When I was diagnosed with MS, my doctor told me that I was lucky, that so many options would have been worse.
I know what he was thinking. Some of the things they tested me for including ALS and Lupus are virtually death sentences and pretty uncomfortable in the process. With MS, especially relapsing and remitting MS, I'm fairly healthy most of the time. I am especially lucky that I have such a mild case.
Yeah, right.
You see the doctor said that I probably knew people, saw them every day and never even knew they were MS victims. To the casual observer, the signs of the disease in many people are almost non-existent.
Well guess what. This is my life and I am not a casual observer. I am acutely aware of everything that I cannot do, that I have to or that has changed about my life because of this inconvenient disease.
As a kid, my step-father called me a mountain goat, because I loved to climb on anything and I could usually find a path up even the steepest hill. Now, I'm lucky to keep my balance walking across an uneven parking lot.
I decide not to go on outings with friends because I can't walk more than about half a mile without needing to stop and sit my down for my back. The back spasms cause me to trip and stumble.
When I do walk, I can't walk rapidly... I used to be able to stride with a purpose.
I only drive short distances. From the time I got my first car, I loved the freedom it represented. My first car was a rattle trap I bought for $250 and I still took it to Louisiana (500 miles) to go visit a friend right after I moved to Illinois. It had no heater and the window wouldn't roll up all the way, but I was free on the Interstate.
Now, if I drive for more than an hour, that stumbling is in full force, and I can't enjoy arriving at the destination. After about an hour of driving, my foot seizes up anyway and I don't feel safe driving for much longer.
I love hiking and backpacking, but they are pretty much out now. Going to fairs or the zoo requires planning and lots of rests breaks.
I am thankful that my disease is not as bad as it could be, but that doesn't mean ti isn't bad for me.
And in the most simple of phrases, that sucks!
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About Me
- Cin
- I am a writer that dreams of greatness and who believes that we can all change the world.
2 comments:
Wow, I had no idea it took such a toll. You do seem outwardly healthy and are always talking about going to exercise or eating these great healthy foods. I never would havve suspected the battle you wage. You are to be admired for the example you set. One does not have to be a saint to be a role model.
I COMPLETELY understand!!! I was diagnosed about 4 years ago (a week before my 31st birthday).
I went to college for horse training, I can't ride anymore. I used to be in bands (as a singer), I can't handle the late nights and the energy it takes to perform anymore. I can't remember lyrics either. I used to be a part-time bouncer... (just for fun, it was a neat job for a girl)... now I'm a full time stumbler.
I used to LOVE hiking with my dogs, driving to another state just for fun, working in the garden or the yard all day... There are SO many things I used to do... now it just makes me tired thinking about it! If it's hot out? Forget it! I need AC or I turn into a pile of incoherent clumsy mush.
I guess it could be worse... but it sure is bad enough. I feel like a 70 year old retiree... I feel like my life has been stolen.
If I stay up late with friends talking I get so tired I can barely carry on a conversation let alone drive home!
I get so jealous seeing people my age having active fun. I want to run around. I want to ride a bike... or just read a book without getting a migraine!!
I have accepted that a lot of the dreams that I had are just not going to happen. I used to volunteer every week with the disabled... this is the crappiest karma EVER!
I cry myself to sleep too often. A brave face is easy to have in the light of day, but in the quiet of 3am it just gets too overwhelming.
Parents saying "I know someone who has MS and she's fine" doesn't help. Getting offers to go places from my friends and having to turn them down sucks! (I guess I am too good of a "health faker" for my own good).
Yes, it could be worse... but it could be SO much better!!! I didn't think I'd be so old so young!
If misery loves company, MS is ecstatic! There are a lot of us out here who are in the same leaky boat... Not that it makes it better, but we understand... and we hate it too.
HUG
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