I have a condition that is never going to get better (& will probably get worse) & I am feeling low

Parent Cafe
1

The subject header pretty much says it all but I have a medical/physical condition that emerged in my teen years and has been with me, as my shadowy companion, for all of the decades to follow. Other than “monitoring” there’s not much to be done about it and the advice is to “stay in good shape otherwise” which i do. I went back to the specialist for the first time in 6 years today (if I had one word to describe my outlook in life, it would be “denial.” If I had to add a few other words, I’d say “what can you do? Just keep going.”) and, in a nutshell, he said, yup, still bad…getting worse…nothing we can do…but let’s keep monitoring.

And so I am feeling particular low today…are any of you living with something like this…a condition that is lurking…with a gray health future ahead of you?

Just feeling a bit sorry for myself right now and I don’t want to talk with anyone in real life about it. :frowning:

2

I can see why you are feeling sad about this. You have my sympathy. I understand not wanting to talk to your real life friends about it all the time. But it’s good to talk to somebody about it,whether it is a support group or a counselor or an online group.

3

I am so sorry to hear about your health issue and the poor prognosis. I don’t have any words of wisdom to impart, but want to give you some virtual (((Hugs))). I can understand not wanting to talk with anyone in real life about it, but I hope that you are surrounded by people who love you and can lend support.

4

I’m sorry that you are feeling low. Don’t blame you for feeling that way. I don’t have anything like you do so I can’t address that, but I wanted to reach out and just offer sympathy and let you know I will say a prayer for you to find peace. Thinking of you.

5

It’s ok to feel low. Most of us would. As they say, “health is a luxury” and many of us know someone very close to us - if not ourselves - for whom we too try to put in the back of our mind our worry for their health. My own personal reaction would be like you - to not want to talk about it with anyone close to me right away - I need to let my emotions sit in my own head for a bit until I’m ready. That’s ok as long as it doesn’t eat you up!

Do one thing before today is done. Plan at least one thing to do tomorrow that will lift your spirits. Buy your most favorite ice cream. Spoil yourself with some outside reading time. Take a walk with a family member or friend to get fresh air - or just sit outside with fresh air on your face.

6

I completely understand why you are feeling low ((Hugs)) and also why you don’t feel like talking to real life friends right now. Maybe an online forum like CC but dedicated to your condition would help? There are several I know of dedicated to diseases like Diabetes, MS, Arthritis, etc. Try googling the name of your condition plus the words online forum. I think communicating with others who are going thru the same things might give you the support you need plus provide access to new treatment information. Thinking of you and the very best of luck.

7

SouthernHope, I’m in that boat, too. You’d never guess by seeing me that I’m held together with bubble gum and rubber bands (and six-digit meds). I started seeing a counselor when I was diagnosed with the first illness nearly 15 years ago, as a way to keep my sanity and work on ways to help my kids deal (they were 10 & 11 at the time). I don’t vent much about my maladies to IRL friends; I do it here and on a couple private groups that I’ve been a part of for many years (apologies to all CCers who are sick and tired of hearing my saga). You can vent to me, too, if it is helpful.

Some days are quite gray; other days I’m reminded in ways large and small that it’s a miracle I’m still here and that I have gotten to see my kids grow up. The past few months have been really tough emotionally. I’ve been struggling a lot. Will keep you in my thoughts and prayers.

8

thanks guys…i will respond back to these sweet/helpful notes later…don’t want to get too teary here at the office…I work in a hyper-competitive field and the sharks circle at the first sign of weakness . :slight_smile:

9

I don’t have anything known, but the way I look at it, the rest of us just aren’t aware. My sil has a condition that could cause her to have a brain aneurysm and drop dead anytime. And she’s known for 20 + years now.

I’m not sure how worrying or fretting about it if there isn’t anything to be done would help. But I’m an over researcher type. Right now I’m losing weight and getting healthier and I’m on all kinds of boards for support. If only just to complain the kvetch with other people who get it.

But I am sorry to hear this. Everyone is entitled to a pity party now and again. But if it lasts too long, be sure to go talk to someone.

10

I think you are entitled to feel low and grieve for what you have lost from time to time. How to do it? IDK. Cry, scream, drink to excess, eat a container of ice cream or cookies by yourself, watch a sad movie. Blog your feelings. But because it isn’t over and you still have life to live, don’t get stuck in the grief.

I have a couple of good friends with autoimmune disorders. One stays busy with volunteering. She is so focused on other people’s plights, she can forget her own. The other is more of a celebrate the small things type. She enjoys her pets. If it is nice outside, she gets out and spends time in nature whether that means taking a walk or sitting in a wheelchair on the porch.

11

Sorry Southern. What is the condition? That may seem prying but a part of me is always in the camp of “someone may know something”. Please get on a forum that is dedicated to your condition. The support and information can be invaluable. Hugs to you!

12

I’m so sorry, Southern. Unfortunately, yes, I do understand.

I have heard from others that specialize counselors help a lot.

I’ve learned that not googling my condition helps me.

You also might want to try looking for a site called myXteam. Ie there is MyLupusTeam, MyRAteam, etc. I’ll link the big site when I’m on my computer next.

Big, gentle hugs. It can take a lot of time to process but give that to yourself. Let yourself mourn. It’s ok.

13

Allow yourself to feel it sweetie. Don’t let those S.o.b.'s at the office have an ounce of your precious energy. Get yourself home tonight in one piece. If you can find a quiet place - let it all out. If you feel you have to put it all aside for the moment, do that.

I’m in a similar boat. NOTHING wrong with a little denial if there is truly nothing you can do to alter events. ,

Lots of helpful suggestions above. Sunlight, indulgences, support groups…happy plans. All good. Just want you to know I feel yah…

14

Hugs. At times, I have felt very very alone with my medical conditions. And I totally get not wanting to talk to anyone IRL about it. Been there - I live with it. Talking aloud to someone about it means I might hear myself accepting the reality of this. Roughly twice a year I end up in the hospital for a few days. Some times I get so down I don’t know if this will be the end, or maybe the next one.

I truly believe, though, that the best way to get beyond one’s own problems is to help someone else. I have found great comfort in volunteering, helping others. I am still blessed that I am able to do this. I love helping out in the elementary school family resource program, and in our local soup kitchen/food pantry.

When I can, I also volunteer at our local hospital in the hospice center - though I was raised one, I was never a very religious person. But ten years ago, when my mom’s longtime neighbor entered hospice and needed comfort, I visited her with mom. She was much more religious than me, and wanted to pray the rosary together - but with her wonderful sense of humor, she would call it her “last minute cramming before the Final Exam - with a capital F”.

I learned more about peace, comfort, and acceptance from her last 2 weeks of life than I had ever experienced in my 40 years before that. She and I had talked frequently before that, and she was surprised I was coming in every day on my own after I volunteered at the inner city school 7 minutes away, even if only for a hour, though sometimes much more. At the very end, her only living relative, her son made it back from the Persian Gulf in time to be with her. He told me how grateful he was that I helped her hang on until he got back. I told him I was the grateful one, that she would share some of her remaining time with me.

I told him one of the last things she told me that week was that “Peace can find its way to your heart when you need it most, you’ll be ready to let it in.”

Mostly when I come in to volunteer at the hospice, I just listen, perhaps offer to get a cup of water or a small snack since I know my way around there. A few times, I have shared this story with patients or family members waiting for the inevitable tragic end. But whenever I go in, I bring “Aunt Julia’s” rosary beads.

@CountingDown and @SouthernHope, and anyone else dealing with something like this, I wish you some of the peace and comfort that I did not expect to experience back then. Just writing about this has helped me.

15

Darn missed the cutoff edit time. Here’s the link I was talking about: http://www.myhealthteams.com/

16

So sorry that you’re carrying this burden and feeling down. I can empathize, both from personal experience and seeing one of my kids go through something similar.

I realize it may not be feasible, but if there’s any way to change your work environment to a less stressful one then it may be worth taking a cut in income, title, prestige, etc. In the meantime, I hope you have loved ones who can help you find ways to add a spark of joy to the present. Dh and I spent a couple of months watching screwball comedies - dinner & a movie became our daily routine. It was a good distraction. I treated myself to cheap indulgences such as a bulk purchase of Calgon bath beads for a warm soak every night. I made myself take a break each day to sit outside, even if only for 10 or 15 minutes. I got every Agatha Christie story downloaded to a Kindle Paperwhite so I had something enjoyable to read in waiting rooms. Dh insisted that we start buying more prepared food, such as Publix rotisserie chickens, to minimize meal prep time. He knows I don’t want a weekly maid service, but suggested that we have a crew in a few times a year to do deep cleaning. Admitting I need help was (& still is) hard, but it’s better for dh and the rest of the family if I do.

I hope you get the support and help you need.

17

I totally agree with finding support in talking to people with similar conditions. You might find something that could help you deal with this. I wonder, though, medicine has come so far in all those decades. Do you completely trust this specialist that there is absolutely nothing that can be done otherwise? If it is that you actually know what exactly your condition is, perhaps there is something outside of the “nothing can be done” perspective. I have gotten to the point where I rarely trust one particular doctor, I want to get information from the person on the leading edge, trying different things, reading studies, not just “take this medication or do nothing”. If nothing else, sometimes it feels better to think you can try something that might help.

Besides this, your work sounds truly stressful! Are you sure that this is how you want to spend your life? Obviously I don’t know what your condition is, but it seems that everything is worsened by stress. Is there any way you can go part time/consult/retire early? I agree with Silpat on this, great suggestions.

18

@SouthernHope I can relate. I’ve spent around 30 years accumulating a variety of diagnoses, both physical and mental. The ones that could kill me (like heart issues) I ignore other than to medicate as needed. I find that it’s the smaller, chronic things – arthritis / bursitis / degenerative discs and depression / anxiety / PTSD – that drag me down the most.

My D17 was diagnosed with an autoimmune disorder last year, and is facing some limitations with her future plans because of it. I’ve been working with her on remaining adaptable to circumstances, having a positive attitude, and doing what she can to proactively improve her health.

It struck me in January that I was preaching but not practicing, so I began physical therapy, worked with my doctor to change / add medications, and I’m planning to try counseling again this summer. I know I’ll continue to have “blue” days, as will you. Allow yourself to mourn and then try some of the fabulous suggestions from other posters. Hugs to you!

19

I have done research in this area. Some of the people who have been extremely generous and done interviews with me have reflected how alone they felt, especially in crowded places (like work and the grocery store). Of course, what we all forget is that there are lots of us held together by duct tape and baling wire (the western US phrase). We are all out there thinking everyone else is doing so well. In fact, a bunch of them are looking at us thinking WE are doing well. If you read the statistics on chronic illness, living after cancer, long term effects of trauma, etc. there are a lot of us out there.

Finding your group is critical, I agree. The complicating factor is finding people who are in the same situation as you. Sometimes your illness is less the deciding factor - if most of the people with your illness are in their 70’s and you are single, and in your 30’s (as happened to one of my grad students), well, that group may be hard to identify with.

I encourage you to find people living with similar challenges (e.g., a workplace of sharks - I recognize this one!) in addition to the disease specific group.

20

I was diagnosed in 2000 with a serious progressive chronic condition and it was projected to get worse fairly quickly and likely require a transplant and/or other major surgery. 17 years later, I’ve still never been hospitalized and actually haven’t gotten much worse.

On the airplane, I saw a movie, “Miracles from Heaven,” that was uplifting, as I feel I have been amazingly fortunate thus far.

My kids have also had chronic health issues for about the same length of time with uncertain prognosis. We just all muddle thru the best we can.

Is there any possibility of switching your job and/or career to one that is supportive and positive? I’ve switched from trial law to working for the govt to starting and running my own nonprofit. The salary is much lower, but I really enjoy it and if allows me great flexibility and keeps str as levels minimal.