Category Archives: MS related
Tip toeing through my days…
I feel as though I need to walk on eggs around here. Don’t breathe too hard or get my hopes up.
Two days of him not on the floor seems too good to be true.
I have to get my car inspected today so he’d better be okay on his own for an hour or two. Taking my MP3 player and Kindle along and sitting in the waiting room while they do it. A bit of a break for me.
I might even grab a late lunch somewhere. Alone.
Not even the AC will help if he goes outside
The upcoming week is looking like the heat and humidity will crank up again. This usually means he’ll be having more bad days.
It only takes him making one poor decision to go beyond the
AC.
I don’t even get to enjoy the outdoors lately.
Who can go outside and work in the yard when he falls at the drop of a hat?
I hate walking in and finding him crashed on the floor.
I can’t exactly tie him to his chair now can I?
Lucy tries though.
I never know what to expect one day to the next…
Today I didn’t have the heavy burden of helping The Curmudgeon go upstairs, bending his stiff legs, placing his feet on the stair after each step, steadying his progress, and keeping him from falling.
He managed to walk around with his walker or cane and take care of himself most of the day. When I woke up and came down I requested he not talk to me. I needed silence.
I, unfortunately, have spent the day on the verge of tears all day. Had to disappear a few times to take care of them. I was emotionally shot and physically exhausted.
A day in the life of a caregiver
Had to help him go upstairs. This is a long, slow process on his bad days (like today) he has to go up one stair at a time on his butt. No, we don’t have a lift of any sort and no, there’s no bedroom on the first floor.
Had to get a neighbor to help get him from the top of the stairs to his bed. I’d run out of gas by then. Thank you Susan.
The rest of the day consisted of running up and down stairs every five minutes to either empty his pee bottle or help him with something else.
It’s been a two laundry load day, he misses his bottle once in a while–which means going up and down the cellar steps and up and down the stairs to the second floor.
In and out with the dogs all day.
No sooner would my butt hit a chair when He’d holler for me again.
Hotter than blue blazes outside but I did manage to fill three garbage barrels with trimmings from the magnolia tree. Wish someone would come by with a chain saw and some energy, there are some larger branches that need removing.
Still need to find someone who can work with cement and fix the porch before winter.
Once I did get a chance to sit down, I browsed houses for sale on the Alabama coast…
Time to open a bottle of wine…
Tears enough to fill the oceans
Exhaustion.
Tears.
Dread.
Tears.
Frustration.
Tears.
Mourning the loss of him before he’s gone…for years.
Anger, lots of anger.
Many more tears.
Heartsick.
Lost.
Alone.
Tears never stop.
Where did the good times go?
Love is gone
All that remains is a shell, a sham.
Tears flow.
Second injection of Rebif.
Woke to The Curmudgeon on the phone again. “I’m down in the back yard. Can you come and help me up?”
Told him to wait for me to get dressed. I was NOT going outside in my PJs.
I quickly dressed, closed my bedroom window, turned on my bedroom AC, turned off the whole house fan, turned on the other upstairs air conditioner, closed the window in his room and headed downstairs. I closed the front door, turned on the AC in the living room, grabbed his walker, and headed out to the backyard to find him.
Didn’t have to go far. He and Lucy were right outside the back door. She was patiently sitting beside him.
He said she nudged him from time to time, “get up Daddy!” I manged to get him in the house without injuring my back again. Yay me.
He did his second injection of Rebif in the evening. Now we wait to see how he is with two injections under his belt.
Lucy spent the rest of the day keeping an eye The Curmudgeon. 
Keep your fingers crossed.
So today The Curmudgeon started using Rebiff, interferon beta-1a. This is another injection drug, although this one is subcutaneous and given 3 times a week.
An MS sucks sort of day
Went to bed at my, as of lately, usual time of 5:30 a.m. Woke to The Curmudgeon’s voice on the phone, “I’m down and I can’t get up.”
Leap out of bed, heart pounding, adrenaline rushing, cussing, mad.
Why?
I had less than three and one half hours of sleep.
I went to bed thinking, “Wow, I don’t have to run anywhere today, I can sleep in!”
Yeah, Nope.
Hurt my back again trying to get him up into his chair and later upstairs and into his bed.
Nope. There was no help.
Yep, I actually went knocking on doors to find some. No responses.
No, I won’t call 911 for help because it’s not life threatening and they frown on it.
Yes, I did tell him that if I hit the lottery I was outta here. Granted, I’d make sure he was well taken care of…
I just can’t do this much more without losing my sanity completely.
I am past needing a vacation, I need a new life.
Two very bad days in a row for The Curmudgeon. I can’t wait for him to start the new medication in hopes that he improves on it.
His bad days mean I get to wake to a message on the phone from him saying he’s down and can’t get up. Cue adrenaline rush, pounding heart, and lots of cussing. I leap out of bed, dash down the stairs (nearly breaking my neck there), and manage to, once again, no, twice again, hurt my back getting him up. Both. Days.
I am exhausted clear to the bone, frustrated as hell, and one lottery win away from leaving.
Yeah, I said that.
What next for The Curmudgeon?
He had a neurologist appointment on Monday. They took him off the Tecfidera. Again.
Once the paperwork goes through, he’ll be starting another medication that has been around for awhile. You can see all the information on Rebiff in the link below.
Here’s hoping for some good results.
Stress and heat levels rise… not good for MS
The Curmudgeon is already showing signs of the no medication downhill spiral. His legs are weak. His walking is crap again. I do believe he’ll be back to his walker tomorrow.
Of course his being taken off the medication was bad enough, but now we have the addition of extreme heat to give him a real face plant.
So glad G and I took our young neighbor along with us to our favorite sushi joint. We enjoyed watching him dig in and relish the wonderful items on the menu. It was a bright spot in the day that will have to last me for a while as The Curmudgeon goes into his spiral.
Now I think I’ll kick back and have a tall one of these…
Another setback for The Curmudgeon
So another day where The Curmudgeon’s MS hits us between the eyes with a jolt. He went in for his monthly blood test early in the morning and by afternoon we had a phone call telling him to stop the Tecfidera again.
Crap.
His hemoglobin and lymphocytes are all screwed up.
Double crap.
The weather is heating up too so he won’t even leave the house later this week.
He did go with Lucy and I to the vet’s office yesterday. He got to see her getting hugs and kisses from the entire staff. They love her at ABE Veterinary Clinic. Unlike her brother Gavin who hates to leave home, Lucy is a social butterfly.
Come on Daddy, let’s play!!!
Doggonedmysteries 