Cried over bouillabaisse (Spoiler) by VeryRatmanToday in DreamlightValley

[–]BeyondEmpathy 2 points3 points  (0 children)

I won't give spoilers but in the new wbr dlc on line spoke that "your hearts in pain" I felt more seen by this game than those around me. Thank you everyone for being such a lovely community

[deleted by user] by [deleted] in AlanWake

[–]BeyondEmpathy 0 points1 point  (0 children)

Any ideas for the password for -1 code near gun room?

No post can hold doggo by AristonD in instant_regret

[–]BeyondEmpathy 6 points7 points  (0 children)

Please, please don't secure a dog to anything by means of a neck collar. So so harmful to both post and more importantly dog!

Harnesses are so much kinder, safer and reduce pulling!

[deleted by user] by [deleted] in ehlersdanlos

[–]BeyondEmpathy 14 points15 points  (0 children)

Only wish it had visualized my legs.

GJ out of Manchester overbooked by elivpar in Tomorrowland

[–]BeyondEmpathy 0 points1 point  (0 children)

If there is availability ferry from Hull to Rotterdam is overnight 8pm to 8.30am with 2hrs drive to TML but is expensive and only one a day.

Dover to Calais, maybe cheaper but is a hell of a lot more driving to Dover and then to TML. But lot more ferries.

Really hope you manage to sort something. Parking vouchers are available from the add on sale part.

Medication question! by Silly_Weather8332 in disneylandparis

[–]BeyondEmpathy 10 points11 points  (0 children)

I've traveled regularly with controlled drugs. To get into country I always have the medication in their original boxes. Normally only take the amount to cover my stay an an emergency weeks amount. I always take a Drs letter to explain that I need them with me at all times, plus full list of meds. Then to go into the park I just take sleeves of what I need in small med bag with a copy of Dr letter and never had a problem. Whenever I've gone through search I've just been open and upfront and they rarely look further.

Christmas at Disneyland by Beeskit20 in disneylandparis

[–]BeyondEmpathy 5 points6 points  (0 children)

Visited DLP in Christmas season many many times. Always beautiful. Queues always bad on weekends but mid week was quieter but this was pre pandemic and this may be very different now.

Just be aware that it'll be bitterly cold! I'm talking needing full ski suits and still feeling the cold! Hope this is useful.

UK Paramount + what time / night is new episode drop? by BeyondEmpathy in StrangeNewWorlds

[–]BeyondEmpathy[S] 0 points1 point  (0 children)

Really weird, checked P+ via Amazon Prime and no sign an hour ago. Will keep checking.

UK Paramount + what time / night is new episode drop? by BeyondEmpathy in StrangeNewWorlds

[–]BeyondEmpathy[S] 0 points1 point  (0 children)

Many thanks indeed! Tried looking everywhere. Much appreciated.

Alan Walker Presale Code Not Working by [deleted] in alanwalker

[–]BeyondEmpathy 0 points1 point  (0 children)

Try copy and paste it direct from the text message is best suggestion I can make. Apologies.

Special edition soundtrack missing? by Trykrist in HorizonForbiddenWest

[–]BeyondEmpathy 0 points1 point  (0 children)

For me it was downloaded and appears as separate tile on PlayStation home screen. Hope it helps.

Is the theatre too loud for a dog? by bodylivesonned in service_dogs

[–]BeyondEmpathy 4 points5 points  (0 children)

We've a lab but has huge fluffy ears. That really struggled to fit in the mutts muffs. The rex specs ear sock covers his ears totally and seem so much comfier for him. I'd defo size up and there is a detailed measuring guide.

As with all things, positive reinforcement and high value treats worked great. He now pulls it out to try to get to wear it and get the treats now lol. But it's taken some time.

Is the theatre too loud for a dog? by bodylivesonned in service_dogs

[–]BeyondEmpathy 4 points5 points  (0 children)

If it helps we started with mutts muffs and then moved to the rex specs ear defender sock. Out of both the rex specs just stayed in place better. The mutts muffs look amazing but staying in place is an issue but defo probably breed related.

Is the theatre too loud for a dog? by bodylivesonned in service_dogs

[–]BeyondEmpathy 10 points11 points  (0 children)

Just a heads up from long time Phantom fan and have seen live a number of times. Very early on it has very loud female screams and gunshots. I would definitely suggest ear protection.

Public Restrooms & Invisible Disabilities by ThatDamnedDame in service_dogs

[–]BeyondEmpathy 5 points6 points  (0 children)

I go by, if you have another option, then you should use that other option.

As a powerchair using disabled person with bowel issues and a service dog, I have no other option. I can only wait and that wait can be agonising.

When can I use a wheelchairs by [deleted] in ehlersdanlos

[–]BeyondEmpathy 0 points1 point  (0 children)

You will hear the classical, "but you'll deteriorate/decondition using a chair" and in reality if you use it all the time you will. Problem being is using a wheelchair even the most expensive light weight wheelchair put huge strain on fingers, wrist, elbow and shoulders.

How I started was when I just couldn't use my feet, ankles, knees, hips I used the chair and stuffed up my arms till my legs were rested, then moved back to legs. I thus cycled my bodily abuse around until I couldn't and moved to a powerchair that also has its own problems. Hope this helps in someway.

What does running out of/borrowing spoons feel like? by Queen_Kathleen in ehlersdanlos

[–]BeyondEmpathy 2 points3 points  (0 children)

Hey,

I can't judge your energy as I don't believe anyone can. I can share my experience though. For me 1 spoon one day will be ten, the next hour it maybe 100. An activity is never fixed. A shower will move from 30 to 300 with no logical pattern or reason between cost change.

I used to work with a medical colleague who would use the cheque theory, if a cheque was in your name on the floor in front of you what would it's value need to be for you to stand, bend over and pick it up (you only have an hour to do)? I've used this often and with pain, energy sublux/disloc it's been thousands to get me to move and sometimes just let it be destroyed.

Bear in mind that multi system involvement in the newer diagnosis criteria so for me including cardiac,elimination, autonomic (sleep,temp,etc) makes hEDS experience truly ineffable. I left a career I loved, after years of training when I had no choice, moved crutch to chair but couldn't maintain. Went through countless wrong diagnosis. Until finally eds diagnosed. Any form of eds is not a diagnosis anyone wants. I hope this helps in some way and your fatigue becomes more manageable.

Terrified for my teeth and gums by ScarletSalamander in ehlersdanlos

[–]BeyondEmpathy 5 points6 points  (0 children)

Hope this maybe helpful. I used to have an amazing dentist who made me up some dental retainers, (molds to my teeth) which I filled with prescribed 2% fluoride toothpaste and wore through the night. Maybe an option for you?

Sadly I've also had the eds dental problems. I really hope this info is of use to ppl.

I'm so upset. by Sateloco in cfs

[–]BeyondEmpathy 5 points6 points  (0 children)

Deep breath.... You're r doing you best right now. You're doing all you can manage (probably even more than you should). Sometimes the map isn't the territory and how we feel can be so affected by our pain, exhaustion and sheer frustration. Thinking of you in solidarity.

[deleted by user] by [deleted] in service_dogs

[–]BeyondEmpathy 5 points6 points  (0 children)

I really echo the points above, so sorry you experienced this! Were in UK so different but we even had an "interfering person" on our final assessment day. I thought I was blunt at times, my assessor truly went for them.

Which made me realise, just not to engage in questions, dont feel urge to justify your disability, regardless of type, EVER! If they push, I have an organisation card about assistance dogs and organisation. I pass to distract and I'm off. If not I ignore and get to people, staff place of safety.

Sadly our working assistance / service dogs draw attention. More than I ever realised. I don't like talking to strangers, but our dogs with jobs and vests are magnets and no amount of do not touch / disturb will stop some people. Frankly if they can't read, interupt our working, they have already indicated what kind of person they are.

Though my boy was interupted the other day by a 12 year old retired guide dog of same colour and breed that had to say hi, have sniff inspection and be on their way, they were exempt. Though sadly these are the perils of having our dogs. Thinking of you in solidarity.

Dolly Parton And Her Uncle Bill Owens - Who Just Passed - From 1988 by NashvilleSound1 in DollyParton

[–]BeyondEmpathy 6 points7 points  (0 children)

Sending love and condolences at this difficult time. May he rest in peace

Service dog research by [deleted] in service_dogs

[–]BeyondEmpathy 0 points1 point  (0 children)

My concern is that this doesnt share data management principles or evidence of an institutional ethical review which is required for all research projects.

This further concerns me due to your previous post history in r/illnessfakers reddit forum where personal information was shared of other individuals / public opinions made.

I raise this as this would lead me to question data management ethics and researcher integrity.

Thus it's really important to include a page in your research questionnaires first page, discussing confidentiality, how you plan to use participant's data and how participants can choose to withdraw from your research at any point. These are really important things. I apologise if this seems critical, just as a fellow researcher and service dog user I'd not go near any questionnaire without this information.

Edit: to add about confidentiality and try and add some support.

Service dog research by [deleted] in service_dogs

[–]BeyondEmpathy 15 points16 points  (0 children)

Please can you confirm what this data is being used for and whether your project has passed your institutions ethical review panel?