Having a disease that is chronic and progressive brings to my mind one word. Change. Each morning is a new day in many different ways.
The word "chronic" means marked by long duration, and often by slowly progressing seriousness, always present, constantly vexing, weakening or troubling. Hmm....that definitely sounds like MS.
The word "progressive" means increasing in extent or severity. Yep, that's MS.
The thing is, each day you awake you really aren't sure what you are going to be able to do that day. Each and everyday, you wake knowing that you have an illness that isn't going away. It's not a cold, the flu or a virus that will run it's course, and tomorrow you'll be feeling better, back to your old self. Nope, this awful fatigue, these aches and pains, the blurry vision, the partial paralysis, the spasticity, the weakness, will all be here tomorrow.
The other thing is that not only will it be here tomorrow, it may be worse. Sure, it might let up just a bit in one area or another, but it seems that another area will be worse. And each day you wake, something is going to be more difficult to do.
These changes take place slowly and sometimes they are almost unnoticeable. And, the way you adjust is almost unnoticeable.
One day, about a year ago, Dear Hubby and I were talking about his illness and the resulting care that was required. I had noticed that one night, when it came time to go to bed, he asked for me to help lift his legs into bed for him. I did it automatically without thinking, and he settled in for the night. From that day on, I helped lift his legs into the bed, after he transferred from his wheelchair and sat on the side of the bed. No big deal...
Fast forward a few months, and Dear Hubby was needing help transferring. He was no longer able to lift himself from his wheel chair to the side of the bed. Hmm...no big deal. Transfer, lift his legs, he gets settled, we go to sleep.
Fast forward a few months more. I transfer Dear Hubby, lift his legs, he begins to get settled, and then says, "Honey, I'm sorry, can you help roll me over?" Sure, no big deal.....The next night, I transfer, lift his legs, get him into the prone position, roll him over. See, no big deal.
And, so it continues. Now, I transfer, lift his legs, lay him down, roll him over, pull him to the side of the bed, pull his legs up, put a pillow between his knees, shift his pillow down under his neck, pull up the covers, tuck him in, kiss him goodnight, park the wheelchair out of the way, turn out the light, get into bed, turn out my light. Where I once slept through the night, I am now awakened periodically to help adjust him in bed in the middle of the night. No big deal.
Now, imagine this same scenario in every area of life. Bedtime, baths, restroom, eating, etc. Each and every area of his life now requires care. Even when he is lying in bed resting, he needs help. You know how it is when you lay down to rest. You turn, you raise your left leg, you put it down, you shift your weight from one hip to the other, etc.
Amazing....my husband's disease is chronic and progressive. And, you know what? My caregiving is too. Chronic in that each and every moment it is here, it will last a long time, always present. My caregiving is progressive in that each day I will need to do more.
And, you know, it's ok. I'm fine with that. I signed up for this when I vowed "in sickness and in health". Maybe I didn't REALLY understand at the time what that would mean, but the words are still real and the committment is the same.
I've also seen the way things have changed in my personal life too. For example, I'm a quilter. I have met with several ladies from church once a month for years. We get together, have a devotional, sew, have a meal, show our projects, ask advice, laugh, cry, giggle, and such. I've enjoyed doing this for years. The beginning of the year, I realized that I really can no longer attend our regular quilt bee. I can't take one day where I am gone for 6-8 hours and spend that time with my quilting buddies.
Does that make me sad? Sure, it does. But honestly, considering all the things Dear Hubby and I have lost, it's not that bad. Really. I can't grieve over every loss, or Dear Hubby and I would spend each morning crying in our milk. Each day brings loss.
I can no longer make 6 hour lunch dates regularly. Each year, when Quilt Show rolls around, I assume I won't be able to attend. Because I'd rather be pleasantly surprised that bitterly disappointed.
I'm learning to deal with change. I don't have time to sit and visit like I once did. I can e-mail rather easily because I do that between responsibilities. I can take time to write on my blogs, because Blogger saves my work as I go and I can take all day to write a post. I can enjoy short 2 hour visits from friends periodically. But life has changed.
Where once we had people over frequently and they were apt to stay until the wee hours of the morning, we can't do that any more. Dear Hubby tires having people in our home. Even having our friend D stay with hubby or my MIL here, tires Hubby out and he needs time to recoop afterwards. It throws him into a fit of fatigue where he can do nothing but rest the next day.
Dear Hubby has seen some really awful changes in his abilities and in his own way, he mourns those losses. There are times that I hear him struggling to do something he's been doing for all his life, and I hear him mutter, "dadgum". Yeah, that's as bad as his language gets....then I hear, "Honey, I'm sorry, can you come here. I can't....... will you help me?" And so he looses another bit of freedom and I gain a bit more responsibility.
We work together through our frustration and find what works for him and for me. We have discussions like, "You need to do it this way" and I say, "Well, I'm doing it, so you need to let me do it the way that works for me" and he says, "well, that hurts me, so you can do that" and I say, "ok, is that better?" and he responds, "yeah, that's great." We're learning to work together, all day, everyday to make his life and mine better.
Yeah, sometimes we're gripey and complain, but honestly, we're closer today than we've ever been. (Which is a miracle when statistics show that 80% of marriages faced with chronic illness end in divorce.) We giggle and laugh, we cry and whine together. We make fun of ourselves and each other, and mainly we stick together through thick and thin, through heartache and pain, joys and laughter.
We've grown in our faith, we understand scriptures we never did before. We're learning to walk in grace and faith. We're learning to "come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16 We are seeing our Father in heaven in ways we never have before. We are learning to trust that God is working even when we cannot see His hand. We are trusting that "all things work together for good to them that love God, to them who are the called according to his purpose." Romans 8:28
And we are finding that the scriptures are true:
because they have a good
reward for their labour.
For if they fall,
the one will lift up his fellow:
but woe to him that
is alone when he falleth;
for he hath not another
to help him up.
Again, if two lie together,
then they have heat:
but how can one
be warm alone?
And if one prevail
two shall withstand him; and
a threefold cord is not quickly broken."