest. The headache I had was different from the headaches that I normally deal with. I have a sore throat, which isn’t a usual symptom for me (though I know it is for some).
It is hard to tell by stomach symptoms if I have the flu, because Gastroparesis mimics it. It causes nausea, vomiting, stomach pain, and a need to eat foods that one eats when they have a bug, like white toast. Irritable Bowel Syndrome which is also a part of ME/CFS/FMS blurs the flu line too (I’ll spare you the details).
Sometimes it is when my child or husband gets the flu, soon after I’ve had a week like this past one, that I know for sure whether I had it. Crossing my fingers that isn’t the case this time.
Another sign for me that I have a bug, is that I don’t want to ride along on an errand for days on end. Usually I will, any chance I get. Even if I’m pretty darn sick, I’ll take medicine to help me ride along, just to get out of the house and out into the world. I imagine it’s a bit like a caged birds response to her caretaker opening the door and beckoning her out for a short flight. Hard to pass up.
I need to rest this tiring brain of mine now. It too has been struggling more than normal…tiring more quickly, beset with pain following even a short “thinking period”. Is it because I have the flu or because I’m in a “flare-up”? Again, I don’t know.
I’m glad for the ability to get out of bed this morning and to write a bit. I hope this means I am starting to get over the flu…but it could mean, I’m just having a better early morning in the midst of a “flare-up”. Either way, I’m happy to have had this good start to the day.
Oh, Kerry I am so sorry you are dealing with this now…hope it resolves quickly. It is so hard to distinguish the difference isn’t it between the regular flu and a CFIDS flare…Sending gentle hugs your way for a swift recovery and better days ahead!
I’ve been badly flared up for the past two weeks,too. For me, I know it’s a CFS crash triggered by viral exposure – those are the worst for me. The experts say the flu (regular and H1N1) include a cough and high fever – those are NOT typical CFS symptoms for me, so I figure that’s how I’d know. But just being exposed to viruses causes my immune system to rev up and make my CFS symptoms flare. It does sound like you might have picked up a stomach virus, though. I think I’m doing a little better today…and I hope you are too!!
Have a nice quiet weekend of recovery!
Sue
Big hugs (with a mask on)!!!
A couple of years ago I had been down for the count for awhile and had this cough. It was no big deal really. Then it turned into a rattle in my chest. No big deal…not as much pain as the other. Finally, I went to the doctor. It was pnemonia. Woops!
Take good care of yourself:)
Lots of love
L
I’d just like to ask a question,from anyone that has gastroparesis,how long have you had it?,and what do you eat or can you? I’m too the point of throwing up everything i put in my mouth the day before,the minute my feet hit the floor in the mornings,and i’m always tired,but the Dr. always tell me that there is nothing else they can do.I had it for 3 and a half years, it went into remission for about 3 yrs ,now it’s back with a vengence.I’m to the point i don’t know what to do anymore.I also have the fibromymagia,along with thyroid and anxiety problems,and on dissability from 5 back surgeries,,i feel useless,this site has helped me alot,although i’m sorry there so many with this demon,and i don’t know what else to call it.God Bless you all.I just like to know if there are any answers? If so what are they.
Cathy, Your Gastroparesis sounds grueling! Has your doctor talked with you about a feeding tube. They can be put in temporarily. It would give you a break from the daily vomiting and get nutrition and in you, and keep you hydrated. Have you been through the few meds. that help some…as they help the stomach contract. GP is such a serious illness. Do you feel like your GE is working closely with you?
Last year before my gall bladder surgery I couldn’t eat anything but Gatorade. My GE and I discussed a feeding tube. The surgery has bumped my GE to a mild place, but at that time, knowing the feeding tube was an option gave me peace of mind. Though it is a tough step to take it helps knowing its there, a way to keep us hydrated and nourished…to keep those whose GP is too severe to keep liquids down- alive. If your GE isn’t doing anything for your inability to keep anything down, please find another and if he/she doesn’t help you another.
To keep on everyday in spite of such physical struggle is courageous. Your sharing your journey of illness helps me and others who read my blog. We are all in this together…and knowing that gives comfort.
Cathy there is a link under Chronic Illness Support on the side bar…the international gastroparesis is a support group with message boards and lots of members with severe GP, who I know will give both information, ideas and caring.
About foods to eat–what are you able to eat before the vomiting sets in? When my GP was most severe I could not eat what was on the Gastroparesis “severe” diet…here’s some foods that I was able to get down when I could…supplement shake–made almost water thin (nutritionist helped me find one that had the most nutrients and protein), baby food rice cereal made very thin, smooth split pea soup watered to near liquid.
Cathy, my thoughts are with you. Please keep on sharing as I know it helps all of us with GP (and those of us with GP and other difficult illnesses)
Sue–I didn’t know that exposure to other viruses (such as herpes that causes cold sores) can cause CFS flaring. It makes much sense. Hope you are coming out of your “crash”. I have been feeling a lot better the past few days.
Since having CFS (twenty years) I haven’t had a fever above 99–and then only three times that I remember. My temp. tends to go down though I feel very feverish…as I did last week.
Our little city is full of H1N1–school in the area is shut down. I think I had some sort of the flu…as I am back to my normal chronic illness symptoms.
If anyone reading this has a similar experience with temperature dysregulation, I’d be interested to know.
Lynne– Yes,the “no big deal” you shared about with having pneumonia is so common with chronic illness…we are used to not feeling well…and new conditions that aren’t related to our chronic illness can go undetected until they are very serious.
What a challenge! Funny, “with a mask on”–thank goodness viruses that mess us up physically we can’t catch online. (Just the kind that mess up our computers).
Renee–thank you for your warm wishes and your understanding!
Bugs have been going around here. I know I’ve been down with two in a row and it was clear it wasn’t a flare. I think we really can sense the difference most of the time, as you say.
Pulling for you.
Kerry –
Your experience with temperature dysregulation is very typical of people with CFS (me, too!). We tend to have lower than normal temps – “normal” for me is about 97.5. I’ve had to explain this so many times to pediatricians when one of my kids is sick – that 99 IS a fever for them! This is one of the indicators my doctor and I watch to see whether new treatments work.
Glad to hear you’re back to “normal”!
Sue
Kerry,Thank you so much for the feedback,But since my gastraparesis has come back with a vengence,It doen’t matter what i eat or drink, it all comes back up the next morning.I’m on medicaid, and the two specialist i have seen,says there’s nothing more they can do.I’m very sensitive to alot of meds,and can’t keep them down,so i feel like they think i’m at a dead end.I have been sent to Dallas ,San antonia, and Galvestion to see more specialist,and because of my blockage in my upper intestine,they say I’m not a canidate for the tube,or the pacemake.I live by myself,and my adopted children or not here for me ,nor will they let me see my grandsons,because they say i don’t have enough Faith to believe in my healing,and they just think it’s best for them to stay away, so only family i have left is a brother,who has addison disease,and it’s all he can do to keep up with his job,and he sleeps on his days off just to get his strenght to go back to work,so i don’t bother him to much with my problems and he really don’t understand them anyway.I will go on the other sites to see what’s there,but just having someone that understands means a great deal to me,I don’t feel so all alone.Thank you so much for your feedback,and I pray the best God has for you and the others,it’s nice to know i’m not crazy like they all tell me.God Bless and i pray a great day for all, that is the best we can have with all our illnesses,I also have herpes,and yes you can have a break out just from the stress of the flare ups,and that’s another drama,all by itself.I’ll keep writing as long as i know your there and understand,but i don’t want to burden anyone with all my illnessess,as my kids tell me,nobody wants to hear it,nor do they care,they have their own problems.Thanks again,it means the world to me,and for your compassion.God bless you for all of it.I’m just about ready to throw in the towel,but i can’t do that, till God’s ready.I just don’t know how much more i can bear.In Jesus Love Cathy
Cathy, How sad that your family believes you are sick because you don’t have enough faith. I know they may be well meaning, but it is hypocritical…oh so untrue. I believe that doing the best with what life challenges us with is what faith is all about…as is helping those who are sick. To me that is what Jesus was all about.
I know that each one of us coping with debilitating, complex chronic illness and continuous pain come at times to places of wanting to throw in the towel. Even animals find a corner to curl up alone in when they are sick and in pain. We are physiologically built to avoid pain.
I think we need to pat ourselves on the back that we withstand it and at times find peace and grow spiritually through this tough journey.
You have a lot to deal with Cathy, especially to do so alone. I send you kudos for hanging in there holding on to your faith and being there online when you can to give support to others.
I’m hoping that tummy of yours will let you keep something down…especially the fluids. Hope you will keep me posted on how you are feeling. Sending you warm cozy thoughts and prayers, Kerry
Thank you Kerry for the words of encouragement,It is hard,especially when i try something new,like the new Carnation instant breakfast,but because of all the vitiamis in it,it feels like a ton of bricks setting right on my chest,because it’s too heavy to go down and it’s liquid,then i throw it back up.If it wasn’t for my Faith,i don’t know what i would do,I know my life is in the hands of the Lord,and His will be done ,not mine.I pray for all that are on the site and others i’ve read about.It so shocking to me at how many,and the younger ones,it almost like a epedemic, so many young and old,i don’t understand why there not more research being done on it.I put that at the top of my prayer list,that the medical society will wake up and see we need some answers,and more medical options,until then,i Pray God’s hands be on each and everyone and lead and guide us in His perfect will.and to learn to educate ourselves more,and just keep seeking answers.Again Kerry thanks for the compassion, it goes along way.God’s Love and Peace to all.
I am in the worst CFS flare I have ever experienced in my 14 years of having this diagnosis; to everyone else it “looks” like the flu, but I know better. No high fevers, no sore throat–just the typical CFS crash but much, much worse than usual. Can usually work at least two partial days during a crash week, but have been out of work all week this time and do not seem to be improving. I am intrigued by the theory that exposure to other viruses can precipitate a CFS flare. It makes so much sense! Thanks Kerry and Sue!