What do you tell people??

[Concerned Gal]

Hi all,

Just giving you all an update. I'm still experiencing the effects of the leak - grabbing sensation around the left side of neck, hearing going in and out, pain in the upper back (not too often), pulling sensation at the back of head. But i've been managing with it and able to work, so still hanging in there. Not as severe as I've had it before.

Wondering, for those who have less symptoms than they once had, how do you manage the feeling of it coming back. I went from no symptoms, to extreme symptoms, then back to milder symptoms. Just wondering whether anyone else is in the same situation, and how you cope with the emotional side of that? I'm trying not to be negative but I feel like i've only been given a short reprieve, if you know what i mean?

Just wondering, what do you (or don't you) tell people about your condition? Do you explain it in detail? brief description? or don't tell anyone. I try not to let on to people (and luckily i'm able to do this more than I was when I was lying down in hallways and at the office). But i've noticed with my colleagues in my office i have been telling new people so if I need to rest or leave they will know why and not that i'm being slack. However I was thinking the other day whether that is the best idea. I guess my thinking is i like letting people know who i might "let down" one day (ie have to leave a meeting). What does everyone else do?

Also, thought it would be fun to share bizarre things you do now that you have a leak. I notice that I use my feet/toes a heap more than I used to. To avoid bending down I pick up everything with my toes (i'm getting quite talented at it). I pick up paper and put it in the bin with my feet, pick up clothes and swing my leg back at the knee so I can grab the item with my hands. I just noticed how much I do it the other day, and laughed myself silly thinking it must look a sight!!! And I drink with a straw where possible so I don't have to tilt my head back or down.

Anyway, take care everyone


Edited to Add: - Oh yeah, between 9am - 5pm at work I drink 2 Litres of Water which doesn't include juice I have for lunch and the odd Coke hit to help the leak symptoms. My body just craves the water. I realised I was getting up to keep refill my cup often so I started using a jug and I consistenly drink the 2L, plus the fluids I drink before and after work. Anyone else notice how much fluids they are drinking??

[jimc]

CG, I have the same issue as you in terms of volatile symptoms. I felt pretty good the last 2 weeks of December, then for no apparent reason, suddenly felt awful again, and had to spend the vast majority of January lying down. At the moment, I feel relatively good again. My wife and I would like to believe that my leak is healing and I'm really getting better, but in the back of our minds, we wonder if/when I'll suddenly feel awful again.

My solution to this emotional roller coaster is the following:
1. I believe that I will get better, sooner or later. When I start having my doubts, my wife is always there to tell me that I will get better. I don't know if she truly believes that, or just hopes it, or thinks I'm actually doomed and is just keeping up a cheery front, and I'm not asking! Her 100% optimism helps a lot.
2. When I'm feeling "good," I try and get as much done as I can.

As for what I tell people, I don't tell most people much. There are a few friends who really do want to know the details of how I'm feeling, and I share that with them. Most people are, I'm sure, honestly concerned about me, but haven't been in the loop enough to make sense of a detailed explanation. When they ask how I'm doing, I keep it short and sweet: "A little better - we're hoping that continues." Or, "A little worse - bad headaches a lot."

Jim

[Edward]

Well, I am probably not the best person to ask because I may be little bitter. But through my years of dealing with my autoimmune disorder and now this leak, I have learned to tell people as little as humanly possible. I hardly volunteer anything anymore to anyone other than my wife. I have had too many people (employers, coworkers, even friends) who make unfair judgements. For people who are generally healthy and who have not had to deal with a chronic health problem, it can sometimes be very hard for them to understand at any level what a person is going through. And they end up assuming or concluding that it is all in your head or that you are a hypochondriac or the like. Or worse, they come to some conclusion that you are some kind of freeloader or con-man. I realize that there are situations where you have to share information (such as with your employer if your condition affects your job) or with a close trusted friend when you are really feeling down. But, I am just saying for me I am extremely selective and careful about volunteering any information any more. Once you tell someone something, it can potentially be used "against" you.

-Ed.

[Edward]

Hi,

I hope I did not come across as all "gloom and doom" with yesterday's message. I guess I was just trying to make the point that sharing health information about yourself with someone else can be a double-edged sword. There are potential benefits but there are definite dangers also. In my life, I have seen more of the dangers than the benefits - hence, my reluctance to share such information. That is why I so much appreciate this message board and the ability to anonymously share information with others who are in a similar position.

Have a great day....Ed.

[guineapig]

Edward,
If your previous post did not speak for us all, it at least spoke for something each of us has experienced somewhere along the leaky brick road.
guineapig