Tag Archives for chronic illness

Now My Knees!

I woke up around 4:00 AM this morning because of excruciating pain in both my knees. The pain was sharp and burning. I tried bending then straightening my legs to see if the pain was brought on by the position in which I’d fallen asleep, but that wasn’t it. My knees were full with pain. I had to go to the bathroom and the walk there was unbearable. As I bent to sit on the toilet, I had to fight the urge to cry out because the pain intensified as I lowered myself to sit. While sitting on the toilet I grabbed both knees and tried to rub the pain out of them. The rubbing didn’t help.

After sitting on the toilet longer than I needed to, I gently raised myself up and pulled my pajama bottoms on. I stood looking at myself in the mirror for a moment unbelieving of the pain I was feeling. I’ve had sore knees before, but this wasn’t that. There was fire in this pain that separated it from the pain I typically feel in my legs. It almost felt like it was announcing itself. Telling me it had arrived.

I gingerly walked my way back to bed, which is currently the couch in my living room – I do that from time to time: turn my couch into my bed. I hadn’t taken a breakthrough dose of my pain medication before falling asleep, so I decided to take a half dose because I was only two hours away from starting my pain medication cycle for today. I also took a dose of my anti-anxiety medication to calm myself because in my early morning haze I couldn’t understand this pain and the intensity made my whole body tense; I couldn’t grasp what was happening to my knees.

I tried everything I could think of to make myself comfortable. I settled on elevating my legs with pillows and rubbing my slightly bent knees. I also begged for sleep, which finally came; and must have been very deep because I didn’t hear the alarm for my morning dose of medications at 6:00 AM. In a small way, I’m grateful for that because it meant I probably slept through the worst of the knee pain.

Now the pain is not as bad as it was at 4:00 AM, but my knees are still sore. I don’t understand what’s happening to my body. No matter the medical explanations or speculations, I can’t understand why I suffer with leg, back, hip, and now knee pain because of something that started in my lower abdomen. I can’t understand why, now that the mass is out of my pelvis, I’m having as much, and – as this morning demonstrates – sometimes more pain than I did before surgery. My brain has absorbed all the information thrown at me by my doctors, but emotionally, intuitively, not an ounce of this is making sense.

What the hell is going on inside my body!

 

Counting Crows – Sullivan Street

Gratitude and Creativity: Smile Every Day

Sometimes, when sleep eludes me at night, I dig through the endless pages of the interwebs trying to find things that don’t make me feel bad about not sleeping. I know I’m a grown woman who can do whatever she likes at any time of the day or night, but not sleeping often makes me feel guilt and anxiety. Writing that makes me feel a bit silly, but it’s the truth. What’s most significant about that truth, is that it’s a sad truth because I’ve had issues with sleep for as long as I can remember, so that means my body has been holding a lot of guilt and anxiety about not sleeping for a long time. Sleep is the lynchpin to good health: mental and physical, so as things go I’m not doing too well.

Sleep aside, last night I landed on a page with inspirational posters. One of them was very simple: Smile Every Day. It made perfect sense and affected me so strongly I had to create a poster of my own. At about 11:00 PM last night I grabbed my sketchbook (the one I started when I was in the hospital), a pencil, and all my coloured markers. The idea I had forced me to log on to Pinterest to find a drawing tutorial because I couldn’t figure out how to draw a mouth. Yup, I couldn’t figure out how to draw the thing I shovel food into every day and from which drool happily flows when I do finally sleep thanks to my night guard. In the end, I found an easy tutorial and I was able to draw a mouth that I think fits perfectly with the quote and my design.

Smile Every Day

This quote affected me so deeply because when I started working in sales many years ago, in the sales/customer service department of a software company; one of the things they taught us in training is that before we answer the phone we should always smile. Smiling boosts the tone in your voice and makes you sound positive when speaking to someone on the phone. Some people kept a small mirror at their desk as a reminder to put on a smile because there were days when we didn’t always feel like smiling.

Jumping to the present day, I realized when I read that poster yesterday that I haven’t been smiling every day. I’m not depressed. But my pain doesn’t’ make it easy to smile. I’m also back at home again and alone most days, which means I don’t have anyone to smile with unless someone comes to visit, or I get a phone call.

I’m glad I found that page last night. Now I have a reminder for myself to smile every day. Regardless of how much pain I might be feeling, if I’ve had very little sleep, or the sun isn’t shining; I’m going to smile every day.

 

Virtual Therapy Sessions

I’ve been very fortunate, as I’ve been dealing with my illness to have the support of a good mental health team. On days when the pain has made it difficult for me to get out and make it to my appointments with my therapist we’ve had my sessions by phone. In the meantime, he was working to get approval for us to have my sessions on a secure video conference service. We had a test run last week but we ran into some technical issues so things didn’t go very smoothly. I was disconnected a few times and when I did connect, his voice kept being garbled. Because of the technical difficulties, we had to resort to the phone for what ended up being a very short session.

My therapist got technical support at the clinic involved to work out the kinks. I had a call around lunchtime today with the program support contact. She walked me through some troubleshooting steps and we figured out the issues. The video conference service requires a double log-in or two-factor authentication for the log in to be secure. I wasn’t aware of that, so when I kept seeing the same pop-up window open on the screen, I thought it was an error. When I closed the second window it forced the program to start over, which appeared as if I was being repeatedly kicked out. The second issue with the garbled voice was easily solved. She said that because I use a laptop my speakers don’t carry the sound of the video conference application well. She asked me to try using my phone earbuds or headphones if I had them. My earbuds worked perfectly.

With all the technical issues solved, I logged in to my therapy session later in the afternoon. I was able to see and hear my therapist clearly. We had an hour-long session without any technical glitches at all. The most important piece of the session is that my therapist was able to see me, which meant he was able to gauge my reactions to the issues we discussed. That’s important in my sessions because my therapy is based in mindfulness practices. The live video stream gave my therapist the opportunity to see me so he could help me process what I was feeling in my body more slowly as we worked through the session. The quality of this virtual video session was much better than just a phone call. We scheduled my next therapy session for a few weeks from now. It’s scheduled as if I’m going to go into his office, but if my pain is too great, we will use the video conference service instead.

I’m so appreciative of the efforts my therapist has made to accommodate me during my illness. Having mental health support has kept me afloat at times when I didn’t know if I could cope with my pain and the mystery of its origins. I continue to have the support now and my therapist is helping to find additional resources to help me cope with the disappointment that my pain is still present after surgery and possible alternative therapies to help me heal (e.g. iRest, chronic pain groups). I can’t imagine what I would do without this support and these resources, and I can’t imagine how anyone who doesn’t have access to mental health services is getting through a life with chronic pain or a chronic illness.

 

Jamiroquai – Virtual Insanity