Mastodawn

👀's Belle Nov 1, 2023

Chronically ill peeps! I need advice!

I am having a family emergency that requires a LOT of work from me and is incredibly stressful. It's been going on for weeks and it will continue for at least another 2. I finally have hit a flare, and was up all night in fibromyalgia agony. My stomach is upset, and I am exhausted. It is not an option for me to truly rest.

What are yalls tips for managing flares through crisis, when true rest isn't available, but I also can't afford to incapacitate myself. I am walking a VERY fine line here.

I am autistic, have panic disorder, fibromyalgia, chronic pain, CCI, and a bunch of other stuff.

#NEISvoid
#disability #disabled #chronicFatigue #chronicIllness #fibromyalgia #chronicpain #Neurodiverse #neurodivergent @neisvoid @actuallyautistic

Aby Oct 14, 2023

@essie_is_okay - I try to be restful in other ways.. eating food that I find unchallenging, making sure I drink enough water, taking pain meds when I need to etc.

@neisvoid @actuallyautistic

@aby @neisvoid @actuallyautistic

Thank you. Yes I've been getting a lot of very easy foods. I've also been taking electrolyte tabs in my water to help keep me going. Cutting out all the challenging things I can.

Just J Oct 14, 2023

@essie_is_okay @neisvoid @actuallyautistic All I can offer is this: Take what you can, when, how and as you can, and do your very best to not grind yourself into your own physical or mental health crisis.

Other than that, good luck, and much love. Reach out if you need to vent at all, or just take some time away from it for a moment. ❤️

Thank you ❤️‍🩹 appreciate it

Begrudging Recluse Oct 14, 2023

Obviously rest is best, but I understand some periods it's just not available.

Here are some emergency situation things I do with primarily ME/chronic pain problems (I preferably do thisas little as possible, because it's not good for long term well-being!) :

- Chronic stomach medication, but in situations when it gets worse for a small while, I combat it for a short period of time with extra calcium carbonate where necessary. Instead of eating a few large meals, eating small things throughout the day to help manage the acid.

- Using braces as much as possible, it takes effort away from the muscles around your joints. That can make a small difference in energy, especially if you need to consciously think of your posture without them.

- Avoiding any optional work like meal making instead of ready-to-eat things. Showering a little less. Just trying to drop small tasks as much as possible. I once read someone compare daily life to juggling lots of balls. Some balls are glass and some are fabric. In bad times, you still can't drop glass balls because they'll break forever. But just drop any fabric balls to make the load lighter for a short period, it's stuff that is fixable later.

- Any chance possible, I sit down or lie down or try to give my muscles a rest. Any chance I get, I try to lessen input: ear buds against noise, sunglasses for less light, etc.

- I sleep with a hot water bottle and/or extra blankets, it saves a little energy on keeping my own body warm, and helps with pain sometimes.

I hope you can manage this stressful period of your life, good luck and best wishes.

@begrudging_recluse

Very good call on the calcium carbonate and braces. My reflux has gotten so much worse, but I haven't adjusted my eating habits accordingly. I've been reaching for high caloric high sugar foods to sustain me, but that's not good for the acid. And I go for hours forgetting to eat, or not able to eat. I should try to push for the lots of small foods thing.

I don't really have any braces, but I do have tape. My posture has been atrocious (because I've been hunched beside a hospital bed every day), but in the moment I don't remember to correct it because I'm so focused on my loved one. I definitely will be taping up my back and shoulders to force myself back to good posture.

I've dropped a lot of fabric balls already so I have managed that luckily. I'm in Australia so it's been getting warmer. I'll heed your advice but for the opposite, keep myself cool. I have been wearing very breezy clothes and taking hand fans with me.

Thank you for this advice, exactly what I needed to hear.

Aby Oct 15, 2023

@essie_is_okay - with regard to the not eating thing (I do this too), I find alarms are super helpful. It feels silly having to set an alarm to remember to eat something, but sometimes life is just that fucking silly and we do what works.

@begrudging_recluse

@aby @begrudging_recluse

It really is 😭. Alarms are a life saver right now.

corinne Oct 14, 2023

@essie_is_okay @neisvoid @actuallyautistic are you set up so you can basically lie down while doing nearly anything? Try and find a way, and insist upon it wherever you go no matter how weird it feels? Is there enough money to outsource eating to cheap takeaways and food delivery services (perhaps ordered by other people so cognitive load is lowered)? Maximum doses of whatever drugs you're prescribed. This is the rainy day you've probably been hoarding medicines for.

@Corinne @neisvoid @actuallyautistic

I unfortunately have no meds I can be increasing 😩. Although I guess I can increase my reflux meds. I only take ibuprofen for pain, but I might get a prescription for some diazepam or a muscle relaxant just to take for a week as needed. My whole back locked up last night, too tense to get unlocked with anything. All my usual techniques failed. I gotta get some big boy meds I think.

corinne Oct 14, 2023

@essie_is_okay @neisvoid @actuallyautistic do it. I take oxazepam (diazepam lite) to sleep nightly along with tramadol, and increase it when in a flare. Reinforce that ibuprofen with paracetamol - even if paracetamol does nothing for you it might help in tandem. Absolutely ask about how they can relieve muscle tension and pain so you can sleep. Sleep is so important.

@Corinne
I have to see my doctor this week to get refill prescriptions this week so I will ask about muscle relaxants. Thank you 🙏

corinne Oct 14, 2023

@essie_is_okay @neisvoid @actuallyautistic also do you get sensory issues? If you do and haven't already put together a kit with earbuds, sunnies, hat and something soothing like a square of fabric that you love, a sprayer with a nice scent, fidget etc, so you can lessen sensory input at this crazy time and help your brain stay on task while in new, strange or loud environments.

@Corinne I definitely get sensory issues. Unfortunately I can't really wear sunnies in this situation. I do bring fidget toys with me to the hospital but I never end up using them. I think I just totally dissociate. I do make sure to wear very comfortable clothing and do my sensory unwinding after.

I'm caring for a loved one with dementia in the hospital. So she needs to be able to see the small part of my face that's not covered by a mask. Sunnies would make me unrecognisable to her I think. And the mask is very grating. I will try to use my ear defenders though. I hadn't been, because the room is pretty quiet, but it won't hurt, and it's one of the few things I can do.

I'm gonna take a towel and small pillow so I can lay on the floor for a bit. It's a private room so there's plenty of space and privacy for it. I'm hoping that will help too.

corinne Oct 14, 2023

@essie_is_okay it's a crazy hard situation. I've often found a brimmed hat better at dealing with horrible overhead lighting than sunnies anyway. If she's in her own room maybe the lights can be dimmed? I know the hospital staff probably seem uninterruptable, but they're old hats at covid now and if they have any tips that will make things easier I'm sure they'll be happy to share.

Dave the Nomad 🇨🇦

✊Oct 14, 2023

My wife has MS and we're also in the middle of a family emergency. Her brother passed away unexpectedly 3 weeks ago and she's been the sole strength for the whole family.

Her advice: rest when you can, 10-15 minutes at a time, take a hot bath, talk, scream, throw things. But most importantly talk to someone to get it out. Try to delegate what you can. Don't hesitate to delegate or be afraid to put things on other people. It's okay to care for yourself through a challenging time. Much love and best wishes 💚

@neisvoid @actuallyautistic

@dave thank you for the kind words. My situation is a dying loved one too. Unfortunately two of the very few people who can help have bowed out. It's awful. I took a hot bath tonight funnily enough.

I'm sorry for family's loss. I hope your wife recovers okay.

EmPenTen Oct 14, 2023

@essie_is_okay
Also neurodivergent with Fibro. For me the key is forced rest - yes I know it seems impossible during a crisis, but it's not - 24 hours in a day, you can find 5 minutes here and there.
I'm more likely to flare if I'm tense, so it's important that resting isn't sitting at the computer or being uncomfortable in any way. Those muscles need to be let go. Tighten and release all the muscles you can think of one at a time for a few seconds, a few times, until you feel them let go.

EmPenTen Oct 14, 2023

@essie_is_okay
Concentrate especially around your shoulders and jaw, we tend to hold a lot of tension there.

Also, I don't agree with easy food as such - go for the healthiest you can manage. Food is a huge trigger for my fibro, if I overdo the carbs / junk I suffer. I make extra effort to get veggies and avoid bread & sugar when in crisis because it can get me to a point where I'm totally useless.
Turkish salads are awesome tasty & healthy options.

EmPenTen Oct 14, 2023

@essie_is_okay
Wherever possible, take a moment for yourself - even if it's just an extra minute hiding in the loo! Get some peace & quiet, take a few slow breaths, remind yourself you'll be OK.
Mini recharge moments. Don't let your battery drain completely.
All the best for this icky time, and don't forget to give yourself a big break for recovery afterwards.

Daniel Reeders Oct 14, 2023

@essie_is_okay Forced rest is really hard in a crisis but it's essential. I lived through a period of years like what you described before my bipolar diagnosis. I had a few strategies. Counting breaths as a way of occupying myself while I force myself to sit still even though everything is fucked and everything is go-go-go. Box breathing to let my vagus nerve know I am not currently being chased by a bear. And living from snack to snack.

Daniel Reeders Oct 14, 2023

@essie_is_okay This is the counting breaths method I use. https://thebuddhistcentre.com/text/mindfulness-breathing

It is bizarre but it does seem to make a difference to your mood whether you count the breath *after* you finish exhaling (calmer) or *before* you start inhaling (more energised).

The Mindfulness of Breathing | The Buddhist Centre

The online home for the Triratna Buddhist Community.

Yeah I've been doing the forced rest a lot. I spend about an hour every day working on relaxation and releasing muscles, then resting. When I'm at the hospital I tend to just dissociate and not take breaks even though I can. Too tired to take a break basically.
I'm gonna set some alarms and do everything I can to force myself out of the room for 15 minutes out of every 90 or so.

Daniel Reeders Oct 15, 2023

@essie_is_okay Good plan. I read your toots about your grandma and the situation sounds incredibly grim. Wishing you ease.

Roknrol Oct 15, 2023

@essie_is_okay @neisvoid @actuallyautistic I would ask someone for help. It's not ideal, but surely someone there is appropriately empathetic to your needs.

@roknrol It's a family emergency so there is my mum and grandfather helping, but unfortunately other family who can help have bowed out, or very deliberately not offered it. We had hired some people but my loved one has COVID so they aren't allowed to come help. I'm definitely asking for all the help I can get. Unfortunately there's just not much of it.

Roknrol Oct 16, 2023

@essie_is_okay I'm so sorry to hear that. I also have few human type resources, so can empathise. I thought since in t was a short term thing people might be a little more understanding.

If hiring people is also out...Im afraid Im out of ideas. Boosted for maybe some other suggestions.