acceptance

Suck It Up Buttercup

There are responsibilities taken in life that you never expected or wanted. That is how the last 6 weeks have been. My grandmother had her knee replaced and that meant I had to step up and try to fill her duties while she was gone. No biggie? Wrong.

The matter of cooking and cleaning at her home was taken care of for the most part by my uncle. He made sure Papa was fed and the dishes/laundry was kept up. It was all of the other things that became my burden, I was happy to do it because  it is my family and I love them. When a bill came in I would get out Grandma’s check book and forge the checks to make sure the water and the ‘can’t live without’ cable was paid. I ran errands and picked up meds.

Every other day I would go out to the managed care rehabilitation place and visit Nana to see how she was doing and keep her abreast of what was going on at her home and mine. Often bringing at least one of my three kids along so they could regale her with their tales of summer exploits. After a half hour to an hour we would leave so she could rest, go to therapy, etc.

Her being in the care facility post surgery was a God-send. She could have all of her needs met at the moment she needed them. She didn’t need to be taken to appointments doctor or therapy. It was all right there for her which made it easier on everyone and took the worry and strain off of me. There was no way I could be taking care of her at her home and still be able to take care of my family at mine.

The hardest thing, the responsibility I did not want and somewhat begrudgingly to admit hated was the care of my mother. Do not get me wrong I love my mother and there is always my familial duty towards her.

The relationship I have with my mother is complicated. Complicated by our past as much as the present. I shall give a heavily abbreviated history to give a little insight.

My parents separated when I was three. My mother left Sheboygan Wisconsin with me and came home to Iowa to be by her parents. My father an engineer would visit Iowa one to two times a year my whole life. He would come home for my birthday and a holiday such as Christmas or Easter, bringing me gifts like a bike, barbie ferrari or a radio boombox. Those visits were hard on me and I would be weepy and moody for a week or so after he returned to Wisconsin, I didn’t realize at the time how much it hurt not having a father but that realization came years later.

I grew up living in low-income housing developments as my mother and I lived on child support payments of $330-something a month. Sometimes food was a bit lean but we never starved and my mother would not apply for any food assistance and the like. I never had the fashionable clothes or the latest (you name it). I had regular visits and stays at Nana and Papa’s which was like some glorious holiday. They had cable, a yard full of green grass and trees to climb, and she always cooked big delicious meals and deserts-she also expected you to take seconds!

It is funny that as a kid you do not fully comprehend when things are not quite like they should be. Once you get older and looking back you can see the wrong that was in front of you all along. My mother slept a lot, I mean a lot. The appartment was always blacked out from the sun with thick lined curtains. When she was awake she could be loving and quickly change to teary or very angry. I spent as much time as I could playing outside rather than being inside in the dark with her. She could be abusive but I did not realize that it was abuse at the time. I would be spanked, a few times with hangers, for the smallest of infractions. Compared to the marauding gangs of near delinquent unsupervised youth in the ‘project’ complex I was an angel.

She would let me get some new to me (often thrift store) clothes and I would feel so good until she would make on of her regular down putting comments leaving me feel like I was fat or unattractive. She tried to instill religion in me by the fire and brimstone method. So I feared any misstep under condemnation to burning in hell. I never did sleepovers with friends or get involved with any extracurricular school related activities. We didn’t have money to spend on those or a car to get me there. All this and more left me so socially inept that couldn’t even talk in front of class at school without tears forming in my eyes.

As I aged I saw the irregularities of my home life compared to my peers and I saw injustice that was put upon me. I grew quietly angry. Internally I would steam over the fact that she never did anything. She never tried to better our life, get a job or education. She seemed content to hide away from life and responsibility. As soon as I graduated high school I moved out, not even telling her ahead of time for fear she would try to stop me with anger or more than likely guilt.

You may wonder about my father through all those years and why I didn’t reach out to him. Well, he was mostly an acquaintance, granted one that I loved and craved affection from, but we didn’t know each other very well. When I was nearing my teens he had remarried to another woman and my relationship with her was more than a bit strained. She came with her own set of issues and I already had more than my fair share. At that point the few visits a year were enough of a strain.

Over the years my view of mother changed, not that the anger completely dissipated but it was largely replaced with pity. She had been suffering from undiagnosed depressive disorders for years. She never sought any help with them so I in part still held some contempt for her inactiveness in even caring for herself. Then some 11 years ago my mother suffered a stroke. At that point and still to this day she was living with her parents, again a way of dodging responsibility for herself. They found her on the floor of her roonmin a near vegetative state which would last for a long while.

I was at my in-laws house having a pleasant visit when an uncle called with the news. When I hung up the phone everyone around me was hugging on me and showing genuine concern. I feel guilty about it but I was angry. It was her own fault…sleeping away her life, never doing anything to get the blood pumping, sitting and eating, getting heavier and heavier…she did it to herself-right? We left the kids there and my husband drove me back to town. During the 45 minute drive to the hospital I was quiet, trying to convince myself that I should not be mad I should be worried, that’s what a good daughter would be.

Over the weeks and months she slowly came back-somewhat. She eventually regained her ability to talk, remembered my name and gain her movement to a certain extent. These days she can talk and walk but with some definite disability. She hit the jackpot of not having to be responsible. Monthly disability payments, her aged mother to care for things at home and people to chauffeur her where she needs or wants to go. It frustrates me but at least I didn’t have to be responsible for her or feel guilty, she had all of her ducks put in a row by somebody else.

That was until Nana had her knee surgery. All of the insurance stuff and changes to Medicaid that happened this year became my job to fix and figure out. The fact that she never filed for Medicare when she turned 65 has created such a complex mess I cannot tell you how many hours I’ve spent on the phone trying to get things sorted out. Then there are all of the errands to appointments, pick up prescriptions, or going to the store to spend her money. Granted I was usually the driver for her and Nana for these day trips. But now my health issues, the kids out of school for summer, Nana’s surgery and all the rest it was seriously becoming the straw that was threatening to break the camel’s back.

I fully believe as I write this that I just may be an awful person. I am tired and tired of feeling put upon. I have gotten to the point where I am letting responsibilities at home slide. When I do get to just sit I want to do nothing but lose myself in a book. Then the phone rings and I dread answering it because what in the world does the world want me to do now. I answer it of course and wait for the next piece of straw to be placed.

I am glad to be able to help my family and I love them. So even when I am worn out and resentful of the phone ringing I take a beep breath and tell myself (often out loud), “Suck it up buttercup and get to it.”

 

 

 

 

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Little Things to Smile About

As I get older I get the biggest charge about the little things. That is the way I think it should be. The newest, biggest and best is okay I guess but over the years I find more joy in the little overlooked things.

Today just reaffirmed this thought. With spring on its way the slowly warming weather has rapidly melted away the snow. This reveals the hidden life waiting to recharge under the sun’s glorious rays.

In one of my garden beds the little mother hen and chicks look just as good as they did before the feet of snow blanketed them for months. This simple discovery brightened my day. Who would have thought finding small succulents in the yard would have taught me a lesson I nearly had forgotten.

When things seem bleak, cold or hard it is not permanent. It is merely a stage, a moment in a life of many moments. Those days of hardship will too pass and brighter days will return…if we look for them.

 

Nerves Misconducting

The saga of getting my prescription Multiple sclerosis medicine, as I shared in earlier posts, was finalized as of last Thursday. I was simply overjoyed when the UPS man came bounding up the porch steps with my package in hand. By that point my walking was terrible and many of my old symptoms come roaring back. Now I wish that I could report instantaneous relief and normalcy after taking the first pill but I cannot. After lots of rest and sheer dogged determination I am certainly getting around better but the other things are lingering.

It is amazing what you get used too. A person can deal with much and manage just fine. It is when one new thing is added or an old thing changes that creates the proverbial straw that broke the camel’s back.

I have had issues with paraesthesia, a kind of pins and needles, numbness, and maddening crawling sensations on my back for years. It will increase in intensity sometimes due to stress, weather changes, fatigue and Lord knows what else. As long as I take care not to absentmindedly claw my skin raw I can usually deal with it.

Then there is the MS Hug. It is definitely not a sweet as it’s name leads people to believe. Anyone who has experienced this can attest to that. For me it is as if a 800 lb gorilla is embracing me around my lower ribs & abdomen area. While the gorilla is not crushing me he is also not letting me take in decent sized breaths and thus I’d feel as though I could faint.

Numbness was one of my first symptoms of multiple sclerosis. All over my body are areas of varying degrees of numbness. I cannot feel anything in the majority of both of my feet, areas of the left side of my body and nearly all of my left hand and half of my right. I once absentmindedly moved a casserole dish without potholders, forgetting it had just recently come from a 400 degree oven. I didn’t feel the pain that I should have when I realized my mistake and suffered burns. Then there are the number of things I have dropped, crushed and broke(once a wine glass) in my hands. Greater caution and the number of burns, messes and lacerations over the years have been minimized.

Lhermitte’s Sign is a strange one. When I tip my head forward, chin towards chest a momentary electric shock sensation shoots down my back and to my finger tips. It doesn’t last long, simply a momentary zap.

The straw that’s trying to break the camel’s back…

The thing that I cannot completely deal with is an uptick in the level of spacticity and pain in my left thigh muscles. The pain as of late has been horrible, a stabbing burn deep into my quads. Bad enough it brings tears to my eyes when I allow myself moments of solitary weakness. I take a variety of things supposed to aid this but for some reason they are not doing their job as well.

The other thing is tonic spasms. Tonic spasms involve the extensor muscles (quadriceps-front of the upper leg & the adductors-inner thigh muscles) is an involuntary straightening of my leg. It is so bothersome and there is no way to keep it from kicking out. I try to mentally restrain it to no avail. The best way to describe it is like holding your breath too long, to the point your body is screaming for a breath until it suddenly gasps, only in this case it suddenly and painfully kicks straight. These spasms interfere with sleep, walking and climbing stairs.

I understood that I was going to have detrimental things happen during the 3+ weeks while I waited for the insurance company to do what they were supposed to do. I also know this is just the right now and may not be my forever. If it ends up being a ‘forever’ symptom I will just have to deal with it. I take solace in the fact that I have learned to adapt to so much already and my rate of success on that has been 100%.

Illness & Hate?

Anna Akhmatova
“I seem to myself, as in a dream,
An accidental guest in this dreadful body.”
Anna Akhmatova, The Complete Poems of Anna Akhmatova

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Today sequestered in my bed at home I unfortunately find that I am alone with myself. My family is here and they are in no way ignoring me. Yet I am internally alone with my thoughts and feelings, in my bed my awareness of all the things my body is going through is screamingly apparent. I am generally not one to have a pity-party and I tell myself that I sure as hell am not going to start having one now. Yes, I have been better. I remind myself that I certainly have been far worse. The problem is when a person is alone with their internal discord of thoughts and feelings they can become somewhat pessimistic. Given enough time your thoughts will boil down to…this sucks & I hate this.
I hate the disease.
I hate the fatigue.
I hate the need for assistance because my body is uncooperative.
I hate the looks of helplessness I see in the faces of those who care.
I hate the uncertainty.
I hate the burning cold heaviness in my legs.
I hate the bouts of cognitive soup.
I hate the headaches.
I hate missing out.
I hate letting people down.
I hate the worry I cause.
I hate the pain.
Hate is a awful word. It is a word I rarely use. Hate is such a strong expression of detestation and loathing that there is few things in my life I can honestly attribute it to. It is when I am at my weakest that I feel free to apply it to things. When that happens I must stop myself-refocus, breath, take stock, and have faith.
If I were honest right now I must amend the fore stated list.
I wish there was no disease.
I accept the fatigue.
I love that I have people to help me.
I appreciate that people care enough to be concerned.
I understand that I do not know what will happen.
I adapt with layers to keep warm.
I laugh at my tendency to lose my track of thoughts.
I believe my headaches are temporary.
I enjoy what others can do.
I acknowledge that others will worry.
I undertake the pain, knowing that despite it I will not relent.

thomas bernard
“Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it’s the worst possible condition, because, if it is, we’re finished anyway, whether we go on the journey or not, and it’s better to die having made the journey we’re been longing for than to be stifled by our longing.”
Thomas Bernhard, Concrete