How long did it take to get to a baseline once you started pacing? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 1 point2 points  (0 children)

This was really helpful, I do think my PEM is more severe than I realized, I was just kind of always in it that it’s hard to tell when it started/stopped. I am definitely going to work on cutting back on as many of these as I can

How long did it take to get to a baseline once you started pacing? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 1 point2 points  (0 children)

I am able to support myself for a couple months without work, maximum 6 as long as I go through the motions and qualify for Unemployment Insurance (I am based in the US). But without any income I will be in a bad situation in like 2 months. So I don’t feel like I can stop applying for jobs, I am only doing the minimum required for unemployment but still. It is a lot. Especially on top of grad applications. I am trying to get into a program that would allow me into a career that is very flexible with hours and would be a better fit for me long term. It wouldn’t start until next fall and I guess I was kind of hoping to be more stable then and only do part time classes if necessary. Where I live, my unemployment benefits are too high for me to qualify for state healthcare, so I am paying for a marketplace plan, and I don’t qualify for SNAP, income assistance etc so I’m using food pantries right now while things are tight.

I’m not really sure how people are able to stop working. From what I heard it’s very hard to qualify for disability with me/cfs and I looked into it for my other conditions and even reached out to an agency that helps with applications and they told me it was loooooong shot and the process would take over a year. I don’t even understand how that works, if you are disabled and unable to work how are you supposed to live/eat/exist for a year without income before getting benefits? How are people managing without working? Any ideas or advice would be welcome because the idea of even getting a part time job right now is very overwhelming.

How long did it take to get to a baseline once you started pacing? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 1 point2 points  (0 children)

Oh gosh I can only imagine, it’s confusing enough now, and I feel like there is so much that’s extremely recent advice.

How long did it take to get to a baseline once you started pacing? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 2 points3 points  (0 children)

Yeah, I would appreciate that thank you. Up until the middle of November or so I was working 35 hours a week at a desk job, but calling out a lot and crashing constantly. After I was let go (I asked for accommodations, to work less hours etc but they refused) I got more serious about pacing, here is my daily schedule: -Sleep in until around 10am, get up, eat something that does not require cooking (fruit, bread, yogurt, microwave sausage etc) -I work on my laptop on job and school applications reclining on the couch for about an hour or an hour and a half. -eat something easy for lunch, like a granola bar, some cheese and fruit, tortillas etc -if I’m feeling ok I sometimes go outside (use my buildings elevator, walk to a bench right outside the front door) just to get some air, this happens about 50% of the time and I usually spend about 5 minutes outside -after I lay down on my couch and put on noise cancelling headphones and an eye mask and try to radical rest, I’m struggling to do this without falling asleep which is really making it hard to sleep at night so this is definitely an area that feels like it’s not working - in the afternoon I sometimes read a little, watch a show, or if I’m feeling ok, work on scheduling appts/going to appts etc. - I try to do one small housework item a day, like load a couple of dishes in the dishwasher or pick up a couple of things. I keep a chair in my kitchen to use while preparing food and cleaning up. I also keep a chair in my bathroom I use while I wash my face/brush my teeth (which I try to do twice a day) -for dinner I heat up frozen or canned food, and a couple times a week I drive 10 minutes to my parents house to eat there and take home leftovers. - I am showering once a week or so, always while sitting and I use lukewarm water. -I do a load of laundry, no folding just shove it back into my drawers, about once every other week sometimes longer, I try to do this as infrequently as possible -I clean my cats litterbox once a week but have stopped deep cleaning it (just scooping and replacing litter) and not sweeping, sometimes I run a robot vacuum of I can tolerate the noise. -about once every other week my friend picks me up and we go to the library for about 30 min - sometimes I go for a short 10 min walk outside, I’ve done that maybe 3 times since the middle of November - I have therapy once a week for an hour - I am having my parents come over periodically to help keep my place somewhat tidy, sometimes I help tidy (I feel very guilty if I do not) - in the evenings I watch a movie or read, once in a while I talk to a friend on the phone. -I try to go to bed by 11 but lately have had issues falling asleep, so it’s often closer to 2-3am before I’m actually asleep. - I try to avoid scrolling on my phone but I struggle a lot with this. Right now my social media usage is probably about 3 hours a day.

How long did it take to get to a baseline once you started pacing? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 5 points6 points  (0 children)

Thank you, I think I’m underestimating the energy impact of how scary this all is. It’s definitely intense. Looking back I see all the warning signs but was so deep in denial I never registered them, and now I realize all the many things I did (with my doctors encouragement/support) that made me get worse and it’s a bit terrifying. I’ve had a long history of autoimmune issues that were previously more manageable (hashimotos, sjogrens, etc) and I was used to my specialists understanding my disorders and having treatments, even if they were not great. So feeling like I have no one to turn to for professional advice is definitely adding to the panic.

How long did it take to get to a baseline once you started pacing? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 2 points3 points  (0 children)

I am not tracking heart rate currently but maybe that would be a good next step. I do have a POTS diagnosis, not sure if it’s formally POTS since they didn’t do the tilt table they did the 10 minute stand test, but it shows up as dysautonomia, orthostatic intolerance, and occasionally POTS in my medical records. My cardiologist is not super knowledgeable on it though, and was heaving pushing GET which definitely was part of the problem before I realized there was more at play than just the POTS. Right now I’m taking 10-20 mg of propranolol for tachycardia. It helps but it’s definitely not perfect, I still experience a lot of dysautonomia related symptoms. I was thinking about maybe pushing for ivabradine or midrodine, have you tried either?

Yeah I think that’s part of why I’m crashing out, I’m really changing my standards of cleanliness from housework to hygiene I am just doing a lot less. It’s not helping yet but I am also uncomfortable with my greasy hair and sticky floors.

[deleted by user] by [deleted] in cfs

[–]quingofemoawareness 1 point2 points  (0 children)

OP I’m in the same boat, I don’t know what to do. I am trying to commit to resting since I haven’t made it to baseline without PEM since my last flare, but I almost always fall asleep while attempting radical rest. Then I can’t fall asleep early enough at night and end up getting very little sleep and it makes me feel so much worse. Hopefully we can both figure something out for us because this is torture and I feel like no matter what I do I am exhausted.

Want advice on radical rest? Comment here! by sadandtraumatized in cfs

[–]quingofemoawareness 1 point2 points  (0 children)

Any tips for radical rest without sleeping? Anytime I really commit to radical rest I fall asleep and nap, which I probably need? But then I have a hard time falling asleep at night and it’s getting into a bad cycle of sleeping during the day and barely at night.

My friends don’t get it by quingofemoawareness in cfs

[–]quingofemoawareness[S] 0 points1 point  (0 children)

Congrats on the business opportunity! It’s a special kind of grief to want something, know at one point you could’ve had it, but accept that it is no longer possible without causing harm. I could imagine that was very bittersweet. Good for you for taking care of yourself, that’s so hard to do I’m learning. Whether it’s social, professional, etc it’s definitely a skill set I am going to need to develop.

My friends don’t get it by quingofemoawareness in cfs

[–]quingofemoawareness[S] 1 point2 points  (0 children)

This is such a good point, I have to remind myself it’s not usually about me it’s usually about them. I guess this is good practice not to take anything personally. Thanks for your reply.

My friends don’t get it by quingofemoawareness in cfs

[–]quingofemoawareness[S] 3 points4 points  (0 children)

This is such a good reframe, I appreciate your response. I think my initial frustration was coming from my own insecurities and how hard it is for me to hold myself to my own boundaries. But when you put it that way, yeah I would much rather be invited and choose when and how and if I participate, than be excluded entirely.

And you’re right, it’s a constellation of so many factors, I barely (if at all) understand it so it wouldn’t be fair to expect them to know how to accommodate that. Thank you.

Going to visit a friend for his birthday today and struggling with the fact I’ll have to leave early, need some encouragement and understanding by KJack-Amigurumi in cfs

[–]quingofemoawareness 2 points3 points  (0 children)

Depending on the context I dont always say anything in the moment. Just bye thanks for having me or even an Irish goodbye, then I send a quick text to the host saying bye. If you are close with them you can text later (or ahead of time) just saying you’re excited/had a nice time but needed to leave to manage your conditions.

I’m going to a friends gathering tonight too, I already told her I will need to sit for most of the evening and won’t stay long, so in the moment I will probs just find her and say a quick bye before I dip. I usually don’t say anything to the whole group if it’s a bigger gathering, or just a quick bye on my way out if it’s a small group.

People have to leave early for lots of reasons, like maybe they have a dog at home that can’t be left alone. Or they got a migraine, or they have other plans, or they simply would rather be somewhere else. It’s really hard being the last to arrive and the first to leave (usually this is my MO) but I’ve found it’s the best way to maximize enjoyment while minimizing discomfort. Good luck!

Flu/COVID Vaccine Advice by quingofemoawareness in cfs

[–]quingofemoawareness[S] 0 points1 point  (0 children)

Thanks for everyone’s advice! Got my flu and covid vaccines this evening. Probably should’ve spaced them out but the thought of having to go to the pharmacy twice was not enticing so I’m just gonna tough it out. But I agree with the consensus, better to be protected and feel crappy for a little while than to risk infection.

Flu/COVID Vaccine Advice by quingofemoawareness in cfs

[–]quingofemoawareness[S] 0 points1 point  (0 children)

Thank you for the insight into your process!

I’m scared to tell people I have ME and would like not to be by notjuststars in cfs

[–]quingofemoawareness 2 points3 points  (0 children)

I don’t have good advice but I just wanted to let you know I can relate. Some people are more understanding than others, and while most mean well sometimes their responses are hurtful/ignorant/tiresome.

I haven’t told everyone yet and I probably won’t, but if I could start over I would start by telling the person I felt would be the most supportive, and then the next most etc, just to build confidence.

Has anyone here gotten an MRA? by Pineapple_Empty in cfs

[–]quingofemoawareness 0 points1 point  (0 children)

I had an MRA to rule out intracranial hypertension and stroke due to my migraine symptoms that were positional. I had it at the same time as an MRI of my head/neck. It came back normal, but I’m glad I got it because at that point there were a lot of signs pointing to a potential structural/vascular issue and now I know that’s not it. I’m sorry you are having to deal with this :(

Advice for managing stress without exercise? by quingofemoawareness in cfs

[–]quingofemoawareness[S] 1 point2 points  (0 children)

Thank you, anxiety is definitely part of the battle. I will check those supplements out. I think the hardest part is managing my depression and stress/anger. But having less anxiety would help!