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I've had ME/CFS for almost 20 years. About 2 months ago, I started feeling worse. I can't link this downturn to anything I did. About 2 weeks ago, my illness again worsened. Now I'm dealing with periods of extreme illness, which is hard to describe. It's not pain, although my neuropathy is worse. It's more like just feeling so sick, I can hardly cope. I meditate daily, which has helped in the past. Have any of you had to deal with a similar situation? If so, how do you cope? On top of everything, I'm having eye surgery in a few days, for a very serious condition. I'm totally overwhelmed. I'm so sick, I can barely talk. The horrible part about this, is that in any halfway normal situation, when you're feeling bad, you can talk to someone who cares, including a therapist. I can't get this kind of help, because I'm so profoundly fatigued and can't talk.
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I’m sorry I can’t be of much help but just wanted to reply to you to say I’m sorry you’re suffering so much and I hope someone can offer you some advice.
There are some extremely awful strains of flu viruses about at the moment ... might possibly account for why you’ve been feeling so especially terrible these past few weeks.
I hope it passes for you soon,
Thanks for your response, Lucy. No. It's not the flu. I only wish...I had the flu a few weeks ago.
I would say thats the clue your looking for. If you had flu a few weeks ago it has probably crashed your ME again.. Any viral infection can cause a huge crash in ME.. thats one of the reasons ME sufferers should not have flu vaccines. Chances are your body was in a bit of a downturn that we all go through from time to time.. thats how the flu virus got a hold and now you Viral load had overwhelmed an already struggling body. This happened to me in 2016.. I was fine until i got swine flu, i wasn't too ill with it either compared to everyone else , but it started a downward spiral that has taken me 19 months to get over. Im still no way back to where i was before the flu. But i am improving slowly.
As for coping.. just knowing what it is and that i have always improved .. helps me cope. 2017 was the hardest year ive had for almost 20 years . But im slowly getting there and im sure you will.
Thanks for that. I've always appreciated your help on this forum, starting when I developed neuropathy symptoms. What you say makes a lot of sense. It's very hard for me right now to think clearly and remain hopeful that things will get better.
Sorry to hear you're feeling worse right now. You mentioned you had flu a few weeks ago and the downside of this awful condition is that we don't recover the same as if we hadn't got it. We take longer to heal and have extra symptoms. We also just had Christmas and a shift in the weather that seems to make many feel worse too. The not being able to talk makes me miserable and I guess you too? When things get worse for what seems like no reason, it can sometimes be useful to look at all the things you have done recently. Piece that with illness, the festive period and the extra demands that can have on us and the forthcoming surgery. ME is a horrible condition that can create such terrible restrictions on us. My friend (also with ME) also had flu recently and has the herpes virus now on the back of that. She's battling too with worse symptoms and not being able to leave the house for several weeks. She also seems to be struggling with climbing back up to where she was. Sometimes I think as hard as it is, we have to accept we're not where we were or where we'd like to be right now with the condition and all we can do is ride it out for now. Rest as much as we can and get as much help as we can. It would be great if we could hibernate wouldn't it ?! Put off anything that isn't immediate. Eat as well as you can and try to do things you can and enjoy in small batches.
Am also going to ask, is it imperative you have the eye surgery soon? If so, then it's even more important to rest and do less. If not could it be postponed till you are feeling less unwell?
Hope this helps Jackie
Yes, Beverley. Thanks. It does help. I can't put off the eye surgery. I have a serious issue and must deal with it, unfortunately. I do wish I could hibernate. Just go to sleep right now and wake up a few weeks after the surgery.
?I've had ME/CFS for over 20 years too and understand how you feel. I've had better and worse spells with the illness and have noticed that most times when I feel worse it's either caused by another infection such as a cold or virus, doing too much physically or extra stress in my life. The fact you are due to have surgery in a few days could be what's causing you to feel worse as the additional stress will be draining your already depleted energy reserves. You mentioned that you meditate daily. Do you just switch off and focus on your breathing or an object when you do this or do you listen to guided meditations? I listen to guided meditations and find them really helpful for reducing stress but I have a mixture of ones I listen to as I find if I listen to the same one all the time it becomes less effective. Could you maybe try and listen a different meditation or do your meditation in a different way so it's more effective. You could also try distracting yourself from thinking about by doing something else like reading, watching TV or using the internet to take your mind off it. Or get some extra sleep as you won't be worrying while you are sleeping and the extra rest will do you good.
?Just try and think that in a few days it will all be over. Lots of other people will have had the same operation and will have come through it fine. You could maybe plan a treat of some sort for yourself when it's all over with so you have something to look forward to.
?I wish you the best of luck with your operation and hope your recovery goes well.
Thanks for your post, Elaine. I think you've hit on something very relevant regarding my meditation. I have used the same guided meditation for many months now, and I do think it has become less effective. I'm going to change it up in the future. I have great difficulty sleeping, but I will focus on all your suggestions to take my mind off the surgery, and also off my feeling so sick. I have many interests, like reading, listening to music, watching movies, following politics, and getting on the Internet. It is very difficult to focus away from my illness, though, because the sick feelings are so intense that they keep getting my attention.
Thats the #1 scariest thing about our illness! We never know if its something else that needs medical attention or is it something that will pass. I felt horrible for 2 weeks last month but i was exposed to alot of sick people, being in doctor offices, my kids etc. So i didnt know of it was just that or an infected pimple that i always get on my face or scalp, mind you im 55!! Thought i was done with acne. Account it to my immune system i guess. My doctor thinks it could be Candidia overgrowth so wants me to try nystatin also cuz my tongue is whitish. Im always scared to try different things especially all together. So im waiting because i just started NAC so i want to see if theres a difference with that first. Anyone else taking NAC?
You can change your meditation to something i do if u arent doing it already. Its called EFTs. Emotional freedom technique. Its tapping certain areas on your temple , cheek, chin, etc. You will have to you tube it. Good luck on your surgery. Youll do fine. Chin up.
Thanks, Tracy. What's NAC?
That's really interesting about the nac...I am going to have a look into that
I am sorry you are having such an awful time of it.
I have been in a very bad relapse for over 2years and I am totally housebound and bed bound.
I have had nausea almost from the beginning of this illness 16years ago.
I cannot remember a day without it and it ranges from severe to bearable.
I have just been diagnosed with BPPV(Vertigo) and I think part of it is related to that but also
I have problems with severe growth hormone deficiency due to pituitary damage and I am
sure that has something to do with it as well.
My voice goes altogether and is really weak when I talk.
I didn't think I would end up this bad but I also think I spent a lot of time in 2015
attending hospital appointments every couple of weeks for tests which really wore me down
physically and mentally.
Before that I could get out the house for a couple of hours once or twice a week which I could live
with but this is a whole new level of feeling ill on top of everything else.
I would if the eye condition that your body is fighting is causing you to feel so sick?
I remember being like that when I had gallbladder problems and it took a long time
to get over the whole thing but I was so sick at that time.
Have you explained to the hospital about your CFS because they should keep you in for a few days
to make sure you're ok?
Maureen--Thanks for your post. I can sure relate to everything you say about this being a whole new level of feeling ill. Yesterday was my birthday, and i was so ill I couldn't even enjoy the special dinner my husband brought me. I spent much of the day in bed. I hope that you, me, and everyone else here has better days ahead.
Sorry to hear you ate feeling so bad Jackie. I keep hearing people say they are feeling so much worse not due to anything they can put there finger on. Myself included. I an so much worse in every way this past few weeks. We don't do Christmas so it had nothing to do with that. I have not picked any infections up. I would know if I had as it really knocks me off badly for many weeks . and I never get back to even how I was.
I have a new issue too with my right eye. Flashing arcs and lines of bright light and what looks like a big black spider's leg floating about in vision. No doubt I should see an optician but just not up to it . had blood tests on Monday which hasn't helped . was only out of house less than half an hour. Felt like all day and still paying back.
I just tend to carry on best I can really. I seem more and note limited though . before I know where I am it is evening time again. The week goes by so quickly.
I hope you eye surgery goes well Jackie and it doesn't knock you back even further. Take care. Thinking of you x
Thanks for responding, Janet. The challenge is to not go to a dark place emotionally when I'm feeling so ill. I know what you mean about not feeling up to seeing an optician. Here I am, scheduled for eye surgery, and I can barely talk or get up off the couch. Your eye issues sound like something may be going on with your retina. I hope you feel well enough to get it checked out soon. It's bad enough having to deal with this illness. Then when other stuff happens, it's just too much.
More tiny spidery bits more peripherally this morning. The thought of having to go get it looked at is not good . As you know only too well.
My dark place is a thinking about my dear mother. I have been denied proper grieving due to everything surrounding her death. Slowly getting that dealt with. But one part, the major part will likely never be done. X
I'm so sorry about your mother's death and your being denied proper grieving. I have some different issues regarding my mother. She's 96 and lives about 2 1/2 hours from me. I haven't been able to see her in 4 years, which is a terribly cruel situation. I can't Skype, because she doesn't have a computer and it's just too overwhelming to make that all happen. One of the ironies about this is that my mother is in much better health than me.
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