Monday, September 24, 2012

How to Deal with Chronic Illness - You Tell Me


I'm feeling blue and introspective this morning, so if you're not in the mood for that, feel free to leave. I just have the need to be brutally honest about what life has been like for me lately, so that maybe in some cathartic way, I can get this all out of my system and not be such an emotional basket case all the time.

Chronic illness changes you. I've dealt with chronic pain, and the depression that goes along with it, but chronic illness is a whole different animal. I didn't know that. In the past, when I've had the chronic illnesses (and you can search to your heart's content, you'll find a lot of stories here – I write as therapy) I've ALSO still had the chronic pain. So it was just another layer, oh look, it's not just snowing, it's a blizzard, well ok, let's hunker down and wait it out.

Some of you are new, so you don't know that a true miracle has found me, and I'm now 100% PAIN FREE. Never thought I'd see the day, but it's here, and has been since about January 2012, so I think it's here to stay. What changed my life is The Feldenkrais Method. I started on 10/3/2011. So three months and then I could walk and move and bend over and tie my shoes and crawl under the kitchen bench to retrieve the errant grape, etc. I was “real” again.

Wait, not so fast though. I was just getting my body back, getting active after three sedentary years (quick catch-up for the much appreciated slew of new followers – I was supposed to have a full hip replacement for my advanced osteoporosis, at age 47) and then I was slammed with asthma complications. Spent a good part of 2012 on bedrest. Am just coming off of round number two, as of 9/7. It's slow going. It's a snail like one step forward three steps back sort of thing. Good days. Bad days. No medium days.

Here's what chronic illness does to you as opposed to chronic pain. It takes away your self-esteem. I can't get out of bed. I can't nuke a burrito for my 12 year old. He is more than able to take care of himself food wise, this boy wants to be a chef for pete's sake. He can make dinner for the family no instructions needed. So can Jake, but there's something nurturing about your mother preparing your food for you, of her doing your laundry and folding all your clothes meticulously (yes, there's a post about my un-natural love of laundry) and filling the drawers once again with clean clothes.

I couldn't climb the stairs, I couldn't sit at the dinner table with my family. They brought dinner downstairs, onto my bed. (We're remodeling our master bedroom, there's a post about that. Put old carpet in the search box...) Life has been upside down. For a person who is a go-getter, a doer, an organizer, a leader, a take charge, a non-stop kinda a girl, there is no punishment worse than bed rest.

Now I'm free to do what I want, as long as I don't get out of breath. It's not a lot, but it's a start. Life is slowly returning, but not my sense of self. I'm still the girl in the bed, reluctantly accepting help from one and all. I don't sleep, even with sleeping pills. When I have a good day, I sometimes see the real Tina. On the bad days, she's nowhere to be found. Last week she was so far away she didn't even blog.

Have you ever dealt with chronic illness or pain? How did you handle the depression? Any psychiatric types out there with a few words of advice? Just don't tell me how great bed rest is and how many movies you get to watch...I'm likely to throw my nebulizer at you. It weighs enough to cause some damage...

21 comments:

Alex J. Cavanaugh said...

Glad you're seeing some good days now, Tina. I've never been sidelined with something for more than a few days and can't imagine the frustration. I like my movies, but days on end because I can't get out of bed would drive me nuts.

JoJo said...

I have heard of the Feldenkrais Method but know nothing about it. I will have to check it out. Have you ever read about the spoons theory? It's fascinating and very accurate. A lot of my FB friends who are chronic pain sufferers often talk about being out of spoons.

Andrea said...

I wish I had something intelligent to say, but at the risk of saying something stupid....I will just send a hug!

D.G. Hudson said...

Hope you feel better soon, Tina, and I understand some of what you're saying, as my daughter has CVS, also a chronic illness (rare so the doctor says). She's had it for 13 years and still suffers good and bad days. I have a couple of posts on CVS on my 21st Century blog about dealing with it.

Chronic illness or pain which can't be seen and the depression at not feeling 'normal' are two of the things we've had to deal with. So, I sympathize and have an inkling what you're saying. LINK to post-
http://dghudson.blogspot.ca/2011/07/chronic-pain-of-cvs.html

Allison said...

Hurray for slowly getting better! I've dealt with a chronic illness for most of my life, and know what is like to go through lots of pain all the time (there's something else we have in common now--Firefly, Jesus, and now pain. haha). It can be really depressing. Being around friends who care and were praying for me helped, doing things to remember that life didn't actually revolve around me, and when I couldn't do anything I would often distract myself by watching tv shows or reading a lot. It is a constant struggle to be content under circumstances like these, that's for sure.

Allison (Geek Banter)

House Revivals said...

Chronic illness sucks. I miss you, my friend! Don't push the recovery too hard, okay?

Brian Miller said...

i got little for you on the managment of it...but i do know you can not face it alone....def great to have someone to walk it with you because you can get depressed enough with the pain and illness without lumping aloneness onto it...

Cheryl said...

The Feldenkrais Method is da bomb! I used it myself and, when I was a yoga teacher, taught many students simple routines. Such a god-send for chronic pain.

As for chronic illness & depression, you know I have more than a passing acquaintance with both. For me, the toughest part is/was the lack of support at home or within my circle of family & friends. People can see a broken limb but not a battered sense of self or these 'invisible' illnesses.

Nothing mind-boggling to suggest except "Easy Does It" on getting back into living life large.

Laurita said...

I've never dealth with chronic pain, but I can empathize with the feeling of frustration at not being able to function as you know you should. It's hard to fight through those days, but when you can it's golden.

Hugs, and best wishes.

Jenny said...

Bless you Tina.

I know chronic illness.

It gets hold of you and you are gone to yourself.

Sending you a big hug and a lot of prayers.

Annalisa Crawford said...

No opinions or comments from me as I've never suffered chronic illness. But, working in a gym, I deal with people who do. One lady recently could barely do anything, but she was so happy that she'd finally left her house, and I was so glad I could help her.

So just lots of thoughts and prayers from me. I hope you continue to recover, and that the real you makes a permanent reappearance!

Jenny said...

What I've learned from watching a family member deal with chronic issues is to be persistent with your healthcare providers and patient with yourself. And don't give up hope.

Best wishes for many happy, healthy days ahead!

Arlee Bird said...

Goodness, Tina, you've been through the wringer. Sorry that you're having to suffer through all that. I guess I can count myself fortunate healthwise so far. Glad things have been looking up for you some.


Lee
Wrote By Rote

Heather Murphy said...

I'm so sorry to hear about your frustration. I've had an experience with that when I was diagnosed with heart failure. Even though I have stabilized I still have good days and bad days. Breathing is highly underrated!

Sherry Ellis said...

I'm sorry you're dealing with all of that. I wish I had something useful to offer, but I don't. Here's a hug. HUG! Hope you feel better soon!

sue said...

A niece has at 25 years old got some horrendous fibrospinal illness that is totally debilitating - she's had to give up a uni course that she loves and is stuck in bed. None of which is of any help to you, but I love that you threaten to throw your nebuliser - that shows spirit! People have mentioned that to focus on the space between the pain can be helpful, I can't vouch for it though.
Sue

Jo said...

Not really chronic just continuous and some of it a product of age. Pain is something I seem to have to live with these days.

J. Kwiatkowski-Schuler said...

I'm sending you best wishes and hope that there are even better days coming. But you have made it seem like it will be a privilege to scrub the floor for my family, that was naughty.

loverofwords said...

It is so hard--long term healing. We want to be well NOW! I had a year-long illness, it was tough. In a TB San, little son sent to live with cousins, I read a lot, made my Christmas gifts that year. No one would visit, so on my weekend "furloughs" my husband and I would go to dog shows, many held out-of-doors. My mom was ill too, and that is what held me together. She was not going to get well, but I was, eventually. Tina, this is your chance to write that great book. Hang in there!

Hilary Melton-Butcher said...

Hi Tina .. I haven't I'm glad to say - but I admire your tenacity in coping and learning new techniques - I'm so pleased you've been pain free this year .. even with this serious blip.

I do need to get used to living as a normal human - rather than hours by my mother's bedside .. so I am in the process of getting used to moving and the Feldenkrais method sounds interesting ... something I've never heard of ..

Good luck and keep positive .. with thoughts - Hilary

mare ball said...

I had a back injury and was in pain for 6 weeks. I ended up having surgery, which, in time, corrected the issue. But, that first 6 weeks, I was completely depressed. I could not sit down...only stand or lay down. It was debilitating, and it gave me such awareness of people who deal with chronic pain. I was down for a relatively short time, but I did not do well w/ it. I'm going to check out the method you recommended. I'm so glad you are feeling better!