Hi again readers!
The good news is that my hands are back, and my eyes are doing mostly well, too. The bad news is that I am still doing the ‘MS Shuffle’ as it’s commonly called when I walk, and most walking in general is just about too much. I’m relegated to baths now since I can’t keep my balance while trying to shave in the shower, but the good news is that I can shave my own legs, so it’s not that bad:)
I’m writing today to talk about an issue I’m having, which falls under the category of ‘MS side effects’, but relates to our work on fitfreedom.
Weight loss is a common side effect of MS, as it comes at patients twofold: the general loss of appetite is a side effect, and it’s also a possible side effect of most MS drug therapies. Combine this with the lack of physical activity, and you’ve got someone who says ‘I’m not hungry’ just about all day. This is a side effect I’ve had tons of personal experience with, as my mom had MS and this specific symptom, and also due to my very large medical procedure in 2003 that left me on some insane painkillers that ALSO killed my appetite.
Certainly, being in the hospital heavily drugged and reduced to sponged water and rice cakes would make just about anyone lose their appetite. Heavy meds tend to do that to a person. But what I want to talk about today is exactly how confusing this weight loss can be, from the patient’s perspective.
My mom had been mostly overweight since the birth of my sister. Not by much, mind you, but definitely more than the 5 or 10 pounds that most people claim they are trying to lose. It was closer to 20 or 30 pounds, and she wasn’t very happy about it. To review, my mom was VERY ill and had many things wrong with her, and the MS that came on when I was 12 and she was 38 was one of the final straws, even though a lot of things followed it.
Until then, she’d been dieting for YEARS trying to lose the weight. Then she got the MS diagnosis and hers was bad. Mine allows me to run, go on long hikes, do Bodyrock workouts most of the time. Hers meant a permanent limp, crooked smile, handicapped parking spaces and sometimes wheelchairs (even though she really hated them). There is a HUGE amount of frustration that comes to all of us when our body stops functioning the way we know it can, just like the frustration of seeing our chests drop, our higher run times or remembering exactly how far we used to be able to walk ro run. It is possibly MORE pronounced when you can no longer do your job, or walk up stairs unassisted and are otherwise generally healthy.
A lot of people blame the lack or appetite that follows the diagnosis of MS on depression, and who wouldn’t? You see yourself as young and healthy and all of a sudden, all that stuff you wanted to do when you retire MIGHT not be possible anymore. That is really upsetting and it’s definitely understandable.
I posted the photo above because that was taken after a LOT of work last summer, when I had to work to get back down to a weight and fitness level I felt better about. I was really excited about the results I’d gotten from just 13 days of the Bodyrock challenge, and excited to see any results at all. In 13 days I’d dropped a dress size.
That’s something to be proud of, to get excited about.
Now, I’m thinner than I was in that photo. I weigh less. I’m not even going to bother measuring myself, since I know what the numbers will be: less than the mid-march numbers. Less than my numbers after the 30 days of running challenge I did this summer. And I am SO angry about it.
I know that one of my goals is to drop the extra pounds, but I am so mad about it happening this way. I dropped 20 pounds the last time I was stuck in a hospital for more than a week, and the result of that was a boomerang-effect weight gain of about 50 pounds as I ate my way through every fast food restaurant within a 10 mile radius to ‘get the weight back’.
Eating food is gaining strength, giving your body something to build with. I am TRYING to eat. I am forcing myself down the stairs 3x per day to at least get something in, even if I’m not remotely hungry. I’m even tricking myself into eating by keeping all of my guilty pleasures nearby… I’ve eaten a pop tart every day, and those things are EXPENSIVE once you get overseas!
I need to eat so I don’t get sick when I take my meds and vitamins. I need to eat or else the food goes bad. I need to eat because I need to eat.
I remember how oddly excited mom was by the sudden weight loss. It was one of the few things she would smile about when discussing her disease. Kind of like how having a parasite makes you lose weight. Oh yes it’s terrible, but look at how good I look. I wonder if she was confused or concerned about it. I didn’t get to ask about it, it was an off-limits topic of conversation. But I remember the weight loss and the odd excitement that came from it, as if finally something had worked.
This is not the thing I want to work.
I am NOT enjoying the weight loss and it’s frustrating to me, since I can’t even work out at the moment to go about it properly. Instead I am fighting the weight loss by eating more than my body seems to want, so I can hopefully get back to my normal size and then if I need to, work from there once I’m recovered.
I know that we should always be happy about progress, but I can’t be excited about this one. I can’t take credit for it, it is something that is happening to me. I can’t call this ‘progress’. There are proper ways to go about losing weight, and undereating is NEVER one that we are going to condone here on fitfreedom.
I have to get downstairs and eat some breakfast, but please keep this in mind: eating healthy and correctly is the best way to do just about everything else.