Little by Little

I am making progress. I sometimes get down on myself and feel like I am stagnating, but then I have to remind myself how far I have come!

A year ago I couldn’t drive, didn’t have a car, didn’t have Wanda the Wheelchair, kept on having to recover from surgeries, and was still weak from malnutrition/dehydration because I had only just gotten my feeding tube. I hadn’t even been officially diagnosed with Marfan Syndrome yet! I was too weak to do physical therapy and spent most of my time at home in bed. When I did go out I had to recover for daaayyyyss afterwards.

Now I can drive myself around in a car that is all mine, with Wanda in the trunk for wheeling around destinations on longer outings. My feeding tube fuels me up so I only have to eat when I feel up to it. I am kicking ass in physical therapy (PT). And…

Yesterday I got a membership at my local YMCA! They have a heated pool that will be great for conditioning my muscles and joints. They also have the same type of exercise machines I use at PT and free group exercise classes. I am excited to keep working on my body’s strength. I am sore from working out yesterday, but I don’t feel completely wiped out like I used to.

Resting under a heated blanket this morning to soothe my achy muscles, but then I am getting back out there!

I know I still am, and will continue to be, chronically ill. I know I will still have bad days where I can’t get up. Now I just have some hope that I might have less of those days. Hope that maybe I can finally go to college someday.

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Acceptance Is A Powerful Thing

Some friends don’t know how I cope with having multiple health conditions. Conditions that have required daily medications, tests, procedures, surgeries, a feeding tube, and physical therapy.

Acceptance. That is how I do it. Once you find out you have illnesses that have no cure, you can be angry and spend all your time wishing this wasn’t your life, or you can accept it and start building yourself a life that accommodates your disabilities.

I have my moments of anger and frustration of course. It’s okay to get upset sometimes. I will have a good cry and then pick myself back up. Having a supportive partner and a caring mother helps.

Walking long distances is extremely taxing for me, so I got myself a pretty, green wheelchair (I named it Wanda). Some people see wheelchairs as something bad, something to avoid having to use at all costs. I love my wheelchair. For me it means freedom to go out with my friends and not be exhausted after 15 minutes. It means going to the aquarium with my partner and getting to see the whole thing.

I have trouble doing some things myself and don’t always want to have to ask someone else to do them for me. Solution? Applying for a service dog! I don’t have one yet, but I am in the application process. Having a service dog would also make me feel more confident about going out of the house on my own.

One trick I use to help myself accept my medical equipment is to make it all look cool/cute. My wheelchair is a shimmery apple green with patches I have been sewing to the back of the black upholstered seat. My compression socks are all striped and colorful. I modified a cute little backpack to carry my feeding pump around in and I bought cute tubie pads off Etsy to wear on my tube site. I have a collection of canes of various styles. My water bottle I carry everywhere has stickers on it. My wheelchair gloves have rainbow skulls on them.

My P.O.T.S doctor says he often can’t get his teen patients to wear compression socks to help with their circulation. He had never seen colorful ones like mine before. Of course they will be less likely to wear them if the socks are that weird ‘nude’ shade that is the color of a dead Barbie doll! I told him Amazon sells all sorts of fun ones. I guess athletes wear them to help with muscle recovery, so there are a lot of bright colored prints to choose from.

If your medical equipment and mobility aids are plain, ugly, or don’t match your style you won’t want to use them. Make them look rad so you will use them with pride! I get compliments on my socks, canes, and wheelchair all the time.

I just do the best I can to shape my life into one that works with my limitations. I hope those of you out there who are sick like me can too. ❤