u/Aggravating_Return49

Ich bin noch nicht lange Rollstuhlfahrer und checks nicht wie es funktioniert bei der ÖBB. Bei der DB muss ich jede Reise normal buchen, bei Fernverkehr mit Reservierung für Rolli und danach bei der Mobilitätszentrale anmelden. Klappte bisher gut.

Ich will im November allein mit Hund von Dresden nach Wien reisen. Es gibt einen RJ oder RJX Direktzug, ich will echt gern nicht umsteigen. Der RJ kommt aber erst so spät in Wien an, dass ich nicht mehr in die Unterkunft käm. Aber der RJX (eher am Tag) wird mir nicht angezeigt, wenn ich Reise mit Rollstuhl eingebe. Bei Ceske Drahy kann ich den aber als Rollstuhlfahrer buchen. Bei DB wurde mir gesagt, dass beim früheren Zug das Kontingent an Rollstuhlplätzen bereits aufgebraucht wäre. Stattdessen wurde mir eine angeblich barrierefreien Verbindung mit Bus von Dresden nach Prag angeboten, klingt seltsam für mich.

Ich würde gern die ÖBB kontaktieren, aber ich bin ungelogen seit heute Vormittag in der Warteschleife. Kann ich die schriftlich kontaktieren, wenn ja wo? Macht es Sinn stattdessen über Ceske Drahy zu buchen oder kann ich dann evtl nicht mitfahren? Hat hier jemand Einblick in öffentlichen grenzüberschreitenden Verkehr mit Rollstuhl? Will diese Reise doch unbedingt machen :)

So ... you guys have more experience in being disabled than me. I'm worried about work. I live in Europe so I'd be more interested in experiences from Europe.

I'm a mechanical engineer with a master's who currently works in IT (high performance computing) at a large university. It's all very accessible so I was already able to return to work. But my contract ends in March, and having grown up in poverty, I'm of course scared how it will be. The job market sucks right now for everybody. But I used to think, well if all goes wrong I'll just work in retail again, as I used to during studies. Might not be so easy now. Plus discrimination?

I know I'm lucky to have a career I can continue to do, and even in such an accessible world (academia). Still, how has work life been for you?

So, I'm doing research for my first custom wheelchair. I have a good wheelchair tech on my side and I've been reading lots through this sub and the web.

I used to be a very active person and I definitely want to be again. I will use it with Alber E-Motion wheels and/or a front power attachment. I can't push much myself. I travel solo lots, I have a dog, I want a sturdy chair I can really rely on. That's the most important thing.

I found the HOC and BOX wheelchairs from the US and really like them. Especially the suspension chairs, sounds like heaven for my sensory neuropathy. Are there similar brands in Europe that focus on durability before weight? Maybe Pro Activ, but they're very expensive and difficult to get covered. I'm thinking about paying out of pocket for an HOC or BOX, but I'd prefer a manufacturer from Europe. It would be simpler with replacement parts and fitting ..

And honestly, I really like the look of HOC and BOX. European chairs kind of all look the same, just with different colours.

I went into the office (didn't have to) to see my group lead on Tuesday. I had already gone into the office on Monday, so I knew it wasn't a great idea anyway. I slept a little longer than I planned, so all the parking spots were taken, and I had to walk quite a distance. I'm still in an awful amount of pain because of that. Sleeping that short amount longer wouldn't have changed most people's day much. My week is screwed.

It's just so many little things. Taking the dog out with a wheelchair is really difficult. Taking the wheelchair down the three steps is difficult. Putting the battery in the power attachment. The leash keeps getting pulled into the power attachment's wheel. Man, it all sucks!

I went drinking with a friend on Saturday. I planned the bar, hoped for parking (went well that time), then the bar was closed. We went to another bar, I walked too far and getting back took a long time. I forgot I of course can't drive when I drink. I'm not used to relying on being able to drive a car, but now I need to. I miss spontaneity. I hate being stuck at home so much of my time.

I miss being able to just walk. I miss moving without an aid. I miss things being simple. They never felt simple. They feel so complex and frustrating now. Everything is frustrating, even using a computer mouse. I mis-click a lot due to shaking hands. Everything hurts. Nothing works. Parts to repair used wheelchair equipment are hard to get by and horribly expensive. Sometimes doctors have heard my illness exists, but still they know nothing about it. Everything is so difficult! What keeps me from punching the wall is the neuropathy.

I've been unable to walk far enough for almost anything outside my home for four months now. I have a diagnosis and a prescription for a wheelchair + power assist wheels for one and a half months. I would like to return to work, and not just remote, and get places. I would really like to.

I bought a used manual wheelchair and used Batec Scrambler, since backup chair and such a large attachment wouldn't be funded anyway. I can't push myself. So ... I can get out, finally, and take my dog out with the attachment. But the Batec Scrambler is truly too large for anything indoors, including work. I knew that. I thought the waiting time would be a few more weeks. Two months. Maybe.

Due to complex issues with insurance and whatnot, I won't have a fitted wheelchair with power assist wheels until January at least! January, or maybe February, or March. What?? I don't think my employer will be happy to hear that. I'm not happy anyway.

I could use up literally all my savings and buy power assist wheels to keep my job. From a financial viewpoint, that does make sense. Thinking about asking relatives or my union to help with funding. I could try through another institution, but they apparently have six months to decide.

Nobody tell me Germany's health system is good. It's only good if you don't need it. I can't do this anymore 😭 after not being believed for weeks, hospital, dealing with the diagnosis and my body changing so drastically, not being able to get anywhere much (including doctors appointments, sure who needs those) and jumping through one hoop after another to get the wheelchair, for it to still take so long ... I'm just at my breaking point. Would've been easier to fund it all myself at this point.

Thanks for reading this far. I have nothing to say really except: insurance sucks. Disability is expensive. The waiting games are cruel.

I spent time at hospital recently, was diagnosed, it's probably not getting worse in the near future. I work in IT and have already returned to work with less hours. Now I'm increasing hours, but I'm only working from home so far.

I went to the office two days ago, and I'm still in a lot of pain from it. I used a rollator. I can walk the distance from my car to my office, but it hurts a lot. I wasn't able to make the way back on my feet, so I sat on the rollator and pushed it backwards. Fortunately, a colleague accompanied me. Needless to say, this is not the right mobility aid for me, I definitely need a wheelchair. It was prescribed, and now (finally) the supplier sent the offer to insurance. But as you know, these things take time 😭

I can't work from home forever, and also not for the next three months. My employer doesn't want that, I don't want that. But what do I do?

The rollator is obviously unsafe. I have a manual wheelchair, pushing it for longer distances is impossible, the short distance to my office might work. Maybe it's just as unreliable. I could get a cheap power chair, but I would feel uncomfortable using it. I was prescribed a lightweight manual wheelchair with power assist wheels. I thought about buying them in used condition, then I could keep them as a backup, but the battery condition seems unreliable with used products. My budget is only around 500 €. Being pushed .. I hate it. Colleagues would do it though. I have a Batec power attachment that I can't attach to the existing manual wheelchair yet, and it seems difficult to get the right components to do so. I would prefer to spend the money on them instead of a power chair.

I want to return to work. I really don't know what to do while I don't have a working wheelchair setup.

I spent time at hospital recently, was diagnosed, it's probably not getting worse in the near future. I work in IT and have already returned to work with less hours. Now I'm increasing hours, but I'm only working from home so far.

I went to the office two days ago, and I'm still in a lot of pain from it. I used a rollator. I can walk the distance from my car to my office, but it hurts a lot. I wasn't able to make the way back on my feet, so I sat on the rollator and pushed it backwards. Fortunately, a colleague accompanied me. Needless to say, this is not the right mobility aid for me, I definitely need a wheelchair. It was prescribed, and now (finally) the supplier sent the offer to insurance. But as you know, these things take time 😭

I can't work from home forever, and also not for the next three months. My employer doesn't want that, I don't want that. But what do I do?

The rollator is obviously unsafe. I have a manual wheelchair, pushing it for longer distances is impossible, the short distance to my office might work. Maybe it's just as unreliable. I could get a cheap power chair, but I would feel uncomfortable using it. I was prescribed a lightweight manual wheelchair with power assist wheels. I thought about buying them in used condition, then I could keep them as a backup, but the battery condition seems unreliable with used products. My budget is only around 500 €. Being pushed .. I hate it. Colleagues would do it though. I have a Batec power attachment that I can't attach to the existing manual wheelchair yet, and it seems difficult to get the right components to do so. I would prefer to spend the money on them instead of a power chair.

I want to return to work. I really don't know what to do while I don't have a working wheelchair setup.

While I'm waiting for a power attachment for my wheelchair, I'm stuck with using a rollator. Which ... sucks because I don't get very far, but also because people react to it. I've been a cane and wheelchair user before and people often react to mobility aids, but not like that.

Had a taxi driver almost turn around and walk away because he was so shocked a young person was using a rollator at a hospital in the rheumatology department (come on). I don't get it, but it's this mobility aid my family reacted to the most. It's this mobility aid I apparently had to use to be taken seriously by doctors. Well.

I really struggled going out with the rollator in the first place. With every negative interaction, it gets worse. Recently I stayed home for three weeks because I couldn't do it another time. Ugh. I'm struggling, with illness, changing ability, I'm scared, and being stuck at home or dealing with these interactions is just too much on top. I feel like I can't do it, so I don't, I don't leave home and I struggle mentally with it, it's a vicious cycle. I live alone but usually, I'm a socially very active person.

I think I really need to get better at using the rollator despite the reactions :( any thoughts?

I read a bit through the sub and there are studies and explanations for muscle pain in SFN. I have confirmed SFN and a lot of muscle pain in my calves and forearms only (I wonder why there). It is triggered by using the muscles and then takes weeks to get better. I also have it during rest once it's there.

The other more common neuropathic pains I have are alleviated by neuropathic pain medication. But not the muscle pain! So it might be explained by an autonomic process? I won't be able to find out the reason for my SFN for the next few months at least, so I'm looking for symptomatic treatment.

Have you found anything that alleviates this type of pain? Medication, heat, stretching, anything?

I have a care assessment on Wednesday (Begutachtung für Pflegegrad) in Germany.

The application was done in my name at the hospital two weeks ago. I approved of it at the time.

I only got a partial explanation for my quite severe symptoms while at the hospital (neuropathy of unknown cause). I was very limited before hospital and also after. I live alone and need help managing my household. I also got a wheelchair prescribed.

But since 5 days I've really been improving. I don't know why because I don't know the cause of my neuropathy, it might just be a fluctuating condition, might be due to medication, or it might actually have gotten better for whatever reason. I'm still in an awful lot of pain especially during walking though. Maybe I'm too optimistic rn.

My question is - should I cancel the assessment? I can restart it at a later point I guess. Any pros or cons? Nobody can give me a prognosis for my condition right now.

For context: I live in Germany. We have levels of care that determine which care services or how many hours are paid by health or care insurance. To have a level of care, you need to be evaluated by a doctor employed by an insurance service.

I recently was hospitalized with severe mobility limitations, pain and a bunch of other symptoms. They thought it might be autoimmune, but only found SFN, which they said doesn't explain the severity. I agree. They prescribed a wheelchair nonetheless and sent a level of care application in my name to insurance. I wanted that, and I think it was appropriate.

The past two months I was unable to do laundry, vacuum, lift anything heavy or even plates from the dishwasher repeatedly. I also needed help getting to doctors because I was in too much pain to drive. Since I got released from hospital, I slowly improved. I can walk further, drive again, didn't do laundry yet but it seems promising. Maybe it's due to Gabapentin, maybe this is the natural course of the illness.

Maybe I'm making this all up.

The care assessment is in two days. What am I supposed to tell them?

I'm scared my condition worsens again. I'm scared they let me walk, my gait is almost normal now. I know so little about how it's gonna go. It's the same service that evaluates if I need a wheelchair or not, and I definitely want one. I don't want to be stuck at home ever again. So I'm also scared they'll decide I don't need one, based on the care level assessment (definitely legal).

Well. Should I cancel because I'm just getting better now? How much did your conditions vary? I realize we're all so different. But. Well, nothing else to go by.

I don't need advice, just venting. People with stories going through anything similar would help.

I started converting in February. I had been going to this liberal synagogue in my city for two years, and was quite active in it. Great community.

My health issues had already started over a year ago, but I kept powering through. Starting conversion felt risky, but since I had no diagnosis and thus no prognosis I assumed the best and kept going, but I struggled a lot. Wasn't able to attend all classes, wrote essays for the ones I missed. The rabbi kind of didn't get how bad I really was, although I told him. Fast forward to June, and I find myself at the hospital, almost unable to walk and the doctors had suspicions for all kinds of scary diagnoses. Turned out to be a neuropathy of unknown cause, so still no real way forward, but it could really be worse. I attended two conversion classes from hospital.

I was released with a wheelchair prescription and have to take medication that makes me so sleepy. Everything in life is paused right now, and I didn't feel able to attend the last conversion class. The rabbi was understanding and wishes me all the best. He said health issues should not be a reason not to convert. I think he realizes I do really try my best. I will be able to resume conversion some day - I hope.

It's really frustrating. I don't even have that wheelchair yet, but even if so, I'd have to ditch the wheelchair and endure the pain to attend services, since the synagogue isn't accessible. Conversion was the last thing in life I dropped due to illness. I mean - I will get there eventually. I just was really close and could have finished conversion this year. As if. Life had different plans.

However, I've really started celebrating Shabbat with all the brachot and kiddush and started praying more, this time sticking to it. In some way, I feel much closer to life, religious practice and belief than before. I always struggled with what my family and other people think of my religion, and I just don't anymore. It's not important in the grand scheme of things.

I'm slowly starting with reduced hours at work now, I need to prioritize finances. It's a start.

Hi,

after over a year of intense chronic pain I was diagnosed with Small Fiber Neuropathy during a hospital stay. They did a skin biopsy. Many other diagnoses were ruled out.

The main reason for my admission was intense pain in my upper legs that impaired my mobility significantly. I was able to walk about 200 meters with a walker, this degree of impairment lasted the last 2 months. It is now slowly getting better. But I also have pain in a lot of other places and it absolutely fits SFN. What doesn't really fit SFN is the weakness and shaking in my arms and legs under load.

However. And this is my question: the doctors say my mobility impairment can't be explained by SFN only. I'm unsure of this. I have no other health conditions and was very active and healthy until recently. I could try and go to a hospital with doctors specialized in polyneuropathies. Unsure if it's worth it ... it's far.

What's your experience? Can SFN alone be this limiting? Are you using mobility aids? Which ones? Did medication for neuropathic pain "remove" the mobility impairment completely/treat it, or are you still limited? Does the mobility impairment come and go, or is it stable?

Thanks for sharing <3