Special Favours…

Many wonderful people do very nice things for me. Some I know better than others, but generally the people helping me out know my situation and go above and beyond to make my days easier.

Most of my interactions these days are over email or over the phone, getting out is getting close to impossible. In the last three weeks I’ve stepped out of my apartment just once (although a challenge to make it happen, I was thrilled to be present for an event that brought a smile to my daughter’s face during her visit home from school).

Although friends and volunteers take care of most of the everyday tasks that I can no longer manage, there are still interactions that require me to pick up the phone – I just have to pick my moments carefully these days and make sure I’m juiced up with oxygen so that I can get out full sentences without a coughing fit.

If I have the choice, the person at the other end of the line need not know I’m ill if it’s not relevant to the conversation. It’s my chance to feel somewhat normal in a life that is quite far removed from what normal used to look like.

Today I played the “sick card” to get a matter attended to more urgently, and it weighs on my mind. Looking at the situation practically, the matter needed a very quick turnaround – and the only way to make it happen was to very briefly explain why I was not able to appear in person to complete a transaction. That I needed to have an exception made for me because I’m ill, that I needed to be treated differently than the average customer.

Although this challenging health and living situation is with me 24/7, it hits home at these moments just how incapacitated I’ve become over the last month. Yesterday and today I’ve learned some particularly tough lessons about my limitations. Trying to do a few tasks on my own because there was no one else to do them, and failing miserably. I can only blame myself for not having had the patience to wait until someone was available to help me, because they always gladly do so.

Things will be changing in a few days after I meet with my case manager. More help is available, and the discussion continues about whether it’s time to move me to a care facility. The hope that I’ll stabilize lessens as each day passes despite my determination. My will appears to have little say in matters these days.

This is truly a miserable situation. Especially if I let my mind go back to discussions that were had when I was first diagnosed about how I hoped things would play out when my health got really bad; and the unconditional support and assurances I received at that time that I would not be going through this alone. It looks less likely as each day passes that I’ll be able to end my days in the comfort of my own bed. This thought saddens me greatly.

This week several people whose opinions matter to me have reminded me that I don’t always have to put on the brave face, that I have every right to have the occasional pity party for myself. Today I had to invite a stranger into that party and I don’t like it one bit.