Discussion in 'Fibromyalgia Main Forum' started by cats2595, May 17, 2006.

  1. cats2595

    cats2595 New Member

    Having had CFS/fibro for 15 years, I still have not come up with efficient ways to go to things I feel I want/need to attend. My son is graduating high school this year, last night went to an awards ceremony. After an hour of twisting in my seat, trying to get sit still and adjust to the hot auditorium, I started going in and out to get a little air and finally missed seeing my son get his award because it was going into the 3rd hour of the program.

    I have vision problems, jerky vision (oscillopsia), which makes it hard to focus in busy places and have balance problems. My vision was really bothering me last night in the crowded auditorium and the heat was making my muscle weakness worse by the minute.

    For the first time a few weeks ago, I used one of the motorized shopping carts to get out with my son and his girlfriend at Lowe's (garden shop) because I wanted to see if I did better getting around than trying to lean on a buggy. It was the most pleasant shopping trip I have had in years (considering I don't do much shopping at all anyway.)

    I wondered if any of you have the motorized scooters to get around in public and how that works for you. I noticed a parent at the awards ceremony last night had one (I don't know her reason/condition) but I thought, at least I could sit comfortably and if I needed to go in and out, I wouldn't be so tired plus sitting outside the auditorium was on a bench and that was not comfortable either. Also, after using the cart at Lowe's, I think that might be what I need to be able to handle things I need or want to go to and to get out a little more.

    If you use the scooters, any recommendations on brands or how the people work with you, etc?

    Thanks to all who respond.

  2. Adl123

    Adl123 New Member

    I use scooters wherever they are. I could not shop without them.

    I have a small "Star" scooter that I can take apart and put in my trunk. It helps for places like the mall, but it is not comfortable and will not go up more than a 5% grade (Whatever that is). Anyway, I live where there are hills, so I'm going to have to get a 4 wheeler in the future. It also cannot go over curbs.

    If you are going to get one. I would suggest getting one that is comfortable for you. You can try them out at a scooter store. Also, some hospitals have scooter sections and a person trained to help you in buying one.

    If you have the right kind of car, you can get a hoist to attach to the back, and then you can take it everywhere you go. If you want to get fancy, you can get a little canopy with a fringe that will shield you from the sun. I met a lady at a festival who had one of these, and she said tha she went all over on it.

    Good luck. I think you are in for great times.

    Oh, yes, my mom had one when we lived in San Jose. She used to go all over, and even took it on the bus. One day whe went to San Mateo, which is over an hour away! It allowed her to visit all the little shops without having to do the walking. She even made a new group of friends - she called them her "Scooter Friends".

  3. cats2595

    cats2595 New Member

    Thanks to both of you for your replies. A few more questions, if you don't mind. What is your diagnosis? CFS, fibro, or something else? Are you on disability? How long have you been sick? Do you drive?

    I am blessed to be able to work from home (as a medical transcriptionist.) If not for being able to work from home, I could not work. I worked as an MT for a large OB/GYN clinic for 13 years until I got sick in the 12th year, tried working another year, hoping I would get better but when I didn't, starting working from home and have done that since. I'm a single mom supporting myself and my son for the past 7 years and would like to work as long as I can even if it means working and not doing much else. My PCP and my ENT doctor just within the past few months both asked if I had considered disability. I explained that I make about 3 times as much as I would draw and would like to work as long as possible, at least until my son finishes college and then see where I might go from there.

    I just started reading and posting questions on the message board about a month ago so I'm sure I have questions that have been asked and answered before. I started a support group in my town when I first got sick in 1991 and for several years, felt this was helpful but then it seemed to be just a gripe session so I didn't go as often and finally, the support group stopped meeting altogether. I really didn't know this message board was out there until I have felt I was getting worse and started searching the net for CFS sites. Years ago I subscribed to the CFIDS Chronicle so this was the first site I checked out. I immediately found it helpful when I posted a question about muscle weakness and realized that is a symptom many people have.

    I realize this message board can be a good support system and plan to check in more frequently.

    Take care and hope to hear from you soon.

  4. SandraJean

    SandraJean New Member


    I've been in a wheelchair full time now for over two years and about a little over a year ago I got a motorized scooter too. I use my wheelchair in the house, but my scooter I use outside or wherever I go, like to the grocery store, mall, walking my dogs, etc. I have a Pride Victory and it can actually go for about 20 miles. I have taken it down to the grocery store and the drug store from my house. I also have a side door lift for it to go in and out of my car.

    I really don't know what I would do without it now.

  5. cats2595

    cats2595 New Member

    Thanks to everyone who has replied to my inquiry about using motorized scooters/wheelchairs. Loved wamps poem.

    I guess I have been putting off getting one because I kept thinking I would "get better." I have family members who do my shopping and when I do get out, it is for a short time and on a "good" day" but I would desperately like to become more independent. I'm calling the medical supply shop here today to check on this and going to my PCP next week to let him know what I have decided to do and see if he has any information on where to check on them also.

    You all have given me the "push" I needed. Thanks for your support.

    I have found, though, that although most of my family is very supportive of this next step, the person who I thought was my best friend of 20+ years is not supportive at all, seems embarrassed that I am even considering using a scooter and even said "those people who use them in stores get in my way!" I guess you find out who your friends are.

    Take care everyone, thanks again and now I have to get to work. Although I work at home, I try to stay on a schedule so I can have a nap in the early afternoon, work for a few more hours then have time with my son and his girlfriend in the evening and time for myself to just relax and rest.
  6. Adl123

    Adl123 New Member

    Well, I have multiple diagnoses:CFIDS; Fibro; Diabetes; Osteo arthritis; Rheumatoid arthritis; congestive heart failure; spinal stenosis etc....

    I qualified for SSI, but I received no money. They told me I waited too long to apply, after stopping work. You see, I had a disability payment from my work, for a while, and felt that I would be double-dipping if I applied for SSI while I was getting that, because I worked for the state. Well, I surely was wrong! I get less than $100.00 froom social Security and a small teacher's early retirement pension. So, when you decide to stop working, be sure to apply for disability immediately.

    I've had CFIDS since at least 1970. I was able to work until 1993, when I had a "crisis" and had to retire.

    Yes, I do drive. I'm glad I do, too.

  7. SandraJean

    SandraJean New Member


    The kind of car I have is a Dodge Caravan. My husband is in a wheelchair too, so we have 2 scooters. His scooter goes in the back of the van and mine goes in the side. We had to take all the seats out in the back of the van, we only have the front drivers seat and the passager seat. Our car is also handicap accessible with hand controls for driving. I can drive regualarly, but my hubby has to drive with the hand controls.

  8. cats2595

    cats2595 New Member

    Thanks for all the information you have given me.

    As I began to think it was time to get a scooter or chair, I thought I would just use it outside my home but after you comment about having more energy when you used it at home, I thought about how many times I lean against the washer or dryer when doing laundry, lean against the kitchen counter when cooking and realized that it might help me to have more energy if I used it while doing some of my chores around the house. I have someone come in a clean my house every 2 weeks and will continue to do that as long as I can afford it but there are certainly things that I do every day that I could save energy by using a scooter/chair.

    Thanks to all who have replied again.


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