Getting Out Of The House Is Not Worth It

[purplefocus]

It has been along time since I have been in this forum. I got into a huge depression and just withdrew myself from everything. I'm trying to get myself out of it. I stay in my house all the time, I never get out. Its just not worth it. By the time I get a shower I'm so exhausted that I just go back to bed. My quality of life is horrible and I'm so frustrated. I have another appointment with my doctor on the 20th. I hope there is something that will help bring me up. I have been reading some of the post on here and it has actually made me feel better knowing that I'm not alone in how I feel. I have been dealing with this for 7 years and I was doing good. Then my life took a turn and my husband decided we were no longer good for each other (this has been almost a year ago) so I now live in an duplex with stairs with my 2 sons (ages 7 and 18). My 18 year old does all the shopping for us. I feel like a prisoner in my home because of the stairs. I get afraid that if I walk down them I will not be able to walk back up them so I just stay inside. I feel frustrated because Idont feel like getting out and doing things with my youngest. I guess I'm just looking for some encouragment. I went from being a very active mom, participating wife and full time nurse to a blob in a bed. That is pretty sad, huh?

Paige

[bjt22]

I wish I could be more encouraging. I've dealt with this a long time, too. Right now, I'm feeling rather imprisoned because of the weather. Some evenings, I can go out after dark for a bit. Yesterday, I had to have my husband take me for a quick trip to the store, and it was not good. And this was without doing any "preliminaries"....I just brushed my hair and went. I totally understand the whole take-a-shower-do-hair-get-dressed-then-feeling-too-bad-to-do-anything-else problem.

I know you feel bad about your kids. I feel bad for mine, too. However, because this has been going on so long, I'm now seeing that my kids weren't harmed in the ways I was afraid they would be. Sure, they were deprived of some things....especially my younger kids. I will probably carry around some guilt over this until the day I die. My husband has always tried to take up the slack, but you know, it just isn't the same, is it?

Right now, my saving grace is that as nasty as I can feel now, I've been worse and I've gotten through that. There will no doubt be times when I'm worse again, and I'll get through that, too. We do that. Each time I think we get a little better at it.

[janiedelite]

I don't know how I'd deal with stairs either. And living in hot, muggy Alabama... It sounds like times have been really tough for you.

I've tried to explain to my doctor how just doing all the toileting needed for a dr's appointment is so difficult. Since POTS, I've grown my hair out for two reasons: when I get up in the morning I can just pull it in a braid without even having to stand up, and my burning skin on my neck is really bothered by hair touching it. I also have stopped wearing makeup altogether except for very special occasions and then I still put it on pretty sparingly and quickly. If it comes down to being able to get out or wearing makeup, I choose being able to get out.

[pat57]

you've got to give it your best everyday and the appreciate the efforts you make.

en⋅dorse

  

?verb (used with object)

1. to approve, support, or sustain:

1. make effort

2. endorse your effort

you will do more, the issue is NOT how much more, and you will feel better about your self

good luck

[chipper]

You are at the right place!!! Dinet is sooo supportive. The people are caring and even sometimes funny. I am pretty new since my back slide and have been uplifted and informed. I love all of these dys. suffers. They flock together when someone has a problem of any kind.

Bless you, Mary

[erikainorlando]

I think we all can relate. I am sorry you are struggling. It is very difficult with kids (difficult without them too I am sure). I walked in my daughters cheerleading party this afternoon just to pick her up and saw all the other moms helping out. I felt guilty....but I felt so sickc from the heat that I couldn't even try to explain myself. I" just had to get home. Sometimes I snap at my kids out of frustration that I can't do more for them (kind of counterintuitive) then I feel very very very guilty. I hate that my son (11) worries so much about me.

It is just a drag. Please post...I don't think it helps us living in our heads with no one to bounce things off of. Hang in there. We are all here for you.

Erika

[Maxine]

I fully understand, and I was house bound for about 5 months. It's very depressing, and I can only imagine what you are going through with your husband leaving. It must be difficult for your boys too. It's bad enough going though this with my husband around, and I could not imagine dealing with all this without him.

I hope you get the help you deserve on your appt. with your doctor on the 20th. Getting you to a more functional state should be your doctors first priority. Fortunately I'm not house bound now, but it is a big challange getting out, especially on my own. There are times I worry if I'll make it home OK. I always have my cell phone on me at all times. Another thing I do is make sure I have a lot of water with me, and sometimes stop for a v-8 because of the high sodium content. It's three servings of vegetables too--- .

Do you have compression hose? This helps a lot of people with POTS and OI get out more. I should wear mine more, but I have a system of sorts that gets me by. I definately have blood pooling, and I should wear them more, because it does make a difference. They get hot and uncomfortable, and that is one reason I'm not very compliant. However there's lighter weight hose, and knee highs that I want to look into.

Can you and your sons possibly find help with somwone who can counsel you, and offer support with chronic illness? Although this website and others can offer support on line, it would be nice if you could get some support locally.

It's a tough world were in, and it's harder for those who don't have a spouse to lean on and endure the trials of chronic illness together.

I wish you peace and happiness, and I hope your doctor can help you.

HUGS,

Maxine :0)

[purplefocus]

Thank you for all your support. I got out of the house tonite and went to cracker barrel with my boys. It was so hard but I made it and I think they really enjoyed it also. When I left the house, my neighbor asked me had I been on a trip or something that she had not seen me in months. I think I took a huge step by getting out tonite. I am so exhausted but I feel better also if that makes sense. I didn't think I was gonna get back up my steps but I did manage. I really appreciate all of your responses, it really makes a difference. Thanks Thanks Thanks

Paige

[ramakentesh]

weve all been there. its hard butr i just ride it out. THere are usually better times occasionally, and i just force myself out sometimes just to fight it and sometimes im glad i did., try drinking HEAPS of water - i mean HEAPS! makes a difference,

[potsgirl]

Paige~

Way to go! I'll bet it really gave you a mental boost to get out of the house with your boys. I'm sure they saw it as a special treat, too. After awhile, at least with me, I just didn't bother with the make-up and much fuss about going out. To me, it's more important both physically and mentally to get out, even if it's just for a 15 minute walk, or to stop at the grocery store (with supervision and a ride!) I try to plan my week so that I do one 'major' thing most days. I don't always make it, but it gives me a goal. Therefore, I wash my hair twice a week, and shower 6 out of the 7 days. On the days I do my hair, I know I won't have much energy left, because I have long, very thick hair. If I'm going to exercise on certain days, usually Mon, Tue, Thur, and Sat, I know I won't have much energy the rest of those days. Exercise is very important to me, however, so I choose to expend my energy on that most days. If I want to do lunch (believe me, very rarely), I make sure it's not a hair/exercise day. This planning isn't perfect by any means, but it gives me goals and there are many weeks I have to move things around, but mentally, to me it's a huge thing to get out at least for a little bit!

Wishing you the best,

Jana

[EarthMother]

I wasn't getting out at all before I got a manual wheelchair. I keep it in the car and it allows me to conserve my energy while being outside. Before, I would be exhausted just being upright in a store. But now I can push myself around and not feel so POTSY. I still fatigue rather quickly -- but 10 minutes in a neighborhood store now and then is more than I could ever manage if I had to do it upright on my own orthostatically-challenged legs!

Hang in there. This too shall pass.