Setback? Or start of CFS?
Posted , 2 users are following.
OK so.... I was 5-6ish weeks active infection throughout end of May/June and now about 6 weeks in "recovery".
Literally been bedbound/housebound the whole time.
The past 2 weeks I had a bit of a feeling of normality and thinking clearer, was able to walk to the store across the street once a day (sarcastic "woop").
Earlier this week, was able to take small walks around the block.... 3,000 steps.. 4,000 steps...was managing OK. Stupidly on Friday, I agreed to meet a friend to try walk together (because I feel so so socially f*****g isolated). Accidentally walked too much oh my god and crashed in the park. In fairness, we walked 8,000 steps. Had to lie down in the park, get a taxi home and been bedbound since.
This virus is f*****g evil. Soooo evil. Like one taste of happiness and mono destroys it??
Is it normal to end up bedbound again? My glands aren't swollen but my neck is sore. Exhausted and brain fog.
I have had a lump removed from my breast and it wasn't this bad. Cov!d has nothing on this virus!!!
Yes I am aware I did too much too soon. I know I should've paced more. I think I just got so excited and carried away 😭
Does this happen with mono?? Just from walking? Or is this CFS territory?
I stupidly also read a study about how to predict CFS in mono patients and one of the predictors talks about the severity of the initial infection. My infection was so bad with neurological issues that I was hospitalised... and now I feel doomed 😅 one day of a long walk and I am housebound again. so so scared.
0 likes, 8 replies
amin05697 lucy73863
Edited
Hi!
Your are still in the beginning stage of your illness, and this crashes are expected. However, never push your body through. That would delay your illness. Avoid the vicious cycle of boom and boosts!
Remember that this illness is way too nonlinear. e.g. if your baseline is already 3000 steps a day, by pushing your body to 5000 steps at some day, you may experience a 4-day crash, while by pushing your body to 8000 steps, you may need 30 days to bounce back!
After every crash, even after several days of rest when you feel quite energetic, don't get deceived by your body and don't assume to have the same energy level as you had before the crash; you should begin from the scratch and build your baseline again, very slowly and gradually.
Remember that adding to your baseline should be done very conservatively, like 10% at each step, and then wait at least 2 weeks monitoring your symptoms to make sure that your body can tolerate than increase (for e.g. disruption of your sleep quality and quantity is a warning sign that your body cannot tolerate that and you need to go back to your previous baseline).
Have a lot of uninterrupted deep rest each day (like lying down and elevating your legs). Remember that you should even count sitting hours as strenuous activities.
amin05697 lucy73863
Posted
But don't panic ! these crashes happens for every person with mono, until they learn how to deal with this illness.
What is most important, is to not allow BIG crashes to happen.
In the occasion you push through, immediately allow your body to bounce back, by radical rest the next days, and expect to see a decline in your baseline energy afterward, but this is normal and can be rebound gradually. It only takes you longer time and postpones your progress.
lucy73863 amin05697
Posted
thanks so much for taking the time to reply. I really appreciate it.
Yeah I definitely got carried away with myself, I just got so excited at the thought of being semi normal... I have been bedbound and housebound for what feels like forever.
it's such a horrible virus.
glad to hear that this is normal... because I just feel like I have been so severe with mono that I must be alone in this. My doctor made it seem like mono is just a walk in the park, just a sore throat and tiredness. no way.... no way.
It's so hard to accept that I'm back mostly bedbound again. I've lost my job, feel forgotten by some friends.... just want life back.
thanks for taking the time. I hope you are doing OK.
I have learned my lesson and will not be rushing anything 😅
amin05697 lucy73863
Edited
Unfortunately, most doctors are not well informed about this illness, and the ensuing fatigue syndrome. My infectious specialist , the last time I visited him, only prescribes some multivitamins and anti-depressants. The result is that patients after 3 months , when they still feel sick, assume that they are exceptional and have have to live the rest of their lives with cfs. I know many patients (on Instagram) that recovered after1 or 2 or 3 years.
I was bedbound for almost 2 months the last winter. Now I can afford walking around 12000 steps a day, or working our for 1 hour x 3 times a week. Still I need to be patient and realistic, to not fall into the same trap that made me bedbound several times, i.e. I have to refrain my urge to resume my pre-illness activities. All my previous setbacks were either due to Covid infections, or because I wasn't patient enough and assumed that I was fully recovered, and pushed my body through.
Patience is crucial for recovery. The psychological pressure is high, partly because we loss a lot of things (like friends, outdoor activities, exercise, work...), partly because we can't see a promising perspective, and partly because we experience cognitive and memory issues which interferes with our sense of self. Acceptance and patience is needed, and you have to anticipate all this issues.
lucy73863 amin05697
Posted
yeah, doctors are quick to give labels because I suppose the timelines trajectories are so varied. no 2 patients are the same... its so complex and the path isn't linear at all.
i had made huge progress until I overdid it on the walk... actually beating myself up over it so much. I wish I just stayed within my limits because I feel worse and all the anxiety about CFS and not recovering has come back. it's so so cruel.
yes, I have spoken to another person who said they needed like 1 year to be functional and then like another 6 months to get back to their life.
the patience is horrible. the not knowing is horrible. just feel so alone with it all. I can manage OK when the symptoms are reduced but when the symptoms flare like this omg... I just want to give up altogether. it's taken 5 days and I'm still not recovered from the flare up on Friday. I'm cognitively clearer but physically wiped. Cleaning my kitchen makes me need to lie down again. so so horrible.
i need to learn to let go. and accept. I just miss the gym so much, it used to help my anxiety so much.
do you mind me asking if you are working at all?
thanks for reading and being so helpful.
amin05697 lucy73863
Posted
No problem!
I haven't been able to work since 21 months of my illness, except for a short period of time when I had partial progress around month 9, but then overdid and crashed.
Actually, even sitting at a desk drains my energy. In addition, since my work is cognitively demanding, and due to the cognitive complications of this illness, I can't work.
However, over the past two months again I have been experiencing noticeable progress, and I hope that soon I will be able to work part-time.
lucy73863 amin05697
Posted
well done on your progress!!
that's amazing to hear. I hope it continues for you and that you can get normality slowly back.
also well done for managing 21 months of this. i wouldn't be able😅
I had been debating about going back to do my part time studies this October (have been saving for years to do this course) but since this crash happened... I'm feeling its not the best idea.
I had been looking forward to it because I feel like such an unproductive bum just existing in a body that's not working anymore. I thought the course would be a good distraction from the health anxiety but I suppose its not my year 😅 best to wait.
this virus is so so cruel, I think I am honestly experiencing grief from it.
amin05697 lucy73863
Posted
When I first heard from the doctors that this illness might take 3 months to heal, I became so mad and impatient, but now if someone can assure me that I will be struggling for another 12 months and then I will be recovered fully, I will be the happiest person on the earth!