Caregiving isn’t easy.
I watched my parents take in my Grandfather years ago. Things changed dramatically.
I watched my Mom care for my father. Things changed dramatically.
I watched my cousins and uncle care for my aunt. Things changed dramatically.
I watch my husband care for me. Things continue to change dramatically.
Chronic illness has many different side effects. But I swear the very worst may be what it does to everyone around the person who is chronically ill. It’s not just the sick person who’s life changes. It is everyone in their family. It is everyone they know. And it’s not a ripple effect…it’s a tidal wave. The kind that pulls everyone put to sea and everyone has to work hard to paddle back to shore.
Sadly, not all make it to the sand.
Of course this adds to the stress of illness.I worry less about my own health and worry more about my family. You don’t want to be a burden and you don’t want their lives to changes, however everyone’s lives change dramatically.
My therapist calls it the ‘new’ normal. I loathe the term. Mainly because I don’t want a ‘new’ normal. I want my old normal back. I want everything the way it was before. Of course that’s impossible, however my goal is to at least get as close as I can to what life used to be like. Becoming healthy enough to return to work, to walk a theme park, to be able to take the kids wherever they need to go and actually participate in any activity a normal parent could engage in- from a walking field trip to just helping in a classroom, filled with all those kid germs.
I want to meet my husband for drinks after work, go out on the town. Attend a concert.
So many things that I could go ahead and do now but would require a ton of planning and accommodations for the ‘just in case’ scenarios that come with chronic illness.
In fact, later this week I’ll be attending BlogHer ’14 in San Jose- but I will have to very carefully plan my days and evenings. The drive alone will be tiring, and I won’t be able to medicate myself until we arrive. Then I will be attending an event at 3pm- which means I will most likely be exhausted and absolutely need rest- rendering any evening actives null and void. Then depending on how tired I am when I awake, we’ll see what we can do. But odds are it won’t be much.
When I think about this ‘new’ normal I do get a bit upset for all those times I never considered how lucky I truly was to not have to be able to worry about a thing- to travel at a moment’s notice and not have to worry about making sure I was rested, making sure all of my medications were packed and ready…making sure I hadn’t just been released from the hospital for the 4th time this year. However I’ve learned over the years to not get angry.
I’m not in control of this disease, all I can control are my habits. So my new normal has meant pool exercise. Eating well. And making sure I’m on top of all my medication.
Of course just when I can see a difference and FEEL a difference, I get thrown a curve by ball an urgent care doctor who is adamant I be sent to the hospital for migraine symptoms that could be a mini stroke. It’s times like these I feel like I’ve failed my family and myself. What did I do wrong? What should I have done after getting a classic migraine, like I’ve been getting since puberty…especially headed to treatment where I knew I might get a little queasy?
Apparently spend the night in the hospital just to be sure all was well.
Every test came back fine…minus my cholesterol which is now high, apparently. Oh, and my potassium which was low, apparently. But the MRI, the CT, the PT, OT, Speech Therapist…all fine fine fine.
So with nothing you can do, you sit in a hospital bed and try not to worry or be upset and accept the ‘new’ normal that disrupts everyone’s lives. The husband that once again has to take off time from work to help you. The kids who will once again act out in some way because Mom was back in the hospital.
If I could make a deal with the devil to rid my life of this…I would. But not for me, all I did was lay in a bed and injected with good drugs. I would, however, take this away from all those around me.
Now I know full well I would go to the ends of the earth for my husband and kids. For my entire family. I’d let them disrupt every day if they had a ‘new’ normal we couldn’t control. It is a no brainer. I just want to acknowledge everything they go through for me…I love them beyond words.
And I hope we settle into this NOW normal and eventually just think of it as normal, with or without Satan.