Hold On Pain Ends

“Hope is the thing with feathers That perches in the Soul” -Emily Dickinson 

When faced with hopeless situations it can be tempting to give up. In those moments, an acronym for hope comes to my mind: Hang On Pain Ends. When I was growing up one of the pieces of advice, my Mom often gave me was, “don’t make a permanent choice in response to a temporary situation.” In moments of despair, profound grief, and well hopelessness it can be tempting to throw in the towel and give up. But, it is precisely in those moments when sometimes all one has to do is hold on.

Hold On

Holding on for me means doing the best I can with the situation in front of me. Some days, the best I can is merely showering, eating three meals, and not entirely losing my shit. Other days, the best I can is being present for the people in my life and giving back to the universe around me. When life happens, and I have to confront a hopeless situation it is the latter, not the former that sets in. But, in the confrontation of hopelessness, simply putting one foot in the front of the other can be enough.

There is a reason the saying, “it is always darkest before dawn” is a cliche. From states of hopelessness can come great joy and beauty. But, in our journey to the other side of pain, we have to hold on and face the pain.

Pain Ends

Think back to the last time your heart was broken, eventually with time, distance, and contemplation the pain left. Pain heals, ends, and changes. The worst pain we are experiencing today will eventually end. One of my favorite stories comes from an alcoholic in recovery that I know. For this person, we will call him Joe, every day for over a year he was miserable sober. Not unhappy, not discontent, straight-up miserable. Then suddenly, one day, he wasn’t miserable. He was so shocked he called both his twelve-step sponsor and his professional therapist, he just had to check and ask what he was feeling. Joe had no idea when his misery would end. All he knew was that every day he was absolutely miserable. But, he had hope that someday maybe it would get better, so he held on and eventually after months of not giving up Joe was no longer miserable. This is not to say that some misery came back from time to time. But, as Joe recounts those time became less and less and less until eventually one day he simply couldn’t remember the last time he had felt miserable.

For me, HOPE is the acknowledgment that eventually pain ends (even if just for a moment), and healing is possible.

HOPE

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Fatigue and I

“When we are tired, everything seems so very much worse” -Jane Green

The other day I woke up with negative spoons. For some Crohn’s patients, my reference to spoons is an all too clear reminder of Christine Miserandino’s article, “The Spoon Theory” written about her journey with Lupus. Miserandino’s story of spoons is her attempt to explain to her non-sick friend what living with Lupus is like. In the story, Miserandino compares her daily journey to spoons. In this compelling story, Miserandino says that people without illness have unlimited spoons to do whatever they wish with while those of us who have illness have a limited amount of spoons with which to navigate daily life. I absolutely hate, detest, loathe, and can’t stand when I have limited or negative spoons. For me, it is the absolute worse part of managing illness and one that I would much rather do without.

In completing research for this post and reading about fatigue and IBD, I became increasingly agitated and pissed off the best solutions to deal with fatigue are 1. Manage IBD, 2. Check for Anemia, 3. Manage psychological symptoms, 4. Improve the quality of sleep, and 5. Investigate medication side-effects as a potential for causing fatigue. While it is important that people with IBD pay attention to all four of the aforementioned recommendations, as someone who deals with persistent and at times debilitating fatigue, I will say that none of them have done much to alleviate mine.

The reason why fatigue makes me so angry is that it is the one Crohn’s symptom that I cannot push through. It is the one Crohn’s symptom that stops me in my tracks. I live in with daily pain, and I have learned how to work through the pain. I can have a partial bowel obstruction and still function as a participating member of society. However, when fatigue hits there is absolutely nothing I can do to make it go away besides stop, and the last thing I want to do is stop. For me, having to cancel plans, not do something I am looking forward to, and having to choose how to spend my limited energy is mentally and physically exhausting. I equate fatigue with my body failing me, and I hate how I feel when I want to do something but just can’t. I also hate that for me I have to make choices every day about the tasks that I want to complete- do I want to do laundry today or shower? Do I want to spend time with my family today or work? Do I want to cook dinner and save money or do I order out so I can clean my bathroom? Sometimes, my house is a mess, and there is a daunting tower of laundry staring me down, and I don’t want it to be that way, but, I had to make choices to either work, see family, clean the house, do laundry, get groceries, etc. and I just didn’t have anything left over to put into the mess or the laundry. When I cannot do something because my body has decided that it has reached its limit I just want to scream. Especially, when that something I want to do is at 10 am, and I cannot believe that I am already so exhausted.

I highly doubt anyone likes having limitations and I know my general detest for fatigue does not help me cope well with this symptom. I know that my own emotional process with fatigue makes me more likely to be cranky when I have it, and I also know that for me, some days will be easier than others and I must allow myself to throw the fatigue-related hissy fit so that I can then manage it. I am a big believer in stomping my feet and just getting the anger out.

I do not have to like dealing with fatigue, but I also have zero choices in the matter. So, I spread my energy out through the course of the day, take a nap in the afternoon, and consume copious amounts of coffee (I know coffee is bad for IBD and fatigue is bad for paying my bills!). I also manage my fatigue through letting others in my life know when my spoons are running a bit low. Even though I (like most people) do not always like asking for help, I also know that asking for help allows me to live my best life. When I alone do not have to manage it all by myself life becomes better.