You’ll never feel ill enough. There will always be a little voice in the back of your head whispering that you’re fine, really, you’d be okay if you only tried harder.
That little voice isn’t the voice of reason – it’s the voice of internalised ableism, and you owe it nothing.
Find someone who can help you. Apply for the benefits you need. Use the mobility aids that make your life easier. Give yourself a break.
You deserve it. You are ill enough. You aren’t faking it, you aren’t mooching. You’re surviving, and you deserve a round of applause.
Found on the blog “Kipple Kipple Everywhere.“
Bonus points: how many of these can you identify by sight?
I saw a t-shirt once that said, “I do the MS walk every day,” sarcastically referring to the well-known MS Society fund raiser. For my MS walk – or more precisely my MS shuffle – there are distinct steps. (Follow along if you’d like!)
The MS Shuffle: Standing at your walker –
- Shift weight from center to the left leg.
- Engage left leg.
- Lift right foot, either at the knee if possible, or at the hip.
- Move right foot forward one pace, either above the floor or shuffled along.
- Shift weight to right leg.
- Engage right leg.
- Lift left foot, either at the knee or the hip.
- Shuffle left foot forward even with right foot, or, for bonus points, one pace ahead.
- Repeat until exhausted.
- Demerits for falling down.
- Demerits for forgetting to breathe.
This is the same pattern for normal walking, the MS Shuffle just requires conscious attention to each part. It can actually be a very mindful, almost meditative way to walk, breaking down each step into it’s component parts and paying careful attention to each part. It becomes a sort of mantra, “Shift weight, engage leg, lift foot, step. Breathe.”
Maybe I should lay some of those Arthur Murray dance instruction foot prints on my floor to guide me around the living room. And find a very slow box step to play. Before long, all the hep cats will be doing the MS Shuffle. Remember you heard it here first!
Many years ago, my daughter had a heart transplant – a sudden and at times terrifying journey. It all worked out remarkably well, better than we dared hope. After her surgery, I thought it might be a good idea to have her sit with a therapist to talk about any emotional issues she might be struggling with. In the end, she didn’t really understand what she was doing there, and the take-away was that she didn’t want to be The Heart Transplant Girl. She just wanted to be like everyone else.
In much the same way, I don’t want to be The MS Guy. Multiple sclerosis persists intruding in my everyday, so there is only so far away from it I can get. But my inbox is filled with updates and newsletters and new blog posts and comments from various forums I participate in. I feel somehow obligated to read it all, as if it is a responsibility, part of taking care of myself. I could spend every minute of the day reading the latest, and following links, and investigating new ideas and therapies. I feel pulled to be an advocate for MS, for disability issues, and as a member to The Disabled Community. And on and on. I wind up not only dealing with my own MS body and brain, but I border on obsessing about MS outside of myself. As if I don’t want to miss any tid-bit of important news. It gets overwhelming. To the point where it begins to crowd out other things I’d like to be thinking about.
So although I’ll never be able to forget that I have MS (the MonSter), I try to find ways to move it at least to a side burner on the stove, if not a back burner. And perhaps for a little while each day, to not be The MS Guy.
I feel like I have plenty to say lately – I have a growing list of prompts and drafts and notes to myself, lots of great topics – but when I sit to begin putting actual words together, I feel stumped. I don’t know what it is. I blame the easy scapegoat of MS for robbing me of my ability to write coherently. I’ll keep at it – god knows I have plenty of time.
I was awake all night – again – last week, so I sat up, took my phone camera and made this.
There’s more (if you want to see) at Captured Light.
I have also re-discovered My Counterpane, a vibrant online community of MS people – people who immediately know what we’re talking about. Wander over and introduce yourself.
I wrote this after being rudely awoken, far earlier than I would have liked, by my near constant companion Jimmy.)
How about this. You wake up in the morning feeling like someone has been pounding on your left triceps. If you’ve ever climbed a big mountain or done a long run or trail hike, you might know what this feels like. Except, this morning, you have the pain without having enjoyed the climb that caused it. It’s just there. No reason, it just aches. There’s medication, a whole bottle of it, right there beside your bed, that might, in an hour, dull the pain. Or it might not, no way to tell. Either way, as a side effect you will spend the morning in a fog – dizzy, weak, uncoordinated, disoriented. And desperately tired. You get woken up too early every single morning with a variation of the same pain. It might be the other leg, or your lower back, or one shoulder or the other. Pain is pain, am I right? Thinking clearly is over-rated ayway.
Tell me – would you reach for the pill bottle, or decide to ride out the pain, which will probably go away on its own eventually. Or it might not. Give it some thought, if you can with that ache in your leg.