Managing the Thing With Feathers
Maybe you are like me, and are lucky enough to be surrounded by concerned and loving family members.
Now don't get me wrong. In our situation we couldn't survive without their support. But if Jean-Paul Sartre was right and "Hell is other people," then another circle of Hell has to be concerned family members.
I don't know what it's like in other countries but here in the U.K., it seems like every day there's another miracle cure for MS. Another lifestyle option. Another diet. And if it isn't one of these it'll be something that is part of your daily routine but which you're absolutely NOT meant to be doing.
Recently a BBC news reporter with MS went public with her decision to travel to Mexico to pay for Stem Cell treatment. Aside from the eye-watering £43,000 financial outlay, this is an experimental treatment for which she will not be receiving any follow-up care. But that still didn't stop several family members promising that they'll do whatever it takes to get me the same treatment.
Making lifestyle changes
I'm just as susceptible to these stories myself and I'm every bit as willing to be convinced to try anything. With this in mind I've been following a particular lifestyle programme which claims to help with MS. Without going into too much detail this involves a fairly restrictive but healthy diet, medication, exercise and meditation. Not really much there that will be doing me any harm, right?
Since I started this programme, people have been asking me if I think it's doing me any good. It's the same when I start any new medications (coincidentally, I started another new one the day I started writing this post).
My answer? I don't honestly know. With the programme I feel mentally clearer but that could be due to leaving a fairly stressful work situation. The fact is, although my mobility seems to be getting gradually worse, I haven't had a relapse in over four years.
Despite the fact that everyone's MS is unique we all kind of have an idea of how this is likely to play out. But basically, it feels good to be doing SOMETHING. Something positive, to the best of my abilities and based on the best knowledge at my disposal. But anything else is just a shot in the dark. MS can sometimes feel like it's all about hope - that a cure will be found, that your progression won't be so severe, that THIS or THAT lifestyle will work.
It's about balance
And with that, it can become a tightrope act - managing the expectations of the people around you so they don't get too excited up whilst still maintaining a level of HOPE for myself. Hope that all the drugs, exercises, diets, alternative therapies, magic beans, will someday pay off!
The title to this post comes from the following poem, one of my favourites by America's greatest poet (in my opinion), Emily Dickinson:
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
Does your employer provide workplace accommodations due to your MS?