I think this has been asked before but I tried to pull it up and couldn't find a post on it.

I'd like to know how many are pretty much homebound. By this I mean, most of your time is spent at home because you are unable to participate in day to day activities due to your illness. If you are homebound, and you don't mind sharing, please tell us what main symptom/reason causes you to remain at home and how long you have been this way. I'd also be interested in knowing what you do to occupy your time and who helps you, if anyone.

I have been homebound basically since last November when I started passing out very frequently. I can not stand very long at all without passing out so I must stay at home and at least seated for most of the time. I am very fatigued and have a lot of GI symptoms. These are my main symptoms. There are a lot more that go with it but these are the top ones.

I have 2 daughters (ages 16 and 14) still at home who are really great at helping me but I do think they resent the fact that I am sick sometimes. I miss out on a lot of their activities and they really have to pitch in and help around the house more than the normal teenager. I also have a wonderfully amazing husband who is my rock. He treats me like a queen and I don't know what I would do without him. However, I can sense that his frustration level is increasing as he struggles to take care of me, our daughters, our home and work. It makes me feel guilty to just sit here and do nothing while they all work so hard. Although I know it is not my fault and I can not help it, I still feel a sense of guilt and sadness.

My main activity is the internet and reading. I also do volunteer work for a medical missions organization. It is all basically computer work so I do not have to leave the comfort of my recliner to do it. It gives me some sense of accomplishment to know I'm doing SOMETHING!

Lately, I've really struggled with an overwhelming sense of depression. Being stuck in the house is usually not a problem for me as I am typically a 'homebody' anyway. I enjoy being a home and there's usually nowhere I'd rather be. But I guess after awhile anything can get old! I think I also have a lot of time to sit here and worry about what is going on with my body, my family and our finances. It is all scary to me and, as my husband says, I think things up in my head before they even start to happen!

As I was browsing through some posts this morning, I found one that was very interesting and encouraging to me. I found one particular quote from BlueSkies that I found especially uplifting. She said, "Worrying is an emotional waste of space. Either it's going to happen or it's not. Worrying about it isn't going to change anything!" I think I may have to make that my signature!

OK, your turn!!

I stay at home most of the time. I live in florida and it is so hot and humid right now that I just cant handle going out. I get extremely light headed and dizzy and faint feeling. So I spend most of my time inside with the ac on. When winter comes I get out more since I can handle that. But I bascially spend my time with my son who will be starting school next week. He is 5 and starting kindergarden. But I sit and play on the computer, do things around the house and watch discovery health..lol. Hopeing one day a case like mine comes up and I can compair notes. I missed the showing of all the Linda ones. That sucks. But that is basically what I do all day every day. I get out maybe once every two weeks and go visit family. My parents live across the street so I dont have to go far for them. At night I do get out everynight with my husband. This is where I get my excersise. But it is after the sun has gone down and it has cooled down alittle bit. I am out for about an hour and half everynight with him.

So you are not alone with staying at home, there are many of us who stay at home because of dys.

I have been homebound for over 2 years. I spend most of my time in my recliner each day. I'm lucky if I can get 1-2 chores done per day. I spend a lot of my time on the computer, watching TV or I read sometimes.

My worst symptoms are hypovolemia, hypotension, can't stand very long and fatigue. Like you said we all have a list of them.

quote:

Originally posted by Xena:
My worst symptoms are hypovolemia, hypotension, can't stand very long and fatigue. Like you said we all have a list of them.

HYPOVOLEMIA - How on earth could I have forgotten that! That is one of my worst symptoms and contributes greatly to my passing out. I am going to get a port soon but a couple of weeks ago while getting fluids through a peripheral line, I had a 'fluid shift' where my body thought I had too much fluid and shifted it all to the extra-vascular space. I have gained 30 lbs in about 6 weeks, it is ridiculous! THEN, I developed a blood clot in my right thigh. I am dealing with that right now. It has not been a fun few weeks.

So sorry to hear about the last few weeks. I certainly understand, I have been in the hospital and had 2 albumin transfusions. I am now infusing 4 liters of fluid per week. I have gained quite a bit of weight lately myself.

Hypovolemia is the worst for me and I'm sorry it is for you also. I will keep you in my prayers. I've had a port for over 2 years and I should have gotten it sooner. So good luck and I hope you get yours soon.

Joy,
My thoughts go out to you. I'm not homebound, but my energy levels have been going down somewhat progressively. I tend to worry alot during episodes when things get worse. I had surgery Aug. 1st and the dizzy symptoms have been steady and pretty strong each day since. I haven't driven a car since the surgery and have only gone out once with my husband for a short drive to get a "drive-thru meal". I'm trying to rest and do everything that I'm supposed to, but it is definitely HARD to be at home EVERY single day. I had one day where I did a lot of computer work for my freelance writing, but the next day, I was wiped out. I'm glad you are able to do the volunteer work for the medical missions organization. I conversed with you some time ago about this as I am a nurse and have done some volunteer mission work as well. If there is any additional at-home volunteer work that the organization might need, please email me. I was very inspired by Baxter's post that she has written a book that will be published. That is just wonderful.

To Misty,
I also send my positive thoughts to you. I'm sooooo glad that this forum exists. It helps with "validation" because so often, I just try to pretend nothing is wrong with me and that isn't really good, because then I start blaming myself for not being able to MAKE myself get well. I certainly do TRY, but the limitations have steadily grown and it is still, very hard to accept.

I thought it was interesting that I have read about others spending time in their "recliners". I bought a soft cushy one a couple of years ago and had it in the basement up until 10 days ago. After this recent surgery, I had my husband and dtr bring it to the livingroom and it has been my "good friend" lately. I have lots of reading materials, a basket of markers, pens, paperclips, stapler, bottle of water, etc. right beside it....plus my laptop. Most days I try to get work done on the laptop related to my freelance writing. It helps me feel productive. I wish there were more jobs where you could work from home. I'm trying hard to do more marketing so I can work fulltime from home. Misty, It is good you have your parents close and that you can get out in the eves with your spouse. I KNOW what you mean about the humidity. I have a fan on almost all the time, because it just helps with airflow; I feel like I can breathe better.

This message has been edited. Last edited by: DizzyBrunette,

Hey Dizzy! My recliner is definitely my good friend, too! It is positioned beside a huge wall of windows so I have a wonderful view of our wooded back yard. I have enjoyed watching all the different seasons and all the different wildlife that wanders up close to the house. I really 'live' in my chair except for when I go to bed at night. I just can't stay in the bed very long. It makes my back hurt so badly and I just feel worse after I've been in it for very long. As long as I am in my recliner, my pulse and b/p seem to stay pretty stable most of the time. I, too, have a nice set-up beside me so that I have a lot of the things I need handy. I have a big basket with my notebook that I keep all my notes in, more paper, pens, a brush, magazines, etc. I also have a small table for my drinks, remotes, phones, etc. and a small trash can. Except for going to the bathroom, I don't get up much during the day while I'm here by myself. I'm too fearful of passing out while I'm alone. It has happened before and it is not a pleasant experience. A couple of my doctors have suggested that I get a helmet. I just hate the thought of that. I know it would be safer but I already feel so confined and limited, I just can't imagine adding a helmet to everything else. I will continue to think on that one.

I am homebound, unless you call the 4 or more appts. per week that I go to. LOL I really think that they help me (by getting me out, I mean).

My head is so dizzy/buzzy that I don't drive long distances. Just moving my eyes or head and I am so dizzy. The fatigue is bad and so is the pain. I think if my head was clear I might be able to push thru the fatigue, but not sure. I am good at tolerating the pain, but don't know that it's good for me. I am to try Ultram ER again (for the 3d time, I think it gives me migraines). These are the reasons I am homebound.

My hubby loves taking care of me and I am so very thankful for that. My LLMD has finally got it thru my head that I just have to take it easy by realizing that this is a long journey. There's nothing I can do to rush it. The 3 P's she taught me were patience, perseverance, and prayer (prayer for her to have wisdom in treating me). Of course prayer for me to have the 3 P's. LOL

I spend my days on the computer and am thankful for support groups (including the ones for my brand of sewing/embroidery machines/computer). I would be so lonely w/o them (you) and feel even more so thinking I was the only one with these challenges. I watch tv when I've caught up on all my groups.

hugs

Joy,
It's nice to hear from you again. You mentioned your recliner by a window overlooking the woods. It sounds so similar to the little set-up I have. My recliner is also near large windows in our livingroom overlooking the side/backyard area. We live on 2 acres of beautfiul woods here in Iowa. The humidity has been bad "as usual" this summer, though today is WONDERFUL and I have the windows wide open. I shed tears this afternoon as I read some of the posts. A mixture of sadness that so many of us deal with this crappy disorder, and then a gratefulness that others UNDERSTAND the symptoms, this disorder, and how it impacts the individual, the family, friends, lives. Again, thanks for being out there as a support group folks. It REALLY does help. I've been copying and pasting ideas about nutrition and lab tests to a WORD document so I can have them in one place. Peace, DizzyB (Jill)

I'm not 'homebound' but it is difficult to get out and about. I get so tired and short of breath and sloooooowwwwwww down. Plus it is TOOOO hot here for me to handle.

So I am mostly in the house. Thank goodness I work from home (and did so before I got sick).

When I first discovered POTS as a possible diagnosis (THANK YOU MYSTERY DIAGNOSIS) I started the water and recliner. Before then I'd worked at a desk with a regular computer chair. I switched to a recliner couch and worked the next 3 months there. I credit both the water and the recliner as helping me get to a more functional state. (along with meds and vitamins)

I'm now back in the computer chair and am slowly rebuilding my body though PT and water exercise but if I hadn't rested and gotten my body to a reasonable state, there is no way I could be doing the PT.

But meanwhile - I do very little activity and very little out of the house. It's lonely but sometimes I prefer that.

Yes, I am homebound since 2005. Mostly recliner bound and have to have feet up.

Hi Joy,

I wrote that thing about worry for myself. I'm a professional at worry -- or I was. I'm getting so much better at not worrying now.

I was homebound for 4 years and apart from doctors' appointments I went nowhere as I could not walk withought leaning on someone (this was pre-diagnosis of POTS). I hope I never have to go 'there' again. It's a lonely place to be and I had so much guilt about it all -- even though I couldn't help it. Besides which it was hard t have much of a life. I was so bad that my psychiatrist was surprised that I actually made it to my son's wedding!!!!!!?????

I look at the one photo of me at that wedding and see a really sick woman.

Anyway, by the grace of the gods I'm doing better now. I'm not able to work, have bad days, hours etc but I am able to get out and about quite a bit although most of the time I'm shuffling like I'm an unfit 80 year old and I have to sit down and take frequent rests.

Often I have to come home early than I want to, as well.

I missed my God-daughter's 21st Birthday party on Saturday night but this was because I was so knackered after a few days of looking after my 22 month old grandson. He's an active little boy but with this grandma he has to play a bit more sedately.

Although I missed my god-daughter's party I was able to get in the car and drive with hubby over an hour to my sister's farm to celebrate my niece's third birthday. I was surrounded by my family. I participated when I felt well and when I felt weak I found a nice warm spot on one of the verandahs to lie down on.

My sister has had this farm for about 2 years (although it was in her husband's family for a long time) and I've never made it there until last Sunday.

I was very pleased with myself.

By the grace of the Gods I'm finding that I'm now lucky enough to be able to push myself. As I posted somewhere else yesterday I'm running on adrenalin (with physical difficulties) and eventually I have to stop and face the consequences because my body stops me. But so far, knock on wood, I'm learning that after my body takes time out I can get up and 'running' again. Not at the pace of a 52 year old woman, though, (my mother is more active than I), more like I'm pacing myself at the 80 year age level.

But I'll take what I can get.

I don't waste time thinking about what will I do if I become completely homebound again. I just will NOT go there mentally. I am fortunate now that I can push myself as far as I do and I'm trying my damndest to do so in order to have a life.

But go back 2 years when I was still homebound and I would have thought there was no hope for me to ever leave the house alone again. And I would have been wrong.

I am not homebound, although I struggle though every day, I work full time. My symptoms have gotten steadily worse though. If it wasn't for propranolol then I don't know how I'd be able to function. I am trying to find the cause of this so that I may be able to stop the disease progression before I am homebound.

Joy: So sorry to hear that the fluids haven't made enough difference in your life to allow you to be out of the house more. If you PM me, I have a suggestion or two.
You are in my thoughts often.

hey..

First have to say am sorry not abel to read all of this tread.

I have been of and on housebound since 2001. more inn then out.

Somthimes its very hard, but what can one do but hope..?
What i do depends one the way my body behaves. And how strong the symtoms are. Most of my time is spendt in bed or in the recleined chair in front of tv.
i wach a lot of tv , a lot. I am now abel to read a bit more then used to. So =)
i knitt a bitt, try to things i can make sitting in the chair.
Have an el.indoore chair. And some other helpfull stuff that make my day eisyer.

when i go outside, i have a manuall an a el.chair.

life goes on..