Let’s talk about progress
Posted , 7 users are following.
Hey friends,
I haven't posted here in a while because--well--I've been feeling really good lately. I had a stretch of almost 3 weeks of feeling normal--making it through entire days full of energy with no crash.
but yesterday was one of those... days. woke up with that "hit by a truck" feeling that stuck around all day, and I couldn't rest because the family was over for Thanksgiving. It was a huge bummer after such a long stretch of health.
Today I woke up with a similar feeling again--i'm afraid that another phase of illness is coming on. So of course I was brought back to that wonderful page of recovery stories and have spent the last hour reading through them. Now, though physically still feeling very weak and tired, I feel mentally refreshed--focusing on how far I've come in my recovery. It's kind of incredible that I can feel as low as I do and still have a positive attitude somehow--it's one of very few gifts that this virus brings us.
Anyway, I thought I'd just throw some words of encouragement out there:
What you're going through is very difficult, but we are fortunate in that it is something that passes with time. We will get our lives back and be ourselves again. Nobody who isn't going through it or hasn't gone through it cannot understand. And that's okay--we have each other.
I want to encourage you all to write something about your progress here, even if it's only minor. Tell us how far you've come in your recovery even if you're still in the thick of it. These words go a long way for the writer and the reader.
Always thinking about you guys.
3 likes, 6 replies
Malene willis42
Posted
Thanks for your post Willis, I hope you'll get through this bump in the road soon, however miserable it is to relapse. 👍😊
I contracted the virus a year and a half ago, and every week I still have a couple of days with low grade fever.
It's a very slow path to healing, but it's there, and there are fewer days with fever now than a month ago. That's a good thing to focus on.
I also experience a lot of care for myself, getting priorities a little straighter, knowing where my support is coming from. Learning who in my circle may not be able - or not have the energy - to show concern and comfort.
This site is what keeps me calm, knowing that so many others have been unwell just as long as me, or longer. I truly would have constantly doubted, what is wrong with me, without all of everyone's posts here and support. Thanks!
lob12506 willis42
Posted
hello, Ive been ill for longer than most on here. I still feel ill and especially my brain is still affected. The first year I had this I was either at doctors or at home in bed. now its mine second year at uni, and even though I miss more than half of the lectures, and pretty much do nothing apart from uni, Im passing the academic staff easily. Also I started living alone 1600km away from home so thats a challange I accomplished as well.
on the other side, the smallest activities makes me tired and feeling bad again. walking, showering, just sitting down for too long and I feel worse the next day again. Im very far from having a normal active day like before. I can do it but Im gonna relapse.I can do maybe 20 % of what I could without relapsing. Im resting bit time now and feel like its improving. I always think about how I could have been fit already if I started resting properly earlier and not 3 years into the illness. The good news is that my heart rate improved massively since than. its finally regular, much lower, and doesnt feel like hammering in my chest. Hopefully if Im resting enough like this, im gonna recover at 4 year mark. I dont feel like Im ever gonna recover psychologically though. I dont feel like I am gonna be able to forgive myself for not resting properly for such a long time and therefore missing 4 years of my life.
lori939 willis42
Posted
i was doing great for a few months mini workouts most nights very stable . then i crashed a few weeks ago ... im in month 20.
went for a few hours to neighbors Thanksgiving and feel terrible today . wasnt a late night but i guess just talking making conversation can relapse you .
gosh who knows when this is all over .. so sick of it !!!
lob12506 lori939
Posted
same for me with the thanksgiving:(( food was worth it though
lisa29739 willis42
Posted
Hey there- 2 1/2 years for me. I struggle like Lob. i have to be super careful with my energy. I tried Valtrex in Sept and also got an intense neck/shoulder massage. I relapsed the worst its been for 6 weeks. Just coming out of it.
I can't work- at least not away from home. But i have been able to drive around my town this whole time. I can get my kids to school and to sports. Also when I’m in a good stretch I can go to dinner and see movies. I just have to be careful not to exert myself too much. I’m not sure how much I’ve improved or if I’ve gotten better at managing my sickness. The good news is I’ve had just about every part of my body checked and there’s nothing more serious going on. It is still frustrating that no one seems to know what is continuing to make me sick. I’m just keeping hope that one day it’ll eventually fade away. And I was finally able to get an appointment with a rheumatologist next week. Then just have to do a sleep study to make sure I don’t have apnea and I hopefully will be done with doctors for a while.
I agree with Lob – I definitely feel some PTSD with this. Being that incredibly sick and having zero control over your body is just terrifying. Hoping to get into therapy by January. In the meantime, I've taken up meditation and it definitely helps!
emma198181 willis42
Posted
Hi Willis,
What a great idea for a thread 😃
Like you, I often come on here when I need encouragement and a bit of a mental 'reset'. The relief and reassurance I've found in this forum has been nothing short of a lifesaver.
I'm almost 4 months in, and while the virus and its effects are still very much a part of my life, things are nowhere near as bad as they were for the first two months. I try to remind myself of that whenever a symptom comes back or I have a bad day in terms of anxiety (and anxiety has been the pointy end of the blade for me, sheer hell).
I even began 'exercising' again this week - but when I say exercising, it's nothing close to what I used to do. But it's encouraging given there were a few weeks there when I never thought I'd be able to go for a long walk again, much less do actual exercise.
I have had a rough couple of days as my daughter came home from preschool with a cold, and I picked it up. It's like the mono waits for you to become vulnerable and then rears its ugly head - the anxiety kicked in, I got shaky, and my joints started hurting. But hey, three steps forward, two steps back.
I'm very careful to eat properly and have as much in the way of fruit and veg as I can fit in. I also take folate and St John's Wort, which is meant to be both an anti-viral and helpful for anxiety.
Sending healing vibes to everyone here x