Fear

[Sunny]

How many of you have fear rear its ugly head?
The kind of fear relating to your health that you work so successfully to abate most of the time?
Mine consists of fear my kidneys will absolutely finally give out and I will actually need to start dialysis or accept that kidney donation from my 59 year old sister with high blood pressure.
These choices are hard to make. I never want to make them and do everything in my power to limit making the choice.
*******
This question currently relates to my Bunco group (in the past it has related to many other issues which I gradually work through).
This is a group of 12 wonderful women who get together 7 times a year to play Bunco, a mindless social activity game. I generally feel safe going to their houses, though I have gotten sick a few times when the hostess is sick. I have never said anything about my lowered immune system or even exact info on my diminishing kidney function, just that I have kidney disease because of GoodPastures Disease and figure if they want more info they will ask. Only two ever have. Now this group wants to change their function and do activities out in the real world,like bowl, eat in restaurants,help the homeless, volunteer in soup lines. All these things I fear and limit because I get sick sooooooo easily and because when I do get sick, I know it may mean the end of my meager kidney function. So for the last seven years of my kidney disease with much trial and error I know EXACTLY what my physical limitations are and how do deal with them in order to survive. Exposing myself to germy and risky environments has become a genuine phobia for me. I am thinking of quiting the Bunco group because of my fears, and I can't even bring myself to explain why. I don't want to expose my weakness. I don't want to admit to anyone my kidneys are about 15-20% functioning. I don't want anyone feeling sorry for me.I don't want these women to be forced to make any decision of what they want to do on account of my sickness. The worse my kidney function gets, the worse my germ phobias become. I joke about the phobia, but it's all to real for me. After all, I probably contracted GoodPastures Disease to begin with from something in the environment, and I just got over Staph infection in my nose from an airplane flight.
*******
When fear surfaces, what choices have you made?

[Ang]

hey  sunny


fear  as  such  i  don't  encounter  at  all,  but  am  mindful  of  situations  where  i  can  be  compromised.

the  pity/sympathy  part  of  your  post  you  have  no  control  over  what  so  ever  because  its  a  natural  reaction/feeling  when  someone  says  they're  sick  with  .

healthy  people  don't  know  how  to  react  when  this  scenario  arises,turn  the  tables  and  some  one  told  you  your  exact  saame  circumstances but  they  had  the  ckd,  you'd  feel  sympathy  i  guess  its  only  human.

be  open  and  honest  with  bunco  group,go  to  some  of these  places  they  wish  to  go,hang  in  the  background,you  could  always  leave  if  you  so  desire.
get  out  and  enjoy  life,you've  only  got  1

i  wish  you  luck  with  your  future  endeavours

[G-Ma]

ang was very right...be mindful of situations...I had hepatits very bad in 1992 and that killed any immune system I ever had and I do everything I want, I just am very aware of what is around me....don't knowingly go shopping during flu season...yes I have worn a nose mask at times and I am not ashamed of keeping myself healthy...my sons are bears about my health...they will flat out tell someone who wants to see me while they are sick...ain't going to happen and I do fine..right now I follow a person around with a spray bottle of bleach solution and a can of lysol because he constantly is choking/coughing etc from a cold where I volunteer...I may be strange but as healthy as I can be.   

[jbeany]

I refuse to let germs control my activities.  I have enough limitations because of my health problems, thanks to the constant nausea, and the fatigue.  I don't need to add panicking about everyone's stuffy noses to the list.  I do think about it far more than I used to, though.  I do wash my hands to the point where I seem like I'm OCD.  I do have Purell at all times and I'm not afraid to use it!  I also am not afraid to make my friends do the same.  Mine all know about my health problems, and don't have any problem with it.  You might want to take the step of letting your group of friends know about your health problems.  If you can't deal with telling them everything, just tell them that you have a low immune system and you have to be more cautious than the average person.  Tell them you don't want them to stop what they are planning on your account, and that you want to be involved, but you are going to follow your gut on what's best for you.  Maybe you can't go to the shelter and feed the homeless, but you can make phone calls to collect donations, make blankets, etc.  I hope you can find some way to be involved without cutting yourself off from your friends - I know I need and rely on mine more than ever now.

 

[flip]

As Roosevelt said "The only thing we have to fear is fear itself". I don't alter or reduce any of my activities because of my disease. I'm not willing to change my lifestyle just because I'm afraid of catching something. Just my opinion.

[kitkatz]

I teach in a middle school. I tell the kids to not throw their tissue in the trash can by my desk and to please use the hand sanitizer. I greatly fear their colds and flu bugs.   One year every time this one boy was sick I got his cold too. Holy smokes. 
 
When the entire class is coughing and sniffling I just hope to God I do not catch any of it.  I use the hand sanitizer a lot then. However I cannot and will not let ESRD take my life and happiness away from me. I go places and hang out with friends.  I keep my dialysis appointments.  I have not missed one in almost ten years, so far.

I think you are going to have to decide to live your life with ESRD te best way that you can.

[pelagia]

It's always going to be a balance between staying healthy and having a life.  If you let fear rule it will probably have a negative impact on your overall health.  You need to remain in control, but won't that come more by making good decisions, rather than by being fearful?

[kellyt]

Right now my desire to "stay out of the real world" and stay at home isn't driven by fear at all.  I'm battling "desire".  I have no desire to go to parties, movies, shopping, etc.  I'm not depressed, or at least I don't feel depressed, I just have little energy (actually it comes and goes) and I just prefer to stay home.  I need to work on this because I know I have little time until I start dialysis and I should get out and enjoy my time more.

So I guess my answer would be "no" regarding fear.  I am nervous about the future, but so far not fearful.

[del]

Sunny have you talked to anybody about your fears???  Having a fear (phobia) about something is awful. I have a fear of animals.  Even little dogs that I know won't hurt me.  WE had a husky for a couple of years and I was scared to death of him!! I just couldn't help it.  Can give you panic attacks just thinking about the fear.  Can you talk to one of your friends in the group and explain your situation. In most cases friends understand and really want to help. Don't feel like you have to quit the group. I'm sure you can work something out with them. 

[G-Ma]

today...on my own...I took my 14 yr old g daughter to the HUGE Greek Festival in  downtown Charlotte...we had to park 2 blocks away...it was extremely warm...several thousand people to wander through...hopefully didn't breath sick air....tried some Greek delicacies...and rapidly dehydrated (have to watch that) but had fun..first time on my own since diagnosed and still feel great tonight..some toe cramping but otherwise great..and she had such a good time...I'm so glad I tried this and will do more again..need to live life to the max.

[Sunny]

Thank you for your insight.
Flip, I have always liked Roosevelt's speech regarding "Fear". He is one of my favorite presidents.
G-Ma, I went to our local Greek festival yesterday too with my husband and tested the food.
As others have mentioned about themselves, there is that whole other issue I have to contend with over energy levels, fatigue, and nausea. Something the average human never has to deal with. After going to the Greek festival, I came home, sat on the couch to read a book, and fell asleep for 2 hours from 4 till 6 pm. I tried to wake up, but was so tired from going to the festival (no we are not Greek but just like to have fun sometimes). Then today my stomach hurts and I don't feel too good,plus diarrhea, probably from the food. It will take me a few days to recover. In the mean time I still have to keep house, cook, care for my two teen-age children and husband regardless of how I'm feeling. It is an "in your face" reminder to me that in pursuing these things my group of Bunco friends want, I will be risking much more than they. I am still in a quandry. I think I will just forget about it for a while and mull it over some more. Our next get-together isn't till October. Maybe I'll be over my anemia by then and my outlook will be different. In the meantime, I'll continue to obsessively wash my hands and limit my exposure to obviously sick people (tee-hee). I don't feel llike I have full blown germ phobia --- Yet!

[twirl]

dialysis patients know the true meaning of fear

[thegrammalady]

i probably should be more concerned than i am, after all the last bout of flu or whatever it was landed me in the hospital for 3 days. but i'm not, germs are everywhere. while i'm not going to subject myself to something i'm aware of, but i'm not going to spend my time worrying about what i'm not aware of.

[kitkatz]

I agree with you grammalady. I cannot worry about every little germ that is in the world.  Just wash the hands and use hand sanitizer periodically. I also wipe desks at school with clorox wipes. I also wipe my desk down periodically.

[Wallyz]

I think that we (renal population, and chronically ill people in general) have more adjustment disorder and PTSD than is generally recognized.  I have had great success using basic mental health techniques, (exercise, talking about trauma, checking in with people I trust about whether my fears are rational or not) and my sister (who is  a therapist) recommended EMDR.  Has anyone else used that technique, or any professional Cognitive therapy?