How does one see a doctor when bed-bound?

[Mor]

How to see a doctor and get tested for stuff while bed-bound? How does one work this out? You can't force yourself to go right? I'm confused on how people get treated who cannot leave their bed?

Any advice would be appreciated.

 

[NL93]

When i was at my sickest, my GP made home visits.
I also had some one from the hospital come to my house to take blood.

But i never received any specialized treatment while bedbound. Just standard care from GP. Here in the Netherlands we don't have ME docs that do home visits.

It's truely ridiculous to be so sick and incapacited, and have no treatment at all, just because you're too sick and incapacited to visit a doctor

So yeah. Maybe things are different in your country

 

[Kati]

Hi @Mor, welcome to the forums.

I am not sure where you are, like @NL93 said, it depends where you are.

Typically in Canada, patients need to get to the doctor. If you already have a doctor, you can ask if they would make an exception or whether there are physicians visiting at home. Palliative care physicians would visit at home.

The second option you have would be to arrange a skype visit to a physician. In British Columbia we have such online service called Medeo (which has been bought by another company). Skype would also be a great option if you wanted to see a ME specialist from outside your area.

Lastly, you could arrange for an ambulance to take you to a doctor if need be- but this option would come costly in energy and in cost. However keep that in mind just in case.

There are mobile lab services that visit the sickest patients at home for blood draw.

All of these services vary depending where you are, and sometimes you need to do a bit of research. Usually the local ME associations can be a great help in hooking you up with the services.

Sending best wishes.

 

[TigerLilea]

If you can't get a doctor to come to your house then your other option is to get an ambulance to transport you to the hospital (if they will for non emergencies). Do you have a family member who can drive you to your doctors?

 

[PennyIA]

When I was bed bound, my sister took me to the doctors. I was able to lay down in the car. It was really bad while she used the wheel chair to get me to the doctor's appointments. Most of the time, because I had a vomit bucket in my lap the whole time, they'd escort me straight back so I could lay down until the doctor could see me. Once, one of the nurses got pissed off and left me for four hours in the back room. At least the doctors there were amazing once they found I'd been left unattended the entire afternoon - and the entire doctor staff attended to the tests I had needed.

I would still crash after an appointment, but at least I got into the office (not that they figured out anything).

 

[Jennifer J]

Hi, @Mor.

Welcome to PR.

Are you in the U.S.? You can call 211 or look it up on the internet. They ought to know of various kinds of resources for where you live.

http://www.211.org/

If you're comfortable let us know where you are, so people can point you in a good direction.

I've heard there's various transport services to help with people who need help getting to medical appointments. Not sure if there are requirements (such as being on MediCare or MediCal).

There was also some kind of service that doctors or nurses would come to your home. I'm not sure of the particulars, someone at 211 might know. Or a google search for home visiting doctors.

Also, maybe can reach out to volunteer organizations or other places that may help (philanthropic, charitable, religious, meetups...)

My dream is to not only have a ride but also have someone with me that understands what's going on with me who can advocate for me and help me communicate. Not sure if where you live, if there are any social services, social worker or a ME group that can help you with this. Hopefully.

Wishing you the best.

 

[Gingergrrl]

@Mor is the main issue that you cannot physically ambulate from bed and require someone to lift you, or can you transfer to a wheelchair if someone pushes it, or is the issue more that you need transportation and someone with you at the doctors appt to help convey the information? I was curious which part of the process needs the most attention (or if it is all of the above)? I realized when I started to respond that I was not sure which part was the biggest challenge and hoping you could say more.

 

[Mor]

@Mor is the main issue that you cannot physically ambulate from bed and require someone to lift you, or can you transfer to a wheelchair if someone pushes it, or is the issue more that you need transportation and someone with you at the doctors appt to help convey the information? I was curious which part of the process needs the most attention (or if it is all of the above)? I realized when I started to respond that I was not sure which part was the biggest challenge and hoping you could say more.

I should've explained that it's more of an issue of worrying about crashing, as I'm mostly bed-bound, but can still get up to go to the bathroom, etc. I could push myself to go, which is what I'll likely do.

I live in the U.S.

I was mostly house bound, but got a stomach flu, then anxiety and insomnia from some supplements, and the combination wasn't good. I have what I guess now is Post Infectious IBS, and a sore throat that comes when I walk around too much. POTS too.

 

[KRR]

I'm in a similar situation. Are you in the US? Here, there's no way around pushing through to get out once in a while to see a doc. They won't keep you as a patient if you don't show your face once in a while. If you have a true emergency, you call an ambulance, but I've learned that what can be done in the ER is very limited these days. They will only treat actual acute emergencies. I've been sent home several times, even when I was so weak I could barely stand up, and was all skin and bones. The system has really changed in recent years.

Alternatively, I have sought out help via phone consults. Of course there's a limit to how far that can go in terms of treatment. Dr. Chia in Los Angeles does phone consults, but you need to get to a specialized lab (Quest or Labcorp) to get blood work done that he orders, before scheduling a consult with him. And he's not cheap.

Generally, I put a lot of energy into arrangements for getting physical support - people to help me get places that I absolutely have to get to. There are medical transportation services, which can be difficult if you're not feeling up to all the waiting, but good to know all the resources that are available. I do a fair amount of hiring private help for transportation, household chores, grocery shopping, etc. - more than I can afford, for sure, but that's another story. I have found a lot of resources through a social worker.

And I would say that I'm homebound, and it's not a good thing to push myself through the stress of getting myself out the door, not to mention dealing with hectic medical offices, but sometimes I just decide that the benefits outweigh the risks, on a case by case basis. And I haven't figured out a better way to get dental work otherwise!

Good luck, and let me know if you'd like more specifics about getting more support.

 

[KRR]

If you can push yourself, then there are lots of ways to deal with anxiety.. having someone take you who you feel is emotionally supportive, doing various practices to calm yourself like slow breathing, relaxation techniques, etc.. the worst that can happen usually is that you'll feel awful from the stress, but usually that's more a matter of subjective discomfort than any medical crisis. That understanding can help in the decision to push through and go.

What also helps me is to remind myself that it doesn't necessarily have to be the ordeal I anticipate it being. And when my mind is open to the possibility that things could go more smoothly than I expect, that's usually what happens. The other day I went out to see a nurse practitioner, and she ended up being terrific and just what I needed at the time. Didn't solve my whole problem, but it helps to appreciate the little things along the way.

 

[KRR]

Hi, @Mor.

http://www.211.org/
.

Hi Jennifer,
My experience with 211 is that they only deal with psychiatric emergencies. Have you had a different experience?

I so agree with what you said about having someone to advocate for you. I needed that so many times. I remember being in a waiting room having to fill out forms, when the doc wouldn't see me without them, and I literally was too zonked to do it. My ride had left, and was too stressed herself to help me. I gave myself a few minutes to dig deep for inner resources, and was finally able to do the forms. Another time, I was admitted to the hospital with no one with me at all for the whole 2 weeks I was there, having to deal with the millions of questions from millions of people, when I felt I couldn't handle it, but somehow I guess I did! I even got the flu while I was there, on top of everything else I was dealing with. Somehow we rise to the occasion as best we can!

Karen

 

[Gingergrrl]

I should've explained that it's more of an issue of worrying about crashing, as I'm mostly bed-bound, but can still get up to go to the bathroom, etc. I could push myself to go, which is what I'll likely do.

Thanks for explaining b/c I wasn't sure if you were mobile at all and required ambulance transport to get to a doctor. Are you able to get to the doctor if you use transportation services such as "Access" or "Cityride"? These things have different names in different counties and states but if you qualify for the program, they pick you up at home and are often free or very low cost. Maybe you could prioritize one appt per month (or would that still be too many)?

Was also curious, is there a friend or family member who could go with you, or even hire a caregiver just for the day of the appt through an agency? I know you have probably already thought of all of these things but wanted to put it out there just in case.

 

[Seven7]

Some CFS specialist offer skype or phone consultation, I don't think they can prescribe but they can at least get some tests ordered and stuff like that.

 

[Jennifer J]

My experience with 211 is that they only deal with psychiatric emergencies. Have you had a different experience?

Hi, Karen @KRR. I'm not sure if 211 has much different kinds of resources in each area. Here, I have phoned them to try to find social workers and affordable housing. They also process food stamps applications. I have found most of their resources didn't work for me due to my needs or their criteria. My friend phoned them for homeless resources. They have other resources, too.

They do have psychiatric help, too. I phoned them years ago when one of my neighbors needed help. The person I spoke to at 211 was very knowledgeable and humane. I was so glad to have 211 to call and that I spoke to her. She taught me a lot, for which I'll always be thankful.

I so agree with what you said about having someone to advocate for you. I needed that so many times. I remember being in a waiting room having to fill out forms, when the doc wouldn't see me without them, and I literally was too zonked to do it.

I just went through similar two weeks ago. I had them send me the forms ahead of time, but they forgot to send me some pages. I just sat in the waiting room staring at the pages, couldn't respond. Finally as I slowly tried to I couldn't write. My letters weren't forming as I tried to write them. It's so strange when that happens.

Another time, I was admitted to the hospital with no one with me at all for the whole 2 weeks I was there, having to deal with the millions of questions from millions of people, when I felt I couldn't handle it, but somehow I guess I did! I even got the flu while I was there, on top of everything else I was dealing with. Somehow we rise to the occasion as best we can!

Sorry to hear. I feel for you. I can imagine what that was like for you.

You sound courageous and strong.

Somehow we rise to the occasion as best we can!

Edited out: Too much information off the thread topic.

 

[Jennifer J]

I should've explained that it's more of an issue of worrying about crashing, as I'm mostly bed-bound, but can still get up to go to the bathroom, etc. I could push myself to go, which is what I'll likely do.

I live in the U.S.

I was mostly house bound, but got a stomach flu, then anxiety and insomnia from some supplements, and the combination wasn't good. I have what I guess now is Post Infectious IBS, and a sore throat that comes when I walk around too much. POTS too.

@Mor. I'm mostly bed-bound, too. I always crash (I think many of us do) after going to see the doctor. It also takes me days to prepare for an appointment including additional resting. I hope you can see the doctor and that you'll be feeling better soon.

 

[Horizon]

There are some blood tests you can possibly have taken at home. As for maintenance, many will do phone or Skype appointments.