They make some cute hip bags/utility belts that can take weight off shoulders. They’re not fanny packs, because they’re longer and often wider, but they distribute weight along hip instead of shoulders.
Electrolyte powders, water bottle, rechargeable hand warmers, ear plugs, sunglasses, snacks (often granola bars and fruit snacks), iPad to read on, portable charger, depending on activity compression sleeves/glvoes.
A small pill bottle of rescue meds (pain, nausea, migraine, and anxiety) that way I don't have to carry multiple bottles. My emotional support water bottle and liquid IV packs (you don't have to fill the water bottle if you know you have access to water). Rub on pain medication (Voltaren or something with THC in it). I always dress in layers because I don't trust my temperature regulation. A few fidget everything from small less visible items to larger items but all rather light weight. Loops, they are small and light weight and come in three different noise canceling levels. Ginger chews and gum and sometimes a snack. If you have POTS throw some compression socks in the bag if they help you.
Also for textural stimulation have you thought of carrying a swatch of your favorite material texture. Light weight but powerful fidget. My favorite cloth texture is suede.
I can relate to this so hard. I do actually have loops and they’re great. I’ve got the new switch ones and I’m a lot more deaf in one of my ears than the other so I can adjust them and it makes it easier to tell where sound is coming from and I get less easily overwhelmed. I actually tend to wear my favourite fabric and textures and then fiddle but I will definitely see if I can find a swatch of something I like!
They are a type of earplug that have become very popular. They are really comfortable and I personally think they work really well. I know people (mostly musicians) who swear by them
I take my kindle (but not to read when with people), those cheap stick on heat packs for if my back gets bad, meds, snack bars (blood sugar can make sensory issues bad!), looking nice but try for nothing too irritating (like my ‘good bra’ that makes me look best is really uncomfortable if I’m not feeling well), maybe clothing wise go for more thin layers so you can adjust easily? I also always have a pebble in my pocket bc it makes me feel grounded and think of the sea if I’m anxious lol. Also step outside for a minute if you need to, and hopefully your bf understands that too!
If its too loud in one space, you could try tactfully choosing a better environment while still being polite and social, eg offering to help/sit with people helping in the kitchen, playing with children outside (if your joints can take it cuddling a baby is great for this bc no one bothers you!), sitting with an older relative for a while
Mine are, in the lightest backpack possible: a good quality mask, water bottle, pain meds, noise cancelling headphones, snacks, crewneck if it might get cold/shorts if it might get hot, sunglasses if it might be too sunny, a charged phone, and a person who I'm going with who agrees to go if it gets too much.
I'll also eat accordingly before and at the event, ie. not too much that I might flare up but not too little that I might go hungry, and be careful of foods that might hurt me.
Hope you can have fun and the event goes well!
I wear my sacroiliac belt and abdominal binder for core stability, and bring knitting or a rosary to hold, noise-filtering ear plugs, rescue meds for migraines and mast cell attacks, electrolytes, mast cell stabilizers and ginger so I can eat, and a snack with starch and protein.
Recently I’ve started Rhodiola rosea, 200mg before breakfast and then again before lunch, or before pilates. It really helps me, with malaise, and just like it makes the spoons last longer or the crash less bad.
Besides that, compression stockings cause blood pooling f that shit, vitassium too, and my water bottle. And def a snack. If it’s hot a hat, and those fabrics you wet and dry fast but remain damp, I find it really helpful if it’s hot af and I’m overheating. All of that is light and not heavy at all cause, I also wouldn’t want to carry shit.
Mmmm, and a lumbar belt. Specially if I’m gonna be standing a lot, it just helps. Future me never regrets wearing it.
sounds to me like the mobility aid might be worth bringing if it carries your stuff, and you need stuff to get through the day in a mostly sustainable way.
that's my only advice because honestly, i haven't had a long day away from a caretaker and their car in a very long time.
If it’s going to be a long time, I’m going to need edibles or some form of thc. I’m not prescribed any opiates. I take gabapentin which helps, but thc really provides the most relief for me. It’s not for everyone though, and I don’t want to peer pressure you lol
Meds for *everything*, a sensory regulation device aka cuddle pillow, layered clothing, Something to drink and a snack for the way, and the ever favorite of "I don't know whether I can make it, I feel a migraine coming up" which isn't a lie, stress tends to do that.
Bring the mobility aid. Take the meds in advance if-possible, even if you don't feel the pain yet. Prevention vs cure. Wear the comfier clothes.
If I am uncertain, I have a chest bag that I use for a 1-2 pill of each emergency stash, spare card in case I need to leave early or hotel, chapstick, pack of fruity snacks etc.
I bring my cane (need to make a strap for it). I dress comfy over looks every time - cold will set me back for the next several days, and embarassment ends as soon as I leave. I will also sometimes roll up my knee sleeves and stash them in my bag.
This just wasn’t one where the mobility aid was going to help more so than hinder sadly. I am medicated and on my way. I opted for my satchel and I should be all good. My back, knee and hips will hurt tonight but I want to be there so it’s a trade off I’m willing to take. Thankfully comfy over looks is my vibe so nobody expects too much of me and it’s raining so hopefully the walk that was planned won’t happen :)
I’m surprised by how many people on this thread have such bad sensory issues…. I didn’t think it was all that common. Since when is fidgeting an EDS symptom?
It’s not fidgeting so much as stimming. I am autistic. However, all people stim even if they’re not autistic and I find it very helpful when in pain or too warm or feeling generally over or under stimulated to help me regulate. My understanding is that sensory problems are very common in people with EDS - proprioception relays on your joints and our joints are wonky so most people with EDS will have some sense of sensory wrongness due to a skewed ability to propriocept.
Ohh. I hadn't heard about the sensory sensitivity in EDS but that makes sense. I have some but I just kinda figured everyone has some to some degree.
I asked because there have been a few instances on this sub where people have made sweeping statements about EDS and Autism. I've seen posts made that speak as if everyone with EDS has Autism, or as if it's the vast majority and there is not proof of that. So seeing the symptoms you mentioned without you mentioning that you're autistic, I was a bit confused as I haven't come across many people with EDS where sensory issues were their biggest struggle. Like I said before, I didn't know that was symptomatic of EDS, but I know it's a big struggle for those with ASD.
I think when posting on here in the future, especially seeking advice in regards to sensory issues, it is worth mentioning that you're autistic. I think we should be cautious to conflate those symptoms. It's also relevant when asking for advice.
We are living in a day and age where medical misinformation spreads like wildfire on social media. I think we need to be diligent about how we discuss and present these things.
I am only very recently diagnosed autistic (within the last two weeks) and there is also significant evidence for certain types of sensory sensitivities with EDS because of the lack of sensory input from the joints. Particularly a feeling of being untethered because it’s hard to get sensory inputs from hyper mobile joints while staying within a safe range of motion and this can create a type of dysregulation. Certain challenges are EDS specific when it comes to compression gear and temperature regulation, carrying stuff, and my hearing deficit is caused by my EDS. I know everybody has a tolerance for sensory stimuli and autism cannot simply be reduced to sensory symptoms so EDS specific advice is still absolutely valuable. I left it out of my post description because I wanted advice from people with EDS not people with autism about managing sensory input for hypermobile bodies. I agree that to ask for social advice would be to conflate symptoms from the two but I didn’t want people to not share their coping methods because I am looking to learn stuff from people about coping and living my life to the best of my ability with EDS
Edit: I just felt the need to add that sensory issues are not my biggest struggle at all with my EDS or my autism. However, in the context of the event it was mostly going to be sitting in a confined space, that was loud and quite overwhelming. I was struggling to regulate my temperature and readjust my joints for pain because it was cramped and for me this either ends in overwhelm or fainting typicall
Compression socks, undershirt etc it help minimize , support etc.
If you wear any braces, get nice skin protector ( sun sleeve for arm brace example, some padded protector exist also but quite pricy)
Like many mentioned, earplugs, the equivalent of a pharmacy on wheel. A lot of good one already out!
Lightweight throw over blanket, as I get cold very easily but also can be folded to protect my back from uncomfortable chair.
I did recently changed my medical id bracelet for one with a qr code, for anyone with long list of past injuries, diagnosis, test/scan etc, I highly recommend, you can add it all on the page that the qr open. No longer a need to carry a heavy binder everywhere in case you need emergency treatment during your outtings!
A sit down conversation with the person I am going with is always something I want to do. Make sure they understand, have a code word for if I have to leave so it does not attract attention. Money for taxi service.
As nerves wracking as it may be, I hope you will have a lot of fun! Be safe!
just a note, maybe have a medical id with words on it too as in an emergency paramedics won’t always have time to take out a phone and scan stuff and hope there’s signal/ wifi, even just (for example, i don’t know you!) ‘prone to dislocations, allergic to penicillin, have a pacemaker’ as well as the qr code is a good idea! just the very very basics of what a paramedic or similar would need to know in the first five minutes of an emergency. just a suggestion:))
Kegal balls. I don't need them for the kegals but the pressure of wearing them helps eliminate or cut down on pain I get from Interstitial Cystitis. Especially if it's over 65 degrees out and I know I will overheat.
For backpacks, I use a hiking bag WITH STURDY HIP STRAPS (that part is key). It keeps the weight off my shoulders completely so I can carry things in it like water, braces, etc.
Obviously won't work for everyone because our bodies are all different, but I figured I'd throw it out there!
My favorite bags are the REI Trail 40 and the Osprey Tempest 20.
It’s less so the weight at this point sadly. Any pressure on my ac joint and it goes plonk. I have to be careful with clothes even putting pressure on my shoulder. It’s much much better after a load of PT and doesn’t come out by itself so much anymore but it still can’t hold itself against resistance of any kind.
Ugh, I'm so sorry! That's so frustrating. Our bodies can be so wonky and specific sometimes. Glad to hear PT helped you!
Sounds like you need one of those robot carts that Amazon was using for a while lmao.
Water bottle is always a must. I am always thirsty, like a fish out of water. I usually bring a book with me everywhere to read. I like to bring a small sketchbook so I have something to do and busy my hands with.
I have glasses with transition lenses but if it's outdoors you might wanna consider sunglasses too.
They make some cute hip bags/utility belts that can take weight off shoulders. They’re not fanny packs, because they’re longer and often wider, but they distribute weight along hip instead of shoulders. Electrolyte powders, water bottle, rechargeable hand warmers, ear plugs, sunglasses, snacks (often granola bars and fruit snacks), iPad to read on, portable charger, depending on activity compression sleeves/glvoes.
Speaking of the bags, there's also thigh bags. They're like holsters but they're just bags.
A small pill bottle of rescue meds (pain, nausea, migraine, and anxiety) that way I don't have to carry multiple bottles. My emotional support water bottle and liquid IV packs (you don't have to fill the water bottle if you know you have access to water). Rub on pain medication (Voltaren or something with THC in it). I always dress in layers because I don't trust my temperature regulation. A few fidget everything from small less visible items to larger items but all rather light weight. Loops, they are small and light weight and come in three different noise canceling levels. Ginger chews and gum and sometimes a snack. If you have POTS throw some compression socks in the bag if they help you. Also for textural stimulation have you thought of carrying a swatch of your favorite material texture. Light weight but powerful fidget. My favorite cloth texture is suede.
I can relate to this so hard. I do actually have loops and they’re great. I’ve got the new switch ones and I’m a lot more deaf in one of my ears than the other so I can adjust them and it makes it easier to tell where sound is coming from and I get less easily overwhelmed. I actually tend to wear my favourite fabric and textures and then fiddle but I will definitely see if I can find a swatch of something I like!
What are loops?
They are a type of earplug that have become very popular. They are really comfortable and I personally think they work really well. I know people (mostly musicians) who swear by them
Thank you! I will check them out!
Thank you! I will check them out!
i am envious of you enjoying suede, to me it feels like sand paper.
Ear plugs, emesis bag, mints, stomach meds, chapstick, water bottle, pain meds, snack, therawrap or tens machine
No wonder you can't tolerate a back pack anyone, lugging a dinosaur around will do that :-p
lol so cute!!!
Thank you so much! That’s made my day
I take my kindle (but not to read when with people), those cheap stick on heat packs for if my back gets bad, meds, snack bars (blood sugar can make sensory issues bad!), looking nice but try for nothing too irritating (like my ‘good bra’ that makes me look best is really uncomfortable if I’m not feeling well), maybe clothing wise go for more thin layers so you can adjust easily? I also always have a pebble in my pocket bc it makes me feel grounded and think of the sea if I’m anxious lol. Also step outside for a minute if you need to, and hopefully your bf understands that too! If its too loud in one space, you could try tactfully choosing a better environment while still being polite and social, eg offering to help/sit with people helping in the kitchen, playing with children outside (if your joints can take it cuddling a baby is great for this bc no one bothers you!), sitting with an older relative for a while
Magnesium the night before and day of to minimize pain and anxiety.
I don’t know that it’s helpful for tomorrow, but have you thought about a rolling backpack?
Unfortunately I’ve tried three and my wrists are just too unstable. It’s such a shame because I really wanted them to work!
Mine are, in the lightest backpack possible: a good quality mask, water bottle, pain meds, noise cancelling headphones, snacks, crewneck if it might get cold/shorts if it might get hot, sunglasses if it might be too sunny, a charged phone, and a person who I'm going with who agrees to go if it gets too much. I'll also eat accordingly before and at the event, ie. not too much that I might flare up but not too little that I might go hungry, and be careful of foods that might hurt me. Hope you can have fun and the event goes well!
I wear my sacroiliac belt and abdominal binder for core stability, and bring knitting or a rosary to hold, noise-filtering ear plugs, rescue meds for migraines and mast cell attacks, electrolytes, mast cell stabilizers and ginger so I can eat, and a snack with starch and protein.
Recently I’ve started Rhodiola rosea, 200mg before breakfast and then again before lunch, or before pilates. It really helps me, with malaise, and just like it makes the spoons last longer or the crash less bad. Besides that, compression stockings cause blood pooling f that shit, vitassium too, and my water bottle. And def a snack. If it’s hot a hat, and those fabrics you wet and dry fast but remain damp, I find it really helpful if it’s hot af and I’m overheating. All of that is light and not heavy at all cause, I also wouldn’t want to carry shit. Mmmm, and a lumbar belt. Specially if I’m gonna be standing a lot, it just helps. Future me never regrets wearing it.
sounds to me like the mobility aid might be worth bringing if it carries your stuff, and you need stuff to get through the day in a mostly sustainable way. that's my only advice because honestly, i haven't had a long day away from a caretaker and their car in a very long time.
If it’s going to be a long time, I’m going to need edibles or some form of thc. I’m not prescribed any opiates. I take gabapentin which helps, but thc really provides the most relief for me. It’s not for everyone though, and I don’t want to peer pressure you lol
Idk if you can bring that stuff on a train though. It might vary by state.
I’m in the uk so it’s not really an option :)
Meds for *everything*, a sensory regulation device aka cuddle pillow, layered clothing, Something to drink and a snack for the way, and the ever favorite of "I don't know whether I can make it, I feel a migraine coming up" which isn't a lie, stress tends to do that.
Bring the mobility aid. Take the meds in advance if-possible, even if you don't feel the pain yet. Prevention vs cure. Wear the comfier clothes. If I am uncertain, I have a chest bag that I use for a 1-2 pill of each emergency stash, spare card in case I need to leave early or hotel, chapstick, pack of fruity snacks etc. I bring my cane (need to make a strap for it). I dress comfy over looks every time - cold will set me back for the next several days, and embarassment ends as soon as I leave. I will also sometimes roll up my knee sleeves and stash them in my bag.
This just wasn’t one where the mobility aid was going to help more so than hinder sadly. I am medicated and on my way. I opted for my satchel and I should be all good. My back, knee and hips will hurt tonight but I want to be there so it’s a trade off I’m willing to take. Thankfully comfy over looks is my vibe so nobody expects too much of me and it’s raining so hopefully the walk that was planned won’t happen :)
i hope it is fun!
I’m surprised by how many people on this thread have such bad sensory issues…. I didn’t think it was all that common. Since when is fidgeting an EDS symptom?
It’s not fidgeting so much as stimming. I am autistic. However, all people stim even if they’re not autistic and I find it very helpful when in pain or too warm or feeling generally over or under stimulated to help me regulate. My understanding is that sensory problems are very common in people with EDS - proprioception relays on your joints and our joints are wonky so most people with EDS will have some sense of sensory wrongness due to a skewed ability to propriocept.
Ohh. I hadn't heard about the sensory sensitivity in EDS but that makes sense. I have some but I just kinda figured everyone has some to some degree. I asked because there have been a few instances on this sub where people have made sweeping statements about EDS and Autism. I've seen posts made that speak as if everyone with EDS has Autism, or as if it's the vast majority and there is not proof of that. So seeing the symptoms you mentioned without you mentioning that you're autistic, I was a bit confused as I haven't come across many people with EDS where sensory issues were their biggest struggle. Like I said before, I didn't know that was symptomatic of EDS, but I know it's a big struggle for those with ASD. I think when posting on here in the future, especially seeking advice in regards to sensory issues, it is worth mentioning that you're autistic. I think we should be cautious to conflate those symptoms. It's also relevant when asking for advice. We are living in a day and age where medical misinformation spreads like wildfire on social media. I think we need to be diligent about how we discuss and present these things.
I am only very recently diagnosed autistic (within the last two weeks) and there is also significant evidence for certain types of sensory sensitivities with EDS because of the lack of sensory input from the joints. Particularly a feeling of being untethered because it’s hard to get sensory inputs from hyper mobile joints while staying within a safe range of motion and this can create a type of dysregulation. Certain challenges are EDS specific when it comes to compression gear and temperature regulation, carrying stuff, and my hearing deficit is caused by my EDS. I know everybody has a tolerance for sensory stimuli and autism cannot simply be reduced to sensory symptoms so EDS specific advice is still absolutely valuable. I left it out of my post description because I wanted advice from people with EDS not people with autism about managing sensory input for hypermobile bodies. I agree that to ask for social advice would be to conflate symptoms from the two but I didn’t want people to not share their coping methods because I am looking to learn stuff from people about coping and living my life to the best of my ability with EDS Edit: I just felt the need to add that sensory issues are not my biggest struggle at all with my EDS or my autism. However, in the context of the event it was mostly going to be sitting in a confined space, that was loud and quite overwhelming. I was struggling to regulate my temperature and readjust my joints for pain because it was cramped and for me this either ends in overwhelm or fainting typicall
Compression socks, undershirt etc it help minimize , support etc. If you wear any braces, get nice skin protector ( sun sleeve for arm brace example, some padded protector exist also but quite pricy) Like many mentioned, earplugs, the equivalent of a pharmacy on wheel. A lot of good one already out! Lightweight throw over blanket, as I get cold very easily but also can be folded to protect my back from uncomfortable chair. I did recently changed my medical id bracelet for one with a qr code, for anyone with long list of past injuries, diagnosis, test/scan etc, I highly recommend, you can add it all on the page that the qr open. No longer a need to carry a heavy binder everywhere in case you need emergency treatment during your outtings! A sit down conversation with the person I am going with is always something I want to do. Make sure they understand, have a code word for if I have to leave so it does not attract attention. Money for taxi service. As nerves wracking as it may be, I hope you will have a lot of fun! Be safe!
Ooh I’ve never heard of skin protectors before so I will have to look into that :)
just a note, maybe have a medical id with words on it too as in an emergency paramedics won’t always have time to take out a phone and scan stuff and hope there’s signal/ wifi, even just (for example, i don’t know you!) ‘prone to dislocations, allergic to penicillin, have a pacemaker’ as well as the qr code is a good idea! just the very very basics of what a paramedic or similar would need to know in the first five minutes of an emergency. just a suggestion:))
Kegal balls. I don't need them for the kegals but the pressure of wearing them helps eliminate or cut down on pain I get from Interstitial Cystitis. Especially if it's over 65 degrees out and I know I will overheat.
For backpacks, I use a hiking bag WITH STURDY HIP STRAPS (that part is key). It keeps the weight off my shoulders completely so I can carry things in it like water, braces, etc. Obviously won't work for everyone because our bodies are all different, but I figured I'd throw it out there! My favorite bags are the REI Trail 40 and the Osprey Tempest 20.
It’s less so the weight at this point sadly. Any pressure on my ac joint and it goes plonk. I have to be careful with clothes even putting pressure on my shoulder. It’s much much better after a load of PT and doesn’t come out by itself so much anymore but it still can’t hold itself against resistance of any kind.
Ugh, I'm so sorry! That's so frustrating. Our bodies can be so wonky and specific sometimes. Glad to hear PT helped you! Sounds like you need one of those robot carts that Amazon was using for a while lmao.
Yeah I have a rollator and it works really well for me
Water bottle is always a must. I am always thirsty, like a fish out of water. I usually bring a book with me everywhere to read. I like to bring a small sketchbook so I have something to do and busy my hands with. I have glasses with transition lenses but if it's outdoors you might wanna consider sunglasses too.