215 // This Is Not Optimism

Another bad night and another bad morning to follow. After a night up with pain and down with worry and low self-esteem, I’m tired beyond words today.

I started by trying to fight the fatigue. I got out for a short walk with the dog and made grand plans to clean the house and get some much missed writing time in but I lost the battle quickly to naps that were only interrupted long enough to eat and apologize to my wife before falling asleep again. The rest did me good, though. By early evening I felt part of the living world again and managed to mark one or two check marks of my to-do list.

I’ve already decided to stay home tomorrow. I already know that I’m not ready yet to return to work. I’m taking my medication, staying hydrated, and meditating to manage symptoms, but I’ve just gotten so bad that recovery will take more time and patience than ever before.

In addition to take I’m doing my best to stay optimistic, but like everything else, it’s harder some days than others. Sometimes I wonder what the value is in optimism at all. It feels like nothing but another kind of pressure, another expectation I can’t meet. I don’t want to be optimistic. I want to be realistic. I want to be angry. I want to be sad. I want to be negative and nihilistic.

But that isn’t me, or, it isn’t all of me. I’m angry, but I’m more than this anger. I’m sad but there is more to life than this sadness. I’m in pain but outside of this pain there is still beauty, love, and life.

When you have a chronic illness time moves slower. A few weeks of flare up can begin to feel like your whole life. The pain and pessimism become all you can feel, see, and think about. This low quality of life stretches out behind you and in front until no way out can be imagined. Memory of healthier times and the hope of healthier times to come fade.

I know this is a lie. I know that this struggle is as temporary as every other struggle I have overcome before. Soon, one way or another, things will get better. I will get better. This is not optimism, this is truth. This is being realistic. This is no expectation or pressure. This is an inevitability.

214 // A Brief Normalcy

Today is a better day. I’m feeling more solid, physically, more present and connected to my body, stronger. This is always the first sign of healing. Before I can see tangible improvement, before I can see or feel exactly what and where I have begun to heal, I feel it in my spirit. A corner has been turned, but I know that doesn’t mean that the journey won’t be agonizingly slow and that setbacks are not on the horizon.

And so, because I was feeling a little better and because I have been feeling so down, I decided to venture out with my wife for some shopping therapy. The weather was gorgeous and having a few new things for the home made a big difference in my mood.

Of course there were tough moments. This ulcerative colitis flare has progressed so far that I’m left with a great amount of fatigue, pain, discomfort, and anxiety almost all of the time. There were moments today between all the positivity and the hopefulness, when I wanted to break down, but I breathed through it. I sat with my pain and fear and fatigue and I gave it space to breathe too and each moved to let me pass for a time and I am grateful for the brief feeling of normalcy.

Unfortunately, the outing was still just slightly little more than I could handle and when I got home, I crawled right back into the bed to recover.

The evening is settling in now. We have some rain clouds cruising in from the mountains, but they don’t appear too threatening. I’m looking forward to a calming and cleansing rain. Much of my cleaning was done last night and I’m basking in the peace of knowing I have nothing I have to do and nothing anyone is asking of me. I may write for a while or work cut and compile a new collage piece.

Or maybe I won’t push myself to make, or read, or write anything at all. Maybe I’ll give myself permission to just lay on this couch, watch some mindless TV, and enjoy a couple of glasses of wine with my wife before turning in early. I deserve it. I need it.

140//366

It’s infusion day, again. This one is a little more special. It’s the last of what they call the “loading doses”. After this I go on a more regular schedule of every eight weeks, as long as all the tests they did at the lab beforehand come out stable that is. We still have to see if the drug levels are where they should be and if my white blood cell counts and a few other things are where they should be.

I’m still dealing with some questionable and slowly worsening symptoms, but I’m in contact with my healthcare team and no alarm bells are going off yet. A few more tests have been ordered and I am being asked to hold off on lower the dosage of any of the medication I am currently taking which is a real bummer. I was looking forward to at least one less pill a day for a while.

The center is still a lot quieter than usual. I think non-essential procedures are still being postponed. It was nice to be to be out of the “broom closet” private infusion room and back into the open area with the big bright windows again but the nurse warned me that next time I may not be so lucky.

I know other people need these spaces, but it bothers me that because my infusions are shorter; I have to be shut into a windowless room and every time I bring it up t the staff I’m brushed off. I don’t think they understand that it’s depressing to be there no matter what your condition or how long your infusion takes. I should at least get to see the sun while I’m there.

086//366

It feels like it’s been months rather than weeks since I last had to get up and get anywhere on time. Today is my infusion appointment. My third out of the first four they call the “loading doses”. Getting out of bed and then getting ready was difficult. I’m just not used to it anymore but at least we were able to leave the house a bit later this morning knowing that there would be minimal traffic on the roads.

I’m hear now and about halfway through the bag of medication. I’m not in the small windowless and cramped room they had previously shoved quick infusion patients like me into. No, I’m back out in the big open room, but it’s not as cheery as usual.

The blinds are drawn and there is no sun or mountain views from my comfy recliner, and the place nearly empty. The nurse working with me explained that most infusions have been cancelled to reduce spread of the virus. Only chemotherapy, inflammatory bowel, and other patience who are relying on this place to keep them at optimal health are allowed in now. I’m ashamed that made me feel important.

I hope by the time I come back at the end of May things will be a little more like normal again and though that means I’ll most likely be back in what my wife calls the “broom closet” for my infusion I need the sun and the people, the smiles and cheer. This place, though by definition is a sad one, has paradoxically always been a source of encouragement to me.

172 // From Bad to Better to Best

I’m still not feeling much like myself but I am doing my best and pushing through. I just wish time would move a little faster so I could get back home and get back to resting. I’m grateful for my fiance today who will answer a call and reply to texts even when she’s busy because she knows I need her. I’m grateful for a partner who will leave early to make lunch plans and who can make me feel that even if  “right now” kind of sucks, “soon” will be so much better if I can just hang on.


So, lunch had to be canceled due to family emergencies, but the day still got so much better. I got that nap I needed very much and afterward, we went to do another fitting for my suit. It’s coming along so beautifully. Now just the pants need to be hemmed up and let out a little at the waist.

The weather was crappy, and we were hungry. The week was still wearing on us still and we’ve missed each other, so we opted on impulse for a much-needed dinner and a movie date night. We got crappy seats to a zombie comedy, ate too much popcorn, had too many cocktails, and giggled like schoolgirls in love. Oh, how I’ve missed that! The week couldn’t have ended on a better note!

171 // It Could Be Friday

Today was a hard day. My mood is in a downward swing and I’m not playing well with others. I did my best to fake it for as long as I could but I ended up calling it a day early and heading home to my dog and a good nap.

Fatigue is killing me. I used to be able to fake it. I used to pride myself on my ability to power through, but lately, I haven’t been able to hide it so well. Lately it’s been noticeable and lately, I can’t even gather myself up enough to pretend.

I have the option of making today my Friday and making Friday the beginning of a three-day weekend which sounds really nice but I keep doing the math in my head so many dollars per hour times so many hours per day is how much money I am taking away from us when I stay home. My actions impact others and taking care of me often means depriving my home of something it needs.

It could be Friday but I doubt it will be. My guilt won’t let it.

157 // I Need to Sleep

Productivity will be impossible today.

In addition to the aforementioned fatigue that has been plaguing me and two nights in a row of staying up much, much later than I should, I took an allergy pill a coworker gave me this morning and find myself ready to fall asleep where I stand.

I’m growing increasingly irritated at the inconvenience of a day job and angry at having to force myself awake. I’ve had three espressos and seen zero signs of improvement and have resorted to walking around the building outside hoping to keep the blood flowing to my brain. I’m doing everything I can to outpace the drowsiness creeping into my limbs but I just need to sleep.

I’ll head home in just a few hours and do my best to squeeze in a catnap and a late lunch before I’m off to help my mom with a few things. I’m already looking forward to the evening when I’m back home. The plan is to crack a beer, eat something bad for me, and head right to bed.


These entries are inspired by TDH.se

 

156 // Midweek, Mostly

It’s my second day at work after taking another three-day weekend and I’m already ready for the week to end.

I’m determined to work the rest of the week but my fatigue is terrible and only getting worse. Caffeine has stopped helping and I worry that increasing my intake will only make matters worse. I need more than rest or sleep. What I need is a break. I need time outside of time.

I need to get away from all the things that are making me anxious. I need to get away from work, from people, god, from myself most of all. I need to spend some time in deep focus I think. I have time to spend there but not enough time to get anything of substance or value done. Things interrupt me. I interrupt me.


These entries are inspired by TDH.se

076 // A Body That Won’t Cooperate

I’m feeling awful today. My head, my stomach, my whole body! And I’m so tired. I got nothing done and now I’ll have to spend tomorrow trying to redo today.

I guess that’s not so bad, as long as I actually feel better. Either way, I will do my best and then I’ll do just a bit more. I want to hit the ground running this week and get some shit done this week. I don’t have time for this chronic illness crap. It’s so frustrating to be inside of a body that can’t, or won’t, cooperate.


These entries are inspired by Thord D. Hedengren

054 // A Whole Lot of Unproductivity

I woke with grand plans this morning but lost the battle to myself and the couch early on. In my defense sleep has eluded me all week. I’ve been overworked and filled with worry. I’m still off my medication and my body is responding in strange ways including a persist and headache and joints that ache in turn. In my defense I was defenseless.

So, today I rested and I ate, and tomorrow I’ll get up and try again.

Wish me the best of luck would you?


These entries are inspired by the journal posts of Thord D. Hedengren