Dwindling Piggy Bank…

Last month I wrote a post that detailed how I needed to reserve my energy, taking it down to the number of steps I estimated I could take each day without pushing myself too far (click here to view that post).

It seemed to be about one hundred steps, and no more than five minutes of standing each day. Today those numbers feel very far away, how dramatically things have changed.

That allotment needs now to be spread over several days if I’m to lessen the excruciating pain that accompanies having used my legs too much. If not the pain, it’s the accompanying respiratory issues that have me returning to bed as soon as possible.

There’s a dilemma in choosing how much to share with my daughter about the pain levels, it usually flares up at night when we’re trying to enjoy some quality time. This time usually consists of light-hearted banter and “punnery” whipping back and forth; the breadth of topics we can cover in an hour is a source of amusement to us. She has to take care in not saying anything too outrageously funny for fear of getting me gasping for air (she’s nicknamed me the Coughy Monster, she’s not far off base). Not an easy task, she has a terrific and wry sense of humour. By end of day my part of any conversation is usually held at a whisper, but between hand gestures and Suzanna knowing me well enough to know which words would have come out of me next we’ve made it work.

We’re getting creative on how to keep my “leg time” and talking to a minimum. During the day if Suzanna is away the apartment door is left open for friends and palliative team members to let themselves in (no worries, there’s absolutely nothing of any value here left to steal – least of all me!), and we installed a surveillance camera so that I can confirm from my iPad who has entered the apartment. As an added bonus I can communicate with Suzanna when she’s preparing meals in the kitchen (our apartment is long and skinny, she can’t hear my raspy voice if I call to her from the bedroom).

When the pain escalates, I get quiet. I worry about offending her, that she’ll think I’m not appreciating her attempts at keeping me entertained. I worry that she’ll think that I’m in more pain than usual that evening because she didn’t do enough for me during the day to keep my allotment of leg time to a minimum. When I do tell Suzanna that the pain levels are difficult to manage it’s so that she can understand why I’m not reacting as quickly, or at all, to her comments or questions.

This concern in not wanting to offend others by not participating fully in conversation has me withdrawing to at least some degree from my circle of friends and support team. The truth is, phone calls and visits do place additional strain upon me.There’s no question that there's a price to be paid for doing anything other than just laying quietly in bed. I know that my friends also feel badly when they realize that interaction has been taxing for me.

I realize that I’m likely to hurt some feelings in saying this, but some relationships going forward may need to be maintained more often over email and short phone calls. I do hope that friends who are wondering if they can visit will ask me or Suz, and understand if she or I tell them that it’s not something I’m up to.

Although I may be talented at budgeting when it comes to money, I have to apply the same principles to my energy reserves. The piggy bank is dwindling. It used to be that I had a balance that went up and down from day to day, finding a way to save up energy for an upcoming visit. Now, there are only withdrawals.

I know how I want to invest the balance. The biggest gift I’m getting now is knowing that my daughter is here, and that she approves of the spending plan.