Having MS is, in all honesty, an adventure. This may sound strange at first, however, and it probably depends on your particular frame of mind, but each day brings with it both new challenges and new experiences.
For example, a any person grows older the sudden appearance of little aches and pains is perhaps anticipated by most people. We often see the elderly bent double with aches and pains and then accompany this sight by giving you a run down of various organ failures and the onset of age related diseases. I am not ridiculing the elderly, do not misunderstand me, I am merely pointing out what most of us have experienced at some point in our life. However, when a person in their thirties, suffering from MS, suddenly complains about similar things, it is seldom regarded in the same matter-of-fact way. Usually, people fall into one of two groups, namely the sympathetic and the incredulous.
But these little aches and pains are as annoying as they are cumbersome. Painkillers can be used, but it does not always help. Besides, if you are like me, then you do not take many pills, and thus feel the burn. The pains I suffer from most on an almost daily basis are "my brain pains" which are more than headaches. These are short sharp stabbing pains in my head, and I would prefer a headache to these anytime. The other pains are "my deep bone pains" which usually occur in the limbs. They are hard to describe but the best I can do is to say that it feels like the surface of the bone in my limb is being crushed very slowly. Yep, I knew it ... now you think I am weird, but this is what it feels like. The pain is deep beneath the muscle and no matter how you stretch or twist your limb, it does not go away. No! It does not resemble the pains you experience after a heavy workout at the gym, which are normally muscular pains. These are much deeper than those.
Personally, I always feel the need to stretch or twist the limb in order to alleviate the discomfort. Today is one of the days that I am feeling such a pain ... only this time the pain is in my feet. It feels like walking on sharp stones with bare feet, which would be a silly thing to do in the best of health ... and I suppose there is some curious custom somewhere in the world where this activity would be admired and rewarded ... but moving swiftly on ... it rather clashes with my fetching and suave manner of almost knuckle-walking wherever I go.
I believe that I can deal with virtually everything that MS can throw at me, but these pains are disturbing my sleep ... and this I cannot ... no ... will not ... tolerate. I think it is time to invest in a soap box and a bullhorn!
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I know what you mean when you describe your sensations and feel like a crazy person. I think the worst reaction I've had when someone finds out I have MS is to say "but you're so pretty" or "but you're so young" etc etc etc. As if I'm not suffering unless you can clearly see it.
ReplyDeleteAh well. Health and happiness to you! And for what it's worth, you may be suffering alone, but not alone in suffering :)
-Trudee
Hi Trudee,
ReplyDeleteThank you. You have to admit that some reactions are so precious that they warrant an entire section of their own. I must admit that I have heard some real beauties, but the strangest one was "oh no ... so how long do still have to live ..." to which I cuttingly responded that "if everything goes well then I will be dead before the next stupid question or insensitive remark". Unfortunately, everything id not go well and I am still regularly encountering such wanton acts of insensitivity and thoughtlessness. On the plus, my repertoire of snappy remarks is growing owing such wonderful sources of inspiration. Shock them and watch their reactions, they are priceless.
Good luck Trudee, and spoil yourself by heckling them who deign to offend your ear with rubbish. ;-) It really is fun.