Where I'm at, one year on
Posted , 5 users are following.
I can't believe it's been a year since I first got sick with this horrible illness. I think part of me will always be that person huddled at home in a quivering mess, wondering when it will end. Because that's seriously how I spent the first two months with EBV, and I've never, ever been so terrified.
BUT. It's a year later, and I promised myself if I got through it, I'd check in here and offer hope and encouragement to others - because that's what was given to me, and honestly - it stopped me from completely losing my mind when doctors and friends and even my husband didn't understand what was happening.
So here's where I'm at.
I still experience what I call 'flares'. Usually it's around my period, and it tends to be eye problems, muscle twitches, and that weird internal 'buzz' (has anyone figured out what the hell that is??). I also still experience reactive arthritis, although it seems to be improving over time.
I also get hot 'flushes' in my feet, which I guess must be nerve damage. I don't know. I also still get tinnitus pretty regularly, too - but it's nowhere near as bad as the first couple of months.
In fact - nothing I experience now even comes close to those first horrific few months. And while I've had definite setbacks (and a proper relapse in January, but it passed quickly), I'm slowly rebuilding my strength and my wellbeing.
I just want to say a big thank you to everyone who responded to my posts last year. You were a lifeline during the darkest, most hellish thing I've ever been through. I'm still living with this disease, but I'm actually LIVING - not waiting to die.
There is light at the end of the tunnel x
3 likes, 4 replies
Neenie2020 emma198181
Posted
Thank you for the update. It puts my mind at ease. It's been a year for me as well and still have the exact same symptoms as you do right now. Exactly to a T. I still have some pressure in my nose and some joint pain too. Thanks again..
emma198181 Neenie2020
Posted
Hi Neenie,
I forgot the mention the sinus and ear pressure! Sometimes there are so many symptoms I lose track of them. Pretty much anything weird that pops up now, I'm like 'mono!' Playing it's tricks.
Best of luck with your recovery - I've heard anecdotes about how the second year is much better than the first. Perhaps we'll both be running marathons by the end 😃
vicky29880 emma198181
Posted
Hi Emma, I can totally relate to every single thing you just mentioned. For me its 2,5 years and even though Ive seen so many doctors no one ever told me what exactly happened to me overnight...I went from being healthy and out going to waking up with 40+ neuro symptoms, thinking I was dying, including the terrifying internal vibrations/tremors, EXACTLY, what the hell are they????
And yes, symptoms seem to flare around my period....
The good news is that Im much much better and I can function like a normal human being and mum. I dont know if time did it or a 6 month b12 injection treatment at month 8 of suffering awful symptoms, but most neuro symptoms and that awful lightheaded feeling are gone.
Unfortunately I still have internal vibrations but at least they have dialed down from all day, every day to only when I wake up in the morning for a few minutes, I still want them gone though... some finger tingling and twitching too...
Best of luck with your recovery, your story is so similar to mine, things do get better, I never believed it but they do!xxx
suetoo emma198181
Posted
Thank you Emma for taking the time to write an update. I swear I'll do the same when I am all better. I got sick with chest based horrible flu late March, recovered from that and then was on and off sick and weird feeling for the next month with some days feeling pretty normal and others v odd. Totally crashed on April 30th and was bedridden with all the usual awful living dead symptoms everyone describes for the following ten weeks (digestion, bowel, awful chest pain, cough, myalgia, eye floaters, breast pain, heart pounding, physical exhaustion, jelly legs, joint pain, slow brain out of body feeling etc etc) Got covid tested on day 21 and day 28 but both negative. I have "asssumed" EBV glandular fever as by the time they did the blood test for that mid May it was showing the IGG status of past infection. My illness has always been chest and airways based. Either way, it's Post Viral Fatigue Syndrome and that's what a lot of Covid patients are now suffering from. I managed a phased return to work 3 days per week but starting off with only 2 hours per day and then the next week 3 hrs per day until I made it up to 5 hours per day, was so happy. Being back at work really helped with my mental wellbeing , feeling useful and social interactions, as of course GF messes with your head so much! Sadly I then crashed again and have been home again for 3 weeks and am bed bound. I am probably going to take an extended leave of absence from work to ease the guilt burden but how long is long enough?!! How long is a piece of string, right?! It's made me quite afraid to ever attempt working again but the thought of resigning is awful. I have a great fear of ending up with long term CFS. You sound like you have regained a lot of normality but not 100%. Did you make it back to work or normal routines and almost normal energy levels? Before I relapsed I was up to 70% of my former self and now I'm back down to 40%. Thanks once again for giving hope to current GFers!