One year Anniversary of the Mono Invasion
Posted , 8 users are following.
Hey all! I thought today would be a good day to check in. It's been one year to the day that I was driving and almost fainted in my car- which then started me on this long road ahead.
Some things I've experienced: The first 3-4 months are by far the worse. The acute phase is awful. Once you power through that- you can get through anything.
I've had so many doctor visits, blood draws, tests, scans that I've lost count. I feel like a pin cushion! But getting a good doctor (I like ND's personally) IS SO IMPORTANT. Seriously, they will make you feel less crazy and more proactive about your health instead of just 'waiting it out'. Enough with that nonsense.
I'm still not back to normal. I have days where maybe I'm 80% there though! But those days I tend to get all crazy and try to play a lawn game or do some aggressive cleaning and that tends to set me back for a few weeks. We still don't know if I have developed post viral fatigue or what. I did have an extensive micro nutrient test done and found out I'm deficient in biotin! And borderline deficient in folate, glutathione and l-cysteine. So I'm on hardcore supplements and in two weeks I get my first vitamin IV therapy!
My symptoms I still get are: muscle pain and weakness, all over body fatigue, pins and needles in arms/legs,stiff neck, stomach upset (mainly bouts of nausea/loose stool), occasional anxiety. I still can't tolerate caffeine very well. And acupuncture has helped with anxiety but it tends to make me relapse for 3-4 days.
I'm mostly a bunch of medium days with the a few good days and a few bad-bed ridden days per month. Not as far as I'd like- I still can't work- but not as sick as I was.
I just want to say that I'm proud of all of us. We are fighting a war man. This is the sickest I have ever been but it hasn't killed me and it hasn't killed my hope that I'll get better. It's not easy and it's so isolating. But that's why I'm so thankful for all of you. Know that you are strong. Know that you are not alone. And one day down the road we will look back on this part of our life and never ever take health for granted again. Much love-
Lisa
0 likes, 55 replies
craig07920 lisa29739
Posted
Hey Lisa,
Really enjoyed reading your message of hope and encouragement for everyone, even though you've had such a tough time yourself with this awful virus the last year. Just want you to know that my experience was the Year 2 was so liberating compared to that awful Year 1, God willing you won't have to go through anything like that again and even though you're still not back to yourself yet, this can be very normal at this stage still and it leaves you fragile for a while but gradually things can and will get stronger again, physically and mentally and emotionally, I truly believe that.
Hoping that taking some biotin supplement can help and that you can be feeling much better soon. Thinking about you and absolutely knowing what the battle of this is like, I believe you are going to get through it and that the worst is behind you, with better times ahead. Hoping and praying for that in Jesus' name! There is hope today Lisa, and the fact you made it through this tough year is a massive achievement. Believing you are going to FULLY recovery still and thinking of you!
Craig
lisa29739 craig07920
Posted
craig07920 lisa29739
Posted
Hey Lisa,
Well it's testament to how intensely this virus affected me physically and emotionally, even 12 years later, that I still remember how tough a time it was and still grateful that God brought me through and healed me. I definitely really want you to know there is light at the end of the tunnel, if my experience is anything to by you won't have to experience anything as intense or horrid as the first year again, and the power the virus has can no longer get to you in anywhere near the same way going forward, really hoping and praying for that for you too, and believing you are going to get back to 100% given a little more time.
That is great that you are an actor, I really hope that you can be fit and well enough to work and be healthy and happy again - that's all I want too just to be fit and healthy and working, and I do understand how tough and confidence-sapping it is when you cannot
Thinking of you and thanks for the lovely kind words and for your words of hope and encouragement for me and everyone!! Big hugs!
Craig
MonorailNick lisa29739
Posted
I was searching mono stories on google and stumbled upon your twitter videos you’ve done. I found it coincidental that not only did we get sick at almost the exact same time (August 1st is my one year), but we reside in the same area the PNW. If it’s true like some speculate that there may be multiple strains of ebv, some worse than others, maybe we have the same bug going. I’ve been lucky that I’ve been able to keep up with my passion which is rock climbing for most of this journey, although I still deal with moments of flulike feelings, exhaustion, and worsened allergies. I’m 28 for context. I’ve had a slow incremental improvement throughout the months except with this past month July, where I think the heat wave and the increased activity I’ve done may have blew me out and caused me to have symptoms I hadn’t felt since November or December which is when it was at its worst. I’ve had about three bad weeks here and have just started feeling better the last few weeks, trying to rest more than I have. I feel for you, you seem like a very lively person who wants to fully experience life, i hope your ship continues to right itself.
lisa29739 MonorailNick
Posted
You’ve been rock climbing? That’s amazing!!! If I try to do anything exercise or more exertion than just walking, cleaning, driving etc I get really fatigued the next day and the relapse can last weeks.
The last 6 weeks have been tough. I just started on anti virals (acyclovir) again. I went on it mid dec thru January and January was my best month. So seeing if they actually do help! I see a new doc next week in the U district area for iv vitamins and to talk about cfs. Not sure that’s what I have but I want to make sure I don’t make things worse if I do.
And in the back of my head is Lyme disease still.
I hope your relapse is swift! They are soooooo frustrating. Although you sound loads more along in progress than me so I bet you’ll be back to good in no time! And thank you about my videos! They help me stay sane! Haha!
MonorailNick lisa29739
Posted
Thanks for your well wishes! I'm hoping it is swift as well. I haven't seen a doctor since back in December. It was getting so expensive. They weren't the most help for me, although well meaning. I used to work in supplements so I have tried a bunch of different ones. Seems like monolaurin is a good one thats lots of people with these long bouts of mono have had success with it, if you read reviews online. It has a property that causes the lipid envelopes that surround herpes viruses to dissolve, so I've read. Other than that, its just been staying away from sugary snacks that makes a difference for me. All the other stuff I've tried its hard to say how much they've done, ya know? Qigong is something that I've started looking at that a lot of people have treated cfs and other vague chronic illnesses, and its a really gentle movement form. I'd maybe look into that. Wish you well!
youngboy238 lisa29739
Posted
That’s big progress if you have still been climbing nick, in middle of May I started shooting my basketball outside and I could hangout with friends, that all came crashing down though and for a bit over 2 months I’m just getting worse and I’m not improving. Really worried because I went from feeling about 70% healthy again to now I feel worse than I ever have so far and it’s still getting worse. At first I thought it was just a normal relapse but now I am really worried it’s more than a relapse because it’s been going on for so long and not improving.
Hey Lisa, I wanted to let u know from what I know, it seems like you don’t have cfs because you have made so much progress, I’m really worried I have it though, because things changed and have been getting so bad and I am not improving.
Also wanted to ask, how well do you feel? Like how much progress do you think you have made? Same with you nick, How much progress have you made?
Hang in there guys!
Youngboy
craig07920 MonorailNick
Posted
Hey Nick / Lisa,
Still thinking about you guys, this last year must have been so hard for you both and just really hoping and believing that Year 2 can be the year of recovery for both of you. My experience definitely was that Year 2 was liberating and a year of recovery as my health and life slowly started to return to normal bit by bit - really hoping and praying for same as you.
Sounds like good advice Nick regarding the supplements and things, just someone posting something on here about a supplement or therapy or treatment that has helped them can make all the difference, and really hoping these things can make a difference to you. One therapy that has helped me with numerous ailments over the years has been Bowen Therapy, very safe and non evasive and would highly recommend it.
Hoping these anti-virals help Lisa, I haven't had any experience of trying them but really hoping it can make a difference. I still trust God and believe that you are both going to make a full recovery, God is a great healer and thinking about you both.
Craig
lisa29739 craig07920
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Yes hoping these anti virals start helping! Really ready to start improving.
lisa29739 youngboy238
Posted
My improvement is hard to measure. At my sickest I could barely crawl to the bathroom I was so weak and I was having daily anxiety attacks. So I’ve improved since that! But there seems to be no real improvement since January. It’s a constant battle of starting to feel better for a few days followed by a week long relapse. I’m starting on anti viral medication and hoping it helps kick this thing to the curb!
youngboy238 lisa29739
Posted
Ohh gotcha, yeah it’s tough that you haven’t been able to get back to January status.
Do you ever have days where you feel close to January? Overall your doing great and taking care of your body so I really believe your going to get better again!
Also don’t give up on your dream of acting! Try to follow your dreams I’m rooting for you!
lisa29739 youngboy238
Posted
I do have moments of good health! Well not normal health but times I don't feel flu-ish. I keep a calendar and mark with B (bad) M (Medium) and G(good). Most of my days are M. But I do get some good days in too! The week of July 4th was decent. And I just took a vacation with my family and it wasn't too bad. I had a bad day or two but most were decent so long as I didn't overdo it.
And thank you! I could never give up acting. Up until last year I was making a decent living at it. So I will definitely return to it once my health is better! It's my favorite thing in the world
Do you keep a journal? I keep one on my computer and it really helps me keep track of what I've been through. And it makes me feel better.
youngboy238 lisa29739
Posted
And that’s really good for you that you were able to go on the vacation! Remember to pray, God is the best healer of them all!
And no I don’t keep a journal, It probably would’ve been a good idea to write a journal but I haven’t.
Keep hanging in there Lisa, remember what you have been through and that you are getting closer and closer!
MonorailNick lisa29739
Posted
Clidecjay lisa29739
Posted
Hey yall, hope all is feeling better today! My 7 month Mark is today. For sure nothing to celebrate. I'm in a mini relapse...I just changed over from 12 hr nights to days at work. Every 3 months we alternate and I had 3 nights i only had 3-4 hrs sleep. My neck and shoulder pain has been constant for me with my swollen lymph nodes on one side of neck for the last 5 months. 3 days ago came back my gland swelling under my chin and 99-99.5 fever. The last two nights I've had 10 hrs sleep and feel pretty good. So...definitely no rest and stress are my triggers. We know we need rest but dealing with the stress is harder as we all wander if we will ever get better not to mention our normal life stresses we deal with! I've been praying for all to regain their health here. May I ask Lisa are your lymph nodes still swollen? Also, would like to hear from Poppy to see how his neck pain is? Good wishes to all and try to keep the faith that you will get better. CJ
youngboy238 Clidecjay
Posted
I agree stress and no rest are triggers, I wanted to tell you that the fever is completely normal I have them too, month 1-4 I didn’t have them but then I started getting them. And yeah, you should pray, god is a healer and he will heal you and remember you will get better and get out of your relapse.
lisa29739 Clidecjay
Posted
Mostly my symptoms are the horrible fatigue, occasional dizziness and if it’s a bad relapse then the awful weak and painful limbs.
That’s incredible that you’ve been able to work so much! I can’t imagine!
Yes stress and no sleep are triggers for me too. And any exertion beyond walking.