Need advice- at my breaking point. Having a hard time trying to be normal at home at work even church. Right when I think things can’t get worse-it does over and over. Sad thing-Im not a sad and down person but right now I’m stuck… in this N Life.
Hello, can you give us some more information? I'm not sure what you need advice on.
Hello 8ntawake,
I hear you!
I'd like to offer a couple of suggestion that might be helpful for you...
1. You have made to positive steps; one by assessing your situation, secondly reaching out for help and not giving up. Those are very healthy things to do. So you have three positives on your side already.
2. The next thing to do is figure out what is helpful for you. What helps you deal with your situation? What is not working? Have there been any changes around you that affect your situation? These answers may provide more clues to improving what you can.
3. You mentioned "normal".... Well one thing I had to realize was that my normal was different than everyone else. It was pretty hard for me to do. I was basically a very healthy guy most of my life. Life threw me a multitude of curve balls all at once. In every area that you could think of. Because of other life events and challenges I had already been through my first step was - I will not quit or give up! At that time I didn't even realize the seriousness or extent of my situation. But that is the most important first step. No matter what I will not quit or give up.
4. Narcolepsy is an auto immune disease and as I have found out affects everyone in a different manner. I also realize autoimmune diseases tend to be not just one thing affecting a person. Realizing that and seeing what other things were affecting me I had to start to figure out what I could start to work on. The first one was T-2 diabetes... I had choices; drugs or lifestyle and diet changes. My doctor was surprised and pleased I chose lifestyle and diet. She said not many choose that. That was over a year ago, that battle was won! I'm out of danger of T-2 she is very pleased.
5. Reward yourself for small victory's!
6. Choose your battles wisely, one at a time, adjust your expectations, realize that you have limitations that are different than others But our limitations and how we deal with them make us who we are. Buy the way this was one of the hardest things for me to do - admit my new limitations and weaknesses....
7. Again not giving up! I still have a number of other autoimmune things to work on. One of them requires surgery which I'm still working to avoid. Because from my research it a 50/50 chance for improvement. That's not good enough for me. Mean while still working and searching for better answers and ways. Now the good part is I have a choice in my health care and a doctor who is supportive and respectful of my choices.
8. I don't know your location or physical abilities but if there is any way for you to just walk 20 minutes a day I think you will experience some benefits with just your outlook and thinking. At times I Have to Drag myself out out the door to do this. But when it is done, it's a small victory! We make progress step by step with little things.
9. Don't be too hard on your self - everyone else will be They are not living your life day by day. "So cut your self some slack, you are probably a kind, caring and gentle person". If not, you will be by going through these things,,,and making that choice,,,
10. If you have one or two people who truly understand you and what you are dealing with you have a great team on your side. Many, if not most have no idea what we have to deal with. Until a person is in the situation it can't be known.
11. Embrace your faith, never give up and keep sharing. You will never lose the battle.
I truly hope that in some small way, something of this will be helpful for you. I'm sure there are many of us that hear what you are saying and experienced what you are going through.
Sincerely!
Ranger
PS: I'm not always Mr. "positive". I have my moments of "Lord I'm weary..." That is healthy and needs to be expressed at times.
One other thing...writing is very hard and painful for me to see my mistakes. In the past I wrote a fair amount of stuff, but now the cognitive/memory issues makes writing difficult. I do what I can do and that is just the best I can do at any moment. Once I had someone point out my spelling errors...right...guess what? I know "that", but never had this problem before when writing or trying to compose intelligent sentences with correct tenses... Grieves me deeply because at times even my speech is affected.
Welcome 8ntawake!
Breaking Point is serious! Stop what ever you are doing now. Focus on work as it is needed for your well being and support of a Family if you have one. Next focus on family, not house chores etc… Just enjoy, relax, sleep etc.
When you are no longer at the breaking point reevaluate What you want in life and what you think you can do. Then cut that by a third and focus on it for the next 1 to 3 months. Then reevaluate.
I have a new normal that tends to change on a regular basis.
No my family, church, friends etc. do not understand. I pray they never do. If they understand that means they are going through it. I no longer work so do not have that stress.
For the most part and most of the time all of the above accept I am different. On my part the first couple of years after diagnosis was a blessing. I had a name for all of the strange things in my life since junior high. It has been 20 years since I was diagnosed but sometime I find I am at the breaking point or frustrated how new people in my life relate to me. When that happens it is time to slow down and reevaluate.
I have seen over and over again how God uses me so am able to thank him for this gift or be honored that he chose me to have this burden for his good.
Hello again 8ntawake. Aaahhh, the breaking point. My breaking point was when I couldn't stop crying and sleeping. My husband took me to the ER where they checked me out to see if I was on drugs. I wasn't. They determined I was suicidal, which I most CERTAINLY WAS NOT. All I wanted to do was sleep. My sleep was very disturbed with horrible nightmares and daymares which is why I was crying all the time. You know how REAL our dream lives are. One thing you don't want to do is be admitted to a psychiatric hospital. Reach out to a friend, doctor or therapist before this becomes your new nightmare. Take Ranger's advice about getting out of the house for a walk. Keep trying to manage the illness and when you can't --- go to sleep. Don't try to be perfect -- many of us narcoleptics have compensated for the illness for so long that we are not satisfied unless we show the world a "perfect person." Give yourself a break (again, Ranger's advice). Pray everyday. Meditation has helped me some as has yoga. God is love. Ask for his help. Ask your guardian angel for help. You don't say whether you are on any anti-depressants. That's another avenue to go down with your doctor. Good luck and keep us updated on your progress.
thank you so much. you are the first people i’ve talked to that have narcolepsy and understand. the dr is increasing provigil & adderal-he said the next step may be to stop working. prior the narcolepsy i was very healthy-active physically and in my church and had no problem working full time and taking care of my family & home. then came shingles attacking my imune system. lost my hearing in one ear-tinitus 24-7 even after two surgeries and tons if meds- then came arthritus-rsd-raynauds-when i thought it could get no worse-boom-narcolepsy. ive been on meds, trying all the combos. now they have quit working. im exhausted mentally/physically from trying to keep up. at home-work-be active in church. and feeling just as exhausted trying to not let people see im having to try so hard. worse thing-after work-i get home and i have nothing else in me to get anything done. the people around mw know about the narcolepsy-but its like they forget-all the time. im not an attention seeking person-but close friends & family- i keep having to remind them of my limitations. and my husband just keeps trying to fix me with"if u just slept more at night". i dont know anyone at all other than my dr to has or is familiar with narcolepsy. ive lost myself and im trying to find a way back. im not suicidal at all-but i just feel completely useless-and a constant disappointment. i honestly feel i am withering away. and the bad thing-ive been trying to reach out for help- support group- someone to relate. ive been on different websites and this is the first time ive actually been able to communicate with other people with the same disorder.
Hey 8ntawake,
From my experience doing too-much too-fast is a sure-fired way to make things worse, and it can often take weeks to bring things back afterwards.
What I've done and others in my situation (more-so with the Hemipeligic Migraine sufferers) is scale-back. Come to grips with the reality that you simply can't do "everything" you want to, and scale back your expectations of what you want to achieve accordingly.
For me, with Narcolepsy w/ Cataplexy, Hemipeligic Migraines, and bad allergies, the decision I had to make was to not work, and any freelance work took 2nd-priority to personal and family needs.
It might be a good idea to carve out an hour or two out of your schedule for sleep, make it a clear and firm rule at home, "I will be unavailable X:00 to Y:00. Don't disturb me unless it's an emergency" then close the door and get some needed rest.
My father was a lab manager for 30 years at a local hospital. After his 2nd heart-attack he made it clear he needed 30 minutes to destress, he'd turn his pager off, turn the ringer off the phone, shut and lock the door, and put on some relaxation tapes to destress. He made it clear with his employer and coworkers that he needed that time, and not to disturb him, and he did that for 10 years, lived 14 years after a widow-maker and a triple-bipass, in-part because he made his health a priority, and ensured that he did what he needed to do, others simply had to deal with it.
My father said the most important word in the English language to learn was "No". It might not sound "nice" but if friends, family, employers want you to do something, and it's not something *you* have to do, you can save yourself a lot of wasted time and energy by saying "no", which gives more time and energy to those things which are actually important.
Dan O.
Do not forget there is a lighter side to all of this. We all have had funny things happen because of our illness.
There is a pamphlet from the sleep foundation listing times you might fall asleep. Years ago I gave it to my pastor with underlines where it said " fall asleep durning boring lectures".
I have problems with micro sleeping, cataplexy, hypnagogic episodes and excessive daytime sleepiness. That is the makings of a lot of goofy stunts.
I have walked off a roof I was repairing. They said I grabbed the top of the ladder and just stepped out into air. I walked out a patio screen door turned around and walked through the screen. I kept driving a lawn tractor into an apple tree. The only tree in the yard.
I put thing away in the wrong places. I have put ice cream in the cabinet above the fridge and found it the next morning.
My favorite is when I was a sales manager for an insurance company and they really wanted this guy so had told him how good I was and why we would get along so well. I drove down to the big city to meet him and his wife for dinner. I fell asleep in the middle of the meal. The guy was so mad. He told the company if I was their top notch guy he would find a different career.
it is so good to communicate with others with narcalopsy!!! my dr suggested i stop working and file disability. it feels like the ultimate defeat-l would be 100% useless. i hate this.
Hi,
Thanks for pointing out the lighter side!
My funniest was falling asleep on a lady's shoulder in church. I apologized to her when I woke up. My friends sitting in back of me asked me what on earth was I doing -lol! I always lose things and have a running list of at least 2 I'm looking for...
Thanks again!
Ranger
PS: I found out quite late in life but it made my earlier life understandable...If I knew back then I could have told "her" no....I'm listening and care...I can't help passing out...
RiverRat15 said:
Do not forget there is a lighter side to all of this. We all have had funny things happen because of our illness.
There is a pamphlet from the sleep foundation listing times you might fall asleep. Years ago I gave it to my pastor with underlines where it said " fall asleep durning boring lectures".
I have problems with micro sleeping, cataplexy, hypnagogic episodes and excessive daytime sleepiness. That is the makings of a lot of goofy stunts.
I have walked off a roof I was repairing. They said I grabbed the top of the ladder and just stepped out into air. I walked out a patio screen door turned around and walked through the screen. I kept driving a lawn tractor into an apple tree. The only tree in the yard.
I put thing away in the wrong places. I have put ice cream in the cabinet above the fridge and found it the next morning.
My favorite is when I was a sales manager for an insurance company and they really wanted this guy so had told him how good I was and why we would get along so well. I drove down to the big city to meet him and his wife for dinner. I fell asleep in the middle of the meal. The guy was so mad. He told the company if I was their top notch guy he would find a different career.
Hello 8ntawake,
When you first find out you have this condition it is difficult. Please be kind to yourself, take a deep breath.
There are a lot of us here that fully understand.
There are good times and difficult times.
Recently, my driving is limited, but coming back from a visit I had to stop at a "gas and go" place. I was almost in tears because I desperately needed my food heated in a microwave (special diet re Celiac disease) and desperately needed to park and SLEEP (with my CPAP machine)....
I asked and spoke with the manager who said "I understand I have a disabled child", I'll heat your food and you can sleep in the corner of the parking lot. God Bless that lady for her understanding and kindness to me. That was a first time for me driving, needing to eat, needing to sleep.
But thank God I found someone who understood. AND at that same place I met the first and only person who also had narcolepsy (one of the young workers there has it). So, it was an appointment for a blessing. I had never met anyone in person with it before or since.
Take care,
Ranger
PS: I would suggest eating the healthiest food that you can...
8ntawake said:
it is so good to communicate with others with narcalopsy!!! my dr suggested i stop working and file disability. it feels like the ultimate defeat-l would be 100% useless. i hate this.
Thank you 8ntawake and all who have replied to this discussion. It has helped me - you put into words what I'm feeling. It is like everything in life is getting worse. I feel as if I should slow down but no one truly understands why. I still work because my doctor keeps saying "I think we can still get it under control with meds." Meanwhile my superiors at work ask if disability is a possibility because my work is suffering. (Nor including when I can't wake up in time or fall asleep/have catplexy at work.) I make plans and have to break them (or forget I am to go!) It is good to know others are going through this and give suggestions that has worked for them. I plan to try some. Thank you for being here.
Hello Bookworm,
I want to respond with more a little later (I'm in a meeting)
But anyone still working with narcolepsy or ANY OTHER disability needs to ASAP Document and Notify your Employer Requesting "reasonable accommodations!!!
Discrimination AND Harassment against a disabled person is against the ADA law!!!!
MY personal horror story later today- I didn't know the above and was unlawfully harassed off my job!!!
More Later,
Ranger
Bookworm59 said:
Thank you 8ntawake and all who have replied to this discussion. It has helped me - you put into words what I'm feeling. It is like everything in life is getting worse. I feel as if I should slow down but no one truly understands why. I still work because my doctor keeps saying "I think we can still get it under control with meds." Meanwhile my superiors at work ask if disability is a possibility because my work is suffering. (Nor including when I can't wake up in time or fall asleep/have catplexy at work.) I make plans and have to break them (or forget I am to go!) It is good to know others are going through this and give suggestions that has worked for them. I plan to try some. Thank you for being here.
Hi again,
This discussion has brought up so many things that I went through.
I know under ADA you can force your employer to make accommodations, but try to analyze the situation from your employer’s side and you family’s side.
When I had to go on disability I wanted to stay on the Job. My manager was willing to work with me. The people in my sales unit were willing to work with me. The office staff was willing to work with me.
The regional Vice President flew in and met with us. I laid out my working plan and he said no as of now you are on disability. Everyone was shocked. I was stunned. That was in 1991. I can now say it was the best thing that happened to me.
That first year was extremely tough the narcolepsy was exacerbating my Combat PTSD. I ended up in the nightmare got worse, hallucination were constant and the flashbacks were extreme. I ended up in the psychiatric ward three times that year and one 12 week stint in a psychiatric ward treatment program. The major benefit was I was not letting anyone down and could focus on the changes happening in my life.
I was fortunate to have a fantastic wife supporting me and we have no children so that was not a burden. YES!!! Like you I cried a lot.
But today life is good with our ability to flow with the daily changes.
Hello RiverRat,
Thank you for your account and that you made it in the end and can see the bright side of life!!!
I worked for one of the "Big Ten" Universities. I had many health issues going on besides narcolepsy (I didn't even realize the extent of them). Trying as hard as I could to manage my responsibilities while very ill. I had an excellent, well trained staff, so in spite of my health issues my operation was running like clock work causing jealousy among my other management coworkers...
Over a two day period, I was threatened with 2 pages of false accusations about my work and told: 1. Your job is in danger, 2. You need to go out on FMLA, 3. Or this will be disciplinary. That harassment caused a total over load of anxiety on top of everything else I was dealing with. I had to go out ASAP on FMLA leave. I contacted the "office of discrimination". Who would not even talk about accommodations unless I was "well" and ready to come back to work". Burned up all of my sick and vacation time, personal asset's, 35 day from homelessness. Got the you are depressed nonsense from 6-7 doctors - told them no I'm not depressed, it's something else. Ordered my own lab tests, which started to unravel everything I was dealing with.
Had to go to an out of state well known University Medical Center to start to unravel the various diseases and finally found 3 very good doctors.
What the University did to me was clearly illegal under ADA law. Met with 3 lawyers in this town - none would help me because the University "owns" most every lawyer here... The most disturbing thing is during this year long process I met many other older disabled people who had the same thing done to them - Many, too many people that worked at the same University that I did.
I was so weak I had to focus on just surviving. I thought that I had faced difficulties in life before but they were a "cake walk" compared to the nightmare I was living.
Some of you know that a local church which I didn't attend - heard I was 35 days from being homeless contacted me and told me we are not going to let that happen. They stood by from that point to finally when my "LTD" started (a month and a half late because the "local doctors were not turning in medical tests on time"...) Still I didn't know everything I was dealing with. One difficult night sitting in my truck thinking...No, I will fight on and not give up, the fight may do me in, but I'm not quitting on myself.
It was the worst year of my life. Adjusting now to my "forced" disability retirement. I'm still pretty touched off about the way I was treated.
But I found out what is really important in life, how to live it and love it, and do the best that I can at any one moment, be kinder and more loving towards everyone disabled or not. And lastly, I Thank GOD that I mad it and out of the worst job and company I ever worked for.
So in the end this is the best thing that could of happened to me! There are blessings in all of this...we just need to seek and see them. It will take time but it will become clearer. Never give up :)
Ranger
RiverRat15 said:
Hi again,
This discussion has brought up so many things that I went through.
I know under ADA you can force your employer to make accommodations, but try to analyze the situation from your employer's side and you family's side.
When I had to go on disability I wanted to stay on the Job. My manager was willing to work with me. The people in my sales unit were willing to work with me. The office staff was willing to work with me.
The regional Vice President flew in and met with us. I laid out my working plan and he said no as of now you are on disability. Everyone was shocked. I was stunned. That was in 1991. I can now say it was the best thing that happened to me.
That first year was extremely tough the narcolepsy was exacerbating my Combat PTSD. I ended up in the nightmare got worse, hallucination were constant and the flashbacks were extreme. I ended up in the psychiatric ward three times that year and one 12 week stint in a psychiatric ward treatment program. The major benefit was I was not letting anyone down and could focus on the changes happening in my life.
I was fortunate to have a fantastic wife supporting me and we have no children so that was not a burden. YES!!! Like you I cried a lot.
But today life is good with our ability to flow with the daily changes.
Hi Ranger,
Thanks for sharing. I am glad you also came out the other side.