Why am I talking about the cost of love on a chronic pain blog? It is so fitting I believe, with how those of us with limitations, access our social activities. They are the things in life we still have some control of.
Energy and comfort must be spent as though we are on a budget. We must decide carefully where it is spent and what the actual cost will be. It's as though you see a beautiful outfit you desperately want in a store and you don't know the price, they won't give you the price, there's no way to find out, that is until- you buy it-then it's yours, no matter what the price.
To make matters worse, everyone gets to have a say as to whether you buy the outfit or not, If you buy the outfit and it turns out to be too pricy someone will always say, I told you so. If you buy it and it is a good deal, someone will always tell you I told you so.
Enough with the metaphors. When you have a disease or chronic illness you have to weigh your options when deciding on social activities. It can be very difficult because it can be the things you love most you have to say no to. The most frustrating is the inconsistency of what we are able to do. One week an outing is perfect, the next it just can't happen. Being inconsistent doesn't make for a good employee, and it can make for a challenging partner or friend.
When there is something I really want to do I have learned to make it happen to the best of my ability - here's how.
1. Rest as much as possible before the event, for days if possible.
2. Plan absolutely nothing for the day after the event.
3. Think ahead and make things as comfortable as possible while you are at the event.
4. Be willing to give it up if it turns out to be a very bad day for you.
I'll give you an example. This past weekend I wanted to go to my sisters in Ottawa and for my sister, daughter and I to spend a SPA for the day. That was a big step for me with the kind of pain I was dealing with, however I weighed it out. I rested most of the week before I went, and I haven't been out of the house this week until today, Friday. It was worth it. I also was willing to use a cane, which is something I despise because it causes me shoulder pain. Better to have shoulder pain, then to fall. I also did not do one other thing the whole time we were there on the weekend. We didn't shop, didn't go out for dinner or any other event. I knew the risk, I knew the pay off. I loved it, and it was worth every minute of planning and adjusting.
There's another example this week. There's a huge event happening here at our university called F.I.R.S.T Robotics for youth from around the province. It is a fantastic event and one I love being a part of. Last year I volunteered for three days and absolutely enjoyed every minute of it. It is a high energy, very positive environment filled with both youth and dignitaries. My role was the same this year and I was so looking forward to it. It was with a heavy heart that I had to resign. I knew it was impossible for me this year, yet there will be other years. It doesn't make it any easier. What does help however is there is a seat in the VIP lounge for me to come and be a guest this year, when and if I feel up for it. That does help.
So the next time you are in the presence of someone with a chronic illness or pain, know that it took a lot for them to be there and they will still be paying long after the party is over.