Stuck in the middle

My muscle weakness has been getting more consistent, and occasionally more severe. It’s in my quads and my biceps. Things like walking, stairs, washing my hair, cooking, etc., make me cringe.

The best way to describe it is it constantly feels like I just finished a vigorous, intense workout. That shaky, weak, tired, just finished working out until I can’t do it anymore kind of feeling.

I usually work from home, but when I do go into my office, it’s at a major university that happens to be an hour from my house. By the time I get the kids to school and get to the university, the parking lots are packed. It’s ridiculous to even think about getting a spot in the lot close to my building.

The only spot I can usually get when classes are in session is a a half mile from my building. No joke, I measured it on google maps. And it’s all uphill towards my office. And even when I leave and it’s downhill – weak quads aren’t much more fun going downhill than they are uphill.

So now my problem is that I don’t warrant, nor want, a handicapped parking permit. I really don’t. I can walk the distance of most parking lots. However, walking half a mile uphill is not exactly doable for me these days. It’s a struggle.

So apparently I’m stuck in the middle. Not sick enough to need (or want) preferential parking all the time, but not well enough to be able to make the trek.

Ugh

10 thoughts on “Stuck in the middle

  1. It’s totally a personal decision, but as a person who has many similar problems with muscle weakness, I can’t say enough good things about having the option of preferential parking when you need it. On good days, I park in general parking, but for those days when I’m barely able to get to my destination, having the option of hanging my placard and parking close is a huge relief. Just one perspective.

  2. I agree with the first two comments. I understand how you feel, and certainly it is a personal decision. I’ve had a disabled parking placard since I was 20. When I can walk, I do; but it’s nice to have as I progress, or when I flare, or pick up groceries/shop at a mall. My limited energy and strength is reserved for getting things done. Now if the issue is appearances or fear of a lack of understanding from peers, or disclosure at work, those are different (and complex) issues.

  3. I see the Rheumatologist next week and will ask him about it then. These muscle weakness have come on quite quickly in the two months since I was last in his office – I wouldn’t have needed it at that time.

    I think I have so many issues with it –

    1. I don’t feel like I need front-row parking…I just need not-half-a-mile-away parking! 🙂

    2. I don’t want to take a handicap spot from someone else that may need it more badly than I do.

    3. The “qualifier” for it on the state forms that I would qualify under would be the one that says: “Severely limited in their ability to walk at least 100 feet due to an arthritic, neurological, or orthopedic condition.” There’s two things wrong with this – first I can walk 100 ft…but not half a mile! And second, even the handicap spots are more than 100 ft from the building – so if that’s truly the barrier then the people that truly can’t walk 100 ft are going to have problems even from the handicap spots!

    4. I would definitely only use it when I need it – I know that just the person that I am, I wouldn’t abuse it or use it unnecessarily. But I still “look” just fine. And, yes, I do have the mental blocks of appearances and people not understanding what I’m going through. I know I shouldn’t care, but I do.

    Thank you all for your support! I’ll let you know how it goes when I see the Rheum next Thur! 🙂

  4. Kelly, some people are ignorant, but that is not your problem. Even if you do not look sick, you have a connective tissue disease that limits your physical abilities and stamina, and you are doing the best you can to live your life as well as you can. It might help to think of it this way: Even if you can do it, what is the impact of walking too far? Are you able to do it easily and continue on with your daily activities, or is walking back and forth likely to limit you in what you are able to do easily and well? Remember, not only do you need to get somewhere, you also need to be able to return. 🙂 If more people need handicapped parking space, then there should be more handicapped parking spaces! Good luck with the doctor.

    1. I like what Sandra had to say! I also wanted to say that with invisible illness, able-bodied and disabled folk alike will sometimes hassle me about parking in the handicap spaces. At my most compassionate, I think of it as an opportunity to educate and to represent so that maybe they won’t hassle the next invisibly ill person they see taking what is rightfully theirs. Re: not wanting to take a handicap space someone else might need more, I understand that, but I also understand that the spaces are there for people who have difficulty getting where they’re going, and you clearly fall into that category. Good luck Kelly, and thanks everyone else for writing such supportive things that I feel better about my own use of a placard.

  5. Many of us go through this dilemma. It feels like “giving in” or “giving up”. Try to let yourself be pragmatic – It’s getting a tool that will help you when you need it. Just as if you had to have a cane or eyeglasses. It’s just a tool. When I need to use my placard, I do, and when I don’t, then I take my luck just like everyone else.

    This is not to deny how hard this is. And more urgently, the need to figure out what the underlying problem is, and whether it can be stopped.

    But be gentle with yourself.

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