Skip said this to me the other evening. It was a simple comment, but it helped drive home for me the impact of pain felt day in and day out. It just sucks the life out of you.
Skip's having some skin breakdown, probably prompted by an inability to use our regular cleaning routines in Maine on vacation and the recent hot, sticky weather we've had. We do have air conditioning, but Skip spends a good amount of time outside each day so is feeling the heat at times. We've had a wound nurse in to evaluate and have a game plan to correct the problem, but there's pain while everything is healing.
I am a bit worried about her skin. This is the worst breakdown she's experienced, and I know how easily skin problems can escalate into major problems. So, we're keeping a very close eye it.
But, the pain is the biggest concern I have now; the discomfort she feels pretty much all the time. I can't fix it. I can keep her skin clean and apply salves and give her Tylenol, but that's it. It's frustrating that there's nothing more I can do. It creates a helpless feeling for me that's different from dealing with the losses of physical capability. For those, I've been able to apply problem-solving capabilities to figure out how to manage the new reality. Here, all I want to do is stop the pain, but with very limited success.
Do others feel that pain is a different animal from other MS issues?
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My only major pain issue is that my feet hurt pretty much 24/7 and honestly I didn't know that that was specific to MS until fairly recently. I thought it was just that I have horribly flat feet. For me it is extremely frustrating to deal with people who are like "it will be good for you to walk further than you are comfortable doing."
My feet hurt all the time in a kind of minor way but excessive walking and they will hurt so much that I can barely sleep much less move normally. Think like you've just done a 10 mile hike up hill all the way in 6 inch stilettos. That is what my feet feel like whenever my brother bullies me into walking an excessive distance at his pace.
I always thought this pain was already separate from the MS so now I'm having trouble coming around to thinking of it as part of the disease I guess.
It is always strange to think of counting your blessings when talking about MS, but Patti's absence of pain throughout her 19+ years is unquestionably a blessing.
Then again Patti is unique. Pre-MS she waved off Novocaine when having a root canal.
Caregivingly Yours, Patrick
http://caregivinglyyours.blogspot.com/
Hi Cranky,
Pain is very frustrating and draining, thc helps me to cope with it.
Love,
Herrad
Leg paralysis takes away BR's independence, and ironically, his ability to share a bed with his spouse.
Hand tremors take away his ability to write, cook, and help with household chores.
Sensitivity to light takes away his ability to fully enjoy daytime outings or places with florescent overhead lights.
Loss of vision takes away his ability to read.
Wasting takes away his positive body image.
Incontinence takes away his pride in dress.
Skin sensitivity takes away his ability to enjoy physical contact.
Pain takes away his ability to think clearly.
Given the whole of MS issues, maybe he's better off not thinking clearly.
Barrie - now that you know the foot pain is part of the MS, maybe it will be easier to push back when your brother pushes you. Good luck.
Patrick - no novacaine for a root canal? Yowza! And I thought I was tough for no novacaine with fillings (I'd rather feel a little pain with the drill than the pain of the novacaine needle).
Herrad - unfortunately, while small amounts of marijuana have been decriminalized in Massachusetts (by vote last November), medical marijuana is still not legal.
Steve - that was a horrible litany to read. Now I'm cranky for the both of you having to deal with that. MS SUCKS.
Now, now. Let's not crank out just yet. :-)
When I read the list to BR this morning, he said it was a very 'G' rated version of what MS has done to him, suitable for family and 3rd graders.
I think my point was that each MS issue is its own animal, and each takes a swipe at the person one believes oneself to be. But it was late, and I really should shut off the laptop after midnight...
Steve - thanks for clarifying, I understand better now. It's a good point. I did ask how others perceived pain in relation to other MS symptoms and I think yours helps me see my thinking might have been a little black and white.
Steve's list seems accurate and just terrifies me! Since learning the MS is part of the foot pain issue my brother has backed off some on his bullying and I also will just say, well go where you want but I can't continue walking at this pace the distance we need to walk so you'll have to walk by yourself and wait for me.
Barrie - glad to hear your brother has backed off. And Steve's list is scary to me too!
Thank goodness BR's plate of scary is served rare.
MS does suck, no doubt about it. I remember thinking the numbness was unbearable 20 or so years ago, but that was before the pain set in. Wish I could go back to just numb. The loss of use of body parts, take your pick, is the part I don't do well with. I do better with pain than I do not being able to pull up my own zipper. I don't want to play anymore!
Andy
Steve - what does that mean?
Andy - it sucks when the old bad seems good in comparison to the current bad.
Just a silly play on words primarily meaning that not many people end up with as many severe symptoms as quickly as BR has. It is common in today's vernacular to use an adjective where an adverb is strictly required.
(This comment should be read in the tone and meter of Barbra Streisand's Judy Maxwell character from What's Up Doc?)
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