I've only had it for a day so far but I love that it's lightweight, Collapsible, can carry 250 pounds and was only $13.99 (with Amazon Prime) it's 20 dollars without prime. I give it ☆☆☆☆☆
Link to the product on Amazon https://www.amazon.com/dp/B0009STMYS/ref=cm_sw_r_cp_apa_glt_fabc_T4AFMTKTEP0PJ65EMBWY
I've wanted a mobility aid for at least 2 weeks now. I put off getting it because it was hard to accept my chronic pain was making it harder to walk. On top of that my parents keep saying I just need to exercise more. I'm happy I put my foot down and got it anyway. I imagined myself with a crane before hand so I think that helped. Thank you for your kind words 🥰
Awe, I’m sorry hun. Maybe try something like this. Although I don’t believe service dogs in training are protected by federal laws; however, your state laws may be different.
I know exactly what you’re talking about. We truly do grieve the “old life” we used to have and it’s hard to come to terms with that. I’ve been dealing with chronic illness since 2018 and I still always fluctuate between denial and acceptance. I found this book to be very helpful. It has prompts on the bottom of each page that you can do as well.
Yes I also would recommend Appacademy’s free coding boot camp (it’s a self study)
https://open.appacademy.io/
or freecodecamp.com
https://www.freecodecamp.org/
(also self study) but those two are absolutely perfect! Also I would say udemy has some pretty good stuff at a very cheap price including certification training like CompTia A+
Aww, that sounds so frustrating. I think you could use a lot of adaptive mods. Is there anyone who can help you? An agency or family? I've got a couple of ideas for things that might help, but maybe reach out on r/caregiversupport - I'm sure some people there have experience with making adaptive living setups.
For the oven, can you get a countertop convection oven? It won't cook a turkey, but it will get your daily needs met. You can get it on any surface the right height for you.
For the fridge, can you swap to 1 or even 2 mini bar-fridges? Some quick searches show they even come with both a fridge & freezer section for under $300, which isn't bad.
A different approach for your fridge issues might be to retrofit the interior to maximize the usable space that's at a comfortable level for your to access and set up the lower and higher space for special items or things you don't access often. Things like this can dispenser could mean that you don't have to push stuff to the back and then go haul it back out again https://www.amazon.ca/Better-Houseware-1496-6-Beverage-Dispenser/dp/B0006L7KYM . Hopefully your fridge has adjustable shelves, then you can really min-max the versatility. You could maybe even add a mini-shelf unit inside to add even more layers of storage. You might also find clear containers with latched lids helpful, too. Like if all your sauce bottles are in one container you could pull out the whole set at once instead of rifling around for one or two in the pile. Some storage containers even come with a front handle so you can pull it out forward instead of lifting it up.
I hope none of these thoughts come off as offensive. I'm just trying to help and really don't know much about the specifics of your situation besides what's written here. I hope any of it is useful or gives you ideas for things that might work.
I found a very similar mat for half price on Amazon - just FYI for anyone on a smaller budget. https://www.amazon.com/ProSource-Acupressure-Pillow-Relief-Relaxation/dp/B00I1QCPCG/
Been there—ditch everything that’s not truly keep you alive, noticeably improve quality of life essential. Saves money, reduces side effects/interactions. Then once you’re working with just the basics, you can better find a method of taking/remembering to take them that works. I bought two pill boxes big enough to do morning and night meds for a month so I could sit down and load up two months at a time- I’d noticed that just doing one month meant there would inevitably be a period of a few days when one month’s box was done that I’d have a few days lapse because I’m lazy and forgetful. Finish a month, just start the next month. But then you’ve gotta refill the empty month at some point to ensure you can repeat the process. Granted this really only works with 90-day supplies( but you could modify to a week or whatever works with your insurance/finances.
I’m loathe to recommend an Amazon product but this is what I’ve got if you remember elementary school Science class& colors of the rainbow ROY G BIV, that help me remember what the hell day it is too.
AUVON iMedassist Weekly AM/PM... https://www.amazon.com/dp/B074MC6HJR?ref=ppx_pop_mob_ap_share
Can you get something like this?
I use this Lewis N Clark pill organizer . The little am & pm envelopes/baggies hold at least 10 pills each, probably more if they’re small pills. I like it for traveling because in the morning I can just take the little envelope with me for when I need to take the meds during the day, and leave the rest in my suitcase or hotel. If you’ll be gone for 3 weeks, you can order extra envelopes. (I also make sure to have a detailed list of all the meds, including brand name & generic name and the prescribing doctors, in case I have to show it to authorities.)
You can request small pill bottles from Walgreens or CVS that have the child lock on them if you have time, but I also have two 7-day pill sorters that are XL size with four compartments per day that can get me through, thankfully at this point, four weeks of morn/night. Extra Large Pill Organizer 7 Day... https://www.amazon.com/dp/B01LY0FGRV?ref=ppx_pop_mob_ap_share
I like the collapsible cane for when I'm going to be sitting then I can just put the can in my bag and it wont cause a problem, my favorite cane is this one from Amazon
https://www.amazon.com/gp/product/B000CSSDYU/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Its got a nice comfortable grip for longer walks so when you have to put your weight onto the cane it wont hurt your hand
And so it was and will always be for those who get initiated. The form falters. We can falter with it, or access from the deep invisible something that surpasses our mere body.
Plato called man's body the tomb of the soul. 'Therefore', he says 'when we enliven the soul we cause something devine to rise out of the grave of the body.' And maybe we, who feel trapped in this thing of water and bones and pain, it is given to us to awaken our true, unknown essence: The knight without armor. The angel with one wing.
What we want and what we can are two entirely different realities, separated by a vast space. In this space, we can be imprisoned, but maybe we can also find a kind of freedom reserved for only the few.
This then is the essence of your journey through This Strange Land: the ordinary is lost so that the extraordinary may emerge.
This Strange Land: https://www.amazon.com/dp/B08JM6K1BR
Bear your life; this brief passage between two Oceans of Light. Sometimes you'll dance. Sometimes you'll crawl. Cry, scream, collapse. It matters not. In the end you will fly. And in the scale of the universe this, your courageous sojourn, will be over in a moment.
Oh, you should look into wedge pillows! I started waking up every morning with back problems, but recently I was in the hospital, and sleeping with the head angled a bit upward stopped the problem completely! I bought a wedge pillow after I got home, and it's worked like a dream. It might work for you too, and it's a heck of a lot cheaper than a new bed!
This is the one I got: https://www.amazon.ca/gp/product/B089M9V31H/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1
What you bring here marks your threshold experience - the definitive transition from what once your life was and what you thought your future would hold, to being pushed from the shore onto the dark waters of the unknown, like Odysseus in his Vessel of the Sun. Entering a world where others cannot follow, because no matter how much they will ever know and understand what something is, they will never know how something feels. This is your share: to be a knight without armour, to fall, rise, despair and yet, to go on. To feel your identity crumble, to fall into nothingness, to lose the substance that once held things together.
But in the entire history of the universe, there have been no endings without new beginnings. Plato called man's body the tomb of the soul. 'Therefore', he says, 'when we enliven our soul, we allow someting divine to rise out of the grave of the body'. And so, this is your share also: to get to know yourself and the hidden mystery of life as only few will. Your shadow is not there to create darkness, but to enable you to find your light behind it. Please dont ever doubt your strength and your power. This may not be the life you chose, certainly not the life you ever thought would be yours. But it is. Not because you do not deserve any better, but because you are the only person in the world who can make something of it and, in so doing, fulfill your life purpose.
This then, will be your journey through This Strange Land: the ordinary is lost, so that the extraordinary can emerge.
https://www.amazon.com/dp/B08JM6K1BR
Please keep on posting here, if you want. We are all knights without armour. Paralized in body. Shining in spirit.
The game changer for me for car travel is when I discovered you can buy inflatable air mattresses that fit in the back seat of vehicles. If you have an SUV, even better. I got mine from Amazon here:
https://www.amazon.com/dp/B01M1HBI78/ref=cm_sw_r_oth_tai_8py7Bb8N7Z54B
It has air compartments that fill in the floor space on either side of the back seat, making the bed level and filling up the entire space from the back of the front seat. It’s almost the size of a twin bed! I put a sheet down, bring in comfy back pillows and blankets, and now am able to recline and relax longwise in our back seat. Seriously, it is just the best. I only wish I had found it sooner!!
It's really good to hear that you were able to get your mood to a sanguine state. That's great! Keep your chin up!
Not sure if it's helpful, but I watched a documentary on Netflix last night that really hit home on some of these issues. It's called "Shut-ins: Britain's Fattest People" (https://www.netflix.com/title/80244202 if you're interested)
The issues they discuss in that 45-minute show that overlap with chronic illness challenges are things like being isolated in your home for years on end, being physically unable to take care of a lot of your basic needs, struggling with moods for anger, frustration, and despair/depression. It was comforting to see that other people with similar situations struggle intensely and see that it takes a toll on their family/personal relationships and that being in this situation is just messy. I just felt a bit less alone after watching it. YMMV, but maybe check it out if you're interested.
Best wishes for a good day!
I have a Warmies neck wrap and eye mask that I love. They are scented and just give a feeling of relaxation when in use. ❤️
Also, this microwavable blanket is on my wishlist, but I haven’t personally tried it yet.
My best suggestion is a super adjustable lap desk. You don't want to make things worse because it's too tall to work on. And it will sink into the bedding, so it may take some trial and error to get one that works for you.
I also love these baskets, I have one hanging within arms reach.
Wow, what a story of transformation! Because that is really what happens, isn't it? Not only do we leave behind our independence, our self-reliance and abilities; with that, albeit kicking and screaming, we also leave behind the person who was o so attached to all that. And in this process, we first fall into nothingness. Lost. Mourning. Desperate. Not seeing beyond the loss, which in truth, is a kind of death.
Only much later, feather by feather, an inner Phoenix rises.
'This then is the essence of your journey through this Strange Land: the ordinary is lost, so that the extraordinary can emerge. '
https://www.amazon.com/dp/B08JM6K1BR
In admiration.
And yet, all the wonderfully understanding comments and agreements not withstanding, the bottom line is that we continually live in the space that separates what we want from what we can. There's loneliness, in that space. And guilt. And grief, doubt, disappointment and many other emotions that never go away completely, no matter how well we learn to cope and 'allow' ourselves to answer the body's demands. Demands, yes. Not needs or preferences. Uncompromising, merciless demands. When we least expect it. When we least want it.
And then life takes on a surreal quality, almost. As if I'm living not my own script, my own life. Certainly not the one I would have chosen. Then, deep within that reality, a portal opens. Into another reality. A reality where, as Plato said: 'The body is the tomb of the soul. Therefore, if we enliven the soul, we cause something devine to rise out of the grave of the body.'
Such truth. But what a price!
'This then is the essence of your journey through this Strange Land: the ordinary is lost, so that the extraordinary can emerge.'
I understand I just push through it. Because of my bad experiences with pharmaceuticals. Try this fish oil, you don't burp up this one and they are very tiny.
Here we are in our realm where others cannot follow. Time in This Strange Land does not behave in the manner we are used to. A single moment can open up and expand from horizon to horizon. But also: weeks, even months can contract and trap us in their sameness, saturated with dark images and taunting voices that speak words of calamity, shame and despair. Our lonelines is not found in who we are, but in who we are no longer. After all, is being human not found in expressing our values, passion and commitments? So when that ability to express is taken away, what remains? What shore lies on the other side of the dark waters on which we are adrift? The soul's initiation is marked by fundametal separation. From who we were. From what our future once was. From the world we once participated in. 'Separatio' was a process the ancient alchemists considered essential in the creating of gold out of base metals. Could this also serve as an image for what happens in our soul? The sun that parches, blinds and burns is also the sun that illumines the world and gives life to all things. The door within you that opens into the abyss of your suffering is also the door that opens onto the summit of your love.
In the vast universe that surrounds us, there are nebulas and enormous areas without clear form. These are the realms that exist between being and non-being. And it is in these nebulas where stars are born. They are like cosmic incubators, shining with brilliant light. Yet, they have no substance of their own. Likewise, it is within your seemingly inner formless experiences where your stars are born.
From: 'This Strange Land' a Reluctant Pilgrimage
I don't know if this is going to help you, but I have a hunch, because you mentioned schizophrenia, hallucinatons and voices in addition to pain and memory loss, potential microvascular lesions...
These physicians have been treating conditions like that with high dose B3 in the form of nicotinic acid and say that it's unbelievable how well it works and brings relief to patients:
Covid long haulers who get a lot of neurological issues post Covid seem to be getting great results from high dose nicotinic acid.
Maybe it's something for you too? Seen as your doctors are clueless as how to proceed. It might be worth a try. You can get this over the counter and it's cheap.
Pure Enrichment PureRelief Neck and Shoulder Heating Pad (Charcoal Gray) - Fast-Heating Technology with Magnetic Neck Closure, 4 Heat Settings, Moist Heat Therapy Option and Convenient Storage Bag https://www.amazon.com/dp/B01KVYJJBK/ref=cm_sw_r_cp_api_i_CrLBFbDCGMM81
Yep. Chronic pain, multiple autoimmune diseases etc.
I have two pairs of denim overalls, but that's the only denim I wear around my waist/ back.
I have stretch jeggings for when I need an outfit that looks like jeans.
I have at least a half dozen soft, stretchy maxi skirts that I can wear with tank tops, hoodies, whatever works. Bonus, I get frequent comments about being "dressed up" when I'm just wearing what doesn't hurt.
And, of course, the almighty legging. I'm a big girl, and get mine from Torrid, as they have the most consistent sizing I've come across anywhere, and their bike shorts are equally as great, though i currently only own one pair.
Empowering me and believing in me is the absolute best thing a doctor can do. Acknowledge my strengths. Listen to my concerns.
There is an AMAZING book that I highly recommend and soooooo wish more doctors read. It's called "What Patients Say, What Doctors Hear". It's for doctors and it's all about understanding the patient perspective and how to communicate best with patients. Please read it and tell other prospective doctors to as well!
https://smile.amazon.com/dp/0807087491/ref=cm_sw_r_cp_awdb_btf_t1_75SqFb3T6CB67
I think a tongue scraper would at least help get a lot more junk off your tongue than just your toothbrush when you brush your teeth. I have one I got on amazon that even has bristles and I’ve noticed an improvement in my breath since getting this. I also think it wouldn’t hurt talking to your doctor about starting a probiotic to help restore the normal flora in your body since the prednisone caused an imbalance. Also, just to double check, do you use any inhalers?
Do you sew? I have made a few "blanket -like bags" out of polar fleece for a friend. They open on the front with snaps . I have threatened to make her a snuggie too.
Leg warmers are your friend. polar fleece, knitted, store bought or homemade, indoors or out.
Found a link at amazon us for a heavy-duty wheelchair blanket to give the idea. https://www.amazon.com/XWSM-Waterproof-Fleece-Wheelchair-Blanket/dp/B08SK87SM9
This is the stuff I have used. It only took mine once or twice before they figured out what not to chew on.
Buy it a tiny sleeping bag.
Lol jk an insulated medicine bag - this one has a temperature strip, and you can see if the gel packs are ones you can heat or freeze, or throw a hand warmer in there once or twice a day.
As a person with only one functional hand- I avoid the pull tab cans whenever possible, or as someone else said- turn them upside down and use an automatic can opener. This is the opener I have now. It’s pretty good but sometimes i fight with it to let go after the can is open. Kitchen Mama Electric Can Opener:... https://www.amazon.com/dp/B07FVQLBL3?ref=ppx_pop_mob_ap_share
Thank you. You might find support at: https://www.amazon.com/dp/B08JM6K1BR If you can't access it I'll happily send you a pdf copy. Just ask at: Best wishes.
" I can be changed by what happens to me. But I refuse to be reduced by it." - Maya Angelou
Thank you. You might find support at: https://www.amazon.com/dp/B08JM6K1BR If you can't access that, I'll happily send you a pdf copy. Just drop me a request at: Best wishes.
"I can be changed by what happens to me. But I refuse to be reduced by it" Maya Angelou
Hi, thanks for the info and nice to hear back! Winter is very tough on me too, I have constant bronchitis. Here is the humidifier I use: https://www.amazon.com/Honeywell-Fill-Warm-Humidifier-Black/dp/B08G1XY69W/
What I like is that is has no filters to change, heats the water enough to kill bacteria so doesn't need germ cleaning, only the occasional soak with vinegar to get off minerals (depending on how hard your water is). You can fill it from the top, using a pitcher (many of them you have to fill and then turn them over, which is messy). It shuts off by itself if it runs out of water, although I find that filled it can go for many hours. I find it a great relief to have it going all winter long.
This might sound a little crazy but, hemorrhoid cream is the highest percentage lidocaine that you can get over the counter. Also I haven’t used them myself but these shot blockers might be helpful. They use acupressure to help distract the nerves from the sensation of the needle
So my husband and I have been looking at this one
It’s expensive but it’s what they use at the hospital in town so it’s be accurate to what the doctors office is seeing when you go in.
I’m going to get this mini ice maker just for this purpose
This stuff is cute, might be an easy way to revamp a mobility aid oneself.
Here are some top of mind:
Shower seat. Even when I’m having a flare day, knowing I can sit and shower makes it easier, and I always feel better after a shower
Weighted blanket
More ergo friendly gaming controllers(switch pro controller with back toggles and elite controller)
Buying prechopped veggies at the store. Helps with hand pain while cooking!
A kindle. I love to read, I just can’t hold books anymore
Hands free dog leash(wraps around waist)
Big water bottle(ensures I drink enough water and I don’t need to get up as much)
Hair shampoo brush (Hair Shampoo Brush, HEETA Scalp... https://www.amazon.com/dp/B07L3XSF65?ref=ppx_pop_mob_ap_share) the scrubbing motion with my fingers is pain lol
Changed all the door handles in the house to levers instead of knobs
Heated blanket, heated pad, heated EVERYTHING lol
Neck massager
Eye mask (one you can heat/cool and one super light one)
Tiger balm, biofeeze, that kinda stuff
Noise cancelling headphones
Ginger chews/candies, I carry these things everywhere with me
And probably so much more I’m forgetting lol
I like Propel powder, which I buy on Amazon
It takes a little trial and error, but I’m pretty good at it now. You can also buy pre-sized bags that aren’t on a roll.
I got a standing stool I used in the kitchen for a while. Literally looked like an oversized bike seat with three legs on rollers, the height of a short barstool. So one can sit, but in a nearly standing height, yet roll around a bit and be near the sink, counter, stove etc. Like this there's other ideas now that may work better, but this is what I used for a while.
Mouth-watering drugs, pilocarpine and cevilimine cause your salivary glands to produce more. If you live in the U.S., these are available to us.
I lost my singing voice because of dryness, the cevilimine brought mine back about 90%.
Yeah, the heartburn I have is also hideous. The only thing that helps is staying off white sugar and staying low carb all day, and no acidic foods after 5.
There's also this stuff called Biotene you can spray in your mouth at night to make you salivate if you wake up very dry. God knows water doesn't help a whole lot. Also these xylitol tablets that stick to your gum or a tooth can slowly dissolve and keep you Moist. Most people like them but I dislike the flavor.
Amazon seems to have a decent selection of medical alert bracelets. This one in particular looks pretty good.
This exact one, the Lewis N Clark Bewell eye mask. Perfect combination of comfort and function. I work overnights, so I sleep during the day, and this blocks all the light, while still being light and comfy. Nothing at this price point even compares. They have other colorways and designs, but this specific one is the most comfortable. The others are still okay though.
There's tiger balm ultra strength which is even stronger and doesn't stain. Because the extra strength will stain everything!
https://www.amazon.com/dp/B000N5WT2O/ref=cm_sw_r_awdo_QA968N6N9XX7J9RRSSMS
Do patch tests though because on sensitive skin it can cause burning. Like i can't uae it for headaches on my head.
There's tiger balm ultra strength which is even stronger and doesn't stain. Because the extra strength will stain everything!
https://www.amazon.com/dp/B000N5WT2O/ref=cm_sw_r_awdo_QA968N6N9XX7J9RRSSMS
Do patch tests though because on sensitive skin it can cause burning. Like i can't uae it for headaches on my head.
You can overcome imposter syndrome if you know how your mind works. BEING ME BEING FREE explains everything with simple words and pictures. Change your thinking, change your life! Learn more here.
I use a combination of saline wash and fluticasone nasal spray. I haven’t had a stuffy nose in a really long time.
HealthA2Z Fluticasone Propionate Nasal Sprays, 24 Hour Allergy Relief,120 Sprays, 0.54 fl oz https://www.amazon.com/dp/B076216K2V/ref=cm_sw_r_cp_api_i_QGJW6RVBTEQKSPPY8EB3?_encoding=UTF8&psc=1
I got a pill box that’s tiny, holds a good bit, and folds over on itself to keep in my purse for when i forget. I don’t leave the house much but when I do it has saved my bacon more than once. I still put it in a tiny zip bag so nothing ever spills but this one I doubt will. Here’s a link. 2 Pack Couple Travel Pill Case... https://www.amazon.com/dp/B07L7KSR43?ref=ppx_pop_mob_ap_share
I got these that are likely a knock off. They seem to be working really well. A lot of our overhead lights are bright white and really mess with my head, and these seem to totally counteract it while still being able to see. I've also been using these as sunglasses as well, since my best pair broke. The anti glare isn't perfect, though I've been in contacts for years so I really really notice it. There are similar ones that can clip on to prescription glasses, and some in the reviews wore these over their prescription lenses.
If they work well for you there are companies that make prescription lenses with the migraine tint, polarization, etc.
https://www.amazon.com/dp/B08952CCMY?psc=1&ref=ppx\_yo2ov\_dt\_b\_product\_details
I take sodium tablets. They are buffered so you don’t taste it. Also not a fan of heavy salt.
Thermotabs Each Buffered Salt Tab, Pack of 3 - this is what I get on Amazon. I take 2/daily. Helps keep me upright!
Soft cropped camis work well! Aerie makes some reallly soft camis but I've found good ones at Target/Forever 21 too. Parade has some comfortable bras/bralettes but I'd stick to the ones with wider bands and opt for larger size. Aerie is the only brand of underwear that my abdomen can tolerate so I would think their softer material bralettes would be good as well! Recently found this Calvin Klein bra that I was very very shocked by, I even like wearing it?! I've dreaded any form of pressure around my chest for 5+ years but this feels like a nice hug and is so comfortable even for all day wear. I'd probably opt for size larger on this as well. https://www.amazon.com/Calvin-Klein-Invisibles-Lightly-Bralette/dp/B08QVKKHLC/ref=mp_s_a_1_6?crid=3P73DD8WLNNMF&keywords=calvin%2Bklein%2Bsoft%2Bbra&qid=1648454571&sprefix=calvin%2Bklein%2Bsoft%2B%2Caps%2C123&sr=8-6&th=1&psc=1
Not sure how to add photos to show you what I mean, but I have a couple of my current pack I can send if you want.
My other suggestion is what I did prior to this which was that I had two monthly medication organisers, one for my morning meds and one for my afternoon and evening meds. It took me an entire weekend to fill and I’d often get things muddled as I was living on my own at the time so that’s why I ended up changing over.
The med boxes were from Amazon and were something like this though:
https://smile.amazon.co.uk/dp/B07Z8B1M81/ref=cm_sw_r_sms_api_i_9MVTER9644C90FRR3V4C
I have this problem. If my mind is unoccupied I will either focus on pain or on general anxious thoughts. I started listening to old TV shows or podcasts or audio books while falling asleep. If I focus on that my brain doesn't think about pain and anxiety and I fall asleep faster. Below is a link to the sleep headphones I like best. I find an eye mask helpful in sleeping even when the room is mostly dark. There is sometimes a learning curve getting used to sleeping with a mask if you haven't done it before.
Google podcasts is a good source for free stuff to listen to. In the US many public libraries have Overdrive, which allows you to borrow audio books.
Bluetooth Sleep Mask Sleep... https://www.amazon.com/dp/B09H2TBVY2?ref=ppx_pop_mob_ap_share
It’s very inexpensive and does a great job! Takes two triple a batteries. Dry or wet.
I have CFS and hypermobility in a few joints connected too (along with a lot of other comorbids)
It might be worth asking your GP if you can get a referral to the local Pain Team/ Moving Well Service - usually your local NHS trust will have a multidisciplinary team called something along these lines that will include physio, occupational therapy etc. They will not only be able to help you with your mobility aid needs, but also in other ways depending on resources available locally -I’ve had personal experience of two different NHS Trusts.
When I started using aids regularly in my 20’s they were the standard NHS metal crutches, not the comfiest or easiest or most stylish of items! My teenage niece decorated them with stickers (ones designed for bicycles so they applied well) to jazz them up for me. I’ve now got a pair of black crutches that are much more comfortable but mostly use one of my collection of HurryCanes https://smile.amazon.co.uk/dp/B00KGHLSMQ/ref=cm_sw_r_cp_api_glt_i_5AN7FYG18S0WPCS7T2WM walking sticks that have an “ankle” on them if the ground is uneven or I wobble which is a permanent state for me!
I grew up in chaos, so I learned how to keep a house from the website flylady .net.
It was especially useful when I got sick.
But ignore the “Anything in 15 minutes!” bit. I like to go by commercials, or clean when I’m in the room. A vacuum robot, and one of these really really help: OXO Good Grips Large Sweep Set with Extendable Broom https://www.amazon.com/dp/B00L9WK5P8/ref=cm_sw_r_cp_api_glt_i_3QVQDKAAGCDV19MN2E5F
So does buying a bunch of professional spray bottles, and keeping them w/ a roll of paper towels and a “magic sponge” in every room. That way, you don’t have to waste energy getting cleaning supplies when you need to clean.
Let's try this:
Homech Heating Pad for Back Pain and Cramps - XXX-Large [33 x 17 Inch] Ultra-Soft Heat Pad with Dry & Moist Heat Therapy, 6 Temperature Settings, Auto https://www.amazon.com/dp/B086ZMV3KN/ref=cm_sw_r_apanp_wizQwG8116bEe
Homech Heating Pad for Back Pain and Cramps - XXX-Large [33 x 17 Inch] Ultra-Soft Heat Pad with Dry & Moist Heat Therapy, 6 Temperature Settings, Auto https://www.amazon.com/dp/B086ZMV3KN/ref=cm_sw_r_apanp_wizQwG8116bEe
This book may be helpful to you... Doing Harm by Maya Dusenbery It's very well researched and contains countless examples of women being dismissed for their very real health concerns.
Second, I'm not sure what your other symptoms are, but pain with eating that's been ruled out by everything else, could be superior mesenteric artery syndrome or median arcuate ligament syndrome.
here you go! They sell larger quantities too but here's the smallest. It's a good deal plus they're reusable. Hope you get answers!
Ginger chews. They give these to chemo patients.
Chimes' Ginger Chews - Variety Pack - Original, Mango, and Orange (Pack Of 6) https://www.amazon.com/dp/B07DWF9HBR/ref=cm_sw_r_apan_glt_i_PJ9BVKAY3TNQTNVRX2R8
This is a side walker. They fold fairly flat which is nice. I wouldn’t use it as an actual walker, but I honestly find mine a great help if I know I have to be on the floor, getting up is very difficult. Also comes in handy if I need to be at the stove, instead of trying to lean on the counter, there’s something more stable I can lean on. https://www.amazon.com/Drive-Medical-Style-Walker-Chrome/dp/B002VWK064/ref=pd_vtp_1/146-5438956-1116542?pd_rd_w=96Qaf&pf_rd_p=96226b5f-2d9a-439b-be45-97603787c682&pf_rd_r=0M36W2XZAGQXSK8931B6&pd_rd_r=ec6de7e2-8c54-4922-9d68-aedb028b9d1...
By the way, my partner has endometriosis and we are having our first child. We did a protocol ( I’m a practicing herbalist ) out of a book called " American herbalism " published in the 70s. It is by Selena heron - she’s the herbalist who devised the protocol. We bought this book https://www.amazon.com/American-Herbalism-Essays-Members-Herbalist/dp/0895945401 though it’s out of print and limited copies exist. It changed her life and we just got pregnant - something that wasn’t even possible before. I have lymes disease and with her endo we use lots of herbs. can be such a devastating disease I hope your managing well
wyze watch
https://www.amazon.com/WYZE-Aluminum-Smartwatch-Waterproof-Menstrual/dp/B0983VR4TD
I have a fitbit and my mom has a wyze, I should have gotten a wyze.
I've had this for about a year - wedge pillow. It works great for sleeping at an incline on your back, but there are times that I need to be more upright. I have no trouble sleeping sitting up, but like you have had trouble figuring out the best way to support myself. So I just bought one of these - pregnancy pillow. I'm still sorting out the best way to use it, but so far folding the arms in half seems to be necessary because other wise they're too low. I also think I'm going to have to secure the halves with a string to keep them folded throughout the night, because they don't stay in place and I inevitably end up tipping over. The other issue so far seems to be temperature. I am a very warm sleeper to begin with, so being sandwiched into a u-shaped velvet covered pillow is not always great. My lower half gets quite toasty some nights. For neck support I've just been putting my regular pillow on top of the back part of the pregnancy pillow and it seems to do the trick.
I use these: Clear - morning meds; Black - night meds
I have more morning pills than night pills, and each compartment is currently holding 2 large, 4 medium and 14 small. That's only around halfway full. I could easily fit in 2-3 additional large supplements if I wanted. Also, I like these ones because the bottom comes off for easy loading.
this is the one I use: https://www.amazon.com/AUVON-iMedassist-Moisture-Proof-Compartments-Supplements/dp/B074MC6HJR?pd_rd_w=3ei0N&pf_rd_p=fa602f5a-9bb2-4470-9137-ba5fba954279&pf_rd_r=2FJ6GA3A0N6QCYRFXY7E&pd_rd_r=c5c1de62-fae1-4e70-93d1-093e99072960&pd_r... I realize it only has four but maybe it’ll recommend some similar
I’m US-based, so not sure if this will help, but I have a 4 x daily one from Walgreens that I love - it’s colorful too, so almost makes me excited to take my pills. Haha! It was only about $10. You could get something like that plus a basic 1x daily box for the 5th dose. Or, I found something like this via Google - it’s pricey, but also looks quite nice: e-Pill 5 Times a Day x 7 Day Large Weekly Pill Organizer - with Discreet Case https://www.amazon.com/dp/B082BFKNTR/ref=cm_sw_r_cp_api_glt_i_9RN6S22F1GHJ5KTPPSBV
Have this happen all the time, i have elhers danlos syndrome and vocal dystonia i constantly dislocate my larynx and my oesophagus protrudes because all my ligaments and smooth muscles everything that has collagen in it is so stretchy constantly moves itself out of place as to where it belongs so your not alone on this, i often have to wear a full neck brace that has adjustable traction which i find helps with this issue, i think the brand was on amazon this is the link for anyone who is interested, find it helps a lot with this issue Cervical Collar, Household Dynamic Fixation Decompression Neck Support Brace Pain Relief Multi Directional Traction with Back Support Pad for Home for Driving https://www.amazon.com.au/dp/B09P5PQ3D4/ref=cm_sw_r_cp_api_glt_i_2BMBP5HABQRXV24KGQY3
I bought this Kenmore stick vacuum and absolutely love it! It’s inexpensive, lightweight, and works well. I have 2 long-haired dogs and 3 cats and it’s the only way to keep up with them.
The only downside is that the canister is small and I have to empty it often, but it’s worth it to make it so easy to handle.
Kenmore DS4020 Cordless Stick Vacuum Lightweight Vacuum Cleaner 2-Speed Power Suction LED Headlight 2-in-1 Handheld Vacuum for Hardwood Floor, Carpet & Dog Hair https://www.amazon.com/dp/B08QR5W3HJ/ref=cm_sw_r_cp_api_glt_fabc_21DTPCP59HJZ2RJC73P5?_encoding=UTF8&psc=1
My pain management doctor actually recommended me to a CBT program that did individual, group, and physical therapy, it was amazing. It only lasted 6 weeks though.
The group sessions were focused around this workbook: https://www.amazon.com/Managing-Chronic-Pain-Cognitive-Behavioral-Treatments/dp/0195329171
I don't know if this kind of program is common, but it might be worth looking into!
I
It has been a long time since I read it, but, if I recall correctly, there's an amazing list of hundreds of potentially enjoyable activities/hobbies in the middle of a book called Control Your Depression by Peter Lewinsohn.
I'm not saying you're depressed; I'm just saying it's a super-comprehensive catalog of things people have reported they like doing, so it might be worth taking a look at those pages in particular.
Long cardigans with pockets are my life line! A lot of places have begun to sell them, so you have flexibility on where you want to get them from, but my favorite are from an amazon seller. They are so soft, look so nice, and the color options are wonderful. A tunic-length bright color cardigan paired with black leggings and a loose shirt is my uniform. It also makes a cozy outfit instantly cozier, and also a bit cuter/more appropriate for being in front of other humans on long doctor visit days. And the pockets fit my phone and wallet/chapstick/facemask perfectly. Here's one of various listings if you're interested
As for bottoms, I prioritize items that are easy on my mid section. Some days I need looser joggers/pjs, some days I can do the athletic leggings with side pockets. Pockets are a huge necessity, which is why if I can't comfortably wear pants with them, the cardigan saves the day.
I've been using one of these for years for migraines. The gentle weight and pressure, along with the blackout aspect, helps immensely.
Why not use something like this backpacking ground cover that's sturdy and reusable and can cover a bench back and seat or cover enough ground for your behind and legs both. Just a thought. This looks durable enough to handle being stuffed in your backpack, rolling tote, or whatever.
My daughter carries a folding camp stool.
If you Google "sit-upon" you'll find a bunch of different diy versions. Girl Scouts traditionally make them for camping trips. They're not usually foldable but maybe it'll give you some inspiration.
Yes, migraines are not only head-related. Maybe google some info on menses and migraines and try the cold shower thing - even if it’s only on that scull area - cold-hot-cold etc. But also, you coyld do the same on your lower abdomen: cold-hot-cold several times during menses / migraine… it can help kind of numb the area. It can be helpful with just gut pain and muscle pain too.
If you do a whole body shower, you can always start it normal temp and end it cold for a minute or two. Your body will build up tolerance to it over time. And you’ll probably notice you feel more focused and energized afterwards, even if only briefly. It can be a good time to get productive things done.
The naturopath is a guy in Australia. I live in Australia. He was a friend of a friend I met on Christmas Eve. I only know that his first name is Martin and he lives in Mooloolaba, Australia.
I did a little quick search and found a cold cap for migraines on Amazon:
https://www.amazon.com.au/Headache-Migraine-Relief-Cap-comfortable/dp/B07DG2Z1NH
Seems to have good reviews and I guess it’s a similar concept to what the naturopath was telling me.
In general, if it’s affordable, I’d recommend looking for a naturopath you could work with. Research them and ask if they understand the health symptoms you experience (especially yhe migraines bit)… but if not, just google naturopathic information online.
I have learned a lot from my own naturopath, although I feel like she let me down in other ways. Just as GPs have. I mainly find a lot of information from internet searches and health summits (online interview series with holistic and alternative and medical health professionals about gut health, immune health, supplements etc.)
I’m glad some of what I shared feels useful to you. I hope you experience some benefit from the information, and/or can take it to your own health team for them to support you further. 🙂
I used to have the same problem. Get a night splint (or two). They are very cushy and have a little pillow in the palm area. My doctor recommended to me and it was instant relief. Available at Walgreens/cvs - usually about $20 from what I remember.
ACE - 209626 Night Wrist Sleep Support, Helps relieve symptoms of Carpal Tunnel Syndrome, https://www.amazon.com/dp/B005YU8TMC/ref=cm_sw_r_cp_api_glt_fabc_YFDJKECMGCDQKHTABJN7?_encoding=UTF8&psc=1
When my spinal discs are really out of whack, the only thing that works for me is elevating my legs with a pillow like this. It's what my orthopedist recommended and he was right.
Please don't feel bad about this. I cannot bathe myself at all because I cannot bend to reach my nether regions (spinal cancer) so I use the bidet to rinse myself every time I pee or poop, I wash my top half with soap and a washcloth at the sink sitting on my folding stool on the days I can manage that and use baby wipes on the days I can't manage the full sink routine. About once a week, my husband does a full wipe off with soap and a washcloth of everything from neck to feet. Maybe once a month or so I actually get into the shower but it is such an ordeal for me to stand up long enough to wash and rinse the nether regions while trying not to slip and fall (even with a bath mat in the tub) that I just cannot manage it more often. My hair is almost waist length at this point and since I can't shower that often and it is hard for me to sit up that long anyway to wash my body and hair, we have a system to wash my hair in bed. It works really good and it is almost like going to a salon and getting it washed. Something that has been HUGE for me to be able to deal with not washing my hair very often is that it gets put up in a bun and I leave it up 24/7. It isn't ideal but hair being down and touched all the time makes it even more greasy and dry shampoo makes my scalp scaly/crusty if I leave it in for too long. A lot of them makes my head itch after 2-3 days but I tried the Suave Keratin Dry Shampoo and it works good, doesn't stink or have an overpowering scent and it doesn't make my head itch.
And so, yes, we live in this surreal realm: in the world, yet we don't fully belong to it. a Strange Land, each on our own Reluctant Pilgrimage. Where others meet in pubs, on the sports field, in the park or in a coffee shop, we meet here, where shared words on a screen unlock this otherworldly realm: a vast plain that separates what we want from what we can. And yet, it is on that plain where we can each develop our as yet hidden strengths and abilities. Just as a blind person will develop supreme hearing and sentient fingers that can read, we too, can find and strengthen hitherto unknown abilities. Sometimes the greatest freedom emerges from confinement.
I'm so sorry to hear this, I'm sure this was a difficult decision for her. There are many free online counselling services available that you should definitely look into for support (7cups is one that comes to mind), if you can afford to see a therapist I'd highly recommend that, even just to be able to check in with someone every week can be a huge help. Make sure you reach out to people either irl or in online communities. I hope it's some comfort to know that this is what she wants and will be able to be at peace. You are always welcome here if you need anything xx
This kind. Ziraki Large Plush Shredded Foam Reading and TV Relax Pillow - Perfect for Adults, Teens, and Kids - for Bed Rest, Arm, Back, Pregnancy Lumbar & Head Neck Coccyx Lower Back Support Cushion https://www.amazon.com/dp/B01MZE0N03/ref=cm_sw_r_cp_api_glt_fabc_T06BPEH2Q3674P0YHXG5
Using one now! It is a thick, red rubber one.
HomeTop Premium Classic Rubber Hot Water Bottle, Great for Pain Relief, Hot and Cold Therapy (2 Liters, Red) https://www.amazon.com/dp/B00K3NZUPY/ref=cm_sw_r_apan_glt_fabc_2QP64C0Y6Q3ZK13HDV94
Used it at the hospital with pancreatitis, stays hot for hours.
If she likes to read, I'd recommend a Kindle Oasis. They're pricey, but having a nice light device to hold on to vs holding a heavy book has been a game-changer for me.
This one in particular also has a warm light setting that is yellowish, so it's easy on my eyes (I have RA, fibromyalgia, and chronic migraine). It also has the usual white light that automatically changes with the brightness of light in the room.
Herbal teas work for some: fennel, chamomile, pepperpint. Not everyone of these teas suit everyone, but you can try them out and see if one of them makes you feel better.
The other thing that I could think of is learning the method described in this book to deal with your symptoms. It was written by a woman who had immense pain after severe spinal injury and who too thought, she won't be able to take it much longer, thinking she won't last the night (in hospital): https://www.amazon.co.uk/Mindfulness-Health-practical-relieving-restoring-ebook/dp/B00BU1DH30/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1637059730&sr=8-1
Hello! Fellow POTS and chronic pain sufferer here.
I would find out if she already has a lot of these things. She likely already takes things to help her with POTS or has things like compression socks (and they just don’t make you feel sexy either) so I would go for something that will make her feel a bit more luxurious/like a queen on those really tough days. Things like a silk pillowcase, nice set of really comfortable Pajamas (I have bamboo ones and they make me feel great), some nice headphones so she can listen to music in bed in the mornings. Us with POTS cannot get out of bed fast so often have to slowly wake up.
One of the gifts my husband got me recently was a foot massage machine. It’s so so nice on days when I have to spend a lot of time sitting on the couch as I can just plug it in and get a nice relaxing foot massage. It’s also one of the only places on my body where I don’t have pain but do benefit from a rub. This is the exact one. Often people with POTS have increased calf pain from the poor blood circulation and blood pooling in our legs so it was actually a perfect gift for this condition and made me feel like a million bucks.
Some other things that are really nice that I have bought for myself were a massage gun and a Tens machine. Both of these have been extremely helpful! Only problem with the massage gun is that on days where things are difficult it becomes a bit of a chore to use it. I don’t have Trig so can’t comment on that one unfortunately.
I LOVE the bed-desk my wife got me
I have trigeminal neuralgia and a stuffed animal meant to be heated up that's super squish is AMAZING to get because you can heat, cuddle snuggle, and lay the side of your face on it to make the pain stop. https://www.amazon.com/Avocado-Microwavable-Heating-Pad-Heatable/dp/B08WC63FNH/ref=sr_1_51?crid=CJ54H68UEOZC&keywords=heat+up+stuffed+animals&qid=1637016992&qsid=131-2049346-7496734&sprefix=heatup+stuffe%2Caps%2C179&sr=8-51&sres=B000N7Z9JC%2CB08B44TWY2%2CB083Q1JCNP%2CB083PZQX2V%2CB001RTGC9G%2CB000V1ZDJ6%2CB07DPW538M%2CB07F44KNTR%2CB07D9ZKMTP%2CB07GT8PWLS%2CB07VTXCTVC%2CB07MXQ5Q2N%2CB002WILK7A%2CB07MXWTGMM%2CB07WJVB29P%2CB07MXWRH3V%2CB07MXW4GMS%2CB004AP8DT6%2CB07GT9KF76%2CB00202CITM that one works awesomely as a pillow when the pains bad
I have this and I love it!
Giantex Rolling Storage Cart w/ 4... https://www.amazon.com/dp/B08BJZX569?ref=ppx_pop_mob_ap_share
I love that there are drawers for anything I don't want the world to see, or even just to keep my meds out of view so I get a break from them. The shelves are sturdy and you could even hang cup holders or other storage pieces on the handles. It's on wheels, so I can have it next to my couch or my chair, and I can even put it against the wall if people are coming over (ha). It was also really easy to put together. Highly recommended!
Aye that's good. I'd definitely chase up on the medications, supposing that healthcare in Canada isn't similar to the expensive nightmare that is the US' healthcare system.
Anywho, the links.
en.metal-tracker.com - Great site that has pretty much the entire discography of every metal band ever. FLAC's are abundant, I'd even say that there's more FLAC than MP3 rips on there.
www.cgpeers.com - THE tracker for torrenting 3D programs, plugins, and resources. To get in it, check on the 1st or 15th of every month, as that's when they allow people to create accounts. Want the latest Substance Designer? They've got it. Want some ancient version of 3DS Max? They've got it.
gen.lib.rus.ec - This is where everyone gets PDFs of books and articles from. Has everything ever published, or at least 99%.
https://nyaa.si/ - Hosts a bunch of anime and manga, with plenty of HD releases.
rutracker.net - Last of the big public torrent sites. They've got plenty of everything; games, programs, music, movies, all that. Has a great collection of GOG games (GOG doesn't have any DRM on games released on their platform, so no need to crack).
cs.rin.ru - A forum dedicated to sharing cracked games, and circumventing DRM. Focuses primarily on games released on Steam.
I'm not sure the exact model as I got it as a gift but this one is very similar! https://www.amazon.com/Yoga-Acupressure-Mat-Pillow-Set/dp/B08FR8MPCW/ref=mp_s_a_1_5?crid=1M2PHJHY0XFYZ&keywords=accupressure+body+mat&qid=1636361168&qsid=138-9257741-6513711&sprefix=accupressure&sr=8-5&sres=B00I1QCPIK%2CB07... I am not sure how to describe the relief....I tend to have a lot of body tension/muscle pain and the points on this aid to relieve that. You have to work your way up to using it for 15 minutes but I'd say best way I could describe it is "it hurts so good" it's not necessarily painful though. I haven't had acupuncture but I'd say they work similarly...concentrated pressure on muscles allows them to relax. I even use this on my head/neck/face when I have really bad tension headaches. The relief is lasting too, I feel much "looser" in my muscles afterwards.
Evolution Trillium Lightweight Medical Walker Rollator with Seat, Large Wheels, Brakes, Backrest, Basket for Seniors Indoor Outdoor use (Regular, Pink) https://www.amazon.com/dp/B0795BSXRH/ref=cm_sw_r_cp_api_glt_fabc_1TXBH424BC7QEYQRF6VR?_encoding=UTF8&psc=1 I’m 5’9” and wish I’d gotten the tall one.
100000% this pill bottle holder. I can actually see how many extra bottles I have, what I’m running low on, know where it all is instead of rolling around
Med Manager XL Medicine Organizer and Pill Case, Holds (25) Pill Bottles - (17) Standard Size and (8) Large Bottles, Purple, 13 inches x 13 inches x 4.5 inches https://www.amazon.com/dp/B07LH9GR62/ref=cm_sw_r_awdo_navT_a_936KCFXXFMPMRMGT7461
Sure! I don’t know what the name would be but here’s a linklink to pretty much the same one that I have
TENS unit, reading pillow, body pillow, an acupressure mat, electric toothbrush (doesn't hurt my hands as much as manual brushing) a bed table/desk for flare days, bathtub pillow, heating pad that goes around neck! https://www.amazon.com/Sunbeam-Extra-Large-Micromink-Shoulder-Settings/dp/B00LX5CR0M/ref=mp_s_a_1_5?crid=3AU5NP4MATK5E&keywords=shoulder+heating+pads&qid=1636183653&qsid=138-9257741-6513711&rdc=1&sprefix=shoulder+he&sr=8-5&... I find sunbeam heating pads to get the hottest and last the longest...every other brand I've tried lasts a year or less of daily use but my sunbeams have lasted 3-4 years of daily use!
I’m not really into gaming - never grew up with it so never really got into it. I haven’t found a crafting group, but I found a little hobby (literally, it’s putting together little kits like these but that doesn’t really help the loneliness and getting out of the house problem. There was a group of parents of young adults with Spina Bifida that got together when I lived in Maryland. Sometimes the young adults would show up and just chat but, honestly, I wasn’t very accepted into the group and when I did ask the one person I was friends with once why, he said it was because (at the time) I wasn’t in a wheelchair and everyone else was. Now that I live in Houston, there’s probably support groups but they are probably an hour away (Houston is massive). My mom is retired now, but when she worked there was a call center at her work that I could have worked in if she had not been a part of the legal department of the company. Crazy, right? Even her boss’s boss (who knew me because my mom had been there since I was 3) tried to get me in and it didn’t happen.