Explaining Ms To Other People
I am still at the early stages of MS (if that is what I have, I have yet to receive a diagnosis, although my neurologist is convinced it is the most likely the case).
For the most part, I am able to carry on as before without issue. My main symptoms right now are muscle fatigue, particularly at the top of my legs, but on bad days it goes down to my feet. I also get occasional bouts of nausea and odd tension and pressure build up in my head (behind my ears and into the back of my head). I can't say these are headaches - because there is no pain, just...well.... pressure.
I am slowly learning how to manage these symptoms and take back as much control as I can, but it is hard.
One of the most difficult things I am finding is explaining all these symptoms to other people. If I use the words "fatigue" or "exhaustion" people don't really understand what I mean. If I say my legs are tired - the assumption is that I am in pain and simply need painkillers and a good night's sleep. (Sometimes that is true, but sometimes a good night's sleep has no effect. It certainly is not "the cure").
If I talk about the tension and pressure headaches people just assume I am talking about a head cold, and again all I need is cold/flu meds and a good night's rest.
The worst part is if a friend, or member of my family wants me to spend a day with them out and about (like a long walk around town), or if they want my help with something physical (like help gardening etc), they don't understand my hesitancy. Whilst yes, I can still do these things, I have to limit the time I spend doing them. I have to "wait and see" how I feel on the day in question, and then take note of how my body manages the activity. If I feel anything is wrong, I have to tell them I need to stop, that I have had enough.
I've made the mistake before of spending a whole afternoon out gardening, not noticing any problems, only to find on the following day my legs are exhausted and that I am barely able to walk around the house, never mind do anything else.
But of course, people just don't understand this stuff. In their eyes, they see a perfectly capable human being (which for the most part I am still, I just move a little slower, a little more carefully than other people). If I am having a "bad day", they don't understand what that means. The assumption is that I am being lazy, or being contrary because I'm in a bad mood.
I guess, I don't really blame them though - I had no understanding of MS before now. I probably wouldn't have understood this stuff either if I hadn't experienced it.
Opalgem 36-40, F 16 Responses 1 Jun 24, 2010