tea-and-spoons

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Hello, I was scrolling through your blog (which is super helpful btw!) and wondering if I could ask a question about OT. I have been having really bad joint pain plus other symptoms for a while now and after a bunch of tests my working diagnosis is HSD/hEDS. I’ve been sent to an OT to help deal with my symptoms because right now I can barely walk/stand for any time and barely leave my house. I was wondering if you could give some idea about what an OT could do to help with my situation? Ofc nothing specific without more info but I was wondering what OTs may do for HSD/hEDS? Absolutely no problem if you can’t/don’t want to answer though and thank you! :)

Hello! I'm so glad my blog has been helpful so far. It sounds like you were sent to OT because you're having a hard time with your daily activities, so the short answer is that OT will help you find ways to engage in said activities. The long answer is...

-Treat any injuries to your arms, such as a dislocation or carpal tunnel syndrome. This can mean exercises, bracing, ring splints, tape, massage- similar to PT

-Teach you strategies to protect your joints

-Teach "energy conservation strategies", which are ways of pacing yourself and making stuff like chores easier

-Help you explore options for non-medication pain relief

-Get you adaptive equipment (this can be everything from an adapted pencil, to a wheelchair, although not all OT's can do the wheelchair process)

-Figure out how to change the setup of your home/work/school to make it work better for you

-Teach you new, easier ways to do your daily activities. For example, I learned how to fold laundry in a way that took less energy and was nicer to my shoulders

-Work on strategies that support your mental health

-Come up with a plan to work on your overall stamina and balance, although if you're seeing PT as well, they'll likely take the lead on this

-Give you strategies to help with sleep, if you're having any trouble there. They might also touch on nutrition.

-Help you advocate for yourself

I obviously can't promise they'll address all these things, but these are all things we're trained to do, so definitely ask if you're interested. OT should be about what YOU want to work on. I hope they're helpful and that your pain eases soon 💙

#occupational therapy #ehlers danlos syndrome #chronic illness advice #teaandspoons #chronic pain #questions #chronic illness #disability #spoonie #chronic fatigue

[tea-and-spoons]

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heyyyyy reminder for other cane users.

don't forget that cane tips need to be replaced.

i've been using my cane for almost two years on a near daily basis and i JUST switched out the tip and

[image IDs in alt text]

the new tip versus the old tip. i'm not sure how clear it is but, YEAH, there's like. half a millimeter of tread left on the old tip, if that

the replacement was LITERALLY 2 dollars. i bought two to justify the four dollar shipping but. TWO BUCKS.

i had noticed that i was having slipping issues on linoleum recently, but i did not realize how bad the issue had gotten until the new tips came so. PLEASE check your cane treads and if they're notably worn out PLEASE get yourself a new tip they're SO cheap and the grip i get on the new one is INSANE

please don't forget to replace your cane tips!

#crutches and walker users you too! #mobility aid #chronic pain #spoonie #disability advice #chronic illness #disability #teaandspoons #chronic fatigue #crutches #forearm crutches #cane #walker #ehlers danlos syndrome

[tea-and-spoons]

oh wow! hey if you take pills check this out. new medicine taking meta just dropped.

according to these models, out of the 4 tested postures, the best position to digest pills is laying on your right side. standing upright has a similar time to laying in your back at twice as much as laying on the right side, and laying on the left side is the slowest by far.

laying on right side: pill dissolves in around 10 minutes.

standing: pill dissolves in 23 minutes. laying on the back has a similar time.

laying on left side: pill dissolves in up to 100 minutes.

https://doi.org/10.1063/5.0096877

definitely worth a lot more research.

if you want your medicine to kick in fast, try laying on your right side! if you want your medicine to kick in slower, try laying on your left side.

[tea-and-spoons]

if u feel the first cramp and think "i dont need a painkiller yet, itll pass" ? that the devil speaking, take that painkiller immediately

[tea-and-spoons]

I think something we should talk about more in the chronic illness, mental health, and disability communities is the feelings of fear wrapped around high spoons days. It really is okay to feel nervous when you’re feeling good (even for just an hour). It doesn’t mean you’re broken or wrongs m. It’s okay to take your time learning what routines serve you best at different energy and pain levels. it’s okay to learn not to push yourself too far. It’s okay to acknowledge feelings of anxiety or fear or bittersweetness over really good moments. It’s okay 💜

[tea-and-spoons]

What are migraine glasses? Can't find anything on google except amazon ads

There is a new special tint for people with migraines and light sensitivity and/or photophobia- instead of the yellow night driving tint, it's actually shown to be more effective as a pinkish tone (they call it "rose" but it's very pink).

This is an ad for this specific company- but the research regarding FL-41 (the pink/rose tint) is real. It was suggested to me by my doctor after I talked about how painful and frequent my migraines are and how light often feels like someone's stabbing me in the brain and makes me want to claw my eye out with my fingers (or at least wear an eye patch), but I just ordered my first pair so I don't know yet if it'll be effective for me.

My migraines and photophobia are caused by a car accident injury back in 2018, which left me with a tbi and damaged ligaments around one of my eyes among other injuries.

[tea-and-spoons]

[tea-and-spoons]

Spoonie Life Tip #12

If you are limping when walking without a mobility aid, you should probably still be using the mobility aid. Otherwise you might get a new injury by trying to compensate!

*probably does not apply if you have always had a limp- do what work for you!

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #chronic pain #ehlers danlos syndrome #mobility aid #cane #crutches #walker #wheelchair #arthritis #hypermobility

[tea-and-spoons]

Not only is Valentine's day for Love, but for People with Epilepsy!!

#sending love to everyone with epilepsy! #spoonie holidays

[tea-and-spoons]

If you're in a crash/flareup you might be worried this is your new baseline and you'll never feel better than this. But chances are your body just needs time to recover. I know it can be one of the scariest feelings in the world, that you might permanently be stuck this way. What if you can't shower on your own again? What if you're never able to walk your dog again? What if you can't go out and do your favorite things anymore? Is this forever? This is catastrophizing, putting in your head that the worst case scenario is the most likely/guaranteed outcome. It's the worst thing you can do

I won't lie and tell you that's not a possibility but with many chronic illnesses flareups are just a sign that you need to rest and one of the best ways to make sure you bounce back is to manage your stress. Take care of your body, rest rest rest, nourish yourself, do what you can to lower your stress like listening to music, messaging/calling people you know, listening to podcasts, reading, drawing, watching videos. Don't beat yourself up if you can't focus or take in information. You're not filthy or disgusting if you can't shower today. If you can't tolerate light or sound, you can meditate or use imagery to cope. I heard somewhere about a writer who lost her ability to focus and think clearly due to her ME/CFS but she learned to create and sort of play out her stories in her mind and found that really helpful. Things like that

It's important to get a feel of your activity threshold and limit yourself. You don't need to prove to yourself or anyone that you're not too sick to do things, especially while you're flaring up. I've hurt myself with those kind of self fulfilling prophecies when I shouldn't have panicked about the possibility of my condition getting worse. Mental and emotional exertion are just as bad as physical exertion. Your body might react the same to you going out for a long run when you should be recovering as it does when you stay up all night anxious about how sick you are. They can wear you out equally

Give your body time to recover. Don't worry about what others say or do or try to tell you, I promise you're not lazy and the illness isn't "winning". All your body's doing is telling you it needs a break

[tea-and-spoons]

Spoonie Life Tip #11

Psychosomatic does NOT mean you're faking

Placebo effect does NOT mean you're faking

"No organic cause" does NOT mean you're faking

Brains are powerful and weird. Your symptoms are real.

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #chronic pain #chronic fatigue #functional neurological disorder #undiagnosed

[tea-and-spoons]

normal vs disordered: fatigue edition

normal: feeling tired at the end of a long day

not normal: feeling tired regardless of what you’ve done that day

normal: waking up tired every now and then due to stress or lack of sleep

not normal: waking up tired most mornings

normal: getting a little tired after standing for long periods of time

not normal: not being able to stand for very long without tiring out. being stood up drains your energy

normal: being tired more often during times of peak stress and lack of sleep, but otherwise fine

not normal: being tired/exhausted consistently for over 6 months

normal: melting into the sofa after a long day, and then struggling a little to get up

not normal: being too exhausted to move, to eat, to talk, or to do anything a person might be expected to do in an evening

normal: not liking to get out of bed in the morning

not normal: having mornings where you physically cannot get out of bed, or struggle greatly to get out of bed

the key thing is that it is not normal for you to spend most of your time being too tired to do daily tasks, and it is not normal to exist in a constant state of exhaustion. if possible, you should seek help if you’ve been experiencing fatigue for a while

[tea-and-spoons]

normal vs not normal: pain edition

normal: your knees/hips starting to twinge after climbing a big set of stairs

not normal: climbing stairs is hard for you, and you start to feel pain after a couple steps

normal: you wake up feeling pain after doing a lot of exercise the day before

not normal: you wake up feeling pain regardless of your activities the day before

normal: you are usually a zero on the pain scale

not normal: you cannot imagine what a pain scale zero would feel like

normal: when you experience pain, there is a direct reason for it, and it is able to be fixed with over-the-counter drugs (such as paracetamol)

not normal: you can’t figure out why you’re in pain, and taking over-the-counter painkillers doesn’t always work to fix it

normal: you do not spend most of your time in pain

not normal: you’ve spent most of your time in pain for over three months

if you experience pain regularly and for seemingly no reason, go to the doctor! you are not supposed to be in pain, and you deserve to find out what’s going on with your body!

[tea-and-spoons]

you can trust the signals your body is sending you. whatever physical symptom you're experiencing is real. your pain, fatigue, weakness, numbness, unsteadiness, malaise, dizziness, nausea - all of it is real. i believe you. even if you, doctors, friends, or family dont. i believe you.

you should have never had the idea that you cannot be the authority on your own body put in your head. you are the only person on this planet who can convey what you are going through. no one has the right to take that from you. please believe in and advocate for yourself. and know you deserve to have someone advocating for you, too.

[tea-and-spoons]

Heya everybody! Time to check in.

How's your body feel? Do you need to move, stretch, stop clenching, or change positions? Have you fed and hydrated yourself? Taken care of your bathroom needs? Cleaned up, showered, or changed your clothes as you're able? Taken any applicable medications?

How does your mind feel? Are you stuck? Do you need to change activities, talk (or stop talking) to a particular person, or listen to a different playlist? Have you done something to nurture peace in your heart? Have you seen the sky and breathed some fresh air (even through a door or window)?

I love you, and I hope you have a better day tomorrow!

[tea-and-spoons]

anybody have any tips for shaky hands? i ate a good, filling breakfast and i have chugged enough water for a life time and idk but its so damn annoying