My husband’s treatment plan is in place, we are just waiting for insurance approval. He will have a radical neck dissection and removal of one of his parotid glands. The total number of lymph nodes to be removed is unclear, it could be 25 or it could be 50. Then 3 weeks later he begins Interferon, 5 times a week for a month then 3 times a week for 11 months.
None of the next paragraph is important when you consider the big picture. I am aging secondary to stress, and I don’t know what to do about it.
My hair has literally turned gray overnight. I have reflux almost every night and can’t lay down to sleep. My joints hurt like crazy. The post-herpetic (shingles) nerve pain comes and goes on a regular basis, along with cold sores and weird stuff going on in my mucous membranes. I do not know what to do. I went and had a reflex/massage thing the other day. It was very nice but I can’t afford it very often. I don’t sleep. No sleep = no energy, no energy = no desire to exercise. I used to love Vanity Fair magazine, now I can barely get through an article. Agitated, anxious and anhedonic. That’s me.
Sorry about the whining. I’ll try to keep it to a low rumble.
This is about as mundane as it gets. Not asking for medical advice. Just sharing my life. Sorry if it was too much for MPSIMS. I’m 0 for 10 today asking for support. Maybe a mod can just delete this one. Thanks.
No, it isn’t mundane. It’s tearing you apart and I’m trying to think of something encouraging to tell you, but the truth is it looks like you are on a rough road. I want to tell you to take care of yourself, but I’ve been where you are and that can get really hard to do. All I can tell you is that you WILL get through this, it is all about hanging on.
This is long, feel free to stop reading if it gets on your nerves.
Many people don’t realize how hard illness can be on the person who isn’t sick. For me I remember those early days as a time when I really thought I could be a perfect caregiver.
I thought it was perfectly reasonable to expect of myself that I would keep up the house and drive to all of the appointments and have a great list of questions when we got there (and understand the answers!) and make healthy meals and take care of the laundry and update all of the friends and relatives regularly and hold down a job and pay attention to my kids…but no.
I’m so glad I finally figured out I couldn’t do all of that because it’s been a four year fight so far and I would never have made it if I hadn’t hit the care giver wall.
I don’t know your situation but here’s what has worked for me:
Do less. Make a to not do list of bullshit crap that you feel you should do but that honestly could be ok left undone and then let those things go.
Assign someone else the job of family/friend updater if you can. An email list could help keep everyone up to date and that would be one way for someone else to contribute and be there for you.
If you are coming home from work and going right into caregiver mode you need a me stop. Is there a pretty place, park or fountain or whatever on the way home? Make a habit of stopping there and make yourself relax there for at least 10 minutes before you go home. Try to think about lovely things for those few minutes if you can.
The fear that this illness will not end well has been overwhelming for me at times so it helps to stay in the moment. I know that sounds corny, but the way I do that is by telling myself ok, no one is going to die today. It helps me avoid freaking out.
The collateral stress of being a loved one in this is very real. It might help to find a caregiver support group - if your husband is part of a patient support system, they might know of such a thing.
Working out is a good idea. The key is that the energy follows the working out, and to avoid the damage, you need to give yourself priority sometimes.
I don’t have any solutions, just a comment that stress can exacerbate cold sores, shingles, hair greying, joint pain, etc. So it’s no wonder all this is suddenly happening.
I know that doesn’t help. Try to hold on a little longer- Sundays are a very slow time for the SDMB. Soon someone with more wisdom than me will be along to give more concrete suggestions. Until then, you have my sympathies.
I think Moejoe has some really great points in there. And maybe the most important one is take 10 minutes or so for yourself between job and home/job or whenever you can. The thing about stress, for me at least, is that it builds on itself and if you can break the momentum, it losers the stress a lot when it does start back up.
You really can do this, but you really don’t have to do EVERYTHING.
I wanted to second this advice, and all of moejoe’s other excellent advice. When my daughter was born and in the NICU, and my wife was hospitalized, and my son was showing the first signs of autism, one of the ways I got through was to divide life into two categories: 1. Stuff that absolutely had to be done right now, and 2. Bullshit. It’s amazing what you can cram in category 2. Focus on you and your husband. Take as good care of yourself as you can, otherwise you’re not good to anyone. That is far easier advice to give than to live, IME, but it is good advice. Let the rest go, including us. Our hopes and prayers are with you through the road ahead.
No, this is absolutely not mundane. It’s your life you’re talking about, and that matters. I doubt that it really helps much, but we are here if you need an ear. Try to listen to the people here who’ve done some of what you’re doing, and do remember that it’s okay to take care of yourself, even if it’s just a few minutes of closing your eyes and not doing anything. It’s also okay to not be perfect and it’s okay to feel your own feelings. Your husband may be the one with the illness, but that doesn’t mean his feelings or his needs are the only ones that matter.
I know, I KNOW, that you don’t want to exercise. Try your very hardest to do it anyway. A walk around the block, in the evening, maybe. Or, 5 pushups and 5 situps in your living room to start. There is, quite literally, nothing else that will help more. And, here’s the thing…if you do it one day, it gets easier to do it the next day. And then it’s even easier to do it the third day, etc. Try telling yourself this, as you go to the gym, or walk or whatever. This is the hardest it gets. If you can get through it today, you can get through it, and do more (even a litle bit more) tomorrow.