Falling Away

I’ve had a terrible time in recent weeks: extremely erratic sleep, high pain levels, low mood, swollen legs and feet, and tears. As terrible as it’s been, I’m always conscious, and working at accepting, that when one has to save their energy to cope with intense pain every day, other things in life sometimes need to fall away.

I’ll use a recent situation to illustrate my point: The sink in my bathroom was replaced. What started out as a small leak became a major undertaking when the exact location of the leak couldn’t be isolated. I noticed the leak months ago. It caused a constant slow drip of water into the cabinet under the bathroom sink. I had to remove all the toiletries and other bits and pieces stored in the cabinet because the drip became strong enough to splatter and get things wet. To prevent water damage I also placed a small container on the spot where I saw the drip landing and pooling on the bottom of the cabinet.

Shortly after I placed the first call to the resident maintenance manager, he came to inspect the leak. After his inspection, he assured me that it was a minor issue he could probably resolve within an hour. He returned the next day with all his plumbing gear and a replacement part for something on the sink’s main pipe. Can you tell I know nothing about plumbing from that statement?

As promised, within an hour he stood up from under the sink and declared the leak fixed. Unfortunately, the next day when I opened the cabinet doors and knelt on the floor in front of the empty cabinet ready to replace the shelf paper and refill it with my things I noticed that an area of the shelf was wet. I was not happy about it.

I placed another call to the maintenance manager. He found it unbelievable that his work had not resulted in a permanent fix of the leak. He returned to my home and fiddled under the sink a few minutes longer than he had the first time. This time he said the issue was not a pipe at all. It was the sink itself, which due to age and erosion had sprung a leak on its bottom. This time, to complete the repair, the sink had to go and a new one installed in its place. When this would happen or how long it would take was up in the air. The maintenance manager first had to check his inventory to see if he had a spare sink that would fit then schedule a time to do the work.

As I said before, that was months ago. While I waited, I moved all the things that once filled the cabinet under my bathroom sink to the hallway outside my bathroom. All those things sat in uneven rows I had to walk past many times every day for months: bottles of shampoo and conditioner, jars of hair gel, bottles of lotions, soaps, hair clips, makeup, and more. I passed it all in the hallway every day and tried to pretend it wasn’t there driving the neat freak inside me crazy. I didn’t fuss or make a complaint about the length of time it was taking to fix what started out as a small leak. Instead, I waited patiently for the maintenance manager to buy a new sink and complete the repair.

This story about the repair and eventual replacement of my sink is akin to what my life has become. Since my misdiagnosis nearly five years ago, I’ve had to allow many things to fall away and become less rigid about who I am and what I find acceptable. I no longer fuss or complain about my circumstances, nor do I push my doctors to do something to make me better NOW; as I did with the doctors at the beginning of all of this. Doctors whom I did not trust, with good reason, since I soon learned they misdiagnosed my illness. Much like waiting for the arrival of a new sink, there isn’t much I can do to hurry things – namely the changes in my health that I desire. Even though treatments continue to be unsuccessful, I believe my current doctors are looking for answers and doing everything they can for me.

I now bear the inconvenience of delayed deliveries, the disappointment of canceled plans, and last-minute rescheduled appointments or treatments as if they were displaced bottles of shampoo and lotions because I understand that sometimes $h!t just happens and I have to roll with it. Still, the most significant thing that has fallen away is any unreal expectation(s) that the first attempt with newly prescribed medication(s) or treatment(s) may instantly cure and make all that ails me better because sometimes the fall from the height of unrealistic expectations hurts more than the pain itself.

Besides, the intensity and wide arc of the moods and emotions (anxiety, anger, agitation, sadness, and more…) don’t serve me well either. In fact, they worsen my pain. Therefore, allowing them and so many other things to fall away is necessary to cope better with my illness. Furthermore, I’m finding that the more I relax about things, the less likely I am to have a pain flare up, which is a small comfort when a body always has pain.

 

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The Difficulty Of Being Loved

FACT: When we are loved, it’s not always easy to accept it and take in the full meaning of it.

The difficulty of it lies in trusting the realness of receiving something immeasurable without any expectation of having to give a single thing in return. It’s especially difficult when we have lived lives where we survived abuses and/or significant traumas where love and tenderness were withheld to increase suffering. How can a person trust a reality where things are given without a price or obligation attached, when one’s whole existence screams that it isn’t possible to have that, to be worthy of that, or deserving of another human being who regards your being with tenderness and care?

I’m a witness to this struggle now. I’m seeing this unfold in the life of one of my friends and the mental health toll is enormous. My friend’s partner is in the midst of a major health battle and seems incapable of accepting, or acknowledging, how deeply they are loved and cared for by so many people. This person could be told every hour on the hour that they are loved and they still might never believe it. The exhaustive effort invested in repeated attempts to show love in tangible ways with the gifting of things, through deliberate actions, physical emotional comforts, and just being there are all dismissed as insufficient or outright meaningless; which makes the giver, in return, feel unloved.

Being on the receiving end of this dismissal may be a deeper pain than never being loved. Watching someone I love live through something like this makes me feel helpless. There isn’t enough I can do or say to make this situation better. I can be supportive. I can tell my friend kind words or make suggestions about how to cope. However, I know my actions and words only salve the pain during the moments when we interact. When those moments end, my friend is the one who returns to living this difficult reality. A reality that – if I’m reading things correctly – is not going to end well, no matter how much I hope for an alternate result.

As this situation unfolds, it’s getting harder for me to understand why people make living the lives we have so much harder than they must be. Why do we treat each other so harshly? And why, when we are most in need of it, do we reject the kindness and love of those closest to us?

 

Bonnie Raitt – I Can’t Make You Love Me

 

Sleep: The Unconscious Way to Cope With Pain

Have you ever had such intense pain, physical, or other, that all you could do to cope with it is sleep?

I’ve slept for the better part of the last 2 days. I had to attend a family event on Sunday afternoon. When I say “had to” I don’t mean forced to, I mean I would have felt horrible – worse than the pain I’ve had since – if I hadn’t attended because it was in honour of one of my favourite aunts who does whatever she can for everyone. However, between the drive to the home of my uncle who hosted, moving around to interact with all the family members and family friends; and then the drive home, my body had to go into near shutdown so I could cope with the resulting pain flare up.

By the time I arrived home around 11:00 PM on Sunday night, I knew I was in for a rough few days; not to mention my experience dictates that it takes at the very least two days for me to recover after going out to do anything. Upon arriving at my uncle’s house in the afternoon, my pain level was already climbing; and on the drive home, the soreness in my legs had already become unbearably intense. When my feet touched the ground as I got out of the car, it was definite that I would not escape the punishment for daring to enjoy life just a little bit while celebrating the life of someone I love. After shutting the door to my home behind me, I made a beeline for my bedroom to change into cozy pajamas then I went into the bathroom to perform the nightly rituals of brushing my teeth and putting my hair up so I don’t wake up with an equally painful tangled mess of hair to deal with.

I was in bed by midnight. It took some time to fall asleep because I was so uncomfortable with the pain building throughout my body. I vaguely remember waking a few times during the night, but I know I was too exhausted to awaken fully to take my overnight breakthrough dose of pain medications. I even slept late and missed taking my first large dose of pain medications on time at 6:00 AM. However, being late this one morning didn’t matter much because being asleep kept me unaware of the pain. The rest of Monday was spent in a groggy haze of pain medications and sleep, but I didn’t miss much because it poured rain most of the day and the grey sky outside was not at all appealing.

I woke up around 4:00 PM because my phone rang. It was my therapist calling me. I called him on Saturday shortly after coming out of my panic attack so he was responding to my message. I knew he wasn’t in the office during the weekend, but I felt that I had to talk to him as soon as it was possible to sort through why the panic attack might have happened. As usual, he helped me sort through the still lingering feelings and to realize how everything I’m coping with – including the current pain flare up – and all that I’ve lived through in my life are so deeply connected, it makes a panic attack a reasonable thing for me – or anyone dealing with so much – to experience. He also gave me some practical tips on how to cope if I have another episode: splash my face with cold water, put cold water/a wet cloth on the back of my neck, breathe into a paper bag, lay on the floor so I feel grounded, and connect visually with objects around me so I can know what’s real. I was grateful for that conversation and the clarity it brought.

I stayed awake for a few hours after that conversation. My friend R called for one of our weekly chats. Then I tried to make sense of the horrible news of the day and deciding what my stomach could tolerate so I could make a meal. I failed at both and fell back to sleep on my couch. I managed to wake up a few hours later to take my last large dose of pain medications and I might have stayed awake for about an hour or two. The next thing I became aware of was that for a second morning in a row my body opted to sleep as late as it could handle before waking to take my morning dose of pain and other medications. After doing that, I still had the need for two morning naps.

I also realize, sometimes I have to accept that it’s not always conscious methods that are best for coping with my pain.

 

The Beatles – Golden Slumbers/Carry That Weight/The End