…..Lifestyle adjustments are a bazillion times harder when the people who influence your lifestyle don’t adjust with you.
Okay, I know you are thinking exactly what I was thinking a few weeks ago when all of this came to light. *Truth: I have never really expected anyone to slow down on my account. In fact, I tend to push myself to keep up with them instead. Something I need to work on in order to keep my pain controlled.* Anyway, we are all thinking that those people don’t have a condition, or a reason to adjust their life…so why should they?
Let me explain to you why that matters, starting with the people closest to me; The Hubs and The Kiddos. It is essential to my lifestyle adjustment that their lives adjust as well in order to take some of the load off my shoulders. Example: up until now I have managed all of the at home tasks, in addition to working roughly 28 hours a week. Not a problem since I am not working 40+ hours a week like The Hubs, or going to school and doing homework all week like The Kiddos. The old frame of mind was to simply take another pain pill and plow through the day because -as I would say – “life isn’t going to stop just because I am in pain.” This mantra has been replaced with something more along the lines of “I will do what I can.” Now that I know I can’t be “fixed”, I need to take care of myself, and that requires help from other people. If I have more help for the less fun things in life, I have beads left to do the fun things we want to do. (I will explain the beads later.)
So you see, The Hubs and Kiddos need to adjust to doing more things around the house. Dishes, cleaning, laundry, grocery shopping, etc. so that I can have time to do other things like go for a walk with them, or sit down for a movie, or go to the zoo. This also makes it possible for me to do the medically recommended things like Yoga several times a week, or strength training, or physical therapy without ending up at an 8 at the end of my day. Plus! If I don’t use all my beads on the un fun stuff, I get to do fun stuff too 🙂
Which brings me to the next closest people who need to adjust; my friends. Again- I realize that they are not broken, but I am, and sometimes that gets in the way of what we used to do for fun. Like going out dancing for example. I absolutely love to dance, and I have been doing it for 5 years now professionally, but this CPPS (Chronic Pelvic Pain Syndrome) and CPS make it difficult sometimes. *Truth: sometimes it is too much to go to coffee.* So, it would be greatly appreciated if my friends could understand the difference between can and able.
Sure, I can get in my street legal car that is full of gas and drive (legally) to meet you for coffee. I can afford to pay for my snack and coffee and I speak the same language as you so we can communicate. My kids are at school, so I don’t need to depend on a sitter and I don’t have much else to do today so I can take the time to visit. None of this, however, means that I am able.
If we have plans to go for coffee, and I am having a spike (what I call it when the pain is intolerable) I have to be honest and tell you that I am not going anywhere except my bed (or couch) to try to get comfortable. It doesn’t mean I don’t want to see you, or that I have no respect for your schedule. It just means that I am in too much pain to be in public. But! If you can, and you are willing and able -“willing” being the operative word here – you could come to me. You could come to my house, and bring coffee (for which I will gladly pay you back) and we can still enjoy each other’s company. You would have just adjusted to something that makes this visit easier for me. Like renting movies instead of sitting in a theater seat that aggravates my pain, or leaving the mall a little earlier since I have already been on my feet for 3 hours.
Now I don’t expect people to always sit on their asses and do nothing but play couch commando with me. I realize there are several other more exciting things to do out there, and I would never expect anyone to give up their social agenda just to appease me. In fact, I still want to go out and do those exciting things too.
It seems that people have completely excluded me from most things active at this point and it makes me sad when The Hubs gets invited out to see a friend and I don’t. I mean, if you want to go to the mall, call me; I love to shop! Maybe I can’t go for 6 hours, but I bet I could do 3. Maybe I won’t be able to go to an entire 3 day festival, but we could pick a day that I could join you.
It seems I am either forced to plow my way through everything-pain and all, or just sit at home like a hermit. Neither of which sounds like much fun for me. Which leads me to my next pro tip:
Having a chronic condition will quickly show you who your true friends are. The people who accept you as you are, limitations and all, and are willing to adjust to keep you in their lives, and in turn stay in yours as well.
It has only been 10 days since I started to really work at this adjustment thing, and what I see for changes in myself have been great. I really like having time to work out, or go for a walk, or just rest. But it is already pretty clear to me that this is going to be much more of an adjustment than I thought, and I probably won’t be just adjusting my daily schedule, but possibly my phone book entries as well.
Thanks for reading and please be interactive. If you’ve got suggestions, or like experiences please share!