Tag: attitude

Coping

I have been feeling pretty good lately. Oh shit did I just jinx myself?
I’ve been consistently active lately. That’s why I’ve been feeling ok.

My definition of good, when I say I’m feeling good, probably differs from yours. There are days that I get out of bed and my legs tell me what kind of day I’m going to have. If my legs feel like I have bags of cement tied to them it means that I’m not off to a good start but all hope is not lost. It is those days that I expend all the mental energy that I can muster to make it through whatever I need to do. Errands, etc. If I have nothing that I need to do, I sigh in relief. I used to beat myself up over the do nothing days but I’ve given myself a break. I have limitations and sometimes I can’t come out to play.

A day when my legs feel good are the days that I almost, I can’t stress the almost enough here, feel normal. I hate that word don’t you? It means that I have some spoons in the drawer and that I have a limited amount of time to do something that requires me to go out in the world and be among people. The drawer could run out of spoons at any time and I needed to be near a bench when the spoons were gone. There will be days when I go strong. On those days I overdo it without exception. There is nothing to be gained in overdoing it because the next day I will certainly suffer. Cramps, fatigue and a general largess will leave me sofa-bound for sure. But I will smile a bit knowing that I did something that day.

One of the hardest things I’ve ever had to admit to myself is that I am sick. Sick isn’t always visible. That’s because we don’t want you to see. We want to look normal. We smile through pain and push on when our bodies beg us to stop. I always thought I was special. I thought that I could fake my way through feeling the effects of Chronic Kidney Disease. I couldn’t. I later thought that I could endure dialysis without experiencing the effects that others do. I couldn’t. So I was forced to admit, in addition to being sick, that I am in fact deteriorating. Deteriorating to the point that I fear it is not long before I’m unable to do the things that make me happy and keep me sane.
This has been haunting me.

So many people have told me to be strong, that I have so much to live for. This I once tragically forgot momentarily and almost made the mistake of all mistakes. But it is now at the forefront of my brain, the knowledge that to end my life would cause a lot of pain for some people. I don’t have that in me. The thoughts of seeing 4 weddings, welcoming grand babies into the family, listening to music, and doing every possible activity that puts a smile on my face do indeed give me something to live for. But…my brain constantly screams at me that the most important thing to me needs to be quality of life.

It’s not selfish despite the obvious implications. Milestones in life are awesome, but the pain is still there while you’re waiting for them to happen. I’m wiped out, my hands are cramping, I stopped feeling sensation in my feet about 3 hours ago (Did I mention that I now have Neuropathy?),my legs are swollen from the knee down and my dialysis port on my left forearm is throbbing. It’s unlikely that I will sleep tonight and when 3 AM rolls around it will be me and the pain and exhaustion. Trust me, at that hour in that condition the last fucking thing you are thinking about is giving away brides and bouncing a baby on your knee. It is the witching hour and the dark thoughts fight for dominance.
I wish nights like that on nobody, not my worst sworn enemy.

All that aside, with the exception of the occasional bouts of insomnia, I’ve been out in the world and accomplishing things. I’ve been running a successful little side business cleaning cars. It kicks the crap out of me almost every time but it’s good money.
I bought a brand new Harley Road King. It is the bike I’ve always wanted. When I ride I have a smile from ear to ear on my face.
We may be getting a place in Florida. I have the opportunity to stay down there all winter should I want to. That has been giving me hope to carry on.
I have a fairly active love life right now. 3 women who are actually interested in me. Problem is that I still want the married one and I’m willing to wait and see what happens. She certainly gives me a reason to look on the bright side.

It’s been a hard road back from my fall from grace. But there have been some lessons learned and coping mechanisms formed. For now at least I’m on a good road.

But the pain is still there…

Refreshed

It’s good to be home.

5 days in the hospital and no diagnosis why my BP is out of control and I keep experiencing spontaneous nausea and vomiting. They made a small adjustment to one of my meds for the BP but overall every test on my gut came up Negative. Oh well, it’s not the first time I’ve defied medical science.

Believe it or not I got some rest. Yes, you read that correctly, I got rest in a Hospital.

I’ve been really, uncharacteristically lazy for so long. My illness has really beat me down. While I actually have very little to do, I have been having a hard time doing it. I was almost out of Spoons. (If you are not familiar with the Spoon theory here you go) https://wordpress.com/post/goodtobealivetoday.com/5461 . On top of all of it I’ve been beating the ever-lovin’ shit out of myself mentally for being so lazy. It was a constant, vicious circle and I was exhausted.

Hospitals are not known for letting you sleep. Nurses wake you at all hours of the night for blood and vitals and DR’s traipse in all day long. I’ve ended many visits more tired than when I went in. It’s been anything but quiet and restful. This one was different. Because I told no-one that I was hospitalized and visitors were prohibited due to COVID, this visit was very quiet. Consequently, I had a opportunity to do some extensive mental, emotional, character, are-you-the-person-you-think-you–are inventory. Long story short I came home mentally refreshed.

The biggest takeaway is that I need to give myself a break once in a while. I am conflicted by my resolve to act and feel normal and the knowledge that I have increasing physical limitations that simply won’t allow it. I need to listen to my body when it tells me “nope, ain’t happening”. Beating myself up does nothing to help how I feel. I think if I can do that, forgive myself for moments of weakness, I can get back to the old Superman. For now, I need to take it slow.

Baby steps, Superman. Baby steps.

the dynamics of hope

“Have you ever thought of harming yourself?”
My favorite question of the Hospital admitting process by far. In the many times that I have been asked this, especially lately, I have answered with a knee-jerk and resounding “no”. Thursday, before I could stop myself I said yes.
My first reaction was to try to backpedal, but then I said Fuck it and went with it. Let’s face it, as little interest I had in talking to a hospital therapist or clergy, I hated the thoughts I had been having more.
The Social Worker entered my glass enclosed room mere moments after I said it and began asking me a million questions. I was guarded and tentative at first about answering. I wasn’t raised in a “talk about your feelings” type of household. I could better describe it as a “suck it up Buttercup” environment. Courtesy prevailed, however, and I endured. Apparently, my answers failed to raise any major red flags with her and after a declined offer of clergy or further discussion she left without incident. I closed my eyes and braced for the next shoe to drop.
“Hopeless”, the nurse exclaimed.
I opened my eyes. “What?”
“Sorry”, he said. “I couldn’t help but overhear.”
“I’m listening”, I said.
“You don’t want to end your life, you are just failing to find things that make you want to keep going.”
Wow, holy crap and WTF. He nailed it. We talked about it until he had to move on to his next patient.

I have NEVER been a suicide-minded person. I have also never considered myself a “happy” person I have perpetually danced on the edge of happiness and what I lack in joy I make up for in positivity and perseverance. I have never hated life and I have a huge problem with the selfish nature of suicide. I believe that if somebody doesn’t want to go on they don’t have to, but I also believe that it doesn’t end the pain, it only passes it on to the living.
But those dark thoughts have been creeping closer lately. The days are shorter. The sunlight is being coy. It’s cold. I’ve been in constant pain and sick more frequently. I live in a touristy area and it is the wrong season. I’ve spent many 3 AM’s sitting on the side of my bed, head in hands, looking for reasons to go on.
I’ve been in a bad place and couldn’t get out of my own head. I’d forgotten about hope.

I need to figure out how that happened and make sure it never does again. Did I just forget that I have children who love me? Friends that want me around? The good times yet to be had? The amazing and beautiful woman that has come into my life when I believed I would be alone forever? The gorgeous sceneries yet beheld behind the bars of my new Harley? Most important, have I forgotten that even if I’m not needed as badly as I, and all fathers I suppose, once was does it mean that I am not wanted around? All of these things are contingent on looking forward to tomorrow with a fresh and hopeful outlook.

I don’t know what happened to all of these things but I’m going to spend this current visit working on that list of things that await me when I get home.

I have NEVER projected hopelessness before and I don’t plan on doing it again. Hope springs eternal, pain is temporary, life is precious and death is permanent. I’m so glad that I had the opportunity to refresh my outlook before it was too late.

Suck it up, Buttercup. You’re better than this.


Good days, Bad days

Adjusting to life on dialysis has been a challenge to say the very least. At the beginning, when I begrudgingly began treatment, I found the schedule harrowing and highly inconvenient. Commute time, prep time, getting on the needles and setting up the machine, 4 hours in the chair (which is surprisingly long and uncomfortable to stay still for that amount of time), coming off the needles with the accompanying pain and bleeding and then being evaluated as fit to leave…it’s at least 5 hours per day. It’s almost a part time job when you add it up and a big chunk of my day 3 days a week. But I got used to it. The problem I found was that I, not unlike every other patient, was washed out and tired rendering me essentially useless for the rest of those days.

It’s been a year and a half now and not much has changed. There has been some progress on some fronts. I have a potential donor, which I normally don’t get excited about because every person to date that has offered didn’t take the next step when asked. The next step is calling my team and inquiring about the process. Nobody to date has done it but him.

He was told to lose 30 lbs when he called and I found that to be unacceptable. What if I was dying? Would they put me on life support until he lost the weight? At that point I wrote him off, only to have him text me that he was down 12 with 18 to go. That is a glimmer of hope and I will leave it at that.

I’m officially on the transplant list. Finally. I received a Pager in the mail on Friday that I am to wear in the event that a matching kidney becomes available. The wait time is 3-5 years with a credit for time on dialysis so I’m basically halfway to it, the only obstacle is that I have a bunch of antibodies that I picked up in a transfusion when I almost bought the dirt farm last year. This series of good events has inspired me to step up my fitness. Although I am in decent shape, according to my dialysis nurses I’m a fine specimen by their standards, I really want to go into this in the best shape possible. So despite my frequent walks, calisthenics and overall attention to my diet, I have begun an actual workout routine. To solidify my commitment I joined a fitness center.

In my area of NH there are no Planet Fitness or Work out Worlds. I would have joined one a long time ago. I discovered this place quite by accident. My mother started doing Physical Therapy for a leg injury and she told me about the place. As it turns out, a place that I have been driving by for years is not just for PT but is an actual fully equipped Gym complete with every machine you need, free weights and a crossfit room with my favorite accessory…the heavy bag.

I joined immediately.

The challenge is how many times a week I can go. I’ve gone on a few dialysis days and I always go on the off days. Essentially, I go when I feel up to it. I have been really working hard and it seems to be paying off. In addition to feeling stronger, many people have told me that my physique has changed a bit. That my chest is prominent, my shoulders pop through my shirt, my gut is smaller, my arms look bigger. All that is fine and good but the bigger picture is that I am doing something that seemed unrealistic and unattainable.

But I’m doing it. All of the people that have told me what my limitations are or should be are eating their words. They can’t define what I can and can’t do. They are simply not me and they need to understand that.

I have good days and I have bad days. Lately the bad days have been more frequent and I find myself at home feeling like a giant shit burger and I get mad at myself. I then remind myself of what my real limitations are, that I am doing the best I can, that I am not just accepting my lot but instead fighting it. But the realities are there, the other voice tells me that it’s ok to not feel great all the time. It happens. Still, I continue to feel that I am not the typical dialysis patient and that I need to push myself. On those occasions I get down on the floor and do pushups or I go to the club and I move as much weight as my body, on that allotted day, will allow.

3 years ago when my kidney failed I thought that it was something that I could work through and I foolishly joined a gym. With bloated legs (water retention was brutal), a very overweight and out of shape body and very little stamina I worked out to the best of my ability 4 times. The results were not good. I was weak, washed out, bloated, sicker than I wanted to acknowledge. On my last exercise of my 4th workout I was on the weight bench. On the bar I had a weight that I used to warm up with. Not much at all. I got pinned under it. I actually had to have a good Samaritan pick it up off my chest. Embarrassed, I immediately left and never went back. That feeling stuck with me.

Today, I tried the same weight on the bench press that buried me. To my amazement, I benched it 10 times.

Today was a good day.

Life happens fast and we are all dealt a hand that we must either fold or play. I’m playing mine. It’s the results accomplished on a good day that are going to carry me through those days when I’m mad at myself for not being able to climb a set of stairs without needing to sit down. Those are the bad days.

We all set goals. I have adjusted mine to simply work my ass off to ensure that, until my miracle happens, I have more good days than bad.

Life’s a Garden baby. Dig it.

the waiting room

If the sun is out I take the motorcycle to Dialysis. If I have to be there then I’m going to arrive and depart with a smile on my face.

Most days I spring out of my chair, exit to the waiting area, grab my helmet and go. Sometimes there are people in the waiting room, waiting to pick up a patient. I know most of them and who they are waiting for. For the last 2 weeks there has been a new face, a woman, 70ish with a kind face, that I deduced was waiting for the new patient Bob. Bob is a 70ish ‘Nam vet who just started treatments. I’d never spoken to him but he looks like a nice guy, with a new unpleasant development in his life.

Today, as I exited the clinic and grabbed my helmet she spoke to me.
“Can I tell you that you’re amazing?”
“Amazing? Hardly. But thank for you for saying that. And while we’re on the subject, why exactly am I amazing?” I replied.
“You bounce out of here, helmet in hand and ride a motorcycle out of here. After Dialysis. I don’t know how you do it.”
“I have to”, I replied. “It’s the only way I can make it tolerable.” I sat down across from her.
“I see Bob wears a lot of Harley stuff, is he still able to ride?”
“No.” I had touched a nerve. “He can’t support the weight of the bike anymore because of…”she motioned towards the clinic door, “this”.
“I get it.” I replied. “This is tough”.
“Not on you. If it is you don’t act it.”
I explained to her that it is quite to the contrary. That I have a tough time with it sometimes but I put on a strong face and do my best to make the most of when I feel good. She politely nodded as I talked, looking down at the floor.
I asked her how Bob was handling it. She told me he is feeling pretty lousy but getting used to it. I found that to be a good time to tell her that I was the clinic’s Patient Advocate and offered to talk anytime she or Bob may want.

At that moment Bob came through the door. His wife immediately said “This is Bill. He’s the one with the Bike. “
“Hey, Bill. Nice to meet you.” Bob wearily sat down in the chair. “Nice bike.”
“Thanks”, I replied.
“Bob”, his wife spoke up. “Bill is the Patient Advocate for the clinic.”
He looked at me and said “What do you do?”
“I’m here if you need advice, recommendations about the dialysis process or just here to talk if you need it.”
“Talk about what?”
“About Dialysis. About the emotions you will feel and the aches and pains you will experience. We all go through it.”
His facial expression showed total resistance. Then, before my eyes it changed. “Maybe I’ll take you up on it sometime.”

We walked out. He checked out my bike. I was careful not to ask him about riding. He then surprised me. “I’m thinking of getting a trike. I don’t have to worry about supporting the weight.. I can still ride that way.”
“That sounds awesome, Bob. The more you keep doing what you love, the less sick you feel.” I winked at his wife. She smiled.

I watched as they got into their car. She drove. As they pulled out she mouthed the words “Thank you” to me.

I’m not sure I did anything remarkable, I just shared the best kept non-secret I have. Illness only wins when you allow it to. Keep living your life.

Showing up

You’ve heard the quote, although the percentages vary, 80% of life is showing up. I agree. Wholeheartedly. I have always shown up, I’ve even been early more often than not. But I’ve always thought about a caveat. After you’ve shown up…then what?

Showing up without pursuant action is a false gesture. It is not enough to wake up and say “I’m here”. You then have to say, “What am I going to do now that I am?”

In my current state I am, on paper, the least able to be a man of action that I have ever been. My health, my time, my remote location have placed so many constraints on my ability to be the involved person that I once was. For a while, as I adjusted to my new lifestyle of scheduled clinic visits that occupied 15-17 hours per week, a new home over 100 miles from my friends, family and my beloved Masonic Lodge, and many additional days of unplanned fatigue and general crappiness I was noticeably absent where I was once omnipresent.

Now, I am happy to say that I am back in full force.

I’m back as a full-time member of my Masonic Lodge. Once word got out about the ordeal it is for me to attend, often while not feeling well, other members felt inspired to follow my lead. In addition, I was able to rejuvenate a Charity of ours that had been without a leader in my absence. In the first day we helped 3 School students fulfill needs not available through traditional programs.

I’m back volunteering at the Food Pantry, I’m not able to do the full shift but I still stay as long as I can.

Our Community Club, consisting of most of the full-time residents of my town is suffering from an aging membership and a drought in people willing to lead. I threw my hat in the ring for Vice President. An older member approached me and thanked me for “stepping up.”

It feels good to get involved, it feels better to get results. It wasn’t enough to go to my meetings, to be a kinda volunteer at a charity. I had to be a part of it. I have to tell you that it feels great. It’s almost enough to take my mind off of the myriad problems that would bring a weaker man to his knees.

This morning I sent 2 texts and made 3 phone calls to friends who are dealing with obstacles in their lives. One of my buddies came home Friday to find that his girlfriend had left him and took her 2 kids, who had been like his own children for the last 8 years. Another lost his job yesterday, no severance package. Another is going through terrible marital problems. The others were ailing friends and brothers. They were all grateful for the call, and more than one asked why I was worried about them with all I have going on. I told them that I’m here, I don’t really have anything else to do, what better way to spend my time than doing something positive with my time?

After all, time spent in service to others is time not spent focusing on yourself.

I’m here. I showed up. But that wasn’t enough. I still have something to offer and as long as I am of value to others then I will continue to value myself.

Don’t just show up. Jump in and make shit happen.

Superman out…