Back to Work

[wcrimi]

I returned to work on Saturday 12/20 for the first time since my surgery on 11/6.  Fortunately I was having a great day. My wonky head/balance was about as good as it has been so far, my hearing was as good as it gets, and the hissing and high pitch sounds I hear were also better than they have been. I got a little tired late in the afternoon, but managed to get through it and felt great that my life was slowly returning to normal.  I'll be working a couple of days a week for awhile to see how I handle it.   


Unfortunately, I woke up in the middle of the night last night and the hissing sound in my ear was super loud. Then I woke up this morning and my balance/wonky head was terrible all day. It seems like every time I have a very good day and get encouraged, I take a huge step backwards and get very discouraged again. Today was terrible.     


I just wish I could feel confident that I am going to get somewhat better with time.  It's rough to feel like this so often.

 

[Syl]

Wow! Your surgery was just over 1 month ago and you're already back to work. That's amazing. If you can get back to work so soon, I'm pretty sure you will continue to get better.  I think you are very wise in not returning to work full-time just yet. You do need to take it easy and see what your body can handle. Don't get discouraged when you feel terrible after a good day. I think what tends to happen is that as soon as we feel better we want to over-do it thinking that our bodies are back to normal. So we over-do it and our bodies respond by feeling terrible--to remind us that we are still healing.

My surgery was 6 months ago and I continue to see improvement with my balance and dizziness. It gets frustrating sometimes when I feel I've reached a plateau, not knowing if that's a good as it's going to get. Then, I notice that I can work longer or do any activity for longer periods of time before my balance is affected or before the dizziness gets worse.

Congratulations on your progress and be patient. It will get better.

Syl

[wcrimi]

Thanks for the encouragement Syl.  Maybe I rushed work a little, but I felt up to trying and really sort of need the income.

Maybe you are right that when I feel better I overdo it and I take a step backwards as a result. That's what happened last week too. I felt better so I went out to dinner and did some shopping at the mall. The next day was terrible.  I'm not sure how many days I'm going to work this week, but it won't be more than two. Both should be slow days because of the holiday. I'll see how I feel after each work day to see if there is a pattern to it. If it don't feel well, I'll back off work a bit for a couple more weeks.  However, I will be going out on Christmas eve and day with family that are anxious to see me (and me them). So it won't be an easy week anyway.

[jazzfunkanne]

gawd you went back to work really early, i am 2 years post op and still have not returned to work, i have just finished my cv so heres hoping 2009 is my year, take carex

[wcrimi]

gawd you went back to work really early, i am 2 years post op and still have not returned to work, i have just finished my cv so heres hoping 2009 is my year, take carex

If I had a source of income, I would have taken some more time. But I have no disability, unemployment etc...and I felt well enough to test myself. We'll see.  I'm sorry to hear you had such a rough time. I hope 2009 is a good year for all of us! 

[Syl]

Yes, I too hope that 2009 is a better year for us all.

wcrimi:
I remember that on the 3rd week after my surgery, I was feeling ancy from being couped up indoors--a multitude of blazes in California had polluted the summer air, making it impractical for me to go outdoors. Finally the air cleared a little bit, and I needed to get some Tylenol PM and a better pillow to help me rest better at night. I certainly felt better so I got a ride to the store. I was feeling really good walking around the store, searching up and down the aisles for my Tylenol and pillow--even if I had to hold on to the shopping cart to help me get around. Then, in an instant my head began to hurt without a warning. I only had time to get my Tylenol and pay before the pain got so bad that I began to cry. So much for feeling better. My sister and niece later told me that maybe I had overdone it. It was true though I never imagined that getting a ride to the store would result in so much pain.

I often say that I try to remember to count my blessings. Three of those blessings are disability pay, employment, and employment with excellent medical insurance. I really feel for those who don't have them. The stress that comes from dealing with the dx of a brain tumor alone is a great one, not to mention the added stress of the financial burden. I wish you well in your recovery.

jazzfunkanne:
what's cv?

Syl

[texsooner]

Just happened to log in and see this question...CV is curriculum vitae(or resume).

Patrick

[Jim Scott]

Wcrimi:

I suspect that you're suffering from the dreaded 'Inpatient Patient' syndrome. 

You feel pretty good and get restless (and poorer) when not working, so you try going back as soon as possible, as well as resuming your normal activities.  Boom! You're back to what seems like 'Square One' and feeling lousy, again.  I've read a lot of these stories on these forums.  I can understand the anxiety to both make a living as well as resume your rudely-interrupted life.  I was the exact same way.  Fortunately, I recovered rather quickly and had few lingering effects from the surgery.  I was also recently retired, taking the work issue out of the equation and making my recovery that much easier.  2½ years later, the whole recovery experience is a fading memory, much like my youth. 

Recovery from AN surgery is painstakingly slow and never on our personal timeframe, it seems.  Even my excellent recovery (about 2 months, tops) seemed too slow - for me.  All I can offer is the sound advice that 'it takes time' (to get back to normalcy) and yes, it does happen.  We have many members here that can attest to that.  Soon, I hope you'll be one of them.    Hang in there. 

Jim

[wcrimi]

Thanks Jim.

I'm not sure how much of it is impatience (although that's certainly a big part of it) as it is uncertainty.  I am thrilled that I still have pretty good hearing and didn't suffer any other complications. I guess I am one of the very lucky ones in that regard. I don't want to sound like a baby when so many people here have it worse.

But the chronic wonky head and clogged feeling/hissing in my hear are a tad distressing because it really doesn't feel like I made much if any progress at all in the last 3-4 weeks (other than me pushing myself forward driving local and working one day) . At my last checkup Dr. Smouha said things should clear up in a few weeks (that was two weeks ago).  I guess if I woke up and there was clear cut progress that lasted a couple of days I would feel confident that eventually I'll feel better and get at least close to the way I was.  But so far, even my best days are only a little better than 3-4 weeks ago. There's a bit of anxiety in not knowing if where I am now is where I'm always going to be despite what the doctor and others say because I can't see or feel it yet.  There's a few things I love that I won't be able to do if I don't get better than this. I guess I'm just plain scared even though I know I'll be strong enough to deal with it.

Sorry for all that.

I guess I needed to get those fears out of my system. It's funny because I was quite strong before the surgery and all things considered it went very well. Strange time to feel weaker and scared.

Have a great holiday and new year all. 

Wayne

[MAlegant]

So Wayne,
What I've learned is that this is no normal recovery process.  You feel good, so you do more, which is great.  Than you get socked with worsening of symptoms and fatigue.  It doesn't mean you aren't recovering, it's just not a linear process.  It's hills and valleys and if you're lucky, an occasional plateau.  But it is frustrating and tiring.  I've decided to give it a year before I jump to any conclusions (such as, "is this how I will be forever" and other cheery thoughts).  I am so grateful for good days and reduced to tears on bad days.  Fortunately the good days are starting to outnumber the bad ones.  In fact I thought I was doing pretty well, but an 8 hour drive to visit family, lack of sleep because I had to take my son to the ER at 5am (asthma, he's fine now), and possibly just being around my in-laws has brought back facial pain with a vengeance.  And I thought I was over the hump.  So there it is.  Enjoy the good days if you can and remind yourself how damn lucky you are to be alive on the bad days.  That's my method.
Hoping you are doing better,
Best,
Marci

[lacey7]

Wayne,
It's a very long road to travel....having this AN junk.  But, you have the surgery behind you, and that's a great thing!
You would surely rather be a postie than pre, I'm sure.  Also, your hearing is SAVED.  WOOHOO!!!!!
It will take awhile to get back to the new normal. 
You know what my doctor ordered for me that I think helped the most, in getting me stronger, and better?
He said I had to walk 30 minutes a day.....no matter what.  That helped the wonky headed feeling get better, it helped get me
thru things alot faster.  I felt so much better when I did that.  I started out walking with my husband.  He was very demanding....
either walk, or I'll drag you!!  But, it helped.  After a month of that, I could take my walk alone.....just stayed in the neighborhood.
I was able to walk faster, look around at things, not get so dizzy.  You know what I mean.  It really strengthened me.  I think I saw where you live in NYC...and it's winter.  So, maybe that won't work...BUT, do you have a treadmill?  That will still get you walking, and if it's by a window, you could still walk and look outside.
Or, maybe you can go to a gym, and use theirs.  My surgery was in the summer, so I didn't have that problem.
As far as the hissing in your ear.....I have that, and also had it before surgery.  It's harder to put up with at first......but after about 3-4 months, you
just kinda get used to it.  It will take time.  That was a rough surgery to go thru.
I understand how you feel.  I think we all wanted to get up and run when we got home from the hospital........but we know that was
impossible. 
You will make it.  And, it does get better.  I promise you that.
I am 6 months post surgery for a translab.  I just realized today (by reading other messages), that I can't walk with one foot in front of the other!!!!!  I look worse than a drunk!!!!  If I'm ever pulled over.........I'll be in the slammer for sure!!!!    ha. 
I thought my balance was doing ok.  I can walk in the dark thru our house without any problem.
Wow...that was an eye-opener!!  I need to practice that for sure.

[Syl]

Wayne:

You don't sound like a baby to me. You are allowed to complain about your issues. That's why we're here--to support you. You're not supposed to go at this alone.

Syl

[cindyj]

Hey Wayne,

Everyone has had great advice/comments - I can't add anything to them...in fact, I'm going to try to put them to good use myself!  I just wanted to say "hi" and I understand everything you're saying.  Do hang in there and don't be too hard on yourself - this is, as Lacey said, a long road to travel and you and I are still under 2 months post-op...

Take care,

Cindy

[wendysig]

Hii Wayne,
I haven't been on much lately because I've been busy getting ready for Christmas.   Congrats on your good hearing prognosis.  Sorry to hear you've been having a rough time with everything else though.  The only thing I have to say is that patience is key in recovery.  Recovery from AN surgery is kind of like a cha-cha.  One step forward, two steps back, two steps forwawrd, one step back, etc.  Your surgery was such a short time ago, I think you are expecting too much of yourself.  Getting back to work and normal life is something we all want and push ourselves to do but baby steps work better.

Best wishes for a Merry Christas
Wendy

[Debbi]

Hi Wayne-

Listen to your body!  It's great that you are back to work already - in my case, I found that it was "good medicine" to start working on a limited basis right away (in my case, I returned to very part time coaching about 2 weeks after surgery - I do it from my home office, so was very easy to execute a gradual return).  Just remember that you will have good days and not-so-good days and that's normal.  I still have poopy days sometimes - and I always get the encouragement I need from everyone here.  Hang in and have a wonderful holiday!

Debbi