Tomorrow my new carer Jayne is wanting a test drive in Billy. My Bev is off on hols and having an op on Wed, how very dare she leave me at all…so me, the OH, Sophie the poodle, Jayne and me will all pile into Billy and go for a little ride.
Jayne has to learn how to fasten me and my chariot in, etc.
I told her I tend to be a back seat driver for Billy. She threatened to leave me in the car and go watch Dunkirk by herself. Bloody cheek, eeeeh?
And she wont save me any popcorn, I`ll bet!..dont like it anyway…like eating polystyrene!
Anyroad, this got me wondering…for a sunday thread…howsabout we all tell each other how we get about outside.
I have a practically perfect OH. Mr Sssue is very happy to cart me around. And he drives the car. On our last Motabilty car, we had it adapted with hand controls. I didn’t drive it once. Mostly it’s because I can’t get me outside and into the car together with wheelchair.
So, he pushes my chair, helps me get into the car (transferring is still OK) picks up my feet and puts them in too, folds the chair and puts that in, then does the reverse. He’s much keener on taking me out than I am at going out.
I use my rollator everywhere and manager to get about ok on most surfaces over short distances.
We’ve just got back from a visit to my daughter’s narrowboat, which was taken out of the water for blacking, so had a short walk around the boat club where she’s currently moored. I even managed to get on board, and back off again with a firm push from behind!
Nice to get out and about, as following my Lemtrada treatment last week I was starting to go a bit stir crazy staying indoors.
I have a driving licence and own a car, but seldom drive myself anywhere. I rely on Hubby for that. His car is bigger than mine and can accommodate my Rollator when I need it, or a wheelchair or scooter if things are really bad. We also have a motorhome that we use for holidays and weekends away. I’m not insured to drive that.
Has anyone noticed that MS can ruin your self-confidence? Years ago, before the beast struck, I would drive Hubby’s Lada Niva. It was a four wheel drive car that wasn’t the easiest thing to drive, but I coped with it. Now I can rarely bring myself to drive my tiny Smart fortwo. My confidence might improve if I drove more often, but I don’t have anywhere to go .
I use an electiric wheelchair outside. We don’t drive so rely on taxis a lot. and buses. But when coming back with chair and any more than one bag it has to be taxi. We like to travel and can go by train but takes military planning these days - assisted travel, where are the loos, does the hotel have wetroom?
I think it’s increasing disability plus lack of use which has taken my self confidence. For the first 4 years after diagnosis (which happened 5 years after the first symptoms and tests) I drove all over the country for work. I had a rather gorgeous company car and drove it all over the place. And these were the days without sat nav. I had meetings with complete strangers and ran training courses everywhere from Penzance to the North East. My confidence at that point was at an all time high. And I had some disability but probably only about 2.5 - 3 on the EDSS, I took my Copaxone with me everywhere and all my drugs including Modafinil for fatigue.
Even once I stopped working, and had my (own, much less sexy) car adapted for hand controls, I still drove myself. But it was when I became much more disabled following a really dreadful relapse and became a full time wheelchair user that I stopped driving. And the following year my husband retired and was home all the time to drive me everywhere I needed to go. The two things together took away my independence and my confidence. That was 4 years ago and I’m OK with not driving, and have come to terms with being taken everywhere (I let my hair grow long until this year, I couldn’t bear to be taken to the hairdressers, but I’m over that now and it’s short again). I still don’t really like going to new places, and I’m scared of holidays. It’s not just the wetroom that a hotel has to have, it’s a decent shower chair and enough space for the wheelchair. Plus I’m a bit nervous about changing stoma pouches in strange bathrooms.
But I’m OK with it. So long as Mr Sssue stays healthy, then we’re alright. And I watch over his health and wellbeing very carefully.
Thank you for all your interesting and varied replies.
See how we all cope somehow, with whatever is chucked at us!
We`re a real Icene tribe!
Been out for Jaynes test drive. She flapped a bit as hubby showed her how to load me in! I told her to remember it all, as I cant help with whats fastening me down in the back, only what`s in front of me!
Anyway, off we went and she stalled Billy twice, but after that quite enjoyed the run.
Depending on how I’m feeling and depending on where I happen to be going afterwards, I either use the crutches to go from the house to the car or I use the wheelchair. I also use my electric scooter (aka my quad bike) for doing stuff in the garden. My door sill is only 2" and I thought I could negotiate the door sill whilst seated in the chair. Up went the front wheel and I did the reverse of going over the handlebars! We have wooden flooring just by the front door and the back of my head hit the floor with an almighty whack. Thankfully no blood. Although it was almost lunchtime, my teenage son emerged slowly from his bedroom, rubbed his eyes and said “thanks for waking me, Dad. What are you doing on the floor? Need a hand” Derek
In December, I was able to totter carefully to the car, touching the house wall for support. Depending on the distance, I was then able to pop in somewhere briefly, using my walker in the car. I had my motorised chair in the car for shopping or covering longer distance.
Now, I can’t make it to the car without taking hubbys arm. The chair is no longer optional, but a necessity. Everything has moved along SO quickly. Scares the he’ll out of me!
Fortunately or unfortunately, I didn’t fall out. I just fell back whilst still in the chair and cracked my head. My head’s sore just thinking about it again.