to go out or not to go out...

[persephone]

I'm 23. I feel like I'm a caged a animal. I'm home from University and my parents won't let me out to do ANYTHING in case I faint. Because I can't walk round the shops wihtout starting to ache/feel faint etc, they just won't take me. Full stop.

But back at Uni, the lovely people I lived with got me a wheelchair from the red cross and took me about in that when I was too ill to walk. Atlesat I was getting fresh air that way! And seeing something other than the same four walls of my room.

So, whose way is right, in your opinion? My mum and dad seem to be in denial, and won't even hear of a wheelchair. They'd rather I stayed in the warm and didn't risk going out on a bad day like today when I'm very achy and faint.

But I would rather go out in a chair, as I couldn't hurt myself really, and would get some contact with the outside world...

What should I do? I can understand why my parents are worried, but I need to have a life!

[MomtoGiuliana]

persephone

I understand where you are coming from. I think you are so correct that a change of scenery and fresh air does great things for the spirit, which in turn is a positive healing force. As soon as I felt well enough (and I must say at the direction of my doctor!) I did spend some time outside every day if I could--even though still homebound and unable to walk much. I started to get better in the spring, which corresponded nicely with the weather. I can certainly understand your parents' trepidation if the weather is really nasty. However, on days when it is milder, and you aren't feeling too unstable, see if they will help you to go outside for a bit--even if it isn't to any particular destination. It's good to be aware of your limits, though. Don't over-push yourself to do things. But, I do think that for most people with this condition, pushing yourself a little bit (attempting gentle exercises/movements, for example) can be helpful to regaining strength and conditioning that is necessary for eventual recovery.

Katherine

[StaceyYount]

Hi,

For the longest time we resisted getting a wheel chair. To my husband and I it was a realization that I was sick and still to sick to get out. He use to carry me into doctors visits. But one day he went to the flea market and bought a chair. It helped his back and I was able to be less tired when we did attempt to do things. But in saying that if you are having a bad day going out may make that day even worse. But sometimes you just have too I know. I think that they get scared that we are giving in to our illness and it is not that we are just coping as best we can. I still walk to the bathroom and back and for me some days that is really hard. The wheelchair helped me and I think if you explain that to your parents they might be more willing.

Hoping you are having a good day!

Stacey :-)

[corina]

Hi persephone,

I do agree with Katherine and Stacey: going out in your wheelchair on a mild day can make you smile for a week!!! It's sooo important to be able to go out. I'm in a wheelchair as well, and it took me a really long time to accept that. BUT I sooo enjoy being taken outside any time. When I left the hospital some time ago, it started to rain and my sister who was with me was a bit worried but I so loved to feel the rain, it was so long ago that I felt rain!!! And as we all know, rain doesn't kill you. Ofcourse you have to be careful with the weather but being in my wheelchair made me feel being part of life again. Maybe you should let your parents read these reactions so you can talk about it and maybe convince them that you NEED to be outside when you are feeling up to it. Good luck,

Corina

[yogini]

I laughed when I read your post. My parents (who were just visiting for the holidays) are really overprotective too and barely let me go out in the cold. I can see how you are going a little stir crazy.

I agree with Katherine that it's helpful to push yourself a little bit, without overdoing it. Maybe your doctor can talk to your parents and convince them it's a good idea for you to spend some time out of the house? You could start with something small (like just going right outside of your home for 5 or 10 min every day) and then build up to going to stores and other places you want to go. If they are having trouble with the wheelchair, maybe it would help for them to think of it as temporary - as if you had broken your leg or something. Hopefully you won't need it after you see the POTS doctor and get the right medicine.

Good luck,

Rita

[Ernie]

Hi,

I agree that to go out in a wheelchair is better than being a prisoner. Do you have friends that could take you out?

I think with time your parents will get used to the idea.

Ernie

[persephone]

Thanks everyone! Kind messages of hope as always

The problem I have at the moment is all of my friends are friends I have made through university. And I live 500 miles away from there, so my parents are my only real access to the outside world. Sad, I know! When I'm at Uni I never get a minute's peace, all my mates phone and visit and take me out the entire time. I'ts a wonder I ever got my degree really! But back here, it's the total opposite. I guess that also adds to my feeling cranky...I really resent feeling so cut off. I just don't know when I will be able to go back to Uni and see everyone again. I missed my last week of my last term a fortnight ago because the hospital kept me in, and nurses said they were witnessing heartrate changes in my telemetry but then the consultant let me out with no answers....so I never got to say goodbye to any of my friends. I wouldn't have minded that sacrifice if it had been FOR a REASON, but instead it was for nothing. I'm still reeling over that

At home,I live in the suburbs so any time I want to go anywhere, I'm relying on a bus (not that I'm allowed out on my own just now!) or my mum to drive.

I don't feel I need a wheelchair all the time, it just seems to me that on days when I'm bad, like today,getting out would help. But I've been stuck in ALL day which just makes me feel even lower. My mum and dad say I'm in no fit state to go anyhwere. My GP said this morning that I have to indulge my parents abit because it's perfectly understandable that they're very worried.

I just dunno what to do for the best. I don't want to upset my folks. They're lovely people but they spend the ENTIRE time worrying about me. It doesn't matter how many times I tell them to stay calm, they never do because they're fretters by nature...

Anyway, thanks everyone for the lovely replies. HElpful as always! I'm so glad I found this forum. I don't know where I'd be without you all. you're my lifeline!

[MomtoGiuliana]

persephone

Hope you share with your parents the responses you received to your question. I only want to add or emphasize that light exercise is essential to re-conditioning your body. Of course you can do this inside on days that are bad, but fresh air is healthy. Where you live is it possible just to walk around a bit outside, as a first step? Unfortunately, re-conditioning and healing from this condition is a very slow process. Of course you miss your friends and your life at the University! Hopefully in the coming months you will find yourself to be able to do more independently. Until then, try to accept where you are, and live each day with the hope that you are going to slowly improve--hard as it is. As far as your parents' worry--hopefully they feel assured, at least, that what you have is not life-threatening and you have a great chance of tremendous improvement. Again, you will likely improve more quickly with some light exercise, if you can tolerate it!

We're here for you.

Katherine

[justme]

You need to do whatever you are comfortable with. Personally, my wife will avoid a wheelchair at almost all costs, although she has used one when her family was in town and she didn't want to ruin their day. She tries to get out as much as she can (as in outdoors) as it makes her feel alot better. With the colder weather, she is not as apt to want to go outdoors, but makes an effort in any case.

If you are comfortable in a wheelchair, then go for it. You need to enjoy everything about life that you can. It's way too short.

[Guest tearose]

Dear perse, only you can really know what you can and can't do! Trust your instincts and take small steps. I suggest you ask someone to go to the pharmacy and purchase a "seat cane"! It is one step between walking with a cane and a wheelchair. IF you are able to walk a few feet you can walk, then sit down to catch your breath, then stand and walk a little more, than sit again, and so on... Mine is very light weight and has made it possible for me to do little things around the house when I need to take things slow, keep my muscles a bit active but sit constantly!

take care, tearoe