Losing Control?

September 28, 2007 at 12:37 pm (myself & I, opinions, rambling, real life, reflecting, story telling)

I find it extremely interesting that I can actually literally feel the limp in my walk increase with each passing day. I try my hardest to walk “normally”, as those unwanted questions are always awkward to face and answer, but it’s so difficult to! I feel as if I am slowly losing control of the use of my legs – which doesn’t make sense really, as I can walk completely fine (the limp and pain excluded that is). On a normal day, I am able to avoid walking with a limp – as it’s something I will always have and can only sometimes minimize so it’s unnoticeable.

But lately, normal for me has been more intensive. I am finding it harder to walk to each class. I’m finding it harder to stand for “long” periods of time. I’m finding everything I used to do without a lot of problems harder to do and I have more problems doing it.

To all my readers out their with MHE: do you ever feel this way? As if you are slowly losing the “control” of your legs or wrists (or wherever may be causing you problems)?

I would have to say that if there was a percentage I had of full “control” of my legs, it would be only about 50%. What I mean – in this sense anyway – by “control” is telling your legs to move in a certain way. It’s generally an involuntary reflex – something your body does on it’s own. However, my body has been having trouble and therefore I am noticing it. Therefore, I have to concrete more.

I am worried that my bones may be fusing. This condition doesn’t generally happen to a person with MHE until they are older – or so I’ve heard. Fusing will even further limit my mobility. Unfortunately, one of my good friend’s with MHE, Mandy, is experiencing this young and her bones have already started to fuse. There is really no way to indefinitely fix this; there are temporary surgeries but they don’t prevent or stop the bones from fusing.

*Sigh* I wish for once I was able to only worry about school troubles and studying for tests, instead of also worrying about my bones fusing. Or my nerves deteriorating. On the plus side, I don’t think my nerves could be deteriorating because there are no really huge problem bone growths – unless the smaller ones cause more damage then I am aware. For now though, I suppose I will have to suck it up as I can’t afford to take time off school – even for a one day visit to my doctor in the big city.



  1. Bennie said,

    I know you think you can’t take that time off but I sure would consider that trip to the doc a little longer. I’ve read up on your disorder. I cannot imagine to pain and stress it has caused you throughout your life. I go back to what I said a few days ago – you are one amazing young woman!

  2. JC said,

    Bennie I have been thinking about booking an appointment – I didn’t want to jump the gun though so I’m holding off. Maybe my body just needs a bit of time to get used to the new demands of walking around a huge college campus. And thank you 🙂

  3. Michelann said,

    My husband has MHE, he’s in his mid 40s. He has a lot of hip pain, he had it looked into a couple of years ago and his doc (who I want to slap) saw growths in his inner thighs and decided he had bone cancer. A month later we talked to an oncologist and discovered, no, those were MHE growths that had long since stopped growing. However, the effect of the growths were dysplasic hip joints, which were what was causing the pain. You’ve probably been scanned and x-rayed to death already, but you might check for dysplasia because you will be able to make good decisions about what kind of exercises are healthy for your joints and which are not. My husband’s exercise of choice was JUMP ROPING (brilliant) until the doctor mentioned that it would wear out his hip joints faster than anything else. He’s found that keeping his weight down and doing low-impact exercise and light yoga have really helped with the hip pain. You might consider a rolling backpack for your books, that extra 20lbs you’re hauling around in a backpack can really stress your joints.

    Hope this is slightly relevant. I was pleased to find your blog.

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