too tired

I was diagnosed when I was 19. I have had emotional problems since I was 7 when I was diagnosed suicidal. I have gone to numerous therapists and been put on medicine and nothing happens . I continue to be sad, no joy and no interest in life. This has been going fo 30 years . I am now 49 -my sisters are dead-Wilson;s disease and Ovarian cancer . the only family left is my father who is 94. I have stopped taking my medicine (galzin) several times over the years and nothing. My liver enzymes are always a little elevated. then I feel guilty that my sisters are deal and I am alive. so I take the galzin 2 at a time to maintain my existence. I am so tired of living and feel no joy anymore. I am tired and wish to stop this merry-go-round I am on. I do n ot believe it is the wilsons and sometimes think I do not have Wilsons since nothing happens when I stop the medicine. doctors do not have answers why I feel the way do.I just want everything to stop and go to sleep .I do not know why I am writing this but I had to get it out and talk to someone who has the illness and give me some insight .

By esther2k5
Posted February 4, 2008 at 5:08 pm
Report post

You are clearly depressed and not taking your medicine regularly is part of the problem--I've been down that road before but you need to take your zinc every day. It's crucial--your depression is a symptom of not complying with taking your medicine.

I, too, have suffered from depression in the past but ,I'm happy to report, not for several years since I added flaxseed to my diet--I add a tablespoon of ground flax seed (also called flaxseed meal) to my cold cereal and/or salads every day--it's worked beautifully to keep me on an even keel. The omega 3 fats in flaxseeds help maintain emotional balance--there have been a number of medical studies attesting to mental and physical health benefits of omega 3's. Plus, ground flaxseeds taste good and you can get it any health food store and some supermarkets' health food section.

Please respond to my comments and please take care of yourself--I am 52 and was finally diagnosed with wd at about 23 while I was still asymptomatic and when I stopped for a period of time taking the penicillamine I was given--I eventually started to have severe neurological problems (falling down, incontinence, slurred speech) but I was lucky to be able to reverse all the neurological symptoms within 2 weeks of taking trientine (syprine) which I researched and requested instead of penicillamine. I certainly can relate to the difficulty around compliance especially when your symptoms are not obvious.

Personally, I feel extremely fortunate to have a genetic disease that has so many treatment options available as most genetic diseases have no treatments whatsoever. Right now, I take non-prescription zinc gluconate in capsule form which works just fine for me.

Having lost both your sisters must be very hard and you do need to talk to someone about your grief and to help you let go of your survivor's guilt. I have a sister that I am estranged from and my parents are long gone so I know that dealing with life without any supportive family is not easy but I have some dear companion animals (a dog and 2 cats) that I enjoy caring for--and I volunteer at a veterans homeless shelter once or twice a week. Remember that life is intrinsically worthwhile and meaningful and you can choose to make yours better.

I hope my suggestions will be helpful and please email me and let me know how you're doing.

By achiotj
Posted February 6, 2008 at 8:26 am
Report post

Thank-you Esther, I have been taking the zinc twice a day single pills .I do not try doctors and I know the symptoms because of my sister. I will try again to comply it is just hard when my karma is so bad most of the time. I do believe in vitamins and will take the flaxseed/omega 3. As my father says have a good and healthy year.

By -Melissa-
Posted February 6, 2008 at 2:17 pm
Report post

A lot of patients with Wilson's Disease have depression. Also, by stopping your medication occasionally that makes the WD progress and get worse, which in turn makes you have more neuro symptoms (depression, suicide, etc). When a person stops their medication you won't notice a change right away. From what I have heard, it isn't always just "going to sleep"; but rather some people do suffer a lot.

By esther2k5
Posted February 7, 2008 at 2:58 pm
Report post

I'm glad you're taking your galzin. If you don't want to see a doctor or therapist about your sadness perhaps you would consider a bereavement support group to help you with your grief over your sisters' deaths. I'm sure you could research it and find out about any such support groups in your area. It would be good for you to talk to others who are in a similar situation.

Keep me posted about your progress in general and let me know if the ground flaxseed is helpful--it'll take a while to notice any improvement and it will be subtle but after several weeks you'll notice that your depression is lessening and you're feeling better.

Also it's important to add the flaxseed to anything that's only lukewarm or cold as very high heat reduces the nutrient value; I also add lecithin granules (1 tablespoon a day--also available at health food stores) along with the flaxseed to my cereal or salad as lecithin is beneficial to brain functioning but the flaxseed meal is most important.

Hang in there,
Esther

By Gina001
Posted February 11, 2008 at 8:34 pm
Report post

I think you have gotten some good advice here. Many in the community are very knowledgable. I wish I could add more but I am just figuring this all out myself. I just want you to know that we care about you here and want you to get better. I know nothing hurts more than depression. I have been there (actually before my WD diagnosis), and it is the absolute worst feeling. You haven't had it easy, but please don't give up. I'm sure you have more to live for than you even realize at this point. Things CAN get better. In the meantime you are in my thoughts. Take care of yourself and check back in to let us know how you are doing.
-Gina

By achiotj
Posted February 25, 2008 at 5:43 am
Report post

I think it is too late for me . Taking the zinc gives me no relief from this depression. It is no use to continue to try to be functional and fail. Just wanted to let people cherish their families because it is blessing to have them do not let petty anger or hurt feeling get in the way of enjoying them and being with them. I learned the hard way and now my entire family is now dead. My father died Monday morning 2:15. I have no family left and no desire to live anymore. I hope people can learn from my mistake.

By esther2k5
Posted February 26, 2008 at 7:12 am
Report post

You must not give up hope--your family would want you to be strong and brave and to continue on. Life is an adventure fraught with struggle but it's a worthwhile struggle; you are reaching out to others here which is a good sign...

Do you have any close friends that you can turn to for support? perhaps a minister or rabbi or counselor that you can talk to and share your pain? Always keep in mind that ilfe is worth living even when it seems like all is lost. Everyone loses family members eventually--our parents die and sometimes siblings as well; in saying this, I do not minimize your sense of desolation and grief and certainly pray that you are not contemplating suicide and will continue to take your medication regularly.

Don't allow your depression and grief to engulf and consume you--find things to be grateful for even during the most difficult times. Do something that takes your mind away from painful thoughts such as watching a movie or reading an enjoyable book.

Have you been started taking the ground flaxseed meal I recommended to you--it really is helpful for mood disorders. It's made an enormous difference in my life...

You can contact me directly if you wish at esther2k5@peoplepc.com.

By George3
Posted February 26, 2008 at 1:40 pm
Report post

Hi,

I am so sorry about your losses.

There is so much to live for. I am 60 years old, & was also diagnosed at 19 years old. I was on pen for 20 years, with lots of side affects, but that was the only drug available to me at that time. Although I have never suffered from depression, like many WD patients. In fact I have always been positive & happy, although I have been through many ups & downs. Since I started taking zinc in 1986, I have done really well.

There are so many patients in the WD community who have lost children or parents to WD, it is really sad. Life still goes on for them. There are a few of us who are fighting with the trials of this disease every day. I still don't understand why this disease affects almost every patient in a different way. I feel so forntunate. I still have slurred speech, because of WD, but I was able to live a fairly normal life.

Esther is right; there are many different vitamins & minerals that help each of us differently.

I would like to help you, Achioli. What is your real name? Where do you live?

There are many people in this community who have been in the p[osition you are in, right now, & we are on on here to help & support each other.

I suggest that you get out around people. One way to do that, is volunteer; at a hospital or some place. Hospitals always need volunteers.

You can write to me at georgefeldmann@yahoo.ca if you want.

Please don't give up. LIfe is too precious.

A FRIEND,
George

By achiotj
Posted March 2, 2008 at 9:13 am
Report post

Thank-you for the words. I am just cruise control and do not see any future for me. My entire family is gone and I have no one except acquaintances. I will take my zinc because it has gotten because my sister /dad would be pissed ; but that is it. I have no reason to live beyond this existence I have created for myself. I know that sounds crazy and selfish but I cannot see beyond today and get through today. i appreciate you and Esther 's words and will continue to exist -no more no less. I lived for my sister and Dad and they are gone because I trusted doctors and let them push me around. I will not make the same mistake again. i know I sound bitter ( just like my mom) and maybe that will lessen as the dreaded years pass. Thank-you again for your words and concern.

By esther2k5
Posted March 4, 2008 at 4:04 am
Report post

Hello again--I wish you would respond to my email invitation. I know that everything seems so bleak right now to you but you still need to live for yourself as you realize your father and sister would have wanted you to persevere and prevail.

Perhaps in time you can reach out to others and your acquaintances can grow into friendships. I don't know if you are working but many workplaces offer free & confidential employee assistance counseling.

I'd like to see you in a program where you receive support and guidance to help you to eventually move beyond your pain and anger and into a fulfilling independent life. There's no shame in getting help or going into a hospital setting.

PLEASE do something positive for yourself even if it's just a baby step...

Esther

By achiotj
Posted March 4, 2008 at 9:13 am
Report post

I am not working and have no plan to go back to work. I just want to be alone. I trusted the doctors and they overmedicated my father. His primary admitted he did not follow Dad as closely as he should of and his kidney failed. I have nothing and deserve nothing. I have heard those words from other people and wish to shut down. I am in so mush pain that I cannot feel anymore, I do not cry just stare blankly into space. My anger is towards myself for trusting people and letting them push me around. I will just have to adjust . I sound awful, full of self-pity l and a like a victim. My two code words. thank-you again for your random act of kindness.

By esther2k5
Posted March 5, 2008 at 6:04 am
Report post

I'm sorry, Achioti, but I think if you truly wanted to be alone you would not be posting messages to others in this forum--I have done some research and found a free Miami depression support meetup group for you. This is the link: http://depression.meetup.com/290/ . The organizer is Linda L. Block. Contact her--she probably will be able to suggest additional local resources that can help you.

I have thrown out a number of ideas and found you a free depression support group--it's now up to you to grab onto a lifeline...and I'm hoping that you will find the strength and faith to reach out and join this support group even if you feel you're just going through the motions.

Depression has distorted your thinking--you deserve to give yourself hope and encouragement . Believe me, I still occasionally deal with feelings of failure, loneliness, and disillusionment (I think everyone does at times) but I refuse to allow them to overwhelm me no matter what.

Wishing you well--and again, hoping you will find the courage to get yourself help and support,
Esther

By George3
Posted March 6, 2008 at 10:34 am
Report post

Hi Achioti,

We want to help you. You have friends here. People have been in the same or worse predicament than you, all over the world, & many with WD.

Please take Esther's advice. It can't hurt.

You say you have given up on life, but Esther is right, you are writing to this community.

My new wife was depressed a few years ago; even tried to commit suicide. She told me that by just writing to you & suggesting things would not help you. She told me if I wrote to you several times, offering my help, that might help. Esther has done that.

As I told you before, I was diagnosed 42 years ago, & have had my share of problems with my own health, & have seen probably, 400 cases of WD. Many of them wewre in bad shape.

Your Dad was 93 & had a long life. Your sisters weren't so lucky. You live in the USA & can thank the Lord or whoever for that.

I would like to help you, but you have to want to help yourself. It kind of sounds to me as if you are feeling sorry for yourself.

I have to go because my Grand daughter is here & wants to use the computer.

I hope to hear from you soon.

A friend,
George

Welcome to Inspire!

Explore topics in this discussion:

13 replies

Add to the discussion

Group leaders

You