So… classes started last month and suddenly I can’t catch my breath and write a few words here. But here I am trying to keep you up to date.
At the beginning of the month, October 5th to be more specific, I switched to the full dose of Tecfidera. I thought, considering how bad my flushing could be on the smaller dose, that I would simply go from flushed to radioactive. As it turns out, nothing weird happen. I never had headaches or itching anymore, and although I still flush, it didn’t get worse. Some days it’s actually milder. So that’s really good. Continue reading →
One of the most frustrating things about living with multiple sclerosis is that most symptoms are invisible and we appear to be well to other people. One day the entire world seems blurred – yet you’ll never know how I am seeing you. The other day I am so tired I can barely stand or listen to people talk – yet you’ll just say I’m not getting enough sleep. And how about those days when my memory took some time off and I can’t remember anything you told me? – you’ll just say I wasn’t paying enough attention, or worse, that I’m a bit dumb. And let’s not talk about those days when my balance is off and I bump into every other object in the room – then I’m just a clumsy little girl.
I feel ashamed of talking about my little handicaps because people will most likely eye me suspiciously and assume that I’m just trying to get away with responsibilities or work. I had a boyfriend who once suggested I was faking symptoms just to get attention and on another occasion he suggested I was using the disease as an excuse to get what I wanted. This kind of response makes ms patients feel isolated, insecure, misunderstood – and that’s hardly breaking news. If you research a little about multiple sclerosis, either online or the old-fashioned ways, you’ll find lots of people wrote about it.
For instance, Sandra Amor and Hans Van Noort wrote in their Multiple Sclerosis – The Facts that “symptoms may range from being almost unnoticeable to severe, and anything in between. In fact, quite a few people with MS do not show any clear signs of their condition at all to untrained eyes. Paradoxically, this in itself can be a cause of problems too. Family members and colleagues may sometimes think that complaints may be exaggerated, or even imaginary. Society can sometimes be quite impatient with people who need special attention but still appear to be largely okay from the outside, especially when they are young.” Allison Shadday adds in her MS and Your Feelings, “Unfortunately, society reinforces a stoic stance. We’re taught that it is better to keep our ‘complaints’ to ourselves. But the price we pay is isolation. Keeping up a good front inevitably makes us feel distant and misunderstood by others, rather than accepted and loved, as we so desire.”
But the truth is, most people don’t care enough to read or research. So when I found out about the Seeing MS project, I thought it was fantastic. The idea is to expose the invisible symptoms, by depicting them in an image. Nine photographers were invited to participate, and anyone else can submit their pictures as well. Where words fail, maybe images can help.