My Heart is Tired

I have not had a break in more than a year now. I do not see that happening any time soon. My incredible stepchildren will not have time off until the summer and they would have to see their Dad naked.

I would love to see my family. We have a wheelchair van now, but my old house is not accessible. The hallways are very narrow and he would not be able to turn into the bedroom. My mother’s house has two sets of stairs. There is no ramp. I really do not know how we could get him into the house.

My uncle died recently. Now my cousin is dying. She’s eleven months older and her cancer has spread. She is at peace with it. Her faith is amazing. She was my first best friend since my first sister had not yet been born. She was a nurse. She married her great love and recently lost him.

Mom is now ninety years old. She’s healthy and my sister and son take care of her local needs. Her neighbor ran over during a bad storm when the power went out to make sure she was okay. I miss my family. I love them all. I see the ladies on Zoom once a week. My son has to get up very early for work, so he’s not always able to join us.

I am recovering from a foot injury. I dropped the transfer board on the top of my right foot. There were no fractures, but I have bursitis, arthritis and a bone bruise. I was allowed to discontinue wearing the boot!

My morning begins by setting things up for Hubby. When he awakens, I wash him up in the bed, dress him and position him so we can use the transfer board to get him into his power wheelchair. At that point, I can have a cup of coffee and get on the computer. It is 10 a.m. and I already feel the need for a nap, but I have breakfast to prepare and laundry to do. The laundry area, of course, is in the cellar.

I mostly do only necessary work around the house. Dusting is not one of those things. It is spider season, so I need to vacuum them and their constant webs off the ceiling. I have the den to straighten up as well as our one guest room.

I will drive eight miles to the pharmacy today and also go to the bank. Perhaps I’ll see more wildlife along the way. As I was returning from my mother-in-law’s house on Tuesday, I had to stop to allow two turkeys to cross the road. The hen crossed first and the male decided to run after her. Only in a small town?

It is time to resume my tasks for the day. I love my husband beyond measure, but I am tired. I miss him. I cannot imagine how I will be doing this ten years from now, but then again I do not know what Multiple Sclerosis will do to him in the years coming. We were told that MS does not kill yet I know of people who have died from the ravages of this disease. It scares me. He is in pain most of the time but rarely complains. God, please help him.

Feeling a Bit Lost Lately

If you follow here, you know that my husband was diagnosed with Primary Progressive Multiple Sclerosis in December 2020 after 2 years of symptoms that could be brushed off as just getting older.

Here is what PPMS means for us. It is not necessarily the same path for others with the same diagnosis.

At Christmas in 2018, his balance issues began. He began using a cane for balance, especially outdoors. At times he appeared drunk and our joke was that he would not pass a field sobriety test. When he saw his PCP about the nagging back pain, Doc asked him to walk for him. His left foot was dragging. Doc ordered an MRI of the brain and a consult with a neurologist who specializes in MS. Hubby had been tested for Lyme and other more likely culprits. When those results were negative, it was time to consider a zebra rather than a horse.

COVID-19 slowed the process quite a bit. We live away from hubs where certain types of care are more easily accessible. It took a while before the vaccine arrived where we live and a bit longer to get an appointment. This was necessary before he could get a lumbar puncture which was scheduled in November 2020.

He went from using the cane, to a rollator, to a borrowed manual wheelchair and is now in a power wheelchair. He can no longer transfer on his own, which is difficult. From cane to manual wheelchair happened in about six months. He’s been in the power wheelchair for about two or three months. It’s helped him get outdoors.

Our day begins when I dress him while he’s still in bed. His left leg does not function, so it’s like dressing a 200 pound mannequin . He’s in pain every single day. After his pants are on, I position him on the bed with his legs over the edge and bring him upright so his shirt can be put on. I then get the wheelchair close to the bed and using a transfer board, I get him into the wheelchair. For now, he gets sponge baths until we figure out how to safely transfer him to the shower chair.

I then fix his coffee and juice so he can take his medications. Because his hands lack fine touch and also due to pain, I now fill his medication containers for the week.

At times he needs help with toileting. His brain does not give him enough time to transfer to a toilet chair in time, thus the urinals.

Holding a cup is sketchy for him now. At times I have to cut his food for him. I try to trim his mustache. He needs a haircut. It’s very long now and it needs washing. I pay attention to cleaning his feet.

At bedtime, I get him transferred into bed and undress him and give him a quick wash. He can’t roll to his right on his own, so I roll him over. He can roll to his left with minimal difficulty. Sometimes during the night, his body contorts due to spasms. He tries not to awaken me. I made him promise to wake me if he needs help and not to suffer in silence.

I stay up a little later than he does and watch mindless television just for the me time.

My heart is breaking. It seems he is slowly disappearing. He has his mind. His jobs are to order groceries online, do the bills and menu planning. I see his abilities disappearing. I don’t treat him any differently. We crack jokes and have an occasional breakfast out and have returned to in-person worship.

He’ll be 70 in the fall. I am afraid of losing him. I love him.

On the Road Again!

We bought a 14 year old Odyssey last week. It has the leaning feature to lower the van on the ramp side. Not a lot of bells and whistles but it’s a game changer.

His appointments are now set. We could not rely on insurance transportation.

We attended a parade yesterday for the first time in 3 years. He went to his mom’s house for the first time in 2 years. He’s so excited about getting out and about now. It’s been so long.

I feel I have my husband back. MS is obviously still in our lives but we can get him out and we can enjoy life as a couple again!

#MultipleSclerosis

MS Is Expensive

Due to our location, any durable medical equipment is out of pocket. We have been approved for a loan for a wheelchair accessible van. It’s not inexpensive for an ’08 but we can get him back on schedule for his treatments. He is one month behind and we don’t want his disease to progress further. Using transportation through our insurance was useless. They did not show two weeks straight and that was with a week’s notice.

We’ll consolidate bills as well so we can also have the deck repaired. The power wheelchair he bought from eBay is working well for him. He can venture out into the yard now. The van will take us to a new level.

On the upside, our neighbor put up a fence and helped clear a lot of brush as well as clearing other debris. It looks so much better. I’ve worked so hard and I’m exhausted but it looks so much better.

We don’t qualify for help for household repairs so Mr. Budget is working on that. It’s his super power.

God’s with us.

It’s Our Fourth Anniversary!

Today, hubby and I celebrate our fourth wedding anniversary! It seems so much longer than four years but in a good way.

More than half our marriage has been this journey of progressive symptoms for which we have no official diagnosis. It could be Primary Progressive MS. One specialist believes it’s Mixed Connective Tissue Disorder. He sees his PCP and Rheumatologist next month. His PCP will read him the riot act. I won’t say a word. I believe after he sees the rheumatologist he’ll decide to proceed with the lumbar puncture. I really hope so.

Walking with the rollator is difficult most days. He’s in a great deal of pain most days but he doesn’t always voice it. Before Christmas he was using a walking stick but mostly outdoors. He bought the rollator in January of this year. Sometimes he gets halfway down the hall and asks me to push him.

He wonders about his life expectancy. I read where those diagnosed as having late onset MS progressed faster toward disability and have maybe ten years from diagnosis. I did not tell him about this. He had already read other articles regarding life expectancy.

He told me about a fellow boater at the local marina. He said this man was his same age and the only other person he’s known who went from fit to frail practically overnight. The man died nearly three years ago. The obituary suggested donations to the MS Society. My heart sank. This man died at age 63.

I don’t know what the future holds but we’re going to face this together. I have not heard back from the hospital regarding their support group. I’m going to need emotional support and also resources. Resources will be easier once we have an official diagnosis.

We’re still very happy after the first four years, so here’s to four more and many many more!

Peaceful Sunday

It’s a beautiful day today. It began a bit chilly for this time of year but later warmed up long enough to enjoy the yard and grill a couple of burgers.

Hubby had another good Sunday. He was walking very well this morning with a mobility device. The smile on his face was priceless! He’s a bit sleepy now so he’ll go to bed early.

I left him to his own devices for a while. We needed coffee and our favorite ground coffee is not carried by Peapod. We will receive our fourth grocery home delivery tomorrow afternoon. It’s an extra layer of protection against the pandemic.

I donned my mask and went for the coffee. It was on sale! I then filled up the gas tank and followed a shiny object for about ten miles. I was going to call hubby that I’d be delayed but getting to the telephone would not have been easy for him. Calling his cell would have been wasted effort.

My shiny object ended at a nursery. Hanging baskets were on sale and I bought two. Hubby put up a watering system on the deck two years ago. I now have two nozzles not being used so I may buy herbs for the deck rail. I put a bucket under one nozzle and I use the water to fill the redneck birdbath. After three years, the birds are splashing about in it!

I love our birds. We have woodpeckers, nuthatches, chickadees, cardinals, blue jays, red-winged black birds, song sparrows, robins and even osprey.

I may go for more yard therapy tomorrow if the weather holds. I can take my time and get most of the yard debris out to the road before the town picks it up in about two weeks. It’s a huge feeling of accomplishment.

It’s something I can control. I can’t control what’s happening to my husband. I wish I could. We try to keep our humor going. We are in this together wherever it takes us. It would be nice to just get out on the deck for a little while. He’s trying so hard not to let MS take over his spirit. I try to encourage him and sometimes give him a hard time to make him laugh.

Today I am thankful for a beautiful day, my gentle soul of a husband, a great family, great friends and good health.

Tractor Therapy

I have been waiting for decent weather so I could mow our little acre. I call it tractor therapy. Today was supposed to be in the low 50’s and little wind. Just as I was about to go out, the wind started up. It was howling like a ghost on Scooby Doo. When I could stand it no longer, I went out.

The lawn could not have waited any longer and I needed to get OUT! Since the pandemic began I only go out for groceries to keep our risk as low as possible due to our ages and hubby’s MS.

It felt so good to be outside for that amount of time. It took less than two hours to finish. While I had only meant to do the back yard, I finished the front yard as well. Just being on that tractor helps me feel normal. When I took over the mowing from hubby two seasons ago, I was afraid to mow the front yard. I always felt I would tip over. It no longer bothers me. It’s fun, relaxing and very satisfying. I can talk to God, sing or just mindlessly mow. I highly recommend it!

It’s a good thing I took a hot shower. My muscles are reminding me that I have not used them in that way for a very long time. Shoulders are sore from turning the steering wheel.

It’s been a better week overall. We even received yellow roses from my Mom. She said she can’t be up here to help me and she loves yellow roses. It’s how Mom says she’s thinking of us, praying for us and loving us. She’s the best.

Staying at Home During Pandemic

We’ve been sheltering in place for a month now due to the COVID-19 pandemic and questions whether husband is compromised due to his MS. We are both high risk due to age and weight.

Hubby, God bless him, needs to get outside…before his body goes missing. Just kidding. He’s been cooped up here for more than a month. He is terrified that I will become ill. He’s driving me crazy over that and I’m already crazy. I am taking all the precautions I can. I try to go out only once a week for groceries. I also keep a log of any interactions outside the house.

I did take his Mom 25 miles to the bank so she could cash her monthly check. I cashed mine while we were there. Our biggest risk was inviting her into the house at a safe distance, of course. She had not seen her son in person since January. It’s a parent thing. You need to see that your baby is okay. She had never seen his rollator so we demonstrated how it converts to a transfer chair. He also got out the device that helps him put his socks on. She laughed! She loves gadgets so she may end up getting one for herself.

My youngest sister set up the family on Zoom. We’ve now had two sessions where I can see my family. I haven’t seen any of them in person since July 2018. It’s been longer since I’ve seen my youngest sister. It helps to see my Mom, son and siblings and laugh like we’re in the same room. I did see my niece and both cats.

This pandemic is very stressful. We have about 33 cases in this hamlet and 147 cases in the town with 8 deaths. The county is 86 miles long and most of the new cases are closer to New York City. We have two grocery stores nearby. I go to the one in the next town because it’s larger and therefore less close contact. The problem I have is people are grabbing up toilet paper, paper towels, soap, etc. like they are preparing for armageddon. I’ve never been able to get disinfecting wipes or hand sanitizer. I already had wipes in the house and they are getting low. I use antibacterial hand soap and wash my hands until they hurt. When that runs out I’ll use bar soap. I have a disinfectant spray cleaner for surfaces, so we should be good for a while.

I wonder how many people left the City for this rural area just to get away from the concentration of the virus? As long as they behave responsibly, no problem. It’s not yet beach weather so physical distancing should not be a problem. Heck, I’d like to drive to Town Beach and just sit in the car. I usually will go out in the yard if it’s not too cold or raining.

I feel badly for those who can’t have visitors. There’s a new great niece in the family and her grandmother can only see her through glass. My stepdaughter is due in 2 1/2 weeks. She’s in NJ. I pray God’s protection on everybody, family or stranger.

I look forward to being on the other side of this evil virus. I had a nightmare earlier this week where it had taken every single one of my loved ones. My family’s area is probably about 2-3 weeks behind NY. It’s scary. Son goes back to work at least one day next week.

It affects so many things we take for granted. My favorite uncle died March 20th. His girls have to put off having a funeral or celebration of life. It breaks my heart. Babies being born at this time cannot be held by extended family. People are dying alone.

This needs to end soon. No one else should catch it or die from it. God helps us all!

Answers Soon?

We had a day two weeks ago (just one) in which hubby was walking normally. He’s back to walking like ET again. We were in town to get his knee injected today. After leaving lunch at KFC he barely made it to the car. I had to lift his foot into the car and getting into the house was a tad easier.

January 2nd he’ll have two more MRIs and a follow-up with neurology again to see if this is probably MS or if it may be related to his neck radiation seven years ago. I feel we’re closer to answers or at least narrowing down the possibilities. I personally believe he had several things hit at once because he likes to shake things up.

Just over a week before Christmas. The tree is still in the cellar. This will be my third Christmas doing everything. Tree and stockings will be up but probably less decorating than before. I still need to go back to town (20 miles) to finish up shopping and finish gift wrapping. I’d like to make the chocolate treats. One of hubby’s presents is fun size Baby Ruth bars. We can’t find them here so I ordered them online and marked the package “Open Last!”. That will be fun.

New grandbaby on the way. Hubby’s daughter is having a girl (pretty sure) in mid-late April. He tears up about it. He’ll have a princess. He doesn’t stand a chance. She’s not yet born and she’s already stolen his heart.

Time to get the tree upstairs, but first….coffee!!

Feeling Down

I should be happy. My sister came through an unexpected surgery today for another post cancer complication. Hubby’s birthday was yesterday and we had a visit today from his little grandson. His daughter brought a small cake.

After the visit Hubby was down probably because he had to hold onto the wall as he went to the bathroom. We have two more weeks before his neuro appointment. He doesn’t want more tests. He just wants to walk. He doesn’t want a more sturdy cane or walker unless he has no other option.

This hurts me. I can’t help my husband. I wasn’t there for my sister. I miss my family. I pray daily. It’s been two years of no answers. I’m not a patient person so by now I should be on my way to sainthood.

I see the doctor Monday. Everything will probably just spill out.

I just feel helpless. I should be happy.