What are your daily rituals? What does your day look like?
When I wake up I have my caregiver get me dressed and then we use a Hoyer to get me into my wheelchair. If you are unfamiliar with what a Hoyer is it is almost identical to a cherry picker that you would use to pull the motor out of a car. The difference is it has a 4 Point connection system instead of just one hook and you hook a sling that cradles your body into it. It uses Hydraulics to lift you out of bed and gently lower you into your wheelchair or whatever you need. I recommend using a Hoyer because it will save your caregivers from having back problems.
Once you are in your wheelchair it is critical to check and make sure your cushion is inflated properly and is not too hard or soft. If you do not do this you are putting yourself at extremely high risk of getting pressure ulcers. Next you check everywhere for wrinkles in your clothing to make sure you’re not sitting on anything that may cause irritation. Once you are confident that your cushion is inflated properly, you don’t have any wrinkles, and you are properly positioned in your chair… Go ahead and go about your day.
If you suffer from muscle spasms like I did for so long… Don’t miss medication doses and make sure you drink tons and tons of water. Dehydration and missed doses are going to make the muscle spasms significantly worse. So make sure you are due diligent and paying attention to that. I had a severe case of spasms and nothing I could ever do got rid of them completely until I finally got a baclofen pump implanted in my abdomen with a catheter dripping medicine onto my spinal cord.
The next best piece of advice I can give you instead it is highly important for you to rely on your caregivers! Not your friends or family! Especially not your spouse! You need to make sure that you have quality time with your friends and family that does not involve taking care of you! I cannot stress this enough and is likely why I got a divorce. I had to learn the hard way and by the time I learned it was too late.
You will get bladder infections but, that doesn’t mean they need to be treated. Also let your urologist treat them not the ER doctor or your primary physician. You’re urologist knows best and that is what he specializes in, it is literally his job. Only treat them if you are having fairly serious symptoms. Bacteria in your bladder will learn how to fight against the antibiotics if you take them too much and they will not work.
Don’t be afraid to do things on your own. Things as small as going around the block by yourself or getting the door. It’s going to help you feel more independent and allow you to preserve your dignity. That means it’s okay to be alone for 20 minutes here and there or an hour, heck sometimes I spend two three four hours by myself. Just set yourself up so that you’re good for the allotted amount of time to make sure you’re not going to need anything. As long as somebody’s nearby then don’t be afraid to do it. Even if it’s just a phone call away. They don’t have to be in the next room, I promise… You’ll be okay, not only is it good for you it’s good for your relationships.
Last but not least, you need to understand that because you are in a wheelchair, especially a power wheelchair, people are going to look at you and instantly stereotype you. Nine times out of 10 they think you are mentally challenged just because you are in the chair. Don’t let it bother you though, remember you’re just a normal person, just as smart as everyone else, you just can’t walk. Help other people understand that so that you are not consistently stereotyped by strangers. I remember when I first broke my neck, I felt like people looked at me differently and I realized how I looked at people in a wheelchair before I broke my neck. I did it too. I think it kind of just comes naturally to some people. It’s just the natural way of thinking. Even though you are a kind gentle soul you accidentally put people into categories without even realizing it and you don’t realize it until you’re put in that position. So stop and think about that sometime. When you’re at the grocery store, the gas station, or even out to eat at a restaurant. It’s all going to be different but don’t worry you’ll get used to it and you always have the opportunity to approach somebody and help them understand why it is you are in the wheelchair.
Whatever you do don’t give up and enjoy your day ! Oh and Remember… If donkeydidit… You can too!
Uncle Donkeys Tales 