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.
I saw my gastroenterologist and my dietician two weeks ago. Turns out I had misunderstood some things before. I don’t have to be trying so hard to force myself to eat by mouth or wean myself off my tube feed. It is perfectly okay for me to rely on my tube for most of my nutrition and only eat when I feel up to it.
I had felt like I had to be trying as hard as possible to get back to eating like a ‘normal’ person. It was so stressful and frustrating, not to mention painful for my dysfunctional stomach.
I feel so relieved to know I can relax and stop trying so hard.
My gastroenterologist also upped the settings on my gastric stimulator implant. Cyborg tune-up!
I will be starting physical therapy soon, which I hope will be helpful. My Marfan Syndrome has been causing chronic joint pain all over my body, and it has been getting worse lately.
The summer heat has been rough, but we are getting our AC system that is older than I am replaced this week! Hurray for air conditioning! The guy we talked to about it was really nice and since I have a medical condition that doesn’t do well with heat he promised to get a crew out to us first thing tomorrow morning.
Meanwhile, J and I are going to find somewhere to hang out today that isn’t sweltering hot. Possibly a friend’s house, or a movie theatre.
I know my last post was all about acceptance, and everything I said in that post still holds true, but sometimes we get burnt out from working so hard to care for our finicky bodies.
I just happen to be having one of those days right now. A day where I don’t want to take pills all the time, constantly drink fluids, run my tube feeds, or stay in bed resting all day just so I can go out for an hour or two in the evening. I still do the things I have to in order to care for my body (for the most part anyway) but I am much more grumpy about it than usual. I’m burnt out right now.
In a day or two I will snap out of it and go back to my usual positive self. I think right now I am just feeling mad at my body for keeping me from going to college or getting a job. I want to be out there finding my way in the world like all my friends are.
I got to see a best friend graduate from college on Thursday, and I am so immensely proud and happy for them. I am glad I got to be there to cheer them on. A small part of me couldn’t help but feel a little jealous (and then feel guilty for feeling jealous). I still want that for myself someday. I just haven’t figured out how to make it happen yet.
Whenever I have tried college in the past I would get exhausted long before the semester was over and my grades would all plummet until I was forced to drop out. That was before a lot of my health problems got diagnosed though.
I am nothing if not persistent, so I know I will find a way to do it someday. I’d like to do something in the field of medical research, help people like me get diagnosed faster and treated more effectively.