Tag Archives for self-care

I Have To Come Clean

Yesterday, I asked my friend U for a rain check on plans we made to go see a movie. It was the second time in the space of a month; but I had to. This time it was because my feet were swollen to the point of not being able to wear shoes – not even flip-flops – again. The previous opt-out was a few weeks earlier after I committed, with the best intentions, to attend one of her art exhibits. I had an appointment earlier that same day and experience has taught me that my body can’t handle more than one event or activity for a few hours in a day; any more than that will be followed by days, if not weeks, of increased pain.

Sadly, in the nearly five years since my illness started, I’ve lost count of how many times I’ve asked U to reschedule or canceled our plans altogether. Similarly, I’ve lost count of how many times I’ve rescheduled or canceled plans with other friends and family members; some of whom no longer bother making the effort to do things with me. Mind you, the arrival of my illness alone was enough to cause some people to disappear from my life early on. As I got ready to take a shower late last night, it dawned on me as I sat naked in my bathroom, that at the rate I’m going, I won’t have many friends left to reschedule or cancel plans with if I don’t come clean about the state of my life. So here I am, writing what amounts to an open letter to all my friends and my family members about what my version of living with a chronic illness looks like.

I know I talk about feeling pain, but maybe I still haven’t explained it clearly: This illness causes me to feel high levels of pain every minute of every day in almost every part of my body below my belly button. To cope with this pain I take large quantities of high-dose opioid-based pain medications (narcotics) six times each day. Even in these large doses, these opioid-based medications don’t come close to stopping the pain. However, without them, moving around or walking upright would be near impossible feats for me to accomplish. Unfortunately, because of these pain medications, I also have added medical complications from expected side effects and other symptoms – like the swelling in my legs and feet – that continue to defy explanation.

The truth is: nothing I’ve been prescribed controls my pain. In fact, my doctors can’t explain why – after multiple surgeries and many treatments that failed – I still have such high levels of pain nearly five years after this all started. Lucky for me, these doctors are all still invested in trying to figure it out. Although, that’s little comfort to me at times; especially when the pain flares up beyond a level where anyone should be expected to cope.

As a result, all I can do is manage my life in a way that minimizes pain flare-ups and the worsening of any of the side effects. That’s what I’ve been trying to do – and learn how to do better – with the different programs and treatments I’ve been participating in these last couple of years. The problem, I’m only now realizing, is that I haven’t been communicating with all of you what I need to do to manage things and take better care of myself or how much help I need to do it. The latter part of that statement is probably the most important: I haven’t told you that I need help taking care of myself.

Since my focus has been on trying not to be a bother or not making you worry about me, I haven’t been telling you the truth. Most days – even when I sound upbeat during phone calls or I add smiley-face emojis to text messages – I’M IN AGONY. Because of the pain I may not have slept more than a few hours in the previous 24 hours; I may not have taken a shower that day or the day before. I may not have cooked a proper meal in days, I may have a pile of dirty dishes in my kitchen sink or piles of clothes on my bed that I need to put away, and I may have put off doing my laundry again so the baskets continue to fill.

With all of this, and probably more, going undone because I’m in pain, when I ask for a rain check or cancel plans, it’s for the same reason: The pain or other symptoms are at levels I can’t cope with. Or I’m trying to manage them so they don’t reach levels where I won’t be able to move for days, or worse case land me in the hospital Emergency Room where all they can do for me is add extra doses to the pain medications I’m already taking.

Rescheduling or canceling is never because I don’t share the same desire to spend time with each of you. It’s never because I don’t respect your time or value the effort you go to when you plan something for us to do together. The relationships I have with each of you is unique, but that doesn’t mean I don’t owe each of you the same degree of respect and honesty. I don’t know if I’ve shared too much or not enough, but I do know that this is the truth about what I’m living with and I hope each of you will continue to stick around, so we can make more plans I might need rain checks for…

 

A Bright Spot In My Grey Fog

Time sometimes makes me feel as if I’m moving at a snail’s pace through a murky grey fog. Since having surgery at the end of February, that’s how I’ve been feeling. For the first weeks afterwards, I told myself it was the general anesthetics working through my body and once that passed my energy level would pick up. When that didn’t happen I told myself that I wasn’t getting enough quality sleep, which rarely ever happens, so I had to cast that variable by the wayside. Even when I got the all clear from my doctor because the pathology report from my surgery was negative for any cancer, there was no movement on my energy meter.

I started to get concerned; because I thought, I might slowly be sliding into depression but missing the true signs. Maybe the low energy I was crediting to anesthesia, fatigue, a pain flare up, or my laptop’s hard drive crashing was really the looming darkness of a mental crash. It wouldn’t be hard to miss for someone in my situation, even with the mental health supports I have in place to cope with my poor health; and especially because my nervous system gets flooded not just by the barrage of constant pain but also an unending amount of pain medications. With these things constantly at play, a shift in mood would be easy to miss.

Then last week, I felt a desperate need to change things, but I knew whatever I did had to fall within the limits of my pain. On Saturday, I decided to do something that I had taken for granted when I was healthy. I booked an appointment with the aesthetician I used to go to because it’s been such a long time – almost four years ago before the start of my illness – since I did anything to pamper myself. The women who own the spa I went to were so happy to see me. They asked why it had been so long since my last visit and I told them what I’ve been living with. Not only were they sympathetic, they were also empathetic because they both faced significant health issues in recent years. They were both extremely encouraging and expressed hopes that I would be better soon.

At the end of my appointment, as I walked to the elevators one of the women called after me. I assumed I forgot something, but I hadn’t. She followed me out to give me one of the tightest warm hugs I’ve had in a long time. I started to cry as a woman I hardly know held me with great affection. She reiterated her positive wishes and prayers that I will become healthy soon. For the rest of the day as I pushed myself to finish the errands I had to do – I’m not sure I could have lasted another week without my laptop – I could feel the fog lifting. A hug from someone I barely know lit up my day and has had lingering positive effect.

I’ve been reflecting on that for the past few days: For anyone reading my writing for the first time, this isn’t about me being starved for affection or human contact. I have wonderful friends and family who do everything they can to support me. This is about the big way small gestures can affect our lives; the way sharing our troubles can bring about such surprising connections and unexpectedly comforting events; and how feeling cared for, even if it’s just for a moment, can fortify us.

I’m glad I made that appointment. Apart from reminding me how important it is to do things to pamper one’s self from time to time, it was a truly bright experience that lifted much of the fog that had cloaked me.

 

Weekend Blooms
Taxi Doodles

 

Thoughts Often Become Reality

I try to be careful about the things I think. Mostly because I do believe in self-fulfilling prophecies, which an article in Psychology Today explains simply as “a belief that comes true because we are acting as if it is already true.” According to the article, “Our expectation that we will see a particular outcome changes our behavior, which shapes the way others see us. In turn, others provide the feedback we’ve set ourselves up to get, which serves to reinforce the original belief.” The idea that the way a person sees himself or herself affects his or her behaviour and how others perceive them and in turn respond to them is something I’ve witnessed my entire life. It’s also something I’ve experienced, which has influenced the way I conduct myself when interacting with others and the image of myself I project for people around me to see.

How the Self-Fulfilling Prophecy Works - Courtesy Psychology Today

How the Self-Fulfilling Prophecy Works – Psychology Today

The unfortunate thing with believing in self-fulfilling prophecies when you’re chronically ill is that it causes – at least for me – a great degree of added stress and anxiety. Even though I’m extremely ill, I find myself, quite often, trying to act better than I feel even though the chances of that making me feel better are slim. I always make the effort to be well-groomed and dressed when I go out – to make sure people can’t see how ill I really am –, even to doctors’ appointments where I’ve had at least one doctor comment on how well I always put myself together. I know that acting as if you’re not ill when you are may sound silly, but psychologically and emotionally it helps to keep me from falling too deeply into depression. It also helps me not feel pity for myself and rarely gives other people an opportunity to engage with pity for me or to treat me gingerly. However, acting healthy or completely well, when you’re not does take a toll on you; and I think, after just a few days into the visit with my cousins, I’m starting to feel it.

Yesterday, I posted about my cousins who arrived on Sunday for a two-week visit. They’ve only been here for two full days, but my body is already feeling the effects of acting as their host. On Sunday when we got home from the airport, we rested for a few hours, and then I made us a light meal for dinner. Not much for someone who is well but a lot for me. Yesterday, we spent most of the day at home because of the extreme hot weather we’re experiencing at the moment and to give them some downtime to adjust to the time difference and recover from jet lag. Then later in the afternoon, we went out to run an errand that didn’t take very long but involved taking a taxi, briefly walking through the local shopping mall, and a short walk home to give my cousins a chance to see the neighbour and get familiarized with it so they can go out without me when they choose. When we returned home, I cooked dinner for us, not giving any thought to the less-than typical day of activity I’d already had.

Well, here we are today. Not out on the day-trip I had planned for us because my legs, pelvis, hips, and back feel like they are on fire. This was part of the reason I had so much anxiety about them coming to visit. I know this isn’t a self-fulfilling prophecy, but it might be whatever the flip side of one would be. By not acting as if I’m ill and not taking my limits into consideration as I move about every day while my cousins are visiting I will cause myself more pain. Therefore, I have to be willing to admit, to myself most of all that I am ill and can’t do as much as they can do every day. I have to remind myself that there is nothing wrong with taking pity on myself for the purpose of self-care, or having others step in to do the things I can’t because all that means is that I’m taking more care of myself. But most importantly, I have to fully accept that I am ill so that when the extra pain kicks in, as it has today, I don’t get angry with myself or feel betrayed by my body.

One of my close friends who knows me well, especially how hard I find asking for help even when I need it, has taken my cousins out for the afternoon to give me some time to rest. I’m very grateful for his help and unspoken understanding. Being on my own for these few hours, I’m realizing that the longer I’m ill and the more I resist acting as if I am, the harsher the reminders I’ll receive from my body. As often as I’ve said in the past that I accept what is happening to me, it seems that I’m still quite a distance away from that being the reality.

 

Muse – Resistance