Looking for some advice

Hi everyone. I hope you are each having a healthy day. I just wanted to ask others in the same boat a question. Recently, I went out shopping for like 6 hours with a bunch of family members. I was on my feet walking around the whole time. When we got home, I realized I’d pulled a calf muscle and was in some decent pain. This lasted a few days. My husband suggested to me that we invest in some sort of light wheelchair type device for outings such as this. My response was that I was nowhere near the point to do such things. I work full time and thankfully am not organ involved yet. I discussed this with my therapist later that week to which she posed the question, if you can use something to preserve your energy and body, why wouldn’t you? My response was that I am 30 years old and using such an assisting device would make me feel truly disabled. I’m really struggling with this choice because I want to preserve my independence as long as possible. But am I just being stubborn and making things harder on myself? I’m just curious what others’ opinions are on this topic. Thanks everyone. Ps. I am so grateful to have this support system and view you all as friends. Thanks again.

I’m 21 and have gone through this struggle as well. My doc. Gave me a prescription for one for the fact I get super exhausted and weak and have a very difficult time breathing going long distances. On my super bad days I can’t even use my legs. At first I hated it I am young I shouldn’t be this way. But now I’m so thankful for it I can go shopping with my friends and go on walks. I even had a friend push me in a 5k! I still have hard days accepting it but it has still allowed me to have a life! It will even help attend college this fall. I wish you the best of luck as you decided on what you are going to do. :slight_smile:

I am very glad that you have posted about this. I've been mulling over similar thoughts and issues myself. The other day I was hurting, but needed to do our monthly grocery shopping (always a big, long ordeal). I made myself go look to see if there was a motorized cart available... and there was. I stared at it for a moment before turning and going back to start shopping with hubby. I couldn't make myself do it.

The why of my refusal is a good deal more complicated. Firstly, I completely agree with you about how it would make you feel. It DOES make me feel more disabled than I want to appear, than I want to feel. I'm 38, well below the age of folks who normally should be using those things. It makes me self-conscious. It makes me have to admit there's a problem. It makes me have to deal with yet ANOTHER change in my lifestyle, one I"m not sure I'm ready to face after all the other changes I've been forced into.

But upon talking about it with hubby, I am also realizing there is a secondary aspect to this. I have an intense desire to avoid making those with me uncomfortable. I've been realizing that how other people feel around/about me really strongly affects how I feel about myself. This may sound like a duh, but for me it's a revelation in the midst of many other revelations. I have a very dear friend who I love, who tries her best to deal with my Lupus head on by asking questions and being interested, but I can see that she's quite uncomfortable with the whole thing. I am certain if I asked her to go to the mall with me, but require that I'd have to be pushed in a wheelchair, she'd probably bow out, saying it was best if we didn't do it if I needed a wheelchair. It isn't that she wouldn't want to be supportive, but that she wouldn't be comfortable pushing me around. Yet another friend I have who has faced and beat cancer wouldn't bat an eye at such a suggestion. She'd merrily agree to it and be glad I was getting out with her.

This all adds up to it being VERY confusing. It'd be easier to come to terms with such assistance if I didn't have to thing about or worry about how others would feel about it. That being said, I can't avoid being worried about it either, not yet at least. I'd rather not accept ANY visible means of assistance, truthfully. Even a cane would make me self-conscious, but I am slowly trying to deal with the idea. How scary and hard this all is! ::hugs Kelly:: I'm right there with you hon, and eager to hear what others have to say about this.

I can see both sides to this. On the one side, your husband/therapsit are right that this would help perserve some of your energy. However, you are young and I too would feel like this was taking away from my independence and if this wheelchair became a habit, you might rely on it more than you would have just out of habit. Exercise is good for us but too much can cause problems. To get the best of both, maybe you could get the wheelchair but only use it on those outings where you are already tired? Good luck!

I've used a walker with a seat in the past (when I sprained my ankle really badly). And I'm not even diagnosed with anything yet. I did the same thing you did over the 4th of July. My mom really wanted to go shopping downtown in my hometown, and I walked around with her (outside) for 3 hours. I paid for it for two days! My sons were so sad that I couldn't be a bigger part of their vacation, but I overdid it on a good day :/

I think we'll all be seeing more mobility assistance devices around, as baby boomers get older and still want to stay active. I found a walker with a seat that had hand brakes, a basket, and was hot pink. I seriously considered buying it, because, hello! hot pink! But I didn't.

I'm 37 by the way, and I also work full time, but I have to nap when I get home from work, if I'm going to be able to eat dinner with my family. We make sacrifices for our health, and there's no point in feeling ashamed of something you can't help. On the other hand, I can say these things really easily. Practicing what I preach is another thing. I'm still trying to find a balance ...

Hang in there! best, Jen

I’m a firm believer in the old saying use it or lose it. If you start too early using a wheel chair you really aren’t helping your muscles. Instead of that perhaps just take moments during your outings where you just sit and people watch for a bit before continuing to shop, if you are out with friends in a mall perhaps join them in every other store, resting in the meantime. This is what I’ve been doing for quite a few years with my husband. I’ll be 64 next month and am determined not to have to rely on help with a wheelchair until it’s absolutely necessary. Some exercise is crucial for us, the key is moderation and plenty of rest.

I have the “I don’t care” attitude. I’m a little older…but I take advantage of situations at times. Especially when schlepping through an airport with stuff. We pile my lap with stuff and my husband pushes me while also toting a carry on.
Makes things easier, as I wouldn’t want to lug the stuff. Maybe use it occasionally just to ward off situations like u just had… I also wear my “lupus gear” “proudly”, (hat, wrist band, t-shirt). I want to display this disease to as many people I can touch, so the word gets out and more will learn about it. I wish the Lupus truck that comes to pick up donations would have a big sign on it as it makes the rounds…and if it’s contracted out, slap on a big magnetic sign. Sorry to get off topic.

I think I would use the wheelchair if that had happened to me. I am NOT 30 years old right now (am 65) so maybe my perpective is different!

I use the walker with a seat and a basket under the seat It has handbrakes as well. I realize now that it is my friend and when I walk with it for exercise, I can sit down until I am ready to continue my walk. I felt like everyone else and didn't want to give into using it, but after falling several times I changed my mind. I can't make Lupus go away but I can take advantage of helps along the way. Good luck!

My situation is a little different, I used the seated walker for many months at a time, because of broken feet and ankles...it really came in handy. I only use it now when I'm awfully weak, and off balance. I feel like if it wasn't so hot here I would use it to walk outside for some exercise. I've thought of using the electric carts at big stores like Walmart, Lowe's etc, but then I think there might be someone that needs it worse than me. My husband gets a little annoyed at me when I do walk around those stores, and then I'm wiped out and can't walk for several days afterward. I'm wondering, is it a vanity thing???? Shouldn't we maybe consider using a devise that would help us in the long run....I guess it's just an answer we need to all make for ourselves.

I am 37 and having the same issue. I have finally come to grips with the fact that if I don’t want to miss out on everything, I will need a wheelchair. I want to go the the fair this year. Even with handicapped parking, the walking would make it impossible. However, I refuse to be left out again this year. We have decided that a wheelchair is just a way that I can enjoy the outing too. Accepting this will allow me to live more.

I agree with your therapist anything that saves wear and tear on your body and lets you maintain outings with your family is a good option. As we lupies get older and healing takes longer ( or not at all) we start using whatever work around suits our needs best. I have fatigue and stability issues ( seeing a physical therapist and it helps some) so instaed of washing dishes, cooking etc standing up I sit on a chair. Granted its not the most graceful solution but it beats being in bed half the day with joint and lower back pain. Try not to think about it as confirmation of your disability but a tool that allows you to be the person you want to be. I hope I helped. God Bless .. Julie

Oh and if you do decide to get a wheelchair, look at transfer chairs first they are lighter ( = easier to load and unload) and less expensive than a conventional wheelchair

Having been a teacher of students with disabilities the idea of having to use any assistive device just seems like a slap in the face from my body. However, looking at it objectively, I realize that when I am unable to do activities it's not just me that loses out but it also puts a damper on my family and any plans they may have had.

I went to Maui for my anniversary, leaving out of LAX. Refused a wheelchair on the way there and realized how exhausted I was the following day. This was not fair to my husband and we may have been able to do more than we did because of my stubbornness. So I arranged for one at LAX on the return and wouldn't you know the gates were right next to each other (of course). What I am getting at is what is more important? Your ability to be with your family or your pride? It's a hard question and only one you can answer.

Best of luck and good health.

Drive, Nitro Rollator (walker). It's been a good send for me. I was between a cane and a walker and it's sturdy and has a wonderful seat. Search on bizrate.com. It triples my walking time. Also, I have to suck it up a bit. But if I can keep active, it's great.

If you're going to be stubborn about it, which I am positive I would be too, just try resting frequently. If there's a store where it's not necessary for you to go into, just sit on the bench. Or if you're near a shoe section, take a break on those little seats, etc. That's what I do because I had blood clots in one of my legs, so my leg tends to get tight and in some discomfort when doing long periods of any physical activity.

My husband actually suggested the same thing I actually understand what you’re saying but I think about my family friends that they also need me to be a active mother so if a wheelchair is going to help me have more energy for them then I guess it’ll be the wheelchair my doctor also suggested a wheelchair when we go out to theme parks

Hi Kelly, The fluorescent lights in shopping places often makes immune system go out of whack. I get so sick I often can not find my car. Just can't think straight. I always make notes of where I am leaving my car...but sometimes

still have trouble. I would suggest that you only shop for an hour...go online find what you want and then go pick it up.

I even call places first.

Then enjoy yourself but quit before tired.

Regarding the wheel chair...I use one in airports or I could never make the connections. I rarely use one in shopping but have often wanted to kick a little kid out of their stroller so I could take a ride! Just kidding. Most markets and malls have loaner wheelchairs.

listen to your body and remember you will not necessarily get worse...you may get better. Every day spend five minutes seeing yourself healthy,

happy and pain free. I am 72 now and my worst time was 1992 to about 1994....I still get flares and have symptoms but

not like before. Went 5 years between flares last time. My body has made peace with the immune system or perhaps the other way around. Some days I

sleep most of the day...for the most part everything in moderation. I love clean windows...so I wash one a week.

It is like a meditation slow and enjoyable. I try to do Tai Chi 2-3 times a week...with group or online to 24 Tai Chi posterior view. Harvard Medical has a review on all the benefits of Tai Chi similar benefits from dance. Love and Light Dee

Hmmm. This is tough. It really hits home. Because I broke my ankle badly 3 years ago which required surgery; plates, screws etc. It was dislocated and I tore several ligaments. I still work full time (healthcare) on my feet and come home exhausted and with swollen joints and ankle. I work because I have to but other than that I don’t really have a life. I am so exhausted and in pain I don’t even go to church any more. I have used a wheel chair once when my family wanted to go to some gardens that you have to walk a few miles. I know it isn’t right but I don’t want to admit I need one sometimes. Im really not sure why. If I could use one at work that would be awesome but that isn’t possible. Plus people would drive me crazy with questions. Most of our patients dont realize I even have health issues.

I'm 46, and would have a really hard time trying to use a wheelchair. I'm just not ready for that yet. Maybe if we were going to a theme park, or some other place where there is hours of walking involved, but otherwise no.