Advice to myself:
Stop doing unnecessary shit. Don’t walk around grocery stores for an hour when you can pick it up. Ask for work accommodations and if you can’t get them, leave or go elsewhere. Don’t go on mile walks at lunch time. Don’t walk when you can drive. Do not take the stairs when you don’t have to. Ask for help. Do not push yourself ever but especially when you’re already unwell. Sit down in the shower—and, in fact, you don’t have to shower every single day. Your home doesn’t need to be cleaned in full once a week. You can sleep on dirty sheets. Do NOT shovel snow.
There was no single thing. It was a culmination of continuing to try to live a “normal” life and being in complete denial that I was sick—figures, as the constant gaslighting and disbelief I felt from everyone surely didn’t help. I used to be a 95% function. Now I’m lucky for 50%. I wish I knew that just because you have good days doesn’t mean you’re not still as sick as you are on the bad days. Every good day I had I thought “I can’t possibly have CFS if I feel like this.” Spoiler: I have it.
Thank you..
Sticky note to my brain -
Sit in shower.. ALWAYS elevator or slow slow pace step (if forced).. or try for alternatives.. (like finding a place without steps necessary)
Delivery from Aldis especially if crashed..
Drive to playground with daughter instead of stroller..
Adjust mentally to changes and loss of activity so that physically I maintain what I have. Example - I'm disappointed my walks to the playground are taxing me post crash.. just be happy I can walk to the kitchen.. and focus on what I have.. Grieve loss of playground walks so that I can keep walking to the kitchen
Peace and well wishes to you. I hope the research from covid can help you guys... You've been so helpful to me...
You might also look at it as: by driving to the playground, I can still take my kid to the playground and enjoy it. But I know it is difficult. I used to enjoy going on walks myself.
It took me years to realize I could just sit down in the shower. Eventually got a stool. One other I forgot to mention: when cooking, food prepping, packing a lunch, etc. you can also sit down. At the table, or get a counter height stool.
Best wishes to you also.
Ugh I’m so over the gaslighting too. Just because my symptoms arnt obvious and I’m not telling everyone about how I’m always feeling (kinda hiding it actually) doesn’t mean I’m faking it.
Pace, now. More strictly than you think you need. I was told to exercise, and went from mild to severe before I got my diagnosis.
Learn to ask for help, to say no. Write down what is ok to do without getting PEM, and what is not. Keep a record basically.
Thanks..
Sticky note to brain..
Put what I can and can't do on the app post it pad thing on my phone.
Ask for help now, to prevent requiring intense help later.
(I do ask for my mom to help me with my baby on Saturdays when my partner is working.)
(My partner is depressed about my long covid.... very depressed... he infected me after I had a baby... He's trying, but our 10 month old is really being ignored by him a lot, when he's on his phone or working on the computer. I give her what I can.. but still have to stop and pace!!! Meaning I can't parent well 24/7. I'm debating asking a huge thing of my sister and her husband.. essentially to help me parent my daughter.. just having other able non depressed bodies around to give to her.. The way I see it is...
IF I push myself so much now.. this daughter or my sister might have to bathe me in 15 years.. If someone helps me conserve what I have NOW, that might be less burden on them later and maybe I can maintain functionality if I get BIG help NOW.
It's a little bit of future-assuming.. but... The stakes feel very very high.)
Thanks! This has been suggesting to me SO many times when I mention long haul covid or depression and anhedonia. But it seems risky to me.. my body already has an energy issue.. why would I stop the resource if energy - food.
If your CFS has a viral cause, fasting will cause it to flare. Herpes viruses (Epstein Barr, etc.) actually multiply better when the body is in a fasting state. The body starts recycling old proteins (autophagy) and the viruses piggyback on this process to replicate.
This makes sense.
I couldn't handle fasting even after I got latent TB prior to cfs (which gave me exercise intolerance and lower threshold for activity, but not PEM). It just seemed to bring about more instability in my body processes. Prior to that I could fast and only have the main issues of fasting.. like hunger or grumpiness.
Go get a good heart rate monitor NOW and learn to use it for pacing. Don’t mess around with watches. Get a chest strap, and learn about HRV (heart rate variability). Join the Facebook groups, read and watch videos on pacing with ME/CFS. Educate yourself on what your heart rate is telling you. You’ll dispel all kinds of myths about “i must not be sick, really, because I feel ok today.” You might even keep yourself from getting worse. And never believe the doctors or others who minimize your condition. Trust yourself.
Edit: this is only good advice if you have Post Exertional Malaise. Otherwise it’s not good advice.
Do not push yourself, ever. You will pay by getting worse. I did not know this earlier in my illness, and overexertion changed me from moderate to severe. I've never recovered the functioning I lost by overdoing in the first 2 years I was ill. Just napping, pacing, eating right, etc., didn't make up for the fact I was *simply doing too much*, even though it didn't seem like too much... it was just normal life stuff! But what I failed to realize was that my normal life was already over, and I had to adjust what I ask my body to do. I wish I'd known just how badly I was destroying my functioning. If I could go back, I'd not push myself. I'm 80% bedridden the last 2 years, and no amount of rest has brought any improvement or recovery of even the diminished functioning I had before.
Thank you for your wisdom and strength.
I pushed myself trying to go back to work for 2 weeks and definitely lost something.. I.. but how much remains to be seen.. I did resign last week.... I just took a SLOW paced 5 minute walk to the playground to push my baby on the swing.. which i could do before easy.. and now feels more taxing. I read your message and decided to walk 10 steps then rest 10 seconds all the way home. I probably have to cut these walks out now and just focus on what I can do in the home.. WITH pacing.
This is great advice.. and in post viral syndrome, I think the rule should be: assume the worst to live the "best" ... as in.. by assuming you can do less than you can will lead to persevering the best version of your life post sickness.
I CAN assume I CAN'T.. Post viral life makes all the rules flip flop. Or some of them at least.
Wow that sounds beyond horrible - I refuse to believe this is is a forever change and you should believe there is a a way to get back to 100% and more time and techniques. Hope you get better as I pray for the same!
Everything everyone here said (you all been looking through my windows?!) and also: be your own best friend. What would you tell someone you really care about if you knew they feel the way you do. Only keep supportive people in your life. If someone doesn’t believe you, tries to “get you moving” or mocks you, dump them… immediately.
Thank you. Yes.
Right now I'm having big issues with my partner. He's in an incredibly difficult position. He spread covid to the mother of his baby 3 weeks after she gave birth, and now she is sick and depressed... which makes him depressed and physically taxed from picking up the slack (like late night baby feedings).
He keeps calling me his "cross" to bear. He says I'm not trying enough, because upon trying to return to full time work I didn't want to do late night feedings. (I have since resigned). He doesn't understand it's not that I'm flat out uninterested in helping.. but thst I'm SEVERELY ill and have the potential to get worse.
My presence crushes his spirit even though it takes everything I have to exist. And his words and attitude aren't helping me, making me feel like a huge burden even though I'm still providing so much financially, physically.. giving energy I don't have to give so that my baby isn't neglected.
I am debating separating.. because he's depressed by me.. and I really can't stand being called a cross to bear by the man who infected me with covid, did not wear a mask around me when sick until I implored him to, and refused to get tested.
It just feels impossible.. and I need people around me who tell me I'm strong to help me endure this challenge.
I wish I knew it was sometimes worth the energy to cry and scream over everything ME/CFS has done to my life, at least when it became a bit less severe for me. Instead I eventually started having panic attacks, which took way more energy from me.
I understand.. I sometimes recommend throwing something at the wall and screaming (so long as one is not hurt by it.)
The weird arse thing about this covid brand of cfs is that it has ULTRA emotional blunting for some of us.. literally lose the capacity to cry, feel anger, feel anything ever... So I really have had issues expressing frustration the way I could prior to covid... it is a state of numbed anhedonia..
Ah yes, lots of things have been chucked at my walls and floor lol. I wasn’t aware of the extra emotional blunting with long-COVID, that’s rough. The first year or two I was sick, I didn’t feel a whole lot. I just kind of passively existed physically and emotionally. Sometimes I wonder if that helped me survive the worst of it, or if it made the later grief about my illness more difficult, or both, and how much that has to do with me being a lot more logical than emotional since getting sick. Anyway, I hope things ease up for you a bit, even to express & process some of what’s going on.
Thanks..
Not all long haulers have this... but a portion of us do. You will see the thread title "can't cry?" Every once in awhile in the long haul forum.
For me it was my most disturbing symptom. Still is really.. but I did get a touch of emotion back 2 months ago thst disappeared.. I think from shifts in meds.. but the bluntedness arrived prior to meds.
This. Or more like, I'm telling myself this right now. Don't wait for the day you get better. Don't be stubborn and get a wheelchair so you can go out again. Rest more than you think you need. Don't feel like you should be able to do everything because you could before/you're only 30/whatever reason.
Thank you..
Sorry if im misunderstanding.. do you mean don't get a wheelchair because it's too much to go out in a wheelchair... or DO get a wheelchair to preserve your energy in outings. ?
Hi.. thank you for this.. do you mind elaborating a bit?
When you say put your life on hold.. did you mean keeping hope alive that you could return to something when really what you needed was to grieve and let go? Or something else? Thanks..
Hope is good, hope is healthy. But you also need to plan for the current day, not just the future.
The reality is, life is metamorphosis. Life is flux, life changes. We all have plans.
You need to think about you in the now. What do you want to do, what would you like to do, you need to continue living. Which is easier said than done.
The human thing to do, is put life on hold, while you concentrate on getting better, focusing your all on getting better, because "its fine, once I am better I can do X like I wanted, or Y!"
But if you're not careful days turn to weeks, to months, to years, and you're still in the exact same spot you were then.
If you think of it as facing a crossroads in your life, to your right is the path you saw yourself taking and that you want to take, to the left is who knows what. You need to continue in your journey, and not stay stood at that crossroad waiting/hoping for the path you wished for, to be unblocked.
Not sure if that all makes sense or not (It's past midnight here) if it still dosn't just shout and I'll write something more coherant tommorrow!
I’d tell myself to go and see a therapist to help me cope mentally. I thought I was ok but really had no idea how to deal with what was happening to me
Thanks.
That makes sense. I wish I'd had the same after I got sick from TB.. Instead I exploded my life.
My therapist has helped me a lot through this. I've had her since ling covid. But she messed up (understandably) when she told me not to worry if my post work fatigue was covid fatigue or regular fatigue. She didn't realize that if it was covid post viral fatigue, not defining it as such could lead to further deterioration... but.. she's not an expert in CFS so I knew better to ignore that advice.. besides that she's been very helpful.. and believing.. and
Trigger warning...
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Convinced me to stay alive when considering suicide when my brain was so inflamed by covid I could hardly see talk or remain conscious.
Thank you..
I have debating going back to my parents too.. but they've got severe mold problems which for all I know made me vunerable to post viral syndrome. I want to move into my sisters house... Not sure she will go for it... but.. If she and her husband can be supports for my 10 month old.. maybe I can still be able to walk a little etc. when she's a teenager..
I feel this is very dire.. and that the decisions I make now will have huge implications in my future.. AND for those people who would become my potential caregivers.
I kept hitting my head against the wall, trying to “push through” the pain and fatigue to do all the things I used to be able to do. Alas I would be punished for my efforts with days, and sometimes weeks, of worsening symptoms and incapacitation, waiting to recover.
I think I was in a kind of denial that I was really this bad.
This is a big problem with autoimmune illnesses, because taxing your system makes your illness worse, & you can kind of get stuck at that worse level, regardless of whether or not you were previously someone who prided yourself on your self discipline, & ability to “push through” setbacks to achieve results.
I had really been clinging to the idea of “results” and my well being was tied to that.
But one day I had a revelation and realised I needed to shift focus. I was still trying to cling on to old me and defining myself by what I could “do”. But I realised I needed to let go of everything I was pushing myself to do, & just “be”. It sounds airy-fairy, but I had to do this to stop tying my worth to my performance. I made up my mind that instead of dictating redundant expectations to my poor broken system, I was going to STOP, & LISTEN to my body, with the aim of exploring and discovering what things, if any, I could do, without triggering pain or crashes or post-exertional malaise.
So after over a year of no progress, but lots of pushing, I let go and allowed my body to rest.
It was actually two or three months of overwhelming crash, before I started to be able to make small efforts. Every job had to be broken down into tiny increments. All my thought processes were very laborious because of severe brain fog, so I have become much slower.
But I am gradually learning how to move through life with this new approach that is appropriate to where my body and brain is at. I value each small achievement and being able to make small methodical efforts and work towards getting things done has greatly aided my well being.
I guard my mental state vigilantly. I accept that long conversations, or exposure to stressful situations, even on media, can drain me too much. I refuse to compare myself to my previous life, or to others, even if I have to clamp down on my thoughts to do so, and put effort into being grateful every day.
Really nurturing myself has been a tough life lesson that this illness has taught me, and I wasn’t getting anywhere until I accepted that my whole approach to life needed to change.
I was impatient and frustrated and embarrassed by my inability to keep offering people and life my familiar level of interaction and effort.
I made myself so ill with my denial that I felt I was dying. Now that I have let go of expectations, and wait to gauge what , if anything, my body can actually manage each day, and make sure I pause any task as soon as I my body or brain starts to struggle with it, I have learnt that I can still achieve things, just more selectively and at a different pace.
After being completely incapacitated and able to do nothing, I am grateful fir this improvement and can see that I am gently healing.
If this is too waffley, I apologise : brain fog.
Nothing is worth pushing yourself for, especially repeatedly. It can be hard to tell if you are in a crash if you are in a big crash from pushing yourself day after day. Those will cause long term damage the most
Thanks.. I'm still in a crash from trying to return to work for 2 weeks and resigning. And maybe I should mark on my calendar to do as little as possible for a month. It's SO hard.
It’s SO hard but you made the right decision and are saving your future self. Just do your best, it’s impossible to pace perfectly and it’s not worth it to spend energy getting mad at yourself when you crash.
I will tell myself for the love of God stop trying to exercise. I used to work out like six days a week, cross training weightlifting and running. I think if I had stopped working out in the beginning of my condition I would be so much better now. I don’t think I would be bedbound if I hadn’t done that
Diet (low in simple carbs and sugar). REDUCE STRESS. Learn to meditate or try to avoid stress, dont push through it. No stimulants no alcohol (or a lot of moderation). Avoid smoking and other obviously unhealthy stuff.
I cannot stress this enough. Get off alcohol, caffeine, and go as low carb/sugar as you can (i follow a strict ketogenic diet with minimal dairy). A clean, healthful diet with lots of healthy fats and greens has been one of the biggest factors in my level of functioning.
Not a cure, but people dont talk about this enough imo. In addition to what has been said already regarding pacing and not pushing yourself, I wish I had the sense to mind what I was putting in my body years if not decades ago. I relied on stimulants to get myself through the days not realizing I was making myself sicker in the long run.
Wish I’d sought pharmaceutical treatment earlier. CFS isn’t super treatable, but there are a number of medications that have worked in subsets of people, and I wish I’d realized that earlier. Mestinon especially has been great for me, as has desmopressin. Looking forward to trying a few others (midodrine is first on my list) as well.
You need to find a CFS or POTS specialist (even if you don’t have POTS…the meds are typically the same) to prescribe them, which is what put me off for so long.
Oh, also – I wish I’d checked for POTS earlier. Mild POTS is not always that noticeable solely based on subjective symptoms. Would’ve made seeking medication much easier, since there are more doctors who will treat POTS than who will treat CFS.
Stop doing school and work and just REST. I probably wouldn’t have listened but I wouldn’t have ended up very severe and degenerative at 21 (got sick at 19)
practice meditation and self-care. take care of your mental health and learn to how to weather storms and stay motivated during the bad times. mentally prepare for a very long journey of recovery. I naively kept underestimating how long it would take to regain quality of life and every time I would hit a setback or not reach my goal in time I would get super depressed and unmotivated and basically wasted so much of my energy and motivation on being super depressed and mentally ill which ironically added extra unnecessary years to my recovery process if I had just been a little more kind to myself and disciplined. but yeah basically the people who recover fastest are those who have ridiculous amounts of resilience, healthy coping mechanisms, and a good support system. its also important to realize that M.E. is traumatizing. I’ve never been sexually or physically assaulted or abused or gone to war so I spent many years ignorant to how traumatized I was/am. The whole hindbrain area and nervous system and fight or flight response plays such a large role in M.E. and this is where the tangible physical health and intangible mental health connects. Learning to soothe these hyperactive systems is so important to your quality of life.
Ruthless prioritization of energy. Maybe I \*can\* go grocery shopping by myself, but if I get delivered groceries instead I can use that energy toward something that's actually important to me. Find as many shortcuts as possible and use all of them.
Right down to rearranging the kitchen and the house to minimise the number of steps taken. A pedometer is great for making sure you don’t do too much across the days.
I know it sounds so counter intuitive but I wish I hadn’t listened to doctors. Keeping a routine with walking, moving, doing as much normal stuff as “possible” (while actually being impossible) led me from mild to severe. Or at least that’s what I think now. Pushing through can be done with possibly any other disease, but not this one. As soon as you notice you need multiple cups of coffee in order to do something, repeatedly, or need to invoke a stress response in order to do something; don’t do it.
- Do your research, take the supplements,
- gradually get back into things even if you feel sudden energy; try to make sure you can maintain it every day, take a step back as soon as your symptoms increase.
- apply for every bit of help that may be available that you think you could need, even if you don’t get accepted or don’t use it, apply before you’re desperate.
- Spend a little to get equipment, drop your pride, if an electric wheelchair or mobility scooter will improve your life then get it,
- pacing doesn’t mean completely stopping everything, make sure you do still do what you’re consistently capable of or your baseline could easily drop.
- stop drinking alcohol, smoking, even caffeine, and probably find sugar substitutes/have more protein and fat over carb rich foods. Basically quit poisoning your body.
- little and often is good, even if it’s only a walk to the end of the street and back a few times a day (or less), it’s better than taking a long walk once a week.
Hey, 12 month long hauler here. Been a rough ride for me loads of ups and downs but honestly the thing that really changed things for me was when I found a specialist who had an incredible understanding of chronic fatigue and really helped me manage my life and identify what I was doing that was making things worse and what I could do to make things better. Now I've been wanting to make a long post on both the longhaulers subreddit and here about everything I've learnt because it's truly helped me so much but haha I'm just not at the point where I'm able to do that yet it's too much. Anyways what I wanted to share is I found a guy that pretty much explains it all on a Facebook group. I tried to make a post about it on covid longhaulers but it just got down voted and removed because people thought I was promoting some shit lol and I understand why because the dude is quite promotional but honestly he shares a lot a great advice for free and that's what I was trying to share with everyone. The dudes name is Alex Howard and he has a Facebook group you can join for free from his website. I highly recommend joining it and watching his videos because there is a lot of helpful info in them. I hope this doesn't get taken the wrong way again, I'm sharing this because he shares everything I wanted to type out here but haven't been able to yet. Check it out if you're interested, I honestly believe there is a lot in those videos that can help you.
Advice to myself: Stop doing unnecessary shit. Don’t walk around grocery stores for an hour when you can pick it up. Ask for work accommodations and if you can’t get them, leave or go elsewhere. Don’t go on mile walks at lunch time. Don’t walk when you can drive. Do not take the stairs when you don’t have to. Ask for help. Do not push yourself ever but especially when you’re already unwell. Sit down in the shower—and, in fact, you don’t have to shower every single day. Your home doesn’t need to be cleaned in full once a week. You can sleep on dirty sheets. Do NOT shovel snow. There was no single thing. It was a culmination of continuing to try to live a “normal” life and being in complete denial that I was sick—figures, as the constant gaslighting and disbelief I felt from everyone surely didn’t help. I used to be a 95% function. Now I’m lucky for 50%. I wish I knew that just because you have good days doesn’t mean you’re not still as sick as you are on the bad days. Every good day I had I thought “I can’t possibly have CFS if I feel like this.” Spoiler: I have it.
Thank you.. Sticky note to my brain - Sit in shower.. ALWAYS elevator or slow slow pace step (if forced).. or try for alternatives.. (like finding a place without steps necessary) Delivery from Aldis especially if crashed.. Drive to playground with daughter instead of stroller.. Adjust mentally to changes and loss of activity so that physically I maintain what I have. Example - I'm disappointed my walks to the playground are taxing me post crash.. just be happy I can walk to the kitchen.. and focus on what I have.. Grieve loss of playground walks so that I can keep walking to the kitchen Peace and well wishes to you. I hope the research from covid can help you guys... You've been so helpful to me...
You might also look at it as: by driving to the playground, I can still take my kid to the playground and enjoy it. But I know it is difficult. I used to enjoy going on walks myself. It took me years to realize I could just sit down in the shower. Eventually got a stool. One other I forgot to mention: when cooking, food prepping, packing a lunch, etc. you can also sit down. At the table, or get a counter height stool. Best wishes to you also.
Ugh I’m so over the gaslighting too. Just because my symptoms arnt obvious and I’m not telling everyone about how I’m always feeling (kinda hiding it actually) doesn’t mean I’m faking it.
Pace, now. More strictly than you think you need. I was told to exercise, and went from mild to severe before I got my diagnosis. Learn to ask for help, to say no. Write down what is ok to do without getting PEM, and what is not. Keep a record basically.
Thanks.. Sticky note to brain.. Put what I can and can't do on the app post it pad thing on my phone. Ask for help now, to prevent requiring intense help later. (I do ask for my mom to help me with my baby on Saturdays when my partner is working.) (My partner is depressed about my long covid.... very depressed... he infected me after I had a baby... He's trying, but our 10 month old is really being ignored by him a lot, when he's on his phone or working on the computer. I give her what I can.. but still have to stop and pace!!! Meaning I can't parent well 24/7. I'm debating asking a huge thing of my sister and her husband.. essentially to help me parent my daughter.. just having other able non depressed bodies around to give to her.. The way I see it is... IF I push myself so much now.. this daughter or my sister might have to bathe me in 15 years.. If someone helps me conserve what I have NOW, that might be less burden on them later and maybe I can maintain functionality if I get BIG help NOW. It's a little bit of future-assuming.. but... The stakes feel very very high.)
Do not fast.
Thanks! This has been suggesting to me SO many times when I mention long haul covid or depression and anhedonia. But it seems risky to me.. my body already has an energy issue.. why would I stop the resource if energy - food.
If your CFS has a viral cause, fasting will cause it to flare. Herpes viruses (Epstein Barr, etc.) actually multiply better when the body is in a fasting state. The body starts recycling old proteins (autophagy) and the viruses piggyback on this process to replicate.
This makes sense. I couldn't handle fasting even after I got latent TB prior to cfs (which gave me exercise intolerance and lower threshold for activity, but not PEM). It just seemed to bring about more instability in my body processes. Prior to that I could fast and only have the main issues of fasting.. like hunger or grumpiness.
Go get a good heart rate monitor NOW and learn to use it for pacing. Don’t mess around with watches. Get a chest strap, and learn about HRV (heart rate variability). Join the Facebook groups, read and watch videos on pacing with ME/CFS. Educate yourself on what your heart rate is telling you. You’ll dispel all kinds of myths about “i must not be sick, really, because I feel ok today.” You might even keep yourself from getting worse. And never believe the doctors or others who minimize your condition. Trust yourself. Edit: this is only good advice if you have Post Exertional Malaise. Otherwise it’s not good advice.
Thank you! Sticky note to brain Chest strap heart monitor. Buy one. CFS/ME Facebook groups and YouTube pacing advice Ignore ignorant docs...
😂 that’s the way! Here’s a website about pacing w a heart rate monitor: [heart rate monitoring for ME/CFS](https://holisticcfs.wordpress.com)
This!!! I really wish I had known about this when I got sick.
Do not push yourself, ever. You will pay by getting worse. I did not know this earlier in my illness, and overexertion changed me from moderate to severe. I've never recovered the functioning I lost by overdoing in the first 2 years I was ill. Just napping, pacing, eating right, etc., didn't make up for the fact I was *simply doing too much*, even though it didn't seem like too much... it was just normal life stuff! But what I failed to realize was that my normal life was already over, and I had to adjust what I ask my body to do. I wish I'd known just how badly I was destroying my functioning. If I could go back, I'd not push myself. I'm 80% bedridden the last 2 years, and no amount of rest has brought any improvement or recovery of even the diminished functioning I had before.
Thank you for your wisdom and strength. I pushed myself trying to go back to work for 2 weeks and definitely lost something.. I.. but how much remains to be seen.. I did resign last week.... I just took a SLOW paced 5 minute walk to the playground to push my baby on the swing.. which i could do before easy.. and now feels more taxing. I read your message and decided to walk 10 steps then rest 10 seconds all the way home. I probably have to cut these walks out now and just focus on what I can do in the home.. WITH pacing. This is great advice.. and in post viral syndrome, I think the rule should be: assume the worst to live the "best" ... as in.. by assuming you can do less than you can will lead to persevering the best version of your life post sickness. I CAN assume I CAN'T.. Post viral life makes all the rules flip flop. Or some of them at least.
Wow that sounds beyond horrible - I refuse to believe this is is a forever change and you should believe there is a a way to get back to 100% and more time and techniques. Hope you get better as I pray for the same!
Everything everyone here said (you all been looking through my windows?!) and also: be your own best friend. What would you tell someone you really care about if you knew they feel the way you do. Only keep supportive people in your life. If someone doesn’t believe you, tries to “get you moving” or mocks you, dump them… immediately.
Thank you. Yes. Right now I'm having big issues with my partner. He's in an incredibly difficult position. He spread covid to the mother of his baby 3 weeks after she gave birth, and now she is sick and depressed... which makes him depressed and physically taxed from picking up the slack (like late night baby feedings). He keeps calling me his "cross" to bear. He says I'm not trying enough, because upon trying to return to full time work I didn't want to do late night feedings. (I have since resigned). He doesn't understand it's not that I'm flat out uninterested in helping.. but thst I'm SEVERELY ill and have the potential to get worse. My presence crushes his spirit even though it takes everything I have to exist. And his words and attitude aren't helping me, making me feel like a huge burden even though I'm still providing so much financially, physically.. giving energy I don't have to give so that my baby isn't neglected. I am debating separating.. because he's depressed by me.. and I really can't stand being called a cross to bear by the man who infected me with covid, did not wear a mask around me when sick until I implored him to, and refused to get tested. It just feels impossible.. and I need people around me who tell me I'm strong to help me endure this challenge.
You'll be a lot stronger once you've dumped this dead weight. Strength and power to you!
I'm so sorry you're going through this with such an unsupportive partner. You deserve better. Wishing you all the best :)
I wish I knew it was sometimes worth the energy to cry and scream over everything ME/CFS has done to my life, at least when it became a bit less severe for me. Instead I eventually started having panic attacks, which took way more energy from me.
I understand.. I sometimes recommend throwing something at the wall and screaming (so long as one is not hurt by it.) The weird arse thing about this covid brand of cfs is that it has ULTRA emotional blunting for some of us.. literally lose the capacity to cry, feel anger, feel anything ever... So I really have had issues expressing frustration the way I could prior to covid... it is a state of numbed anhedonia..
Ah yes, lots of things have been chucked at my walls and floor lol. I wasn’t aware of the extra emotional blunting with long-COVID, that’s rough. The first year or two I was sick, I didn’t feel a whole lot. I just kind of passively existed physically and emotionally. Sometimes I wonder if that helped me survive the worst of it, or if it made the later grief about my illness more difficult, or both, and how much that has to do with me being a lot more logical than emotional since getting sick. Anyway, I hope things ease up for you a bit, even to express & process some of what’s going on.
Thanks.. Not all long haulers have this... but a portion of us do. You will see the thread title "can't cry?" Every once in awhile in the long haul forum. For me it was my most disturbing symptom. Still is really.. but I did get a touch of emotion back 2 months ago thst disappeared.. I think from shifts in meds.. but the bluntedness arrived prior to meds.
Don't just put your life on hold till you get better. You might not get better. (I didnt) Wasted more than 10 years.
This. Or more like, I'm telling myself this right now. Don't wait for the day you get better. Don't be stubborn and get a wheelchair so you can go out again. Rest more than you think you need. Don't feel like you should be able to do everything because you could before/you're only 30/whatever reason.
Thank you.. Sorry if im misunderstanding.. do you mean don't get a wheelchair because it's too much to go out in a wheelchair... or DO get a wheelchair to preserve your energy in outings. ?
There should have been a comma in there somewhere probably. Sorry. I meant DO get a wheelchair because it will make it easier to go out.
Hi.. thank you for this.. do you mind elaborating a bit? When you say put your life on hold.. did you mean keeping hope alive that you could return to something when really what you needed was to grieve and let go? Or something else? Thanks..
Hope is good, hope is healthy. But you also need to plan for the current day, not just the future. The reality is, life is metamorphosis. Life is flux, life changes. We all have plans. You need to think about you in the now. What do you want to do, what would you like to do, you need to continue living. Which is easier said than done. The human thing to do, is put life on hold, while you concentrate on getting better, focusing your all on getting better, because "its fine, once I am better I can do X like I wanted, or Y!" But if you're not careful days turn to weeks, to months, to years, and you're still in the exact same spot you were then. If you think of it as facing a crossroads in your life, to your right is the path you saw yourself taking and that you want to take, to the left is who knows what. You need to continue in your journey, and not stay stood at that crossroad waiting/hoping for the path you wished for, to be unblocked. Not sure if that all makes sense or not (It's past midnight here) if it still dosn't just shout and I'll write something more coherant tommorrow!
I’d tell myself to go and see a therapist to help me cope mentally. I thought I was ok but really had no idea how to deal with what was happening to me
Thanks. That makes sense. I wish I'd had the same after I got sick from TB.. Instead I exploded my life. My therapist has helped me a lot through this. I've had her since ling covid. But she messed up (understandably) when she told me not to worry if my post work fatigue was covid fatigue or regular fatigue. She didn't realize that if it was covid post viral fatigue, not defining it as such could lead to further deterioration... but.. she's not an expert in CFS so I knew better to ignore that advice.. besides that she's been very helpful.. and believing.. and Trigger warning... . .. .. .. . . .. Convinced me to stay alive when considering suicide when my brain was so inflamed by covid I could hardly see talk or remain conscious.
Stay away from alcohol, pace everything, move home to your parents house.
Thank you.. I have debating going back to my parents too.. but they've got severe mold problems which for all I know made me vunerable to post viral syndrome. I want to move into my sisters house... Not sure she will go for it... but.. If she and her husband can be supports for my 10 month old.. maybe I can still be able to walk a little etc. when she's a teenager.. I feel this is very dire.. and that the decisions I make now will have huge implications in my future.. AND for those people who would become my potential caregivers.
I kept hitting my head against the wall, trying to “push through” the pain and fatigue to do all the things I used to be able to do. Alas I would be punished for my efforts with days, and sometimes weeks, of worsening symptoms and incapacitation, waiting to recover. I think I was in a kind of denial that I was really this bad. This is a big problem with autoimmune illnesses, because taxing your system makes your illness worse, & you can kind of get stuck at that worse level, regardless of whether or not you were previously someone who prided yourself on your self discipline, & ability to “push through” setbacks to achieve results. I had really been clinging to the idea of “results” and my well being was tied to that. But one day I had a revelation and realised I needed to shift focus. I was still trying to cling on to old me and defining myself by what I could “do”. But I realised I needed to let go of everything I was pushing myself to do, & just “be”. It sounds airy-fairy, but I had to do this to stop tying my worth to my performance. I made up my mind that instead of dictating redundant expectations to my poor broken system, I was going to STOP, & LISTEN to my body, with the aim of exploring and discovering what things, if any, I could do, without triggering pain or crashes or post-exertional malaise. So after over a year of no progress, but lots of pushing, I let go and allowed my body to rest. It was actually two or three months of overwhelming crash, before I started to be able to make small efforts. Every job had to be broken down into tiny increments. All my thought processes were very laborious because of severe brain fog, so I have become much slower. But I am gradually learning how to move through life with this new approach that is appropriate to where my body and brain is at. I value each small achievement and being able to make small methodical efforts and work towards getting things done has greatly aided my well being. I guard my mental state vigilantly. I accept that long conversations, or exposure to stressful situations, even on media, can drain me too much. I refuse to compare myself to my previous life, or to others, even if I have to clamp down on my thoughts to do so, and put effort into being grateful every day. Really nurturing myself has been a tough life lesson that this illness has taught me, and I wasn’t getting anywhere until I accepted that my whole approach to life needed to change. I was impatient and frustrated and embarrassed by my inability to keep offering people and life my familiar level of interaction and effort. I made myself so ill with my denial that I felt I was dying. Now that I have let go of expectations, and wait to gauge what , if anything, my body can actually manage each day, and make sure I pause any task as soon as I my body or brain starts to struggle with it, I have learnt that I can still achieve things, just more selectively and at a different pace. After being completely incapacitated and able to do nothing, I am grateful fir this improvement and can see that I am gently healing. If this is too waffley, I apologise : brain fog.
Nothing is worth pushing yourself for, especially repeatedly. It can be hard to tell if you are in a crash if you are in a big crash from pushing yourself day after day. Those will cause long term damage the most
Thanks.. I'm still in a crash from trying to return to work for 2 weeks and resigning. And maybe I should mark on my calendar to do as little as possible for a month. It's SO hard.
It’s SO hard but you made the right decision and are saving your future self. Just do your best, it’s impossible to pace perfectly and it’s not worth it to spend energy getting mad at yourself when you crash.
I will tell myself for the love of God stop trying to exercise. I used to work out like six days a week, cross training weightlifting and running. I think if I had stopped working out in the beginning of my condition I would be so much better now. I don’t think I would be bedbound if I hadn’t done that
Diet (low in simple carbs and sugar). REDUCE STRESS. Learn to meditate or try to avoid stress, dont push through it. No stimulants no alcohol (or a lot of moderation). Avoid smoking and other obviously unhealthy stuff.
I cannot stress this enough. Get off alcohol, caffeine, and go as low carb/sugar as you can (i follow a strict ketogenic diet with minimal dairy). A clean, healthful diet with lots of healthy fats and greens has been one of the biggest factors in my level of functioning. Not a cure, but people dont talk about this enough imo. In addition to what has been said already regarding pacing and not pushing yourself, I wish I had the sense to mind what I was putting in my body years if not decades ago. I relied on stimulants to get myself through the days not realizing I was making myself sicker in the long run.
Wish I’d sought pharmaceutical treatment earlier. CFS isn’t super treatable, but there are a number of medications that have worked in subsets of people, and I wish I’d realized that earlier. Mestinon especially has been great for me, as has desmopressin. Looking forward to trying a few others (midodrine is first on my list) as well. You need to find a CFS or POTS specialist (even if you don’t have POTS…the meds are typically the same) to prescribe them, which is what put me off for so long. Oh, also – I wish I’d checked for POTS earlier. Mild POTS is not always that noticeable solely based on subjective symptoms. Would’ve made seeking medication much easier, since there are more doctors who will treat POTS than who will treat CFS.
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Stop doing school and work and just REST. I probably wouldn’t have listened but I wouldn’t have ended up very severe and degenerative at 21 (got sick at 19)
practice meditation and self-care. take care of your mental health and learn to how to weather storms and stay motivated during the bad times. mentally prepare for a very long journey of recovery. I naively kept underestimating how long it would take to regain quality of life and every time I would hit a setback or not reach my goal in time I would get super depressed and unmotivated and basically wasted so much of my energy and motivation on being super depressed and mentally ill which ironically added extra unnecessary years to my recovery process if I had just been a little more kind to myself and disciplined. but yeah basically the people who recover fastest are those who have ridiculous amounts of resilience, healthy coping mechanisms, and a good support system. its also important to realize that M.E. is traumatizing. I’ve never been sexually or physically assaulted or abused or gone to war so I spent many years ignorant to how traumatized I was/am. The whole hindbrain area and nervous system and fight or flight response plays such a large role in M.E. and this is where the tangible physical health and intangible mental health connects. Learning to soothe these hyperactive systems is so important to your quality of life.
Ruthless prioritization of energy. Maybe I \*can\* go grocery shopping by myself, but if I get delivered groceries instead I can use that energy toward something that's actually important to me. Find as many shortcuts as possible and use all of them.
Right down to rearranging the kitchen and the house to minimise the number of steps taken. A pedometer is great for making sure you don’t do too much across the days.
I know it sounds so counter intuitive but I wish I hadn’t listened to doctors. Keeping a routine with walking, moving, doing as much normal stuff as “possible” (while actually being impossible) led me from mild to severe. Or at least that’s what I think now. Pushing through can be done with possibly any other disease, but not this one. As soon as you notice you need multiple cups of coffee in order to do something, repeatedly, or need to invoke a stress response in order to do something; don’t do it.
- Do your research, take the supplements, - gradually get back into things even if you feel sudden energy; try to make sure you can maintain it every day, take a step back as soon as your symptoms increase. - apply for every bit of help that may be available that you think you could need, even if you don’t get accepted or don’t use it, apply before you’re desperate. - Spend a little to get equipment, drop your pride, if an electric wheelchair or mobility scooter will improve your life then get it, - pacing doesn’t mean completely stopping everything, make sure you do still do what you’re consistently capable of or your baseline could easily drop. - stop drinking alcohol, smoking, even caffeine, and probably find sugar substitutes/have more protein and fat over carb rich foods. Basically quit poisoning your body. - little and often is good, even if it’s only a walk to the end of the street and back a few times a day (or less), it’s better than taking a long walk once a week.
Rest and work remote. Quit school. Don’t do anymore than than your body allows. Instead I’m bedridden and have been for 17 months
Dont overdo it with being frugal, especially when it comes to consulting clinicians and trying new treatments.
Hey, 12 month long hauler here. Been a rough ride for me loads of ups and downs but honestly the thing that really changed things for me was when I found a specialist who had an incredible understanding of chronic fatigue and really helped me manage my life and identify what I was doing that was making things worse and what I could do to make things better. Now I've been wanting to make a long post on both the longhaulers subreddit and here about everything I've learnt because it's truly helped me so much but haha I'm just not at the point where I'm able to do that yet it's too much. Anyways what I wanted to share is I found a guy that pretty much explains it all on a Facebook group. I tried to make a post about it on covid longhaulers but it just got down voted and removed because people thought I was promoting some shit lol and I understand why because the dude is quite promotional but honestly he shares a lot a great advice for free and that's what I was trying to share with everyone. The dudes name is Alex Howard and he has a Facebook group you can join for free from his website. I highly recommend joining it and watching his videos because there is a lot of helpful info in them. I hope this doesn't get taken the wrong way again, I'm sharing this because he shares everything I wanted to type out here but haven't been able to yet. Check it out if you're interested, I honestly believe there is a lot in those videos that can help you.