My mono story...and looking for any comparisons

Hi Mono

How have you been going lately?

Thanks Mono.

Did you feel back to your old self at the year mark? Just wondering what I can expect.

Did you ever have sleeping problems? And did they finally clear as well?

Hi Jen,

I felt probably 75-80 percent looking back, although at the time I was so grateful to not be feeling miserable, it felt like 100 percent.

I would fall asleep and wake up around 4:00 am with that horrible anxiety feeling and then toss and turn until the alarm went off.

Yes, the sleeping issues did go away,

thats great news ...this virus messes with your sleep so badly . so glad you have improved cant wait for the day i can say that 'i feel better'

Hi Jen,

I'm with Mono too on that one too that after a year I was maybe 75-80% back, still feeling fragile but just SO grateful not to be feeling as awful as I did earlier in the year and I know you've been in that kind of awful phase right now - just want to reassure you it will pass and remember everyone is different in their recovery time, some get there quicker than others and everyone's recovery story is unique and individual to them, so although it's hard try not to compare too much with others or think 'why am I not feeling better at this stage when someone else said they were?' or put a timescale on it or whatever, it's an easy and natural kind of thing to fall into that way of thinking, so hard to be patient I know but just know that you WILL get better and cope with each day at a time - remembering each day is another day away from the day of infection and towards recovery - and that if there are particular days or spells you are feeling quite rough or awful - that it means that something is happening and your body is getting on top of another element of the virus so it can't harm you again in the future.

Thinking of you Jen and Mono too and everyone today.

Craig

Thank goodness. For me, its the worst part of the illness right now. Last night was another night that i got in bed with a positive thought that i might actually get some sleep, but nope. Sick and tired of being sick and tired! 😃

Mono too and Lori,

I am at month 10 and my sleeping issues persist. I am 49 and was in great health before getting this nasty virus....there must be something off in my immune system as I am really struggling to get well. My headache is still a constant but not as severe.........what's troubling me most these days is my poor sleep but also clumsiness/wobbliness in my arms and legs. Have either of you experienced this? It's like someone else is running the show and I don't have full control.

Craig, perhaps you can shed some light on this one as you have met with so many of us virtually.

I am trying to relax!

Kiki

Hi Kiki,

I am sorry that you have to go through this terrible virus.

I had many issues with my arms and legs the weakness and internal shakiness was awful. I started my recovery at about one year, I was 54 when I got the virus and it is harder when you are older. You will recover as hard as it is to believe right now.

Hi Kiki,

This sounds awful this phase you have been going through, it really is so hard when your sleep is interrupted I do really hope and pray things can improve significantly in this area soon. The amitrypyline helps with my sleep for sure, but again I know something only to be considered after measured and serious chat with doctor. Listen to the radio and relaxation apps, healing scriptures and verses, breathing exercises, all these things just before or when in bed I've always found helpful to help me relax and get into a sleep state. It's not easy though when your body is feeling so unsettled though, when this virus starts to calm down for sure things will settle down too with your sleep I really hope and believe Kiki.

There certainly does seem to be a real link between the cognitive function, nervous system and this virus for sure, having read everyone's accounts of various things from the brain fog to shakiness and finding it hard to just function and have the normal coordiation they would. These things are very frightening to experience Kiki, just want you to know I'm thinking about you and remember it is very feasible and likely that this is just one of the nasty cycle phases of this virus and that things will settle down again with that - sometimes it can just seem to jump from one thing to another bothering you when going through it, it's awful I know. Some of the vitamins / herbs for nervous system function might be good for trying in this respect, things like B complex, Co-enzyme Q10, Gingko Biloba, Cayenne Pepper, Feverfew (good for headaches) to name a few that spring to mind and that I've found helpful at various times.

Hoping for a better weekend Kiki, remember stay strong this won't last forever and I still believe that a new strength and resilience is going to come into your life and wash away the weariness and fear and dreadful mental and physical pain this virus has caused. Hang in there Kiki and sending best wishes and prayers.

Craig

yes i have that shaking also ...my hands shake and my whole body . yes and i got it at 52 im into my eigth month now ...and mostly every day is awful apart from a few days here and there that are just 'ok'

glad to hear that you are doing better but one whole year !

yes i had to go on a low dose pill which i didnt want to but id do anything to sleep through the night . im on month 8 i think but who knows when this really started im just going by when i started to feel really bad . hopefully im further along as it seems like it takes up to a year.

and yes im so clumsy and shaky i knock things over and my hands constantly shake .

this is an awful awful virus but praying that its over soon for all of us .

im on loads of supplements for immune boosting not sure of theyre working as this virus is so powerful .

I'm at month 8 and I have exactly the same symptoms. I have a constant dull ache In my head, sometimes a bit spaced out, my arms and legs feel like jelly......when I go for a walk it seems to clear it a bit. I do manage to go to sleep at night but I always wake up around 3 or 4am and it feels like I struggle to get back to sleep. Always wide awake by 7am. I haven't had a sleepy lie in for ages.

yes me too ....you wake up wired and think oh maybe im ok today then a slow decline follows where you just feel awful... like your skin is crawling .

i feel your pain .

Lori, Dodge, Mono too and Craig,

I can't tell you how much I appreciate your commiseration and understanding of this suffering. Just knowing that others are going through, or have gone through these scary symptoms well into the illness is comforting. I have done everything to take care of this distressed temple of mine along with my mind (as best I can!). I am now looking into frequency therapy, which sounds a little 'woo woo' but I am trying it and is actually grounded in solid science. I became less skeptical when listening to an interview with Nenah Sylver who has written the authoritative book on 'Rifing' - which uses herz frequencies to disable pathogens in the body which in turn allows the immune system to get back on board and for the body's cells to start repairing.....here's hoping!

Mono too - how are you doing? Do you feel like you are fully recovered now? How long has it been?

Sending good healing vibes to you all,

Kiki x

Oh Lori - I completely relate.........my regular nature is very positive but I have to say, I also think every day is awful.....so hard to stay optimistic with this - and I have been through a lot of hardship in my life - nothing compares. I am seeing my immunologist and ID doc this week and will be asking very specific questions about my immune system. I have no expectations in allopathic beyond getting bloodwork done but I will see what they have to say....

Kiki x

i think i did this on a recent trip to see a naturopath its like a flourescent light and they program it specifically for your illness . didnt help me much but i only did one session.

id say give it a try ....it cant hurt.

and yes thanks to everybody on here ...its such a lonely depressing illness ... we're all struggling .

yes ive been to 6 doctors including an infectious disease specialist but there really is no cure . i think take all the immune boosting supplements and thats the best we can do right now .

i HATE it ! wake up and feel like my skin is crawling ... its such an awful weirdness .

Hi Lori...this particular instrument is based on frequencies but no light. I initially put my hand on a reader which reads the top 145 pathogens, viruses, bacteria etc. that registers based on the thousands that have been quantified. Based on this, they run the currents for an hour or so. Some microbes are stealth in the sense that they hide from the immune system and wreak serious havoc on the body in the mean time. The idea is that the frequency chosen to disable that particular microbe, virus etc. will render it useless by shattering it's cell wall. The debris is mopped up by an immune system that becomes more available. The detox pathways need to be in good working order, otherwise the bloodstream becomes overloaded with toxins with no where to go. The theory makes sense: EBV (and in my case also CMV and Dengue Fever) hit my immune system badly, opening the door to other nasties to fluorish. One thing going for me is that I have good liver function and have been 'preparing the terrain' to clean this up. Let there be homeostasis.....here's hoping!!!! I HATE this too......wanting my life back now please. I am in Toronto, Canada. Where are you located?

Kiki

Hey Kiki,

I hope this treatment can offer some hope and help, I know when things go on so long and the road has been so difficult just trying to explore options that can make a difference can be really important. Just hoping God guides you to the right treatment / thing to try at the right thing, hoping so much for your breakthrough Kiki.

It's so hard when something goes on for a while and your confidence becomes shaken, you try to get on with things as normal but sometimes it can be so up and down, I can be feeling good and high one day and then if something goes wrong or feels like I do something wrong it can come way down again, everything just so fragile and I know you and many of the guys on the site here been through similar things.

Praying for God to give us stability and a peaceful, sound state of mind where we're responding in a good and righteous way.

Craig

sounds amazing ! im in central california dont think they do it here whats the instrument called again ?

i dont even have energy to make appts anymore i stopped making them as i kept cancelling .

my mom wants me to go to other drs but ive been to 6 and there is no cure

I keep trying to decide if I need to go to the doctors again, but can't forget the time one doctor just shrugged his shoulders at me and told me he doesn't have a magic wand....then asked me to tell him what I wanted him to say. One doctor did tell me not to read what's on the internet as other people's symptoms blood readings etc will be different to mine.....but I think this forum is the only thing that has kept me positive. I don't want to hear other people being ill but being told what we are going through is all part and parcel gives me some hope at least.

it's called a 'Rife machine'...look up the website for Nenah Sylver. There are also some interviews with her on youtube where she explains the theory of how it works. The FDA does not allow medical doctors to use it, however in California alternative practitioners can. I am sure there is someone close enough to you if you are interested......I can keep you posted on how things are going for me......take good care x

Thank you Craig for your encouragement at this most frustrating time. Being so ill is really taking a toll on me. I have joined a meditation group just to get out of the house and feel like I am doing something for my mind....Kiki

well ive been to 6 different drs and there is no cure .

Oh I know it's not easy Dodge, you just want to do the right thing and not something that upsets or unsettles you further. This forum is a good one definitely don't see any harm coming on here at all and chatting with the good people who are trying to help and encourage each other. Also remember go to the doctor as many times as you need to, but if they tell you something discouraging or unhelpful, you don't have to take that as read and I guess just take it to God and ask for His help too, hoping though that the doctor(s) can be helpful and give the right advice and support for you Dodge. Hang in there, thinking of you.

Craig

Thanks for Kiki and Lori for the words, feeling a bit unsettled today again hoping things can settle and God can help me with things and decisions I need to make.

Remember Lori whatever the doctors say, this thing is a virus that gets better with time, and you will get there - God will see to that.

Craig

Hi Kiki,

It was two years at the end of October, I started to recover at a year and I would say I am now fully recovered, It took me a year and a half to feel really back to normal. I am 56 so being older did not help.

yes would love to hear about any good feedback

gosh im only in about month 8 i do hope i dont have to wait a whole year or longer 😦 its getting to me . was it just a slight improvement each day or a sudden improvement ?

Hi Mono_Too,

Thank you for sharing pieces of your recovery journey. You must feel so relieved coming out the other side of this virus. It gives me some encouragement that my life can resume again at done point in the not so distant future! My most significant symptoms at this stage are headache, vision changes (which i hope can resolve), white tongue, dry mouth and limb weakness. My anxiety has come down a notch and insomnia is not as severe these days - grateful for any slight improvement....

Take care

Kiki x

thats great kiki that you are improving ....we are all just sat here 'hoping ' 'wishing' that this whole nightmare ends soon !

do you not have the fatigue anymore ...thats my biggest complaint right now ...it literally engulfs you .

Hi Kiki,

Just a message of encouragement, don't give up - this are going to turn around and you will get there. I can only imagine there must be days right now when you are feeling like this is never ending and just struggling to see hope. Want you to know there is hope Kiki, Mono too's words are really encouraging and my story was similar too, it took a long time with many moments of doubt, fear, worry, distress and struggling to see hope and light at the end of the tunnel.

But it did come Kiki, thanks to God, and it will come for you too. He knows what's been going on and how much has been thrown at you this year and I know not only with the mono, I believe there is going to be something amazingly good, lasting and positive that comes out of this experience for you and that you will be healthy and well again to experience that freedom. It might not seem or feel that way now Kiki, but I truly believe that something sincerely good and wonderful for your life is going to come into fruition, and that this horrible time will be a thing of the past. Hang in there and thinking about you and just cope with each day one day at a time right now.

Craig

You and your family have endured so much Mono, recovery is going to come for your family too as well as you I still have strong faith and belief in that. Hang in there and thanks as always for all your support and kind words, always appreciated.

Craig

Hi Lori,

This forum is a great thing with some really encouraging people, but I do understand that one down side can be when you come on and see others posting that their illness has went on X amount of time, and that might be even a good bit longer than the stage you are at just now.

It is totally understandable that sometimes that might make you feel down or panic, even though that's never the intention of anyone posting of course I know, I just wanted to message to let you know everyone's journey and experience of this thing is very different and recovery time is unique to everyone. But by far a common thread is that the intensity certainly lessens and one thing I'm sure most people on the site would agree with is that the first 6 months or so is by far the worst stage and nothing can harm you as deeply as that again - for me it was about 10 months before I started to see a major breakthrough and gradually God helped me get strength back from there - so remember there is real hope and your breakthrough may be much closer than you think Lori - just focus on coping with each day and remember God is in control of the bigger picture and won't let this go on indefinitely, I truly believe that. Thinking of you Lori hoping for a settled day and week ahead.

Craig

Hi Mono_too,

Great to know you have fully recovered. I am 15 months in so hoping and praying that I will be fully back to normal in similar timeline to yours.

I am 39.

thank you craig yes as my mom says we are all unique so timing is different for everybody. i managed quite well the first 5 months but as ive said month 6 7 8 the worst for me . working out helped alot but since i stopped feel worse.

i just hope it all gets better soon for everybody .

Hi Kiki,

That is a really good sign, the symptoms will start to disappear or taper off one by one, it is a sign that your immune system is getting a hold on the virus.

Hi Kay,

Yes, it will happen for you too, your body just has to get a handle on the virus. I never thought I would recover, but very slowly it has happened.

Oh thank you mono_too. I am so looking forward to that day to come. What did we do to deserve this eh?

Thanks Lori, yes well mom's are wise so hold onto those words with hope - and it's important to remember because you've had a rougher few months it doesn't mean to say things won't settle or improve again as quickly - recovery from this thing often isn't a smooth graph line upwards, it can be very up and down. And often full recovery can start with quite a big leap forward in only a short space of time, after feeling maybe not at all great or at the same level for a longer period - so remember it can go that way Lori and things can turn around with this thing for the better in quite a dramatic and sudden way - doesn't always happen like that of course but there was a bit of that in the recovery God gave me and as you say just remember everyone's story is unique to them.

The common factor I hope, pray and believe for you and everyone on the site here is that everyone is going to get there and have the victory over this thing and get back to good and full health again thanks to God - believing in that!

Craig

I was the same Mono, I remember just thinking of myself how it seemed so impossible that my body resilience would recover that the least bit of stress, pressure or physical activity was going to set my back again, felt so fragile.

But it's amazing how your strength and resilience, physically and mentally, do come back again. Thanks to God only! Great words of encouragement for everyone Mono thanks so much for all your support to me and everyone on the site, continuing to think about you and your family.

Craig

Done nothing to deserve it Kay, it's just awful I know. Believing that day of feeling much better and free will come for you Kay, I really do believe that.

Cheers Craig. Patiently waiting. Sooner rather than later I hope.

Thank you again for sharing your perspective. The virus is so slow to budge. It is so hard to see changes in symptoms from day to day...I saw my immunologist yesterday who was sympathetic to my situation. He urged me to believe him that my immune system is competent - it just takes time like you say. He agreed to have me repeat my blood work after 3 months even though he suggested waiting another 3 to see a trend. I'm going now to get it done - hopefully I will see some improvement....He said he had a friend in her early fifties who was athletic and very high energy who was flattened by a virus for 2 years...she fully recovered and is still well 10 years later. He gave me some real clinical hope....

kikisan, let's hope I will be one of those people like your doc's friend who recovered to full fitness. It seems on here that 18m to 2 years is about the average full recovery time. I am hoping that this means that people like myself who are 15 mos in are nearly at the end of the road.

oh gosh thats such a long time ! ive read many stories whereby its been more likev 6-10 months .fingers crossed !

Hi Kay,

Let's hope we will both be! I've been sick for 10 months and like you, very active and athletic before. I always have treated my body as my temple, so this has been quite devastating for me. I am now 49. I hope I have the resilience that it takes to knock this into submission! I am in Toronto, so the winter weather is now upon us (again!)....hoping the lack of sunshine doesn't set me back. Where are you?

Kiki x

yes i think were all at different stages on here i mean some people ate able to work which is great .... some of us can barely do anything .hoping for improvement quickly for everyone !

i too worked out ate very very healthy so this was a complete shock to me and everybody who knows me as im so healthy . we'll get our mojo back once this is over ....this is my 2nd time with ebv last episode being 11 years ago . cant remember how long it took but know it was months and slow but i DID get over it . i didnt realize when dr told me you have a virus ebv that it was serious just thought i had ptsd after a bad accident so never looked into it ....plus i didnt have the mono co infection which i have now so much worse this time around .

Hi kiki,

I am in London. My sisters live in toronto or rather brampton so I visit quite regular.

oh poor you lori. how unlucky to be struck down with this twice. I do hope this will be my only time. I can't handle another dose of this.

yes i didnt give it much thought last time as didnt know much about it ...now when i got it this time a lightbulb went off and remembered the natural dr telling me i had it 11 years ago .

ive been eating mostly all health since then so it just shows you .....does diet and lifestyle really make a difference?

Hi Kay,

I lived in Shoreditch from 2009 to 2011 - loved London! If you are in Toronto and we are both well, we can have a post EBV chat. I would be thrilled if I can get to that place. I just had bloodwork done today and my WBC count is low which has made me panic. It is the lowest it's been since I March. I will be my ID doc tomorrow and will ask for a hematology referral. This is so exhausting 😦 .....and it hit -20degC today....good times!

Kiki

Hi kiki,

awesome! I am living in Wembley. Have done for the past 3 years. Prior to that I was living in Cricklewood and Battersea. I am originally Jamaican but living in UK for 17 years.

I was in toronto in Mar/Apr for easter. Will prob be back around the same time next year. Will keep u posted.

Let's hope we both will be well by then.

Agreeing fully with that Kay - standing together in that hope!

Craig

Hi Kiki,

That sounds like good and encouraging words that the immunologist offered in your appointment, it makes such a difference when a doctor / medical practitioner takes the time to be sympathetic and offer words of hope and reassurance rather than the seemingly approach which doesn't connect or seem to show concern for people's worries or emotions that seems all too common nowadays unfortunately.

I definitely agree with that sentiment of the immunologist from my own experience too Kiki - your body and immune system does get on top of this thing and kick it out, it just takes extended time for people which is the hard and frustrating part - but absolutely I believe you are going to get there and get back to full health again based on my own experience and reading so many others who have recovered fully but not until into that second year.

Hoping for a good day and phase ahead - still thinking of you and rooting for you! A nice quote I picked up from church Facebook page, also posted it on another thread apologies if anyone reading it twice! :

"Be assured that God hears your cry. May He deliver you from your deepest fears and defend you against your fiercest enemies. May He lift up you from the lot of despair, shield you from hopelessness and strengthen you as you face great storms."

Rev Malcolm Duncan

It's so hard Lori, especially for you and most of the people on here who generally have lived healthy lives, exercised, not abused their body, tried to live life in the right way. It just shows you how nasty this virus can such a group of people who have been much fitter than the average person have been affected - but be assured Lori that this fitness base will stand you in good stead in the long run and God willing hoping and praying everyone can get back to being active again with time - I truly believe that those on the site here will get back to these things in due course, patience is hard though I know and just need to focus on each day for now and keep looking to God for our strength and help and wisdom.

Craig

I think most of the guys here are in the northern hemisphere, starting to feel the winter bite - remember taking extra Vitamin D something that can really help at this time of year for sure! Starting to get very cold here in Scotland!

Craig

Just a different experience for everyone Lori - I think there are many people who recover well inside that first year, that 9-15 month seems to be a real 'moving' phase in a lot of people's recovery, for some people it can be shorter or longer, and it's not indication either way that you won't get there - just hoping and praying for a turn around and some real improvement soon for you Lori - remember as time goes on the intensity lessens too and won't be anywhere near as tough as these last few months, God willing.

Craig

Hi Jamaican sister!

I say that as I was working in Mobay for the UN earlier in the year when I had already gotten sick with CMV/EBV when in West Africa just prior, also for work. I got Dengue Fever when in Mobay - so triple whammy! I hated to quit my jobs but had no choice. I could barely walk when I left in early April. I am so worried this is something else that I picked up in Senegal. I am 10 months in and my white blood cell count has dropped to a below normal range level for the first time. I am seeing my ID doc today and will ask for a hematology consult. I am very worried. I have 4 months before you come for me to fix this body and be well. I am not religious myself but I have a l my Jamaican and West African sisters and brothers praying for me....I'll take it!

Kiki x

It's quite cold here in London as well at the moment. I don't think this weather/climate helps when you are already feeling abit rubbish.

Hi sista 😃

Wow, you have had alot of things going on. Have you been tested for Ebola? bearing in mind you were in that region?

Your body has been through so much - you were alot stronger than you think.

That's what my sister's told me when I found out I had cmv/ebv because they both knew people who have had it - one had a classmate who had it years ago and the other had a work colleague who contracted it and in both caused the persons involved were bed bound and out of work/school for at least 6 mos.

I honestly don't know how I manage to continue working through this.

Thank you sista 😉 .....I didn't think to test for ebola but you have a point. Senegal is not really in the region of outbreaks but it doesn't hurt to rule that one out for sure. I was also tested for zika and chikungunya which were negative.....you are strong to be working through this but maybe you should take more time at Christmas? I have been working a bit from home on my Senegal and Guinea Bissau projects but it has been very hard. I am really weak and had serious brain fog when all this started in March....I met a father with his 3 young children from the DRC at the eye doctor's office yesterday. I told him a bit of my story and he decided that he needed to pray for me. He took my hand and gave my some strength at that moment. He was convinced that I would be well again soon. Power of positive thinking....here's hoping things will turn around for us....x

Thank you kiki. I will be taking 10-14 December off work and I have decided I am staying put instead of traveling. I am asking taking 27 December off so I can relax Xmas day, boxing day and the 27th. Usually I take holidays and go off somewhere far afield but this illness combined with jetlag aint nice.

I started feeling ill in mid August 2017 but was only diagnosed in September this year so 13 mos after the event. During that time I continued to travel as normal.

Hi Kiki,

I hope so much that things went well at the doctor's and that they took the time to help and offer the right advice and guidance, and that they were able to offer some support and info to put your mind at rest. Just reading about all your work in Africa Kiki, it sounds like you have done so much to help other people and shown courage and bravery through your work. It's awful when ill health and circumstances cause you to have to stop working, I have also recently lost a job I had for many years and taking a bit of time to come to terms with - but Kiki remember God has a reason for everything, He may well just be preparing the path for an amazing new journey and future for you. It's scary when that can't be seen right away I know, in that kind of phase myself, but just hoping and praying that if we keep doing our best to live a good life and be sincere and trust God that He will work out all the details for us and bless us and give us new hope and opportunities and the strength and faith to follow the path He wants us to be on.

It was meant to be that man being there to come across your path and pray for you yesterday Kiki - that was God for sure and let me tell you there was something truly wise about that man - I believe he's right that you are going to be well again, I really do. Thinking of you and hoping so much for a settled and stable period ahead where you are feeling safe and well.

Craig

Definitely take all the holidays you can during December and over Christmas period Kay - you deserve it and hoping and praying it can be a peaceful time where you are feeling well and with hope for the future.

Craig

Many thanks Craig. Definitely will do.

Hi Mono

Im so glad to hear you are feeling better. I remember coming on this site earlier this year and reading your posts. It is fantastic that you can give so much hope to others including myself.

My question to you is, do you remember how you felt at the 14 month mark? Im praying that whats left of my symptoms and this dam fatigue will clear.

The fatigue is the pits, and the dizzy feeling creaps in with a cold etc.

Thankyou again for updating us with your journey ❤️

Hi sweebee,

what symptoms are you still experiencing? i am at 15 months so wanted to see if we are at the same stage symptoms wise.

I am still experiencing insomnia though it is not everynight now as it was about a year ago. Now I have about 2/3 very bad nights and the others are adequate.

I still also get the foll:

• fatigue
• brain fog
• lower back and hip pain
• unbalanced feeling
• blurred vision and floaters

These come and go though and are not an everyday occurrence.

Hi Kay

The fatigue is one of my constant symptoms, although it has improved compared to last year but still means I cant walk my dog yet. Im able to work a 40hr week but it really takes a toll.

When I catch a cold or some random virus thats going around, I get the "on a boat" feeling and pain behind my ears. With this I tend to get the odd "star/ flash" floater, its worse when Ive done too much that day.

I did have insomnia, but my GP put me on anti-depresents which help me sleep. They have been alot of help but a nightmare to get used to. It the lowest dose they do but still took like 3 -6 months for the side effects to go.

Brain fog is still something I get but put it down to fatigue. The people I work with have said that my attitude and spark has started to fire up again, as prior to all this I was a very quick witted person.

Still have 1 poor little tonsil thats hasnt returned to its normal size. Compared to the other side its about 40% bigger. Im assuming its because my body still thinks it under attack abit. Also its the same side which was effected by the meningitis (stiff neck, tingles and numbness - lh side), which is weird but anyways.

Thankfully my lower back pain around the kidneys has stopped, and the body aches seem to come and go rather than be there all the time. Still get bouts of weak muscles more so in the legs, happens when the "on a boat" feeling rears its head.

All the other horrible symptoms seem to have passed and Im so thankful, but wish the last of the stuff would go sooner rather than later. Also not having a 100% answer into what it was and only a speculation does nothing to help the anxiety hahahaha. Just got to try and laugh the fear away. After being though CT scans, MRIs and everything else this terrible virus has sent my way (and others as well), its given me a whole new aspect on life for sure.

I hope this gives you some reassurance that you are not alone, and that there is someone out there at a simiular stage to you. Feel free to drop me a private message any time if you need to talk to someone.

Sending love

Sweebee

Thanks for your detailed msg sweebee. It sounds like we are in the same boat. I can relate to everything you have said. Your msgs has surely made me feel abit better.

Aren't the floaters annoying? Some days I don't have any and other days they are like little pests!

Yes the floater suck hahahaha, but I find the fatigue more annoying. We will get there, its only a matter of time

Hi Sweebee,

I can really relate to what you have gone and been going through. I am 10 months into these viral infections and am still in very bad shape. I also have been affected on my left side and believe I had viral meningitis that was not diagnosed as such. Coordination and fine motor is more difficult on my left side. I have had a headache 24/7 since March. I had 4 MRIs and one CT which all came back normal which I frankly find hard to understand. I was so sure I had inflammation in my brain. The left side of my neck (front and back) is also still very sore. I am unable to work and will move in with family for 2019 if my recovery continues at this very slow rate. If I knew there was real light at the end of this tunnel, even if it were 2 years away, I could accept it. Not knowing how much and when we will recover (and what we are recovering from!) is very difficult. I am trying very very hard to exercise patience and to practice mindfulness. I got a blood test back today and my white blood count is below normal range. I have read about immune dysfunction with this but it is very scary nonetheless to see the values.......

Wishing you and anyone reading this a restful weekend,

Kiki x

Just catching up on your recent posts there Sweebee, Kay and Kiki - just let you know still thinking about you and rooting for you, and from someone who remembers at one year, 14 months and 15 months seeing some improvement but still very fragile and not sure whether I was going to fall off the edge of a cliff from day to day with how I was feeling, definitely want to reassure you that it is normal still to be feeling this way after this time but that things do get stronger from there, things won't always feel this way and even within another 6 months from that point I seen another major step forward and really was able to start living a much more normal and full life again.

Still believing that's going to come for you guys, thinking of you and hang in there - hoping for a good and settled weekend and week ahead for you all.

Craig

Just picking up on your point Kiki about if you only knew that things would get better, even if it was a little while away, how much better it would make you feel. The not knowing is very scary - but be assured there is recovery from this thing there really is, and believing God is going to work out all the detail and that light at the end of the tunnel is there, and even if you can't see it right now it is there and you will get there - 100% I believe that.

Craig

Craig,

Your words are comforting. I thank you for the specificity in your messages. You are listening and your responses have a reassuring weight. These past days really have been difficult as my bloodwork is showing immune dysfunction with my WBCs being so low. Of course the mind goes to a dark place....maybe this or these virus(es) have triggered something more sinister. Like you, I am someone who has treated my body with care and respect so this does feel like a betrayal.....that falling off a cliff feeling resonates....I do hope that you heed your own advice and believe in your own recovery as I know you too are being challenged physically right now....Let us truly believe in our own healing...may it come to us all in good time.

Kiki x

Thanks Kiki,

I'm so sorry that you've been having a tough few days and I just hope that they are able to do a follow up blood test soon and it can show things more reassuring, it's very frightening when test results cause worry and panic I know when you so much just want them to put your mind at rest and give you hope. Thinking about you Kiki, this has been one awful year for you and most of the people on the site I know - just hoping for better times ahead and let's not give up because sometimes it's just at the lowest or hardest point that things can turn around.

Yes definitely will try to be better at heeding the good advice too, have messed up myself in so many ways lately and need to do much better.

Hang in there and let's continue to stick together and encourage each other, that certainly counts for something positive and believing it can and will help for sure in the recovery process.

Craig

Hi Kay

Just wanted to check in and see how you have been traveling these last few weeks.

Hi sweebee,

How are you?

I am not too bad at the moment. I have this week off work so just chilling at home catching up on telly and resting. I have slept really well the last 3 nights - I think the fact I don't have the pressure of going to work has relaxed me so I am doing alot better for it. Long may it continue.

Hi Kay

Glad to hear you have the week off work, I had last week off as feeling really stressed. It did help but sitting here at work now the stress is just as bad. Hoping your sleep filled nights continue ❤️

Are by any chance seeing a natural doctor? Saw mine last week and she suggested that I do a hormone test to see how thats traveling after this virus. She said that if any levels are low we can try bioidentical hormones? It will be interesting to learn if they have dropped etc.

Enjoy your week off 😃

Hi Sweebee,

Hoping that you are doing okay and get on okay with the natural doctor's test if you are getting that done. Still think you have done amazing to be working despite what you've been through, and just want to reassure you that your body won't always feel as unsettled and tired as it might be feeling now Sweebee, it really will get better and just hoping and praying for good and healthy times ahead - truly believing you are going to get your breakthrough, hang in there and still thinking about you 😃

Craig

Hi there,

Thanks very much. Yes, I am enjoying waking up late and not thinking about the office or my colleague.

Sorry to hear that you are a little stressed with being back at work. Hope this improves and you will get some time off over the Xmas holidays.

I was seeing an acupuncturist/nutritionist from September last year upto March this year. She had done a This was way before I got a diagnosis but I was feeling very poorly and not knowing what was wrong. The acupuncture did help a little but it wasn't long lasting and was very costly. I was paying £70 per 45 min session and there were times I was seeing her twice a week. She had recommended I do a cortisol test which came back showing my cortisol levels were all over the place which was causing the insomnia. She had diagnosed me with adrenal fatigue.

I was put on some chinese herbs at one point but didn't find them very helpful.

At the moment I am just taking various supplements, trying to avoid stress as much as possible, eating well. I do also see a chiropractor fortnightly.

Hi Kay

cant say Ive tried acupuncture but it has been suggested to me. They can be so expensive, and Im also scared of needles soooo not going there hahahaha. I do see a chiro as well, which has helped alot

yeah my natural doc also diagnosed me with adrenal fatigue, but said its because I had to continue pushing onwards whilst the virus beat my poor body down. She said that its why the fatigue is lasting so long, but guess it can be also caused post viral or whatever. It will be interesting to see what comes from this test, but hoping it opens up another road to recovery...but it could also lead to nothing as well.

Hoping you also get some time off over christmas. Thanks

It's so frustrating that these kind of treatments are so expensive Kay, hoping that that the supplements and things are helping, sometimes it's just trial and error to see what works and what helps for sure. As well as some of the ones I usually mention on here, other ones I've learned recently that are quite good at being anti-viral / anti-bacterial include golden seal, oregano, astragalus root and neem. Hoping that the chiropracter is helping, I am finding that the osteopath has been helping my back although it is expensive too.

Craig

Thanks very much Sweebee. Hope you will have some time off too.

I will have 25, 26 and 27 off so will be chilling at a spa for Xmas.

The needles aren't painful. You feel the odd prick but I don't find it off putting.

I find the chiropractic treatment very helpful also.

I had never heard of adrenal fatigue until I as diagnosed but it all makes sense now.

I will look into those supplements you mentioned.

Yes the chiropractor is helping somewhat and it does make me feel better abt myself. Yea it is quite costly but it make even a small difference so it is worth it.

Good luck with the test from the natural doctor Sweebee, hoping it can lead to something positive and to recovery - be it through this test or through other means I really do believe that a breakthrough is on its way for you.

The post viral is a horrible thing Sweebee it really is, it just seems to be the kind of thing that takes longer to get over for some than it does for others unfortunately - but just because it takes a bit longer doesn't mean to say that recovery won't happen, there is hope Sweebee keeping you in my thoughts and prayers, God is working on this and has got you in the palm of His hand.

Hoping for a good day today and hang in there!

Craig

Just a few suggestions Kay, again make sure you look into the things yourself because it's only on fleeting internet browsing that I often look into these things and certainly am no expert - it's always worth checking up any possible side effects or interactions too, last thing want is anything that causes other issues.

I'm hoping that today can be a good day for you Kay and you are feeling well and can make it to the theatre for your night out - have a great time and enjoy yourself, hoping you are able to manage.

Craig

thanks very much Craig. I will definitely do my own research on these supplements.

I will also definitely go to the theatre. In two minds still abt the dinner before hand.

Enjoy the theatre Kay and just see how you feel regarding dinner beforehand, do what is best for you and not just to please others!

Absolutely! I have done with people pleasing. From now on I am doing what is right for me.

That's good Kay when recovering from this virus you really need to look after your body and your health and not exert yourself just on the call of others, who often don't understand what you are experiencing anyway!

Hoping today can be a good and settled day for you and that you are not feeling too tired after the theatre last night - how did it go? I hope you felt well and managed to have a nice time. If feeling tired today, which would be normal after something like that, just give yourself some time and space to take it easy for sure!

Craig

That sounds like something to look forward to the spa over Christmas Kay!! Definitely sounds like it will be a relaxing thing to do just what you need!

Yeah I've had acupuncture too, the needs don't hurt just a little prick here or there as you say, I know some people find it really helpful with things - I quite like the acupuncture sensation in a strange kind of way!

Craig

It went well Craig. I did in fact make it to the dinner as well. I totally recommend Tina.

Made it to bed abt 2am and slept until almost 11.

Feeling ok today except for achy back which seems to be in my bum. I hv chiro tomorrow so hopefully that will sort me out.

i am really looking forward to the xmas break.

yea with acupuncture I feel an immediate high

Hi Kay,

That was great you made it for both the dinner and theatre, sounds like a good show, is it all Tina Turner music? That sounds like it would have been good fun!

Hoping that your back is feeling bit better today and that the chiro goes well today and it can help settle things down, I am going to osteopath on Tuesday (God willing) and I know it is always reassuring to know I have that ahead if having a not so good day with back or whatever.

Have a great weekend Kay and remember you still have the spa to look forward to also even when this holiday is over.

Craig

It was mostly Tina's music though there were others thrown it. It was about Tina's life story.

Yea feeling more supple after the chiro. I will have to remember to do my stretches.

Great sounds like a good show Kay!! That's good you are doing stretches to help Kay, I have been trying to do that in the mornings too although I know I could be doing more or doing better with it. Was thinking about pilates or body balance but kind of proscratinating on it and hoping God can us to the right form of exercises / routine to help our issues at the moment and can really go for it and not delay.

Hoping you are having a good and settled weekend Kay and not too tired after being out for dinner and to the theatre the other night.

Craig

Apart from the achy stiffness I feel ok today. Lets hope my stress levels don't rise as I return to work tomorrow..

I didn't do any exercise last week so I need to break the habit.

Hoping your first day back at work is a smooth and stress-free one Kay, still remember it's a priority to look after yourself and your health in that setting, even if there is a big workload or others are bringing stress / hassle, you are only one person and you must remember you are still recovering and your health is most important thing right now. And of course you have the spa to look forward to so hoping that can help you through this week knowing that.

Craig

So far so good. It takes some getting use to sitting upright at a desk again after you have had a week lounging around at home. I think now with Xmas coming things are getting abit quieter in the office so thank God for that.

Well that's good that it is a bit of a quieter week, hoping it can be quite a smooth one then and you can ease your way back in rather than being under lots of pressure. Wish could take away the bad stress and pressure the work place causes so many people these days.

Craig

Yea, you are so right.

Funny I was taking to one of my colleagues this morning and he was asking me how my sleep was last week when I was off work. He has concluded that work is my problem!

Oh work is a big factor in stress for so many people that's for sure Kay. I wish we had the approach of some of those other countries that seem to do better at focussing on treating employees well as a priority, here people just seem to be stretched more and more due to public cuts and everything else going on.

Remember Kay your health comes first and just go at the pace that's right for your body and recovery right now - you are an honest worker and it's only right and fair that you prioritise your health and that your workplace shows a duty of care for your health and is understanding that you're just getting back on your feet after such a tough time.

Hoping for a good day today and still believing that full health and recovery is manifesting and will be seen in 2019.

Craig

Thank you very much Craig. Appreciated.