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shelleynshaggy

Distinguished member
Joined
Sep 2, 2009
Messages
280
Diagnosis
08/2009
Country
US
State
OH
City
Brunswick
Over the past 3-4 weeks I have noticed a change in myself. Thought I was getting the flu - just lack of motivation and achiness. Well the flu never hit - saw my doctor and he gave me a second prescription for depression. I am afraid my depression is getting worse. I told my doctor and he said "I think your doing good all things considered." Not sure what else I expect from him - I am on 2 daily meds and he gave a third for those "losing it" moments. I have expressed concerns to my mom and a couple of close friends - no one has any advice. I see myself slipping down this slope and can't figure out how to stop. I can't sleep at night (insomnia has been for over a year, partially due to working weekend nights) but can't wake up in the morning. Now that I don't work weekdays I have a hard time getting my butt off of the couch, which in turn makes me more mad at myself. I know I want to get up and do something - just can't seem to do it.

I started working out this last week to give me some "me" time - hoping it will also help increase my energy levels and get my mood up. Hoping to start to redo the bathroom - something I am excited about - but still all I can do is think about curling up into a ball and pulling the blanket over my head. Just feeling so trapped knowing things are going to get worse and I have no control. I actually dread going home - don't want to deal with Jim or the kids or the dogs - just a reminder of how different life is. Just generally annoyed about everything - which makes me more upset with myself. - just that vicious cycle. I have sought out support groups and even seen a counselor. These support groups have helped but the counselor was useless - good the first couple of sessions to get everything off my chest - but again just someone else who doesn't get it.

I think the short days are just adding to my mood - always been a winter blues person - but it's not even winter yet. I feel like the days just go on forever.

I know I am preaching to the choir - and partially just needed to vent to people who get it. Not sure what I should do - but just getting it off my chest hopefully is a start.
:oops::-?:cry::(:confused::evil::mad:
 
Sweet Shelley, no need to beat yourself black and blue! It is overwhelming. It is frustrating because it is in your face how we have NO CONTROL! Maybe you are having an ADVERSE reaction to the antidepressants? Look them up online and see if you have any of the symptoms that would point to a unwanted side effect. I took Chantix and I was totally, cold and calculated Suicidal! Very scarey and weird. Have your Doctor check your blood level of Vitamin D3 asap. D3 is critical and only recently recognized as being soooo essential. We also live where there is little sunshine in the winter and we are all on suplemental D3. Research it!
Ok, now I am going to give you a little butt kicking :] The one thing that you do have control over is your attitude and perception. Make a choice right now on how you will CHOOSE to live the moments today! You can choose to curl up in a ball or you can actively choose to become a WarriorWoman that is going to kick ALS ASS! I am a Tawanda Warrior Woman! My choice is to becoming empowered and to actively fight and advocate for those that have no voice, for those that can not move to fight. Want to join me?! I also invite you to the Girl's slumber party :] We all of those moments of despair but I promise you, it will pass. Sending you hugs, chocolate and love, Kay Marie
 
hey shelley. you are not not not alone. i have a lot of those feelings too. sometimes i feel like a robot taking care of my husband. tube feed, wipe eyes, empty catheter, blanket on, blanket off, more water, leave ensure out, clean up toys so w/c can get through.... and on. i try to at least put on the happy face for the kids and their homework/activities. i don't want them to end up in the same place i am. i am totally against taking any meds. for as much as we (all of us cals) have going on, i still try to take on little things around the house - painting a room, cleaning out junk in the basement, cake contest at school, etc. the last thing any of us needs is more work, but i have to have something to keep me going - something that i normally would do. these little projects take forever - but it makes me feel normal. i also dread going home sometimes. those little projects give me something to focus on. (aside from stopping 2 boys from their daily maiming of each other). just wanted you to know what is "kind of" working for me. i think the bathroom redo will really help. it gives you something to focus on during the project and admire every day after you are finished.

i am also sick of talking to people that have easy answers and just don't "get it". they all go home to their happy little lives. even my husband's neuro and RT really bug me. i think they've labeled me as "hostile" because i don't just jump on their little every-thing-is-ok-what-could-be-so-hard-about-this happy wagon. woops. venting now and i'm supposed to be trying to help. sorry.

stay strong. remember the tom petty song - something about standing at the gates
of you-know-where and not backing down. i hum it to myself all the time.
 
Hi Shelley,
I think we can all relate to your feelings. My husband was diagnosed in October 2008. I find going to curves three times a week really helps me. Don't know if that would work for your schedule but it only takes 1/2 hour to do the circuit and the cost is reasonable. I really believe that exercise is much more beneficial than medication. We need to keep ourselves healthy and this certainly helps me cope with the stress of this disease. Also, I am able to get out once a week with my golf group which is wonderful. If it is possible for you to escape for a full day once a week and get someone to take over at home this will be a tremendous help. Our support group meetings have suggested when family and friends ask what they can do tell them so they can help which will also make life much better.

Don't beat yourself up just get help so you can start taking care of yourself. Also, if you belong to a church there are people that volunteer their time to help people in our situations. Hope this helps. Bev
 
Shelley, I took care of my husband for 5 years with ALS. It is hard, but if you can find someone to help with the little things it really helps. Even giving him a bath/shower. That was the most stressful time of the day for us. I had total insomnia, racing thoughts. Tried several different sleep medications until we found the one that worked for me. I was always able to get up with him in the middle of the night regardless. It also took several different tries to get the antidepressant right. Went from Lexapro to Zoloft, back to Lexapro. Beverly Rees is right, you need to take care of yourself too, it is our nature as women to take care of our family first. You can still do that and take care of yourself.

There were many days that I just wished it would be over for us both. Then, when he passed, I felt bad for wishing that even though I know he is much better off and happier where he is. I was so used to HIS daily routine, that I slipped into a worse depression after he was gone. My purpose in life had left me. I was so used to taking care of him, that I feel now I have nothing to fill that void. Cherish the good times you have and try to get some caregiver help. Try different meds, you will know when the right one is there.

Hope you feel better. Lisa
 
A look from the other side; as one with ALS and depending on my wife as my only care giver.
It is sad to say that most of the problems the caregivers are facing a direct result, I think, of the attitude of the one needing the care. I went through over 6 years of therapy for chronic low back pain due to an airplane accident. It was a waste of time and money. I have been to several pain management clinics where I went thru hypnosis, Bio-Feedback, Electronic pads manipulation, hot pads, soaked in ice, had all my medicines removed for 3 weeks, you name it I have tried it, probably.
What did I get for all that? More depressed than ever, suicidal, mad at the world, and especially myself. I was a work-a-holic, and suddenly my identity as a perfectionist worker was gone. Who was I? I had no idea without my job. A lot of men have this reaction. They guage their lives by their jobs.
All during this time I prayed. Yes, I am and was a Christian during all this. Have been since 1972. Only answer I got to my prayers seemed to be no answer.
Where was God in all this? He was waiting for me to be still and shut up.
After many years I have learned to believe God has a plan for each of our lives, and somehow this fits into that plan. I now have peace with where I am physically, and more so spiritually. I know a lot of things in life come at us from the devil and need to be resisted and overcome. Evil and sin all comes from Satan.
I can have peace and give peace to those around me as long as my focus is not selfish, all the time saying me, me, me . My life is not lived for me, but for Jesus Christ. Sure I have my ups and downs, but overall, I can do all things thru Christ who strengthens me.
My outlook toward care givers is that you are angels who put up with all manner of things, but your reward will be great in heaven. If we chose to have a positive attitude, it can change our whole day, our whole life.
 
Bev - funny you said that. I joined Curves on Wed - went today and did make me feel more motivated. It is something I figure I could do now that I am not working so much. I think that is where my adjustment lies right now - went from working more than full time to part-time. Luckily - Jim is still self-sufficient. Our main struggle is the FTD right now - yes I see the physical changes but the mental changes are making me feel more and more alone.

I am lucky that my work pays for Curves - so I had no excuse with my cut in income and increase in time!
 
Hey Shelley,

I have had lots of experience with depression , myself just recently , and friends and family for a while.

The one piece of advice I can give you is "It takes time to adjust" . I applaud you in your efforts to remain active. That is a great start. I am sure your doctor has told you that it could takes weeks if not more for your body to adjust to your new meds .

Keep going , you are going to survive.

Glen
 
Capt Al, Thanks for being candid and sharing another part of your experience. I am grateful to you for your attitude and wisdom.

Shelley, I can't even begin to imagine what it must be like to experience what the FTD is doing to your husband. It has to be one of the most heart-wrenching experiences to suffer. All things come to pass.

Zaphoon
 
Hi Shelley,
I am so glad to hear you are going to curves. I know it has helped me and I have also gotten to know other women in our community that have been very helpful. Just today , I have connected with a young girl that works part time for curves and is going to help my husband go through paper work in preparation for our move next year. This alone has lifted my spirits. We can not do this alone and the more help me are willing to receive the better all our lives will be. I also went to my dermatologist today and got referrals for some help with daily living acitivites for my husband. I have always had alot of energy and been very independent but have had quite a melt down the last few days. I have been in a bit of denial and trying to do all the things I use to do before this diagnosis and have come to the conclusion that I can not do it alone anymore. I have sought counseling for myself bi-weekly which has been a godsend. Sometimes we do not want to spend the money on outside help but I am learning that it is essential for everyone involved. Shelley, primary caretakers and their lovones both are dealing with this diseae and neither situation is easy. Take care of yourself and enjoy time away for yourself. Bev
 
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