This post is being prompted by an incident that occurred last night. One that unfortunately, happens more often than I would like. And much more often than my husband would like. As I have talked about previously on this blog and on its Facebook page, I have been struggling with some issues regarding my feet. The issues started last July and after seeing a doctor, I was diagnosed with plantar fasciitis and tarsal tunnel syndrome in both feet.
The short version of the story is that I have been through months of physical therapy, countless doctor's appointments, night splints, trigger point therapy, orthotics in my shoes, the list goes on and on. It is likely that Sjögren's is a contributing factor and possibly the cause of this. Starting in December, I decided, after much consideration, to consent to cortisone injections in both feet. I had one in each foot with some relief, but the relief was only temporary. I then had a second injection in my right foot two weeks ago today and after a few days of some relief, things went from bad to worse, and pretty quickly I might add.
My right foot is now at the point where the tarsal nerve is so messed up and irritated, that a good part of my foot is numb. I am also getting little electric-like sensation from time to time and some pain. I am scheduled for an MRI at the end of this week and have been given strict orders from my doctor to stay off my feet as much as possible, with the exception of going to work. Luckily, I only work about two to three days a month for six and a half hours at a time. I was told absolutely no exercising or long distance driving, and I had to give up the one thing that always helps my stress and that is yoga.
So after working a regular shift at the school yesterday, I started with some pain around 5pm that by 8pm, had me reduced to tears. While I figured it was good that I could actually FEEL something in my foot, the pain became unbearable. Despite how much I go through with Sjögren's and pain, it is rare for me to end up in tears over it. The pain medicine I could take would likely keep me awake all night, but I decided to go ahead and take it, as well as some heavy duty sleep medication that I save for emergencies like this. Today I woke up rested, and with a numb foot again. But, crisis temporarily under control.
My husband was with me last evening and I have to say, he did a fantastic job of helping me through the evening. It is so hard for him, I know it is. We laid in bed together watching TV for several hours while I worked through this incident. Actually, WE worked through this incident together. However I know it is hard for him because we have talked about this issue enough for me to now understand how difficult it is for him to see me in pain or in a really bad way.
I didn't really know this or get it when we first got together...how much he struggles when things go bad with me. I didn't know because he is so stoic and calm. He always tries to cover his fears for my sake. But I know. Now I do anyways.
As we have grown together as a couple, our talks have helped him to understand my needs and what works for me. And the talks have also helped me to understand some of what he is going through when I am having a medical crisis of some sorts. And what works for us may not work for every person with a chronic illness or the person that is trying to care for them or help them.
Last night, like all the other times recently, he really got it right. Trial and error I suppose. And some really good communication on both our parts. For example, when I am in that much pain, I want to be held, but not too tight. Its hard for me to have the TV too loud or too much stimulation around me. I also need some type of physical distraction so what he does is he gently rubs my head, or massages my legs, or some other physical touch that helps my brain distract from the pain that I am experiencing. As long as it doesn't involve the part that is actually hurting.
And other times, it does help to touch the part that is hurting, although with nerve pain like I had last night, that was not the case. So how does he know? He asks me. And I am direct in telling him. And it works. And it works when he gets out of bed for the third time to get me the Motrin I forgot to take when I was up the previous time. And it works when he distracts me with ridiculous jokes or stories.
He also listens intently to what I am saying about my pain experience, if I even want to talk about it which if I don't, we have quiet time. When I talk about it, and he listens, he helps me figure out what the best course of action to take. For example last night, I was trying to decide if I should go ahead and take the pain medication because if I did, I would also have to take something to help me sleep. Otherwise the lack of sleep would worsen the pain cycle. However my husband knows that I am very careful about taking possibly addictive substances like this too often. He helps me think it through out loud to determine if yes, this is necessary or no, I can wait it out and see what happens. Last night, it was necessary.
Its not easy loving someone with a chronic illness.It takes an incredible amount of love and dedication to live this lifestyle each and every day with someone. One thing that I know has helped my husband is that he attends SSF support groups with me. Not only does it give him an opportunity to hear what it is like for other people to live with my illness, but it gives him a chance to talk to other partners, spouses, and caregivers about their experiences. At the last support group meeting we went to, he mentioned to me, after talking with other spouses, that he didn't realize how many Sjögren's patients also have a difficult time going out in the evening because by 6pm or so, they are ready for bed. Going out in the evening is a very difficult thing for my husband and I because I am absolutely exhausted and ready for bed. It takes a lot of preparation and pre-planning on my part to get myself out of the house in the evening. And, a lot of rest beforehand. Because he is aware of that, he makes sure to consult with me about activities, especially ones that just involve the two of us. For example, we don't go to the 8pm showing of a movie. You will instead find us at the 1 or 2pm matinee, where by the way, we save a ton of money going to an earlier show!
I used to feel guilty about the effects my illness has on my husband. I think I even blogged about that very topic at one point. I no longer feel that way though. And the reason for that is simple:
I no longer let my illness define every aspect of my life.
At least most days.
And together, we have established and defined what our normal consists of.
And with the help of his love, I have come to understand that yes, life is more challenging for us than for many other couples, but despite that, I have just as much to offer a partner as anyone else. Throughout all this, all my husband asks from me, both on my good days and on my bad ones, is that I love him.
And I do.
Completely, and without reservation.
And that makes every single day worth fighting for.