Mono need help

Hi Sam ,

i totally agree, I've not been on a night out or drank alcohol for a whole year now. And I would agree that the depression is the worst bit of all.

i also agree that I am doing lots better and doing more in the day but at 8 1/2 months I still felt like a long way off from full recovery....now, I have no clue, but close people around me can see how much more I do now. Things just get slowly better.

i made a diary all of last year

1/1/17 read....wiped out and really teary.

1/1/18 now reads, walked dog, cooked dinner!! 

Couldnt have done that a year ago!!

caroline x

Hey Caroline,

Thats encouraging news. I keep a diary also but have only done for the past month.

I have had longer spells of good days than bad as of late but even a good day isn't really a GOOD day.. it is just an improvement day but I don't by any means feel normal. 

Do you know many other people who have taken this long to recover? I just don't understand how some people can get over this in a matter of weeks when clearly it is a very very long road to recovery!

Its so great to see that you have made some good improvements and I really do wish you a full recovery soon. Any improvement in my eyes is a form of change which means that it has to be possible to completely overcome this virus!

Sam

H Sam,

yes, when I used to write down a good day, it was not 'good' compared to normal just a lot better than I had been! 

After speaking to friends and people my mum knows, I learnt of about 5 that took them a year or over to get better. It took my brothers friends two years, he is fine now.

also my friends daughter who was 15 when she got in in aug2016 is doing so much better now, but still has the odd day in bed and can get tired (she's lucky that she doesn't have a house to run)  so it's slowly happening for her too. She is back at college and part time work.

i have no idea how people barely have symptoms or don't suffer, it's horrific!

thanks for the kind words, you will keep getting better and recover fully too!! I had an amazing 3 weeks in november, thought that was it but then had another dip.

we will all get there

Hi Sam, I’m at nearly 8 months and feel exactly the same as you. I’ve started to have the odd better day but still feeling ill all the time. If I eat I get pain and bloated and if I don’t eat I get the same pains 😭 the only thing I’ve found that helped the dizzy feeling strangely was having a nasty cold over Christmas. Now it’s wearing off it’s coming back 😕

Now minute to minute is different. Sometimes I feel ok and sometimes exhausted. It’s so strange. I think I might try a clean diet in a few days. If it helps I’ll do anything. 

Sorry you are still struggling - that’s a really long time to be sick. I know how endless this feels. It’s like life is on pause. 

Hi Lisa/Sam,

it it does feel like life on pause.

i decided only about 3 weeks ago to give up sugar completely and bread, some carbs. Also switched to decaf tea.

im hoping it helps, if nothing else it's helping me loose the pounds I put on over this last year!  I think it is helping.

I too have put back on the weight I lost initially. It’s so frustrating because my muscles are dying for a good workout! But I know better. 

My resolution was to take it one day at a time and stop worrying about the future. As long as there is an end to this crappy virus I can get through it. 

Brilliant resolution, just take it one day, as that's all we have, def worry less,! Can't do much else!

it will happen for all of us...that's for sure. It would be easier if we knew the end date though. 

Hi Sam,

It took me a full year to feel like myself, less energy but overall much better. At eight months I wasn't  feeling very good and had little energy. It starts out with a few good days and then back down again( like a roller coaster) eventually though like Caroline you look back and see how far you have come.

I always looked for recovery stories and the people on this forum were a lifeline. I think that this virus has morphed from its original form and is stronger or maybe it is individual immune response, who knows it is miserable for sure, I never realized how long a person could be sick.

My granddaughter had to go on independent study and she is not working right now just recovering. She is feeling a little better. You will get there, it is not unusual to go through the relapse phase. Just know you will get better its just a tough virus and takes a lot of tine to get over.

Hi Christy,

i would get that breathlessness.

dont think you're not making progress because you are, its just a relapse as mono says,  it makes you feel like you're getting no where though, ( I felt like that for sure) and I think that's the worst bit, when you have felt OK and then struggle again. Don't struggle or push yourself or feel bad, just go easy, accept it. And it will soon turn around.

this happened to me loads

xx

I don’t know how you are going to school! Are you able to homeschool for a month or two while you recover? 

Hang in there Christy. My relapses, while absolutely sucked, at least were never as bad as the initial few months. 

Hi Lisa I hope you don’t release you deserved to enjoy that walk. And I tried to do home schooling but the process was so hard. My school let me take a month off and work from home but after a month i needed actual documentation but mono only last supposely for 6 weeks and it takes 6 months to get a diagnosis of cfs so I was caught in the middle of the time frame. So I just went back to school 😩

Sorry I haven't had the chance to catch up with everyone's messages last few days, been having a bit of a hard time the last week or so, but still thinking about you all and hoping and praying for your recovery in the name of Jesus Christ, the great healer.

Craig

Arggg that stinks!  I guess there's a documentary that just came out on CFS.  It's called Unrest.  I'm going to check it out.  But from what I've read- what we have is not CFS.  If anything we have a chronic EBV infection that makes us feel like crap.  And from what I've read CFS comes with extreme sensitivity to light and sound.  I don't have that at all.  And- I don't know if CFS has moments of remission? I really think we all just are having a hard time adjusting to that stupid virus that never leaves our system.  

I've been on these anti viral meds for 27 days and so far I haven't relapsed.  It could just be that my body is getting better on it's own or the meds are working.  I'm taking them for another month and a half then am getting off of them.  Maybe talk to your doc about it?  My regular doc wasn't familiar with treating post mono fatigue with anti virals but my naturopath was.  She's had patients get much better on them.  And at this point I will try anything to get rid of this.  And they have zero side affects for me and are cheap with my insurance ($10 a month.)

Any who- Godless on netflix is so good!  If you like Westerns.  

Lisa, 

i agree with you totally about us not having CFS but it rather being a chronic ebv infection. I think it's a good sign the moments of normality we have and as time goes on, it gets greater.

ive been swimming again today, out shopping, felt normal, although in bed early with warm legs still but I know I'm getting there slowly.

caroline x

Swimming?  That sounds so so lovely!  I can't wait to swim! Yay for feeling normal! You are on your way to a full recovery and that is so so reassuring.

My yoga studio felt so bad about me being sick they gifted me a workshop that's Friday evenings  for 6 weeks all about being present and mindful and nutrition.  I'm so excited to actually do something that's both relaxing and good for me.  

Your progress gives me hope!! 

Lisa,

im glad you feel hopeful.  I'm grateful I have these good times when j can take my boys swimming... And I don't ache, and my arms don't ache!!!  And I am consistently doing more.  My passion was/is ballet, but I'm a bot way off for that yet!!😂

*Bit way off.🙄