What’s good for you is impossible to get to
I first noticed this particular multiple sclerosis peculiarity about two months after my diagnosis. I was at an MS support group meeting in a hospital. This support group was sponsored by a local drug company and since drug companies have tons of money, they fed us well at group.
There was a huge array of edibles to choose from- well worth the two hour drive to get there. I did try to combine the drive to group with visits to my neurologist to make the gas money worth more than just free food.
As group started and we all munched, all of us were actually focusing on the cookie tower. The hell with the fruits, cheeses, and fancy salads, we wanted the cookies dammit!
Eventually, a brave MS’er couldn’t wait any longer and decided to go for the cookie tower. She discovered that it was enclosed in this obnoxiously strong cellophane that noisily crackled as she tried to open it. She tugged and tried to rip and puncture the packaging but couldn’t do it. The cellophane was held together with a ribbon but the knot was way too tight to untie.
We MS’ers are a loyal and dedicated group and since we couldn’t hear each other over her packaging battle, we all went to help. We played tug of war with the cookie tower and all took turns at destroying the obstacle before us. Eventually, working together, we finally got to the cookies. No one can say us MS’ers are feeble, that’s for sure.
As we all munched away I wondered if the cookie tower was some sort of cruel drug company test; if you can actually GET to the treats maybe you don’t have MS after all?
That was the first sign of trouble when MS hands try to get to healthy MS things. So perhaps cookies are not necessarily healthy but we sure were happy eating them. And being happy has got to be healthy right?
Next up was wine bottles, good wine bottles, the kind with the cork in them.
Growing up Portuguese, wine was part of my diet. I remember being 12 and alone in Portugal with my dad, thinking I was all that. He wasn’t as strict as my mom and so I was sure he would let me have soda with dinner. Imagine my surprise when I asked and his actual answer was, “soda? You’re in Portugal. You’ll drink what the Portuguese kids drink- you’re having wine!”
I think I liked it but for some strange reason the memory of that vacation is hazy. The point is, I drank wine like water and I didn’t even need Jesus’ help. I could open a bottle just fine. And red wine is supposedly very good for you.
But after my diagnosis it started getting harder and harder to open a bottle, to the point where I was resigned to the mini bottles with screw tops on them. And sometimes even those were troublesome. This was a great concern to a friend of mine who promptly bought me an electric wine bottle opener, (thank you Shan,) which works great as long as my MS brain remembers to plug it in.
Then there’s the whole healthy eating thing. Beans are considered excellent for MS’ers and beans are something I can actually tolerate. I was opening a can of kidney beans to add to a nice healthy salad.
(Dear reader, don’t you dare bring up the soaking for several days thing- I can’t handle even thinking about all of that prep!)
I was happy that this particular can had the easy opening top with the pull tab thingy on it. I pulled and promptly pulled the pull tab thingy off, leaving the top of the can totally intact. I had to try three different can openers and fight with the stupid can for over ten minutes before I finally got to the beans. At that point I was so frustrated and exhausted it was all I could do to continue with the salad and not order a pizza, especially since I reasoned that pizza has tomatoes and they are very good for you.
Why does MS insist on making things more difficult, even when you are trying to take steps to better your health? And why, oh why, don’t companies who should know better, not know better?
MS causes me to have weak fingers and super clumsy hands. I have heard many people with MS have the same issue. I am on an interferon to treat my MS. So one would think that the box the interferon comes in wouldn’t be a vault more secure than a Brinks truck.
Yet to get to the medication you first have to cut open the Styrofoam box with the clear, double duty tape triple wrapped around it. There’s no way one will get through this tape without a super sharp weapon. So now my clumsy hand is armed.
If you manage to cut through the tape you aren’t doing so without leaving tiny pieces of Styrofoam around your carpet. If you can ignore that, good for you- you are strong indeed.
Mostly likely, you can’t and your choice is to attempt to pick them up by getting down on the floor and trying to figure out how you’ll get back up again, or pull out the vacuum.
Next out from the box comes the bubble wrapped and again, triple taped actual package. And again you arm yourself. You desperately try not to lose focus as you are tempted to stop looking for your medication and just aimlessly pop bubble wrap. Once you cut through the bubble wrap then you must try to unwrap it’s ten layers to find the box of medication.
This is akin to a twisted MS version of Where’s Waldo?
Eventually you will find a bag and in the bag, which is soaked by the way from the ice packs you hopefully have not dropped on your foot, you may find your injections under thousands of mini band aids and just two alcohol swabs. I have more mini band aids than there are paper cuts in the world and will never, ever run out. Yet, like the Publisher’s Clearing House non-notices, the drug company keeps sending me more.
At the bottom of the bag is finally, the medication which must be immediately put into the fridge as it is supposed to stay completely cool even through the three hours it took you to find it. Before the package ordeal is over you have to soak up the wet and throw away the non recyclable box.
The whole process usually wipes me out until the next delivery.
Why do I put myself through this ordeal each month?
Because this medication is good for me.
Why does it have to be so difficult?
Because it’s just one of the many curious cases of multiple sclerosis…..
FYI Friends! This weekend is the final chance to enter the Goodreads Giveaway to win a free copy of MS Madness! A “Giggle More, Cry Less” Story of Multiple Sclerosis. The Giveaway will end sometime Sunday the 22nd and since I’m not sure what time that will be, consider entering today!
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Maybe I’ll go to. a drug meeting, it sounds like a lot of fun. 🙂 I remember those days of over nite meds being delivered. Great Blog
Thank you so much Diane! And that group was fun- we had a lot of laughs in it which of course, I totally relate too. Alas, my MS made getting to my MS group too hard and I didn’t stay with it…I keep meaning to check out groups closer to me but haven’t yet. It is on my list though!
There’s nothing like a support group, especially if there’s food. That’s why ours has the informal acronym of LEGEND: Lexington Eating Group with Extreme Neurological Disorders. How depressed can you get when there are cookies at hand? Beats Lexapro!
Excellent Rick!!! That’s awesome!!
Very funny!
Trying to open things is a bugger to me. Although our MS doesn’t help, I think products are just packaged better (or worse, depending on your perspective) today.
Just last night I found myself #@$%&! while trying to open the cellophane on a package of light bulbs!
Keep trying.
Guess we don’t have much of a choice….You keep at it too my friend…. I think you have the start of a joke, how many MS’ers does it take to open a package of light bulbs???
Well I am noticing that I have been getting clumsy and forgetful too, like today i was sitting(yeah sitting) at work on the tall wooden stool well I went to move the seat so the cleaner could do the floor and proceeded to really whack my knee hard on the desk I thought i cut myself it hurt so much and I barely managed to stiffle the F bomb that was ready to ring out…As I am going through “the change” I have given up on attempting to loose weight no matter what i do the spare tire hangs on… So I guess we are both dealing with not so great challenges as we get older I don’t like it one bit, but what can we do just deal with it as best we can.
Yep-all I can say to that is yep
Well I have put a bit more thought into it and although I will NEVER be the same size i was in high school, and my hair has some gray in it….. I am just going to try to take things one at a time and take my time tackling each new thing so that i don’t get overwhelmed by it all….. I said I was going to TRY.. As you know I tend to do more than I should for others, and it is hard for me to say no when asked to help.
Sounds like a plan!