How far have you come in your recovery?

I'm curious how much of your life you've lost, then regained since treating for this disease.
Have you been able to return to work?
If so, how is it?
If not, what prevents you from getting back to work?

How about recreation?

Social life?

House hold chores?

Do you have exertion intolerance?

I hit rock bottom last September with fatigue being my most disabling symptom. To be sure, the brain fog, anxiety, insomnia, gastritis, pain, air hunger, dysphonia, etc all suck. But the fatigue has robbed me of my life. I've been mostly house bound with the exception of trips to the Dr., pharmacy, light grocery shopping and the occasional meeting with friends for tea. (I'm laying off coffee)
I'm beginning to regain my energy and can mow the lawn (60'x60') without problem and light house work, and some gentle yoga, and resistance band exercise.

I'm still not able to return to work. I work as a speech therapist in schools and nursing homes and it's fast paced with lots of walking. My stamina isn't up to that yet. Plus, I've got a terribly hoarse voice that I can't do anything about despite trying all the strategies I prescribe for others. I've also got mild word retrieval issues. How embarrassing.

I've gone to 3 social functions since September which were all difficult. I get over stimulated big time in group conversations and the brain fog becomes really intense, like I'm gonna black out.

We got a new truck and travel trailer just before the meltdown and I'm really itching to get it out to our favorite places to hike and enjoy the great outdoors, but I'm not there yet. Now, a hike through costco about does me in.

My friend wants to take me to see dead and company at the shoreline on 6/3 but short of a miracle, I can't imagine being able to hack that. Talk about overstimulation!

All that said, at least I'm not a prisoner of the couch all day anymore. There's one blessing to count.

In all fairness I'm well over 65 and been infected for 33 years.

I'm curious how much of your life you've lost, then regained since treating for this disease. I figure I have at different times during relapses lost over 95% of my life. At times I was, because of stupid drugs given me, a catatonic zombie. Since herbal treatment this year, I'm feeling much better as far as pain goes, but I still have no endurance, so I can't say I've regained more than 20% on my better days.

Have you been able to return to work? Before my lungs got so bad and while in remissions, yes.
If not, what prevents you from getting back to work? I am just too broken down everywhere.

How about recreation? I can't ride horses anymore, because of severe osteoporosis and loss of equilibrium.
I haven't had the strength (from lack of oxygen) to go fishing for at least the last 2 seasons. Or go swimming. I wouldn't dare try bowling again, the osteoporosis is pretty bad in my arms and fingers too. Going on hikes is out now. I can barely do a couple hours of shopping.

Social life?
All I had left of a social life was having my daughter and husband over for a meal occasionally. I can't do that anymore.

House hold chores? I do dishes and try to cook once a day, and keep my bedroom from turning into a pig pen. I have had to have help cleaning the rest of my home for a year and a half now.

Do you have exertion intolerance? Very much so, unless there is a large element of fear involved, and then I operate on pure adrenaline. And yes, that happens.

I have gone to a couple of concerts, a stage production and movies a few times, but all that involved was driving, walking to a seat and driving back.

Post Edited (julymorning) : 4/29/2017 11:18:30 AM (GMT-6)

I lost/shut down everything. I couldn't function at all. My word retrieval was at 25% or so. My memory and memories were gone.

When my mind works faster then my mouth I still lose words and can't come up with them. Yeah it's frustrating and a bit embarrassing but it's night and day better than it was.

I stopped going to work. I'm a principal in my families business. My folks opted to not have me go on disability so that I could still take care of certain aspects that no one else knew how to do. I've had periods of time where I've felt ok to go in a bit but there is nothing as stressful as dealing with your aging mother. My folks recognize how sick I was but my not working added a burden to my mom. She turned 78 a few days ago. I went in to help her with things she didn't know how to do this week and she said "don't yell at me". I responded "listen to what I'm telling you and I won't need to yell" Lol I'd never yell at anyone else but she makes me nuts. When I'm well we will have to work out a plan so my folks don't stress me out of remission. They stress over not being stressed. It's truly crazy and I won't let it risk my recovery.

Costco-Talk about overwhelming unless you are going for just a few items. My daughter and I did a big run about a month ago. Our cart was filled to the brim. By the time I got home and unloaded and put away my purchases I was toast. I had the inner shakes for two days.

I'm exercising again for the first time in 3 years. That's huge. I can walk endlessly but I have so little muscle strength, crazy.

I can keep up with my household chores but often mentally it's overwhelming. I used a food service for the last three years, still do on occasion but I can cook for myself which I couldn't do before.

The biggest change is I'm happy. I can play in my yard with my Labs. Toss a ball to the younger one and run and play a game with him that makes me laugh. I started tossing tennis balls to him in the yard about 4 months ago. I brought my phone out and put music on through my headphones and danced like no one was looking. That's what started me walking.

BJD-I'd avoid the concert-as great as it will be. I'm a San Jose Sharks STH. I think I went to two or so games early on. They did special effects on opening night and the lights pinballed around my brain. Thought I was going to have a seizure. I closed my eyes the instant I saw the light and both my son and myself put our hands over my eyes and it still pinballed for a minute or two.

I never would have thought I'd be treating for 3 years. Not ever. These diseases are nuts. I figure I have another 6-12 months to be 90-100%

My friend is optimistic that I'll be well enough to go to the concert. I haven't gone to many big concerts for a long time. I was well when I saw d&c in Vegas a year and a half ago and even then, the sound volume was intense. I wore ear plugs. Generally, even in the best of times I prefer smaller venues with acoustic music. I really want to go see d&c but I think I'll pass and just buy webcast this time around.

Girlie said...
I don't know Dead and Company. are they hard rock?
I went to Shania Twain, WOTE (with Marianas Trench), and Maroon 5

They're the grateful dead reincarnated with 3 original members with 3 younger guys including John Mayer. They're a rock band, they're loud, I never thought of the dead as hard rock. I dont how I'd classify them as they have many influences beyond rock; country, jazz, reggae, bluegrass, folk, blues, R&B, improvisational, unpredictable, you can even hear some disco in there at times. They play >100 different songs in a tour.

I've never heard of WOTE before. Checked them out on you tube. They're great.

Post Edited (BJD55) : 4/29/2017 3:49:07 PM (GMT-6)

Last year ,i was freezing in 90 degree weather ,couldnt lift a gallon of water ,had eye pain ,muscle wasting ,bad livedo ,couldnt handle movies or costco either.

last month i worked a 12 hr day ,have been seeing a few clients ,played golf ,saw logan and been fiming a documentary off n on ...

Yesterday i did bees ,iv roceph iv silver ,zhang ,and rife felt rough but went to the indian gaming facility and today did the mall. I live on ginsing and bee pollen but i live . I wonder if treatment is killing me or letting me live sometimes about to stop abx and trust bees and herbs and rife soon ...go to the concert bdj. Take what you need to make it eulthro ,zannies whateve ...life is short

I've been sick for 20 years give or take so it's hard to know just what I've lost. I mean, I missed a lot of school as a teen due to pain. I missed work a lot when I was working. Have had so many surgeries. Lost a lot of time and $$$ to migraines and doctors and all that crap. But the pain and everything has been with me so long, I thought it was normal. Got diagnosed in Oct/Nov last year. Finally starting to crawl up the progress slope fingernail by fingernail.
I do not work outside the home but I do homeschool my three kids. 5th grade, 3rd and K. Even at my worst I still use my energy to make sure they are getting their education. They are also very helpful and the older ones will read to their little sister if my head is hurting too much.
Recreation has scaled way back. Even going to the movies bothers me now, gives me migraines. I feel bad making plans with friends because I frequently have to back out or cancel. I hate that. But I am involved in teaching Sunday school to 3rd and 4th graders with my husband. If I'm having a rough day, he can take the reins and teach the class. It's fun. Plus we have Bible study with our small group every week. And I bring my kids to a homeschool co-op for classes once a week. That's plenty of social life for me. Too much! Lol!
I was working out regularly before this most recent flare knocked me flat and got me diagnosed. I had to stop because my heart would go nuts every time I'd do anything.
BUT...
I'm noticing less nerve pain, less constant pressure headaches, less migraines. Still nowhere near recovered but every couple of weeks I get a good day. I am feeling hopeful that things will get better. Every time my LLMD adds a new medication, I herx but then I make a little more headway. I've also recently added in IV myer's cocktails once a week and I feel like that is helping too. I may add glutathione to the mix this week. Slowly but surely. Once I get a handle on all the fatigue, I'm hoping to add in yoga or some mild bodyweight excersizes. I can never spell that word ever. lol!

Physically I would say 90% recovered. I can lift weights and jog several times a week. Legs are a bit weak from zombie shuffling for so long, but they are getting there.

My sleep has finally returned to normal which is a blessing and makes other things easier. For a long time it would swing between insomnia and sleeping all day.

Mentally my focus is maybe 80% of where it used to be. Still have some brain fog that lifts completely on occasion to remind me what the world really looks like, then it returns and everything gets that plastic look again.

But my memory is good and I'm doing better in my job. I never quit work, but at times my performance was pretty dismal. I am thankful I held on to it during this time.

Anxiety has mostly subsided, except I have a bit of trouble flying now which I did not before. Working on that with my therapist.

Don't do a lot of social functions except with my daughter and church. We go to movies. The beach. We take the dog for walks. My "friends" mostly disappeared when I could no longer hang out or play golf with them. My family are my friends now.

Depression seems to be the last stubborn symptom, and that could easily be attributed to the trauma of the experience itself rather than any lingering infection. But I have an excellent LLMD and therapist and feel I'm on the winning side of things.

So I lost a lot of what I never really needed and have gained a lot of things I never knew I would enjoy.

A few 90 percenters here........I dont want to jinks myself, so 89.5 percent for me.