what to do when i get frustrated/sad/discouraged

[Iamqueenofeverything]

Since I'm so close to needing a transplant, I have been doing more hospital rounds and Iv rounds at home. I have done the iv rounds about 15 times in about 2 1/2 years. once i start getting my work and social life together along with my strength, i get sick again. I'm getting frustrated/sad/discouraged about this. Does Anyone get this way? WhAt do u do to stop being frustrated/sad/discouraged ? ita hard because i can't work as much or do things socially. feel out of the loop in my social circl sometimes.

 

[nocode]

Shifting priorities. I started to get less depressed when my goal wasn't to go out or work anymore. When I had to stop working I finally realized that it was time to focus on my health and on not getting sicker, and then it's not so bad when you have to spend so much time working at it. To be honest, I thought my life would be over once I couldn't work anymore but it was actually a blessing because it took a lot of pressure off me every time I got sick and had to miss work.
That and anti-depressants. I would be a wreck if it wasn't for Zoloft.

 

[Kyrav]

I agree with nocode. I thought I would be so bored when I had to quit my jobs, but when I got to this point doing all my treatments has become my job. As for doing stuff with friends, I go out when I have the energy. Usually just to lunch or a movie or something. Sometimes they just come over to my house and we have pizza movie days, or lay out in the sun. Also my family is a big part of what keeps me feeling pretty good.

 

[iefisherman]

Find an alone time happy place. I enjoy the outdoors. Find something that takes you away and feels rewarding at the end of the day. I have had very low low's but deep down i know i just need to think and reflect on life sometimes. your life is your own, make it wahtever you want.

 

[Iamqueenofeverything]

How do you make money then if you aren't working? I hate the feeling that my parents are spending their retirement funds on me. They should spend their money but on them. Their budget is for them two not three people. I love to work. It is what gets me up out of bed!

 

[concernedmom]

How do you make money then if you aren't working? I hate the feeling that my parents are spending their retirement funds on me. They should spend their money but on them. Their budget is for them two not three people. I love to work. It is what gets me up out of bed!

Just speaking as a mother (not a cfer), given the choice between helping my child financially in order to allow her to be healthier and happier, or spending the money on myself, I would choose spending the money on my child. Every time. If your parents can, and are willing to/want to, then let them. Do you have a short-term disability policy through work? If so, have your doctor write you out on permanent disability, use your std policy and apply for SSDI. If you don't have a disability policy but your parents can afford to help you while you apply for SSDI, do that. I'd suggest sitting down and having an honest conversation with your parents. If that's not an option, hopefully someone else will have some ideas.

 

[nocode]

I'm on permanent disability benefits, and if I cannot afford something, my parents are more than happy to help. Just this year they bought me a car because it became very necessary due to my lack of energy. My parents do not hesitate to help me when it comes to my health issues.

 

[DianeM]

I'm on permanent disability benefits, and if I cannot afford something, my parents are more than happy to help. Just this year they bought me a car because it became very necessary due to my lack of energy. My parents do not hesitate to help me when it comes to my health issues.

I am also a parent of a 13 year daughter with CF who is 8 months on a waiting list for a double lung transplant. Writing on this CF forum is an incredibly positive thing to do since people on this forum can understand what your feeling more than anyone else possibly could. Continue to do so and know that we will write you to support you through your journey towards transplant. Your parents will always love you and I am sure want to support you in any way they can.

 

[azdesertrat]

Do you have a dog? You'd be amazed at how good a dog will help you feel. We lost 2 of our dogs in the year before I was listed. Its a shame they don't live as long as we do. We knew we couldn't live without a dog so my Wife surprised me with another Australian Cattle Dog puppy. She has so much personality, I kept telling myself 'I can't die now, I gotta see how this dog turns out!' She hasn't disappointed. It seems like whenever I get down or depressed my Little Buddy is always there. Another thing that helps me is realizing the fact that no matter how bad you think you have it, you don't have to look far to find someone else that has it a lot worse. I hope this helps.

 

[Iamqueenofeverything]

I know my parents want to do anything for me and have discussed my thoughts about spending their money on me. I can't stop feeling guilty and thankful. I feel guilty that they spend their limited income on me and they need that money for them if anything happens.

 

[Iamqueenofeverything]

On the per issue, having a pet is discouraged for those who are close to a long transplant for sanitary reasons.

 

[LittleLab4CF]

Sad and Discouraged sounds bad. Maybe this is the time to discuss an area of health care we seemingly insist on treating ourselves. Genetic drugs and DLTs won’t cure or adequately address our mental health. This is for CFers the patients and CFers the family equally.

Whatever you are doing or not, a mental health professional needs to be on your team. I prefer psychiatrists over other choices because of the potential interaction of medicine and disease. An antidepressant could be fine or it could agitate or depress your respiration and such. A psychiatrist has the advantage of being either an MD or DO prior to becoming a psychiatrist for us is both a better understanding of their specialty drugs and chronic medical conditions.

It comes down to pampering. For me, I’ll take my head for a massage anytime over a physical massage. Maybe not, but this is a place where you can voice your complaints when there is no other appropriate place to do so. You can talk about your fears and hopes and grieve over the things you have lost.

If you are on a transplant list, chances are that you already have a counselor on your team. It usually takes a while for a person to bump or scratch against the dam that is holding everything good and vile in check. Is it time to purge some of the sludge at the bottom? If you aren’t getting your psychological needs met, maybe shifting priority with your counselor is in order.

This is going to be massive and great. I can’t imagine knowing that my health is going to have to hit a low at exactly the same time some poor soul loses their life in order for this to work. What a puzzle, you have to be almost too sick to survive in order to live again?

There are many ways to look at the help you get. I have been exploring what life must be like as an invalid. It is just a fear, I have Parkinson’s on top of CF, and oddly enough I don’t fear CF but Parkinson’s is another matter all together. At a point, somebody is going to be feeding me and wiping my butt while I drool in gratitude. Life is just that at a point and just any life may not seem acceptable. Thank your parents for your attitude and pride in self worth. You are worth every penny. I can’t think of a dozen people on earth who wouldn’t be deserving of the best care we can find.

Eleanor Roosevelt is to have said this, “Yesterday is history, tomorrow is a mystery, and today is a gift; that’s why they call it the present.”

Try to be still,

LL

 

[welshwitch]

I agree on talking to a counselor. CF is too hard to handle on your own, and friends and family can help up to an extent, but sometimes you just need a professional. Give it a try. Sometimes it just takes another point of view. I talked to one, and it really helped me not be in a constant state of panic about my health.

 

[Iamqueenofeverything]

Guess I made me sound worse than I really am . I have talked to conselers and physiocist in the past And they said I have a good grip on things. I guess my point is that I get frustrated because when I finally get my energy back I get an infection. I'm sick of the whole rinse and repeat thing bc an infection knocks me down when I finally think I'm well and start being active in my life physically and social and professionally

 

[LittleLab4CF]

I totally get it, and I think you may have read too much into my reply to your opening post. It isn't so much you, you just summed up CF in your "rinse and repeat" analog of the flat out drudgery of servicing a genetic error.

I am looking at your situation and the events that are unfolding. Your grip on things has shown and shined in your missives. It is as if your biorhythms are converging but in far more tangible measures. You are possibly feeling a little puny physically now and with your guard down, that grip becomes fragile. Grip or grief, as your physical tone gets more stressed unless you have a very remarkable aptitude and attitude, your ability to handle and deflect the things you have to deal with will be compromised. Duh?

Just because the issues are incredibly obvious their magnitude is real. When your reality is incredulous, suspending belief in it is easy and somewhat necessary. Just as you treat CF like a rock in your shoe, when your absolutely wonderful outlook is betrayed by your body, it eventually wears a hole in your soul, foot or otherwise.

My suggestion for engaging a counselor was delivered with the whole CF community in mind. You worry about your parents and their sacrifices, you are concerned about making a living now and after your DLT and you don't want to drop out of the social circles and not see the friends that feed your psyche.

Nothing wrong with all of this, it shows character and strength. Your parents are hopefully just living close but still within their means so try to be gracious and accept what you are given, hard as it is. They would feel terrible if they couldn't help, trust me. I was fortunate to be in fields of work that paid well. If not, my mother and sister would have had very hard lives. My father died from CF complications when I was 20. His diagnosis was post mortem and his decline precipitous. In order to keep a roof over our heads he had not kept his life insurance premiums current. Oops. Enter my good fortune and an opportunity to be useful. My little sister was severely bipolar I, her illness seemed to be triggered by her first pregnancy at age 21. Now she is gone and we have her kids, one being our dependent. If I went back in time 43 years knowing what I do, there is very little that I would do different. The ledger is loosely held in my mind and on balance, it was no burden. How can you argue spending a fortune maintaining a priceless treasure?

A moment of panic keeps us sharp an attack of panic gets boring fast. Sorry if I seemed to over react. If I thought you were anywhere near a cliff you'd be getting a PM.

LL

 

[bookperson]

I can empathize with you. I am not yet close to transplant, but I get sick on a very specific cycle of every three/four months. It leaves me very little time to pick up the pieces of my social life. I have not yet solved that problem, but use my 'good' time to pursue things I like to do. If my friends are still around, they join me, but not many are able to understand the rigorously scheduled, un-fun CF life. Whatever. I can see things from their perspective and understand how it might not be awesome hanging around a sick lady who has to be home early, can't drink, and has a weird restrictive diet (CFRD) all the time. I guess I just made peace with that and don't worry about it too much. When I stopped working I had a lot of identity issues about who I was without a job; I got used to it, too. I think of CF as a job, and I don't feel guilty about other people's misperceptions of my situation.

Unlike you, my parents only help out financially in smaller ways, like occasional groceries or clothes. It's probably because I'm married that they don't help more, but my hubby and I are pretty destitute since I don't qualify for SSDI. If I were you I would gratefully accept my parents' willingness to help, knowing that if I could, I would do exactly the same for them. I don't know why in our culture we are made to feel like we should be totally independent of each other; it's a sham. We will all be dependent on each other at some point, we shouldn't be made to feel ashamed or guilty about it. Our culture makes weakness into a vice, wants illness to hide itself (unless it's got a great, hyper-positive PR campaign like breast cancer does), and considers us valuable according to our ability to work. Think of the older Americans who are shoved into assisted living facilities because their children consider them to be too needy and disruptive of their own lives (or whatever their reasons are for doing that). I wouldn't do that to my parents, no matter how strained our relationship sometimes is. Sorry, I just stuck a rant in here. My point is, it's okay to be weak, it's okay to need help, don't feel bad. It's clear your parents love you and want to help you. Let them, and relax your conscience about it.

 

[nmw0615]

I am not near a transplant yet, but my hospital stays are getting more and more frequent and I can try to understand the up and down feelings around the time of hospitalization. I'm about to go in for my second hospitalization in as many months and I was feeling extremely discouraged. What helps me is writing it out so I can start to sort through things. It's hard for me to grab hold of things in my mind and try to deal with them, so writing my issues out gives me the chance to figure out what I'm feeling about what.

The other thing I have that I consider to be a secret weapon is a friend that, although she doesn't have CF and therefore can't really understand everything, she lets me vent when I need to, but then she gets me thinking about the good things. She knows that sometimes her job is to let me whine and moan and then kick me in a butt and tell me the things I'm forgetting to look at. We've known each other for 17 years now, and our dynamic has worked wonders.

I live at home and depend on my parents for a lot. I do get SSI, but I also need their assistance. I have always been an independent person, never really asking for money or financial help. My father sat me down one night and told me they were happier to help me than to let me try it on my own. In his opinion, it would be worse to watch me try and do it on my own while they went on vacations than it would be to not go on vacation but know I am able to take care of myself physically instead of worrying about money. There are some things we record the price of because I am determined to pay them back for some things when I can, but I've also learned to let go of a little bit of my independence and accept their help without guilt.

 

[kristal k]

Same here.....
My hardest feat was to stop working full time and apply for ssi. It took about 9 months to get approved, but they back pay to 3mnths after you stop working. When I made my health a priority, I gradually got better, and after about a yr was able to go back part-time. Just the stress on not having to call in or cancel on friends as much was a huge help. I pretty sure we all have those awful mornings that crying, snotting and coughing more because of the crying and snotting can't be avoided..... you can get through this, you ARE thequeenof everything, right!