2.5 years in
Posted , 18 users are following.
Hi everyone,
During the first year of this illness I couldn't even imagine having a normal life again. The symptoms were just so scary and never ending (from the typical fatigue, sore throat and dizziness to sensory hypersensitivity, painful scalp, dry mouth, hives, rash and awful anxiety) and I felt the life I led before the virus had all but disappeared. For these reasons I also spiralled into depression which of course didn’t help anything. But there is hope! I'm pretty much back to 100% again now, working 36 hours a week, socialising like before and I even went on two overseas trips last year. The awful lingering symptoms of anxiety and dizziness have now FINALLY gone and I'm getting on with living my life again.
An important lesson I have learned for the best recovery is this: do not expect recovery to be a sprint race – it is a marathon for sure. You can’t fast track recovery by trying to push through and rush back to what you were doing before. It’s a grinding zig zag process of feeling like you’re recovering and then feeling like you’re right back at square one again, over and over. This is the normal recovery trajectory for this virus. Please continue to listen to your body and if you are tired, experiencing symptoms, not coping, then it’s probably your body telling you that you need more rest and care. I ended up taking 10 months off work in total. This virus isn’t anything to take lightly either. It’s been linked to more serious conditions which makes it all that much more important to take care of yourself now. Wishing you all lots of rest and support, and as quick a recovery as possible.
5 likes, 37 replies
Clidecjay KS2017
Edited
Click on my name for my story... 2 yrs 2 mos now Finally lymph node swelling gone and feeling near normal. Patience is the key, but almost impossible not to think the worst which makes it worse. I made it through this(never thought i would say that). Zig zag is exactly right. I had over 10 relapses. Some bad and some minor. I kicked ebv's ass and so can everyone!
KS2017 Clidecjay
Posted
I'm so happy to hear that you've made a full recovery from this awful virus Clidecjay, it is hard not to fear the worst when your body is doing all these strange things due to the virus. Hopefully we can help bring hope to those still going through this awful illness, and give them faith that they too will recover fully over time.
lori939 KS2017
Posted
10 relapses? ive had what feels like a 1000 😃:):) 22 months in . ok during the day still dont /cant go out at night and still have 'off' days where i cant do my walk . if i do go out at night i feel awful the next day and relapse . you do get used to just doing nothing ... being alone alot tv and internet becomes your best friend.
KS2017 lori939
Posted
Hi Lori, I’m sorry to hear that you’re still struggling, but please keep having hope that you will heal from this in your own time. I know what a terrible struggle it is to wake up every morning feeling like it’s just going to be like this forever, but you will get better. Keep listening to your body and resting. If you can’t handle going out at night yet then that’s ok, don’t go out at night. I don’t think I”ve actually really been out at night much since being sick, but that’s mainly because I’m old and boring…haha. Wishing you many better days to come.
lori939 KS2017
Posted
yes im doing ok thank you ! can manage ok if i dont push it ...get stressed sleep well etc .
its just been a long hard journey 😦
bugbear123 KS2017
Posted
hi Ks2017
i thought i would message you as your symtoms are so similar to mine. pain down one side of the body etc
etc and low T3. i have fully recovered but only after seeing an endocrinologist as the ebv attached my thyroid and needed T3 as i have low T3 like you. T4 didnt work for me as i have reverse T3. you might be advised to see a good endocrinlogist to get a full thyroid check.
kevin08844 KS2017
Posted
Good to know u have recovered. can u advice on the supplements that helped your journey.
KS2017 kevin08844
Posted
Hi Kevin, thank you for your message. I saw a naturopath regularly while I was sick and was on supplements a lots of that time. The main ones that I think helped me were zinc and Vitamin C and immune boosting mushroom powder. I was taking high doses of both of these under the direction of my naturopath. I was also taking vitamin D and iron tablets as I found the virus really depleted these vitamins in my system as indicated by blood tests.
Once I started recovering again and started being more active (i.e. not just lying in bed all day) I started taking a plant based protein powder and eating more protein like chicken and eggs as my muscles had all but wasted away and I needed to rebuild. I found this really helped with my energy levels too. Wishing you a speedy recovery.
JustMeHere KS2017
Edited
I am glad you are getting back to normal. It's also good to hear your experience. The painful scalp and dry mouth that comes and goes has been baffling and sometimes I wondered if it was even the virus or just me. You are so right on how this pushes you to the point of depression. I try to be strong but sometimes I think, "If this is what the rest of my life is going to be like then do I want to live like this?" It's such an ugly virus and the information surrounding it and given to us isn't all clear and accurate. I know I'll get past it though, God is with us and he will see us through no matter what. Thank you for sharing your story and I'm glad you are healing well and moving past this now. I look forward to being there, even if it does take another year or two.
KS2017 JustMeHere
Edited
Hi Justme here, thank you for your message. It’s really an awful virus and journey to have to go through, and the chronic and long nature of it is just so trying. I kept reminding myself too that God was watching over me and helping me to heal, and also maybe helping me to develop some patience and faith. I also found that doctors just had no idea what the virus actually entailed and I gained a lot of hope from this very forum. Keep listening to your body and resting as I really believe these are the two most important things you can do to aid your recovery. I remember reading recovery stories when I was in the thick of the virus and I longed to be there. You too will recover and you will one day share your own recovery story as well.
lori939 JustMeHere
Edited
i went to the dentist yesterday after 2-3 years i need 3 fillings hygenist said dry mouth can cause this .
lori939 KS2017
Posted
i actually meant that message for you . Theyve given me xylitol to try for the dry mouth ... i never knew that could cause decay ? but it does 😦
Sam1900 KS2017
Edited
Thank you so much for you post! that's amazing and I wish you only health from here on...
May I ask did you have CMV or EBV infection?
Thank you!
KS2017 Sam1900
Posted
Hi Sam, Thank you for your message. My results said past infection for both, so it's hard to know. I think my symptoms were probably more aligned with glandular fever than CMV. I hope you're recovery is speedy.
SADJ KS2017
Posted
Hey KS2017,
How are you doing now, still feeling healthy? Best wishes and stay safe!
eric81273 SADJ
Posted
hey sadj how are you doing now?
SADJ eric81273
Posted
Hi Eric, I'm still not completely healed, but there seems to be a very slow trend of getting a little bit better day by day.