Changing Living Arrangements Due To Medical Circumstances -- Who Has Done It?

[Lethargic Smiles]

Does anyone have experiences to share with me about changing living situations due to chronic illness?

Maybe it was a choice, or maybe you had no choice, either way, I'd love to hear about things about it such as the situation, how you made the choice, doubts you had going in, the positives/negatives, if you'd make the same decision again, what you'd do differently or wish you knew before... Really anything you care to share!

If you were sick before moving (or having someone move in), and the change was to try and focus more on your health: What did you miss about your old living arrangements, what did you not miss?

[Becia]

My situation didn't come about because of my health initially. A friend of mine offered his extra bedroom a couple days after I had heart surgery, so I could relax and heal, as my family life was very rough, and I've never been the one to take it easy on myself. After those few days, when I went back to work, he and his family offered me to stay with them as their housekeeper. Little did we realize that another surgery was in store for me, and then ultimately, a diagnosis of dysautonmia which currently had me wheelchair bound and reliant on them more than I really want.

My family was angry I left, because I've always been the one who took care of everything and everyone, and it was basically cut off from my family. Terms are slightly better now, but I'm still the selfish person who left for the wrong reasons in their eyes (taking care of myself is apparently a wrong reason). But without the people I have around me, I know if I had stayed at my house, I would be dead right now. I don't see how living could have continued. I would have worked myself to the edge and never questioned why. Just the way I was raised... I wasn't allowed to be sick, hurt, tired.

Even though it's left me on the outs with so many of them, I wouldn't change it. The people I live with now are my family, pick me up when I pass out, have made critical medical decisions with a balanced thought process, and truly care for me. They love me for me, accept my weaknesses, and celebrate my strengths.

[Lethargic Smiles]

Becia thanks for sharing! It sounds like you made a tough decision to stay with your friends rather than go back to living with family and are much better off for it.

I'm happy to hear you have a supportive living environment, but sorry to hear it has cut you off from your family and you are thought of as selfish. In my opinion, they are behaving selfishly for thinking of you as being selfish. Whenever I feel like I'm being selfish, I always ask myself, "If so-and-so had the flu, would expect her to do this?" We get so used to being sick, I think it is easy lose perspective... at least I do.

It sounds like these friends of yours are what I think of when I hear the word family.

Hopefully more people chime in... Hint hint.

[lejones1]

I got sudden-onset POTS a year after graduating from college and was living halfway across the world at the time. I had limited job security on my visa so I was let go after missing a few days of work. I stayed with my boyfriend at time and his family for about a month, hoping to get back on my feet, but after it became clear I was not improving and needed to see specialists, I moved back home with my family.

It wasn't exactly a choice and at the time I certainly didn't think I'd still be here 18 months later, but I couldn't work to support myself and needed my American health insurance. I wouldn't have done anything differently - I was bedridden or housebound for most of my first year sick, so I don't know how I'd be here without my family's support.

The negatives - watching my parents feel helpess as they watched my condition deteriorate. And feeling like a burden on them. As I've gotten healthier, the standard "adult child living at home" issues of boundaries, responsibilities, etc., but that wasn't really an issue while I was sicker because I think I was too weak too argue. Also, I went far away to college and even farther afterward, and most of my childhood friends have moved away as well, so I don't have many friends at home, and that's been quite lonely. Mostly I just miss the independence of living alone and living near friends.

But every time I feel down about that, I realize how thankful I am to have a family that's supported me, emotionally and financially, through so much. So that really outweighs any negatives. I really haven't had to worry about anything except getting a diagnosis and getting healthier, and I realize how lucky I am to be in that position. I wouldn't have done anything differently.

[lynnie22]

Thank you for bringing up this topic, Jackie. I am struggling with this issue right now. My lease is coming due and I have not been able to work like I did before, so uncertain, and my rent is NYC rental very expensive. So I am forced to move, not certain where, not certain how I can look given my health, with all rents in the City being very high. So the resolve on this one is unknown at this point. I moved to this apartment four years ago when I was feeling well.

In the past, about sixteen years ago, I was forced to move because of health=inability to work. I had been diagnosed with CFS, although it certainly may have been a variation on the pots theme, some of the symptoms were the same. I was in a work/live apartment and, as work declined and I stopped working, I was forced to move. Complicating the whole thing was the fact that I was also the primary caregiver for my mom who had dementia and was living with me. Thank God I had a studio apartment that I at the time owned, where we moved, although the quarters were quite cramped, as you can imagine. Finances continued to worsen though and again, thank God I owned the apartment because I was able to sell it -- and moved again to a bigger, more affordable apartment outside Manhattan. I was on disability at the time. I had only two weeks to find a new apartment once I found a buyer, it was crazy, but I did. It wasn't ideal, but it at least was spacious which I think was healing. My health slowly improved. In both moves, I don't believe there was a choice in either decision. Of course I missed things in each move -- the space tremendously when I moved back to my studio, and the city when I left it.

Now, however, I am more uncertain, because I don't have something to fall back on, and I'm not well enough to commute so that I can rent something more affordable. Anyway, I wish I had thought ahead this time, that I might get sick again. Maybe I would not have moved to an expensive apartment in the City, but it is what it is, and I have to figure out what makes sense and find a place to live.

[corina]

About five years ago we've actively searched for an apartment (we're in a townhouse now) but didn't find something that fitted our needs. That made us decide to look into adjusting our home. In the end we decided that would be best given the circumstances at the time. We managed to make our home as user friendly as possible to me and my family. Things that couldn't be adjusted (like the laundry room being in the attic) were taken care of by my husband and sons. We adjusted our garden, livingroom, bathrooms and kitchen, the floors and even the shed. We made ramps to go in and out with my electric wheelchair and found out that it worked really well. Oh and our bedroom transferred into the room I loved. I have to say that it made being sick and bed/home bound easier so all in all it was a great decision! I'm no longer bed bound but still benefit from all the adjustments we made!

[mountain girl]

We chose to move closer to my work so I would not have a long commute, 10 minutes versus 30 minutes one way. Since working in itself was so difficult, even reducing the commute time made a big difference. I could get straight home and rest. The move was more difficult for my husband as we had just built the house 5 years before I got sick.

I never really look back. I am so glad we made the change, and it is a shorter commute time for my husband as well.

We were able to find everything on one floor, our bedroom, kitchen, laundry and living room, with the extra bedrooms upstairs.

The only thing we questioned ourselves on at times was should we have stayed with something less expensive in case I could not work. I was okay with that, but it was hard for my spouse to have "less" so I kept plugging away, and now after 5 and 1/2 years since my diagnosis, I am "better". Not cured, but better. It has come gradually, a little each year. Good luck to you with your decision.