Category Archives for Mental Health

Never Doubt Your Lived Experiences

Being ill with all these glorious old and all the wonderful new symptoms is teaching me a lot about the people in my life and myself. However, I think the singular most important thing is that I should never allow another person – not even a doctor – to make me doubt my lived experiences. What I’m living through cannot be completely understood by another person, so why should I allow another person to question my experiences. Why should someone else get to tell me how much pain I should be feeling, why I shouldn’t take so much pain or other medications, or believe they have the right to question why my surgery didn’t deliver the results they expected. Why am I allowing their questioning about my health to make me doubt the value of my lived experiences?

I’ve caught myself allowing some of these doubts to creep in before. This morning a close friend reminded me why I shouldn’t allow that to happen. I spoke to him yesterday about the swelling in my legs and feet then sent him a photo so he could see the extent of it. He called me this morning to tell me how shocked he was by the photo. His exact words were, “When someone tells you their feet are swollen you try to imagine it, but when I saw the photo of your feet I gasped.” He was shocked at how “unrecognizable” my feet are. He said he couldn’t imagine how I must feel or what I’m going through while trying to cope with this on top of everything else.

His expression of empathy toward me was the jolt I needed to remind me that I should never doubt myself. Because of doubting myself, I was delaying going to see my family doctor to get my legs and feet checked because I told myself the swelling isn’t a big deal – the swiftness with which my doctor responded to my email yesterday clearly says I’m wrong. I downplayed this symptom because I was allowing the voices from other people telling me I should be better by now to cloud the reality I’m living with. I’m not better yet. My surgery did not eliminate my pain. I’m taking a significant amount of pain medications because they make it possible for my body to move so I can do basic daily tasks. My legs and feet are swollen beyond recognition and the swelling is adding to the difficulty I already have with walking.

What I’m experiencing is real. What I read that is written by others with health issues, general life issues, or just things from their lives they want to share, are real experiences. No one ever has the right to make another person doubt their lived experiences – their reality – and I have to remind myself of this more often.

 

Adele – Chasing Pavements

My Legs Remind Me Of Elephants

My legs and feet have been swollen, to differing extremes, every day for the past week. When I say swollen I don’t mean the type of swollen you get after walking all day. I mean swelling that’s making it difficult to walk. There is so much swelling it’s impossible to see whether I actually have ankles. My legs look like my feet are stuck to the ends of my calves without the forethought that I might need to move my feet independent of moving my entire leg. The swelling is also making my usual pain more difficult to bear.

I’ve been taking photos of the swelling to document it for my doctors. I started taking photos of changes to my legs and feet last summer when the swelling first started because it was a new symptom but it was intermittent; and I thought it would be valuable for my doctors to see what was happening. The photos I’ve taken this past week show a new pattern in the swelling. In the past, elevating my legs for the day would help reduce the swelling. I don’t know why, but staying off my feet and elevating my legs isn’t helping now.

I emailed the photos I took today to my family doctor so she could see how severe the swelling is. She responded to my message immediately and asked questions about whether I have other symptoms. She asked, “Do you have any shortness of breath, chest pain or coughing?” Luckily, I don’t have any of those symptoms. Because I don’t have any of the symptoms she listed, she said we would discuss the swelling when she sees me. I called the office and scheduled an appointment for the earliest time slot, which is this coming Monday.

The photos I took this morning reminded me of elephants’ legs. I looked up some photos on Google, and amazingly, those photos opened memories from a happier time in my life. The memory was about a day I went to our local zoo a few years ago. It was a special day because it was the first trip to the zoo for the toddler daughter of friends of mine. She was so excited to see all the animals, and it filled me with joy to be there for her first visit to the zoo. I felt a small piece of that joy today as I thought about it. This photo of an elephant is from that day.

My Legs Remind Me Of Elephants

The elephants we saw that day are no longer at our local zoo. They were moved to an animal sanctuary in a warmer climate where they can roam through fields with tall grasses. I hope they are happy in those fields and are being well cared for. I’m happy I have the memory of that day to look back on, even if the swelling of my legs was what made it surface.

 

Rob Base & DJ EZ Rock – Joy & Pain

Struggling With Acceptance

I’m struggling with acceptance: acceptance of my own circumstances. Currently, I have no control over what my life looks like from day-to-day because my pain is so unpredictable. This past week I suffered through multiple days with feet and legs so swollen they hurt and made it hard to walk. I didn’t get much sleep either, and as I write this, I’m in the midst of a pain flare for which I’ve had to take the highest doses possible of my pain medications for a few days. If I don’t get some relief with this amount of pain medications, I have to go to the emergency room to get help.

What I’ve outlined is only some of what I can’t accept on days like this. Over the last little while, I can’t accept that after more than two years of countless tests, so many invasive procedures, and a rather risky surgery, I have no pain relief. I can’t accept relying on handfuls of pain medications to allow my body to function, while they cloud my thinking. I can’t accept that the only time I don’t feel pain, is when I’m asleep; and the irony that sleep is a state that is so difficult for me to reach because of my pain. Nor can I accept that the sleep I so desperately need sometimes never comes or, when it does come, is interrupted by my pain. This cycle makes me feel like a helpless hamster performing on a spinning wheel for a treat that never comes.

As much as I’m having difficulty accepting my pain, I’m having even more difficulty accepting the compassion and generosity of the people in my life. The people who are trying to help me cope with the pain and all the adjustments I have to make in my life. I know this doesn’t’ make sense, but it’s hard to go from living an independent life with what seemed like endless years of adventurous activity ahead of me to being someone who can barely get out of bed some days. I know I have trouble accepting their compassion and generosity toward me because I’ve always had trouble showering myself with these things. Although, I have no difficulty expressing and abundantly giving these things to others – and I never have, not even now that I’m ill.

I’m starting to question whether this lack of acceptance and being hard on myself, and having expectations that others don’t have of me – not even my doctors – are harming my health. My therapist has an exercise he asks me to do where I am to imagine that I have a close friend or a twin living with my challenges and feeling as I do. I have to give them support and tell them what I think about how hard they are on themselves. The result is always the same: I’m able to see how ridiculous it is that I can feel compassion and empathy for someone else, but unable to feel them toward myself and unable to be gentle when attending to my needs. When we finish this exercise, I promise to work harder at being gentle with myself because I know it’s the right thing and best thing to do for myself. I do try. Really, I do, but it’s hard. It gets harder each day that I don’t know what to expect from my body.

I’m afraid that my struggle with acceptance is doomed to continue as long as my pain continues and will need my attention for a long time to come. Whenever I feel this way, I remember this quote, “If your compassion does not include yourself, it is incomplete.”

If Your Compassion - Buddha

I believe this is true, so I know the right thing to do for myself, to break my struggle with acceptance of my pain and my changed life is to treat myself with more compassion, just as I would with someone I care about.