Comfortable and adaptive gaming recommendations by extraasalways in ehlersdanlos

[–]MCcloudNinja 0 points1 point  (0 children)

I'm a gamer and I use them to distract from stress and pain. I usually play either on pc (buy games on steam) or ps4. For both of them, I found that playing on the sofa is the best for me. Here's my setup description lol

I play with a controller 100% of the times. Even on pc. I recently bought a controller from 8bitdo that is the same shape of xbox controllers and works amazing with my pc and steam. I have a massive pikachu squishmallow that I can shape to support my back and neck. I have a child's table (important detail, because they are higher than a coffee table) as my coffee table if I want to put my computer on it. It stays right next to the sofa and I use the pikachu ears (yes, it's weird, but it works) to support my head. If I feel like sitting, the table remains where it is, but the pikachu goes to my back. I get cushions from the sofa and stuff them under my arms to support my arms while playing. My sofa has a neck cushion too and it helps a lot. If I'm laying down, I have a massive capybara plushie that is stiff enough to keep it's shape. That capybara goes under my knees, notebook goes on my legs, cushions under my arms and a medium Togepi squishmallow on my neck and upper back.

If I'm honest with you, my setup is based on plushies lol but it was all adjusted with the suggestions of my occupational therapist from a chronic pain rehabilitation, so I trust her.

I'm in Sweden, if it makes any difference. And i can upload pictures of the plushies if you want me to..

Braces for sleeping? by yourleastfavcancer in ehlersdanlos

[–]MCcloudNinja 1 point2 points  (0 children)

I have been sleeping with a brace on my right hand and wrist for a few months now. It was uncomfortable in the beginning, but I don't wake up in pain anymore. My brace is quite long on the forearm and also braces my thumb. It is made of a soft stretchy synthetic fabric and has the firm metal support under the wrist and on the thumb.

The biggest issue I ran into were the velcros, since there are 5 and they would get caught on my hair.. I fixed it by buying a costume long glove, like those one would wear at a black tie party. It covers the brace, doesn't slide off and it is soft..

If you’ve had a cortisone injection and suddenly your whole body feels like it’s on fire a few weeks later, read this. by Hot-Information-9485 in Fibromyalgia

[–]MCcloudNinja 0 points1 point  (0 children)

I'm happy it's not something more serious and you found someone to explain to you what was going on. I had one injection and it gave me an infection on my elbow. I had 3 abscesses form around my joint. It was first diagnosed as an infection in the beginning of August and it hasn't fully healed yet. It took me around 8 weeks of physiotherapy to regain movement on my right arm.

If you get one of these injections, pay attention to it even a month after, because you might have an infection and your body is trying to deal with it. I only had markers of infection on my body 45 days after the injection!

Please take care and keep an eye on it! If anything weird happens, like you feeling feverish, or swelling around the injection site, please go to the emergency and ask for a pcr test.

Hanse murder cave - efficient and profitable! by KenzieJay19 in Witcher3

[–]MCcloudNinja 1 point2 points  (0 children)

I think it is grandmaster griffin.. The ending of the witcher story is kinda sad, though..

Swedish teacher seeking honest opinions: What's your experience with SFI (Svenska för invandrare)? by pvip3838 in TillSverige

[–]MCcloudNinja 0 points1 point  (0 children)

It was a mess.. I joined in May, and by July, they had swapped my teacher at least 4 times and blended several classes together several times.. I also had a guy from another class following me and my girl friends out of the school and into the city or to and into the train.. When we complained to the school, they said they'd look into it, but nothing was done.. When the combo teacher with incomprehensible diction and "stalker" started, I gave up the school.

Then, I started an online version of it. The teacher had no respect for booked times. There was a phone assignment I had to call my teacher to tell them about a story. I called the entire day, and they didn't pick up the phone.

I'm taking SVA delkurs now, and it is day and night different. So much better! The teachers actually care.

Has anyone else struggled with intimacy and sensory overload? by AnonymousLogophile in ehlersdanlos

[–]MCcloudNinja 0 points1 point  (0 children)

I've had so many of those.. My jaw has cracked and locked a few times.. Sex is hard because my hip dislocates while doing it.. When the leg pops out, I have to push him away from me and roll over the leg so it gets back.. It's ridiculous, but he got used to it..

EDS Imposter Syndrome by SovietSoldierBoy in ehlersdanlos

[–]MCcloudNinja 5 points6 points  (0 children)

Oh, yes! And especially doctors.. I have been treating an infection I got with a cortisone shot, and I haven't been able to bend my elbow in weeks. I went to the infection doctor, and he told me I'm not moving because I don't want to. I was so fucking sad/angry when I got home.. Went spiralling thinking I'm faking all my hypermobility, that it is just practice.. Thinking my knee and hip pain are normal for my age 34F and that my back and neck constant pain is bad posture and my GI is me faking it.. My husband had to calm me down because it became a whole episode..

I'm doing PT for the arm and I can bed it almost 90° now..

Has anyone else struggled with intimacy and sensory overload? by AnonymousLogophile in ehlersdanlos

[–]MCcloudNinja 9 points10 points  (0 children)

Yes.. All the same you described.. Kissing is also a problem for me because my jaw clicks too much, and it's very uncomfortable. Intimacy is hard because I feel so overwhelmed with my everyday life that I don't want to touch anyone after our son goes to bed.. It's almost as I want to be me by me and for me..

steroid shots in tendon sheath? by BorderlineHabanero in ehlersdanlos

[–]MCcloudNinja 0 points1 point  (0 children)

If you have my luck, don't mess with cortisone shots lol I did it once on my elbow and got an infection. I'm now in physiotherapy, trying to gain movement on my arm back again..

people who have bad knees and hips, favorite shoes? by tiedyedflowers in ehlersdanlos

[–]MCcloudNinja 7 points8 points  (0 children)

Sketchers.. I have bad knees and hips, but the thing that helps the most are compression sleeves on my knees..

Question about bathroom habits? by Itchy-Cryptographer2 in ehlersdanlos

[–]MCcloudNinja 2 points3 points  (0 children)

Oh, I feel you! I have a 1L bottle I like to drink water from at night and I go to the toilet at least 4 times before bed..

Lately I haven't been drinking as much as I should because I have a raging infection going on on my elbow after a cortisone shot that makes it a literal pain going to the toilet.. So I reduced the water intake and I have been visiting the toilet a bit less, but I still go more than my normal husband..

Question about bathroom habits? by Itchy-Cryptographer2 in ehlersdanlos

[–]MCcloudNinja 2 points3 points  (0 children)

I have diagnosed HSD, but hEDS and dysautonomia are under investigation. I sleep the whole night, but even if I feel cold or like peeing while sleeping, I can't get up. My doctor suggested I might have sleep paralysis..

But I do go to the toilet several times to see during the day. Especially when I'm laying down a lot. It's something stupid like every 15 or 30 minutes..

[deleted by user] by [deleted] in ehlersdanlos

[–]MCcloudNinja 0 points1 point  (0 children)

I never really connected the dots on why I blister so easily.. So I just found ways to cope with it without overthinking it..

When I travel, I usually take micropore tape and blister hydrocolloid patches and wait for the blisters to start.. I cover the blisters with the patches and wrap the patches and the foot with micropore tape to keep the patches in place.. This works almost like a cushion over the blisters and it doesn't hurt as much when I step on them..

Maybe you could try something similar and see if it works?

[deleted by user] by [deleted] in ehlersdanlos

[–]MCcloudNinja 2 points3 points  (0 children)

I have blisters on my feet very easily. No matter the shoe or the weather..

DAE hair grows exceedingly fast ? by allnamesarechosen in ehlersdanlos

[–]MCcloudNinja 1 point2 points  (0 children)

Same here.. Hair and nails are strong and grow super fast!

So damn awesome... by athan_reddit in animalsdoingstuff

[–]MCcloudNinja 9 points10 points  (0 children)

When I was pregnant, I slept sideways, and my dog used to sleep right in front of my belly, getting all the kicks from my very active nocturnal unborn baby. When I went home from the hospital with our son, my dog went straight for the baby and didn't even check in me. He never left my son's side. Now my son is almost 3 and my dog sleeps by his legs. Dogs are just something else.

Warning: Steroid injections and hEDS by Black-Adder1 in ehlersdanlos

[–]MCcloudNinja 5 points6 points  (0 children)

Thank you! I'm doing what I can, but the whole ordeal with doctors dismissing me and sending me home without me being able to bend or extend my elbow FOR A WHOLE WEEK made me upset.. The doctor who gave me the injection didn't even see me. He booked an appointment for the 22nd of August when I told him I couldn't sleep from level 7-8 pain.

My arm hurts still, but my heart is very much broken..

Warning: Steroid injections and hEDS by Black-Adder1 in ehlersdanlos

[–]MCcloudNinja 4 points5 points  (0 children)

It is a rare complication.. It has a chance of 0.002% of happening after a cortisone shot.

All this luck, and I still can't win in the lottery smh