My husband is a lucky man. He has a good job driving a truck and has the good fortune to drive local so he gets to come home every night. It did not used to be that way. He used to drive over-the-road and be gone for weeks at a time. Spending nights sleeping in the truck, or occasionally splurging for a hotel room. Those were rough years.
Now he works for a company instead of being an owner-operator of his own rig, and now he gets 4 weeks of vacation per year. This coming week is his last week of vacation for the year. Although I am always glad that he will be off and we can be together, lately I have started having a quiet dread because I know that things will be very different with him home every day. I will not have my time to rest and try to recover. Time to relax and be alone with my pain. And right now, because I am in a horrendous flare up with my feet, I will have a harder time trying to lay low….to not be as active, to try and let my poor feet calm down and get better.
Unfortunately, last month, he also took a week of vacation just before my 58th birthday. For the first half of the vacation, we had a great time shopping, running around, being spontaneous and just hanging out together. But for about the 3 or 4 months previous to that time, I had already been running around way too much for my own good and had already gotten myself very close to a bad flare up. All it took was another week of running around….and everything came to a grinding halt. My feet totally crashed and so did I. The vacation did not end well then. And this one will not begin well now.
I have spent literally the entire time since his last vacation that ended the week of September 22, hobbling briefly from room to room, but spending most of my time every single day in the house (with the exception of one day when I had a doctor appointment), laid up and unable to cook, clean, do anything but try to stay off my feet as much as possible. My feet are inflamed beyond belief, swollen and the toe joints have begun to turn a darkish red color. I can only imagine what is going on in there. But anyway, let’s just say…..the beginning of this vacation is not getting off on a good note.
I have begun to realize that every time he gets a week’s vacation now, I go into a flare up of some kind. Sometimes the fibromyalgia, sometimes the osteoarthritis, most of the time my feet (severe, chronic plantar fasciitis)…..more often than not, all of the above. I’m starting to really dread vacations.
We never are able to actually go anywhere, plan to get away or take trips. We just basically hang out at the house, shop a little, visit book shops…..just spend time together. And that’s perfectly okay with me. Of course I will always regret not getting to see other parts of the country, other parts of the world. But I am resigned to the fact (and I think he is too) that our vacation times will never be like other people’s vacations. We will never see Hawaii, we will never visit another country. We may never even get out of our own state. But he always tells me, he is just happy not to have to get up and go to work. He is easy to please, and does not regret us being unable to travel and be on the go. He does not blame me or make me feel guilty.
But when things are as bad as they are right now for me, I have so many emotions stirring in me. I regret most of all not being able to just get up and go antique-hunting like I long to do….or really any activity that requires walking. I can’t even go shopping unless it’s in a wheelchair or a scooter right now. And even that is unlikely this time because I can’t hardly get ready to go anywhere without my pain levels shooting through the roof before we even leave the house. So it’s pretty disheartening.
The prednisone that the new doc put me on 4 days ago quit working. The first couple days he had me taking 20 mgs a day. At first it was like, Hey wow ~ this stuff is actually helping. I was able to walk a little better, without the cane, and when coupled with my other pain meds, I thought I had something that might kick the inflammation down. Unfortunately that hope was short-lived. I should have known. I am now down to 10mg once a day for the next few days. My feet hurt just as bad tonight as they have the past 3 weeks. And I still have 3 days worth of prednisone left to take before it runs out. I can only imagine how the pain will go crazy even more after the prednisone is gone.
Not only this…..but we have scheduled the renovation of our long-awaited new kitchen floor….yes, this coming week. Thursday and Friday there will be workers here, laying a new floor in our kitchen and our back entry way. I just thank god I had the foresight to schedule it when Larry would be here at home, so I can lay down while the guys are working. Larry can oversee the job. I will have to lay on the couch, not being involved in the fun of watching it happen.
Anyway…..vacations. They used to mean fun, freedom, spontaneity and doing different stuff than usual. Now it just seems to bring me even more pain than usual. And nothing changes. No new experiences or fun things. Even though he never makes me feel bad for having to lay around during the bad times, because he knows it’s not my nature and he knows I hate it so bad…..it’s still just natural for me to jump up for different things when he is home….I have been trying so hard to just plant myself on the couch and ask him for what I need every time he comes in the room….but I hate doing that and I know it gets old for him as well. So often I find myself on my feet much more than I would have been if I had been alone and content and quiet and without the pressure to get things done.
I don’t know what the answer is. I’m still trying to figure it out. I am taking so many drugs at this point that I really can’t imagine adding any more into my pharmaceutical cocktail. I mean, I’ve thought about just loading myself up to the gills on everything so that I am so wasted I can’t or don’t want to try to get off the couch for any reason….. and oh what a pretty picture that is for my husband to look at on his vacation….his wife, loaded on prescription drugs, passed out on the couch. Just lovely. Oh yes.
But short of buying a straitjacket, I just cannot seem to keep myself down. Even the excruciating pain is no match for my indomitable, independent, unquenchable spirit. I cannot be tamed, not even by pain. I can be sidetracked and be slammed down over and over again, but I am so stupid because I keep getting up and keep getting up…..just like the clueless loser in a boxing match who is so stunned from being punched so many times, she just doesn’t realize she’s already lost the fight…..she keeps getting up to take another swing at an opponent who is killing her slowly and surely. That’s me in a nutshell.
Living with chronic pain is so much more than just the pain. It involves so much more than that. There is also all the emotional and mental baggage that comes with it. What do you do with your mind when your body is your worst enemy, your biggest obstacle? How do you handle having such a powerful urge to live your life when you can’t even walk from one room to the next without agonizing pain? What do you do with it all? How can one person exist inside a prison of pain and maintain their sanity? What do you do with the desire to live when all you really want to do after awhile is just give up and die?
Then there’s the problem of your loved ones, your caregivers, if you are lucky enough to have any. My husband and I never had kids so it’s basically just us in the world. How do you manage the guilt of watching your 62 year old husband, who already works a full time job, sometimes 10-12 hour days, and then come home and have to make dinner, clean up, take out the trash, do the laundry, shower, make lunches for the next day, and fall into bed exhausted from it all…..while you lay on the couch watching him work? How do you not feel overwhelmingly guilty, humiliated….how do you deal with the hatred of yourself?
I don’t know. I’ve been living with pain for a long, long, long time….over half of my life has been swallowed up by pain, and I’m 58 year old. I have been robbed of so much. And somehow, in spite of it all, I still have some of my sanity left. (some would argue that point, but I digress…. haha). The only thing that has saved me is that for some crazy reason, I just keep putting one foot in front of the other (when I am able to walk, that is) and just never give up. If there is only one thing I can still do, it’s that.
I can choose to never give up. I am just stubborn enough to refuse to allow the pain to consume me whole. I refuse to let it take all of me. It has taken my body from me. But it cannot have my will. I can still choose my fate. I can choose to find ways to get through the tough times, because I have been through some very, very tough times MANY, MANY times before and always got through them. I didn’t expect to make it through, but I did. And that’s what keeps me going now. Even though now that I am getting older, and things aren’t as easy or as fast as they used to be, I still have the hope that one day I will be able to get up off this couch, dust myself off, and slowly, carefully, tentatively start to try to live again, as normally as a person with chronic illness can.