[Freesia38]

Hi,

While I wait for my T-spine MRI in 4 weeks and am in 'limbo-land', I wonder what can I do to help my mobilty? (well with or without a dx, I still have sx limiting physical activity!)

I had to go up to the 3rd floor of a big shopping centre today, and it was so far! My legs got weak and I was really walking funny. 2nd time it's happened that badly at the shops and I either had a few 'looks' from people like I might be drunk, or they avoided looking at me. (this is very new to me).

I know I can hire a scooter at a big centre, but I just can't bring myself to do that yet.
I know some of you here have been in scooters for a while, but how did you feel the first time?

I also went to my doctor to ask to fill out the application for a disabled parking sticker. It seemed so flimsy - without a dx, it might well be rejected.
Over here we do have a second option of a sticker that allows you double the parking bay time if you need rest periods while shopping. I might get that one hopefully.

I did buy a phone headset back in May so I'm handsfree for long chats - my hands don't get achy/tingly when on the phone for a while now!

Just a funny end note - well not so funny: my sister who has "probable MS" (only 4 brain lesions!) was in the middle of an MRI and it broke while she was in it!!! AHHHH!! Out she hopped while they had to fix it. That might be the same one I'll be in in 4 weeks!

[kicker]

I accepted the crutches, wasn't crazy about the walker, but noticed my mall shopping had more and more rest breaks. Weekends DH took me in manual chair, but we did not look and linger much, He was all business (Men!!!!) get in, get out.
Now I'm permanent in chair, like dependence power gives me, insist on power travel chair when out. Chair gives me more freedom in house. Make toilet on time, go into rooms and do things I absolutely couldn't before. Canes, crutches and chairs do draw stares but you are still you, just using tools. Don't let others take your mobility and freedom because they're staring idiots.

[Aarcyn]

I use a walker and an electric chair that breaks down into 5 parts to place in the trunk of my car, depends on where I am going.

I still do not like to use either (I hate MS, I want to walk like others), it is necessary so I am just getting over my hatred. It is a choice, stay home or go out.

Either way, it seems people get startled to see me when the elevator opens. Funny how I hear, "I'm sorry" a lot as they get out of my way.

I am sensitive to it, overly sensitive. But I am learning that it is only me and I have control over my feelings. I prefer to go to parks, the theater, dinner with friends, etc.

If it takes a walker or a chair, so be it.

[SallyC]

Originally Posted by Freesia38

I know I can hire a scooter at a big centre, but I just can't bring myself to do that yet.
I know some of you here have been in scooters for a while, but how did you feel the first time?

Imbarrassed, until I was finished shopping and could hop in my car and go home and not be exhausted, from all that walking. ..Until then, I used a walker with a seat. when I got tired, I'd turn it around and sit down and rest.

Whatever it takes to save energy, Free..

[doydie]

I know I have two choices. Either suffer while shopping or not go at all, orrrrrrrrr give into stubborn embarrassed self and rent a scooter at a zoo/park. Our mall isn't big enough to use a scooter but I do have a manual if I had to use it. It did take awhile to get to this place though.My family uses my manual more than I do and I hope that it continues that way. But I always know it is there if needed. But the guys at Freedom Medical are all very familiar with me and my 3 day rentals when I travel.

Good luck in your growth and decisions.

[kicker]

The unspoken - there are things "nice" people don't talk about. Seems I'm not nice. In Dejibo's brown thread I breathed a sigh of relief , yes, yes, this is a problem. Poor Dad lay in bed for a week with Sciatica then some weeks more. My nice family certainly wasn't going to talk about BMs. The other, well with a jug a brother purchased, he could do it himself. I saw Dad's blue eyes were now brown, in a no-nonsense voice, ( I should have been a nurse - as an elementary school teacher guess I got some training in no-nonsense), OK, I said picking up the bed pan, let's use it. So he did.
Anyway, my point is, there is a crip hierarchy (we all know that, we should know that) - walking trumps canes, canes trump walkers, walkers trump wheelchairs (I do play poker sometimes - but that sounds like bridge). If I allowed it, as a chair user, I could be low hierarchy. I hold tight and tell some (some who aren't even interested!!) I'M SELF-TOILETING! That trumps self and always catheterized. Hey, I got to hold on to something. Wheelchair use is a very prickly use and transition thing emotionally. It is.

To quote Popeye, I yam who I yam. Put me in a hierarchy, I'll run your toes over. Whoops, I'll say, what?? Being in a chair means I work a little harder at being me, so no one forgets. Wheelchairs ain't for sissies! (to mis-quote Bette Davis who spoke of old age)

[braingonebad]

OMG, Kicker, I love you.


You so rock, woman.

Meh.... I'm out. All I gots is a stick and a pair of deuces. Anyone else need a drink while I'm up?


Freesia, Use any tools that help you live your life. I use a cane as needed.

My dd was a young teen and we were out at a huge mall shopping. she was the 1st person who noticed my *drunk walking*. I felt awful - for her. She was embarrassed and worried for me.

I think that was a big part of helping me get over myself and just use the dang stick, you know? It's not all about me. It's about not falling down and hurting myself and freaking them out, not embarrassing or worrying them.

[kicker]

MS sure ain't for sissies!!!!

[ali12]

Hi Freesia,

I'm sorry to hear that your trip to the stores was so hard for you!

I totally understand the feeling of you not wanting to get a mobility scooter to use in the stores. I was like that when I fell ill too and made myself worse by trying to walk - stupid, I know!!! Eventually, it got to the point where I had not choice but to use a wheelchair full time. My Doctor did a procedure on me (nerve block) to try and dull some of the pain in my foot and I had pretty bad complications from it that meant I had to use a wheelchair full time. The block took me off my feet complenty and I lost all co-ordination in my legs.

I HATED the fact that I had to use a wheelchair and I became pretty Depressed. I was only 12 years old at the time and got very self conscious. I hated going out in public as I would often get nasty comments from my so-called "friends" and thought everyone would be looking at me ... they probably weren't but thats how it felt.

It took a while for me to accept that I had no choice but to use the wheelchair. I don't think I ever come to terms with the fact but deep down, I knew I couldn't do anything about it and that it wasn't my fault. Whenever I tried to walk, I fell straight to the floor and had to have my mum carry me everywhere so the wheelchair was the only option.

After going under an intense Physiotherapy course (PT), I am now able to walk short distances. I am still unstable at times but it makes such a huge different just to be able to walk a little !!

Just a thought, have you ever considered using a cane? My PTs suggested using one of those before I lost the co-ordination in my leg fully but my doctor said that crutches would be better for me. They are quite stable so should help you and might make you feel a little better than having to use a scooter??

I totally understand how you are nervous about getting a scooter but you have to think about yourself! Theres no point in trying to make life harder for yourself just by trying to walk! It doesn't mean that you are giving in and I think it shows that you are putting yourself first as long as you remember to try and move as much as possible!!

I wish you the best of luck in getting a diagnosis - I know how stressful it can be. If you ever want to talk to someone who can relate to what you're going through, please feel free to PM me!

[Aarcyn]

Originally Posted by kicker

MS sure ain't for sissies!!!!

I second the emotion:

Kicker, you rock.