Feeling A Little Lost In Life

[janiedelite]

So I was messing around on Facebook this morning and I found a photo of some of my old co-workers that was taken in the nursing unit where I'd be working still if it wasn't for POTS. I couldn't stop looking at the picture, wondering why this was taken away from me. Now, my job wasn't perfect, but it really gave me a sense of purpose. Sometimes I just feel so lost. I really loved being a nurse.

I have occasional days (like this past Monday) where I have energy and I start thinking..."maybe I could go back to work?" Then there are days like the past 2 days when I can't imagine doing much of anything. I started helping at my husband's school for a few hours a week, and I'm thankful for those days when I have the energy to get out of the house. But most of the time it seems my POTS symptoms override my ability to accomplish much.

I know some folks here have decided not to have children because of their dysautonomia, but my doctors said it would be alright for me to get pregnant. So we've been trying for over a year and have been doing infertility treatments the past 4 months. This is the last month we'll be trying. I already have an appointment in a couple weeks with my neuro and GI doc to start motility meds and mestinon, which I couldn't have taken while trying to conceive. And like all my other testing, the infertility tests show nothing is wrong with either of us. Just unexplained infertility.

I think some big dreams are ending. I think I'm probably PMS-ing too, which explains my dark mood today. Lovely.

I'm only 36. I've been disabled for 2 and 1/2 years. What will the rest of my life look like? It's too depressing for me to think about it. So I'm trying to watch TV on the computer as it's what I have energy for today and maybe it will distract me.

Thanks for reading. I'm sure I'll have a brighter attitude someday soon. In the meantime, I know you guys understand.

[kayjay]

Thankful, I think a lot of us feel the way that you do. Reading your post makes me wonder if someday you will be all better. I know the neuro at Mayo told me that my prognosis was not good b/c i got POTS while pregnant and have had it for 11 years.

I want you to keep hope that your body can heal. I am sure that many people that used to be on this site disappear... because they get well.

I do want to tell you that I was really sick in my 20's and got better from about 30-to 34 ( I am also 36). I was able to work. Don't let that all or nothing think get you down. 2 weeks ago I gave away all of my teaching things b/c every time I looked at the stacks of bins I would cry. If I can ever teach again... well I am not thinking about that now. I might take up a hobby!

Please remind yourself how important you are just because you are you!

I was complaining to my mother about how useless and dependent I am.. she asked me do you love other people.... do you pray for them? It helped me realize that I can focus outside myself.

Please know that about every other day- I feel so sorry for myself. I had a big storm or flare the other night- just sitting at the table and I had panic, migraine, nausea, ( felt like I hated my husband- he was being noisy- and wanted my mother - again I am 36!).

I also feel guilty for my self pity- thinking well I don't have AIDS, of ALS or terminal cancer.... but realizing that others are worse off does nothing to make our suffering less.

I will be praying for you (which after what I told you might be a bit self-serving ). Wouldn't it be great if having a baby was like a cure for you... stranger things have happened- don't give up on that dream yet.. you are still young...

sent with love - kari

PS your JOB now is to take care of yourself- you did not choose this job- and it is not your fault. God just knows you can handle it- Aren' t you lucky !!!

[sarahmarie43]

I had one of those days yesterday, too. It's really hard. I just started taking Midodrine a few weeks ago and I think I got my hopes up too high that it was going to make me feel at least noticeably better, but I am still just so tired. There are no EDS or POTS doctors in my area (that I know of) and the only CFS specialists I can find are super expensive and don't take my insurance, and since I'm not working right now, I really can't afford much. I just felt like giving up. But what choice do I have?

I feel a little better today (emotionally). Not for any particular reason, but I guess yesterday was just a down day and today isn't.

I'm so sorry you are feeling the way you are- missing work, wondering if you will have children, wondering what the rest of your life will be like and if you will ever feel better... I know exactly how you feel. It's weird to be "sick". I hope it helps to know that you are not alone, and here's a long-distance *HUG*

[anna]

Hello thankfull,

Sorry you are where you are at the moment I hope you find a way to feel better soon.

Re; getting pregnant you might take hope from the situation a very good friend of mine was in some years back! My friends very much wanted to have a child, they tried to no avail for a couple of years, then realised they needed some form of intervention. They consulted with the UK's (world famous) fertility expert, had many tests all to be told that he would not be able to help them as it was very unlikely they would ever get pregnant and he could not ruin his excellent track record!!!! Well poor friends were very upset but decided to try IVF any way, they had a number of tries but they did not manage to conceive, Mary's body just kept rejecting the embryos a very sad situation. After much heart ache they decided to just get on with life, Mary had suffered chronic pain and fatigue since being a teenager this was put down to many things from ME to Fibro, but she mustered up enough energy to go back to work part time. Then a little less than a year went by and Mary became pregnant she gave Birth on Christmas day to a beautiful little baby girl. We all thought it must have been a real little miracle.

I wish you well, take care.

Anna

[janiedelite]

Thank you so much Kari. Thanks for letting me know it's okay to feel sad sometimes. If this last fertility treatment isn't successful (only 12% chance of success), I will start birth control again this weekend so I can start mestinon in a couple weeks. We won't be trying again for children after this cycle. Mayo did tell me that my body might start healing itself someday. It's hard to hope for healing, though. It's just easier for me to try to accept my current limitations as hoping for something better seems to take too much energy. My mom's been sick since she was my age, but with carcinoid syndrome. She also has small fiber neuropathy (unknown cause) and would have OI except for the high dose octreotide she's on.

Sometimes, on the days I feel better, I wonder if my POTS is improving. But really, I think I've just learned how to manage the symptoms more effectively.

Thank you for praying for me. It's so hard to see how I could have a positive impact on this world while coping with POTS, but I know that God is with me every day and that He is the author of my hope. Geez, just writing this brings out the tears again... what a day.

Thank you again for your sweet words, Janie

Sarahaz, thanks so much for the HUG!

And Anna, thank you for the encouragement. I should have mentioned it in my first post, but I'll have to start birthcontrol soon in order to take the mestinon or other meds to treat my neuropathy pain. My hope is that if I can manage my symptoms better with meds, maybe it will make us a better candidate as adoptive parents.

[MelissaCrystal]

I unexpected got a little better this year, but life is still a huge struggle and I feel too, that I've lost all my dreams and ambitions. My life revolves around just getting by now, and just finding something that makes me a little happy. I haven't been successful yet, and I get down a lot...I kind of know I'm going to have a hard life, but if I can find someone to love and have some kind of career that I feel good about, I think things will be okay. Even if I have to go on disability due to relapse, I'll still use all my energy to search for happiness. I just have to find what makes me happy first---right now it seems like nothing but a guy (which is sooo dependent) but I'm just going to roll with whatever pleases me if I find it. No more shooting high for me, because I keep overworking myself. But getting through each day is enough for me right now. I'm 23, it's pretty depressing to feel this way at such a young age, but I was so much worse a year ago so I just have to keep telling myself that things will get better, and even if they get worse, I may still be able to reach happiness somehow if I don't give up.

[bellajulz]

This post as do most of em' do , really hit home with me also. I just received a letter yesterday advising of my having to resign from my job due to my health. It was really sad for me, all this year my goal was to get well enough to get back to work and now I have no "work" to get back to. I am not sure what lays ahead for any of us, but I do believe that all things happen for a reason though we don't always understand. I pray that you will have success in getting pregnant, but if not I am sure that something will come before you and raise your spirits.

What works for me is to do my best in staying strong and I guess I have convinced myself that this is a temporary illness for me, so even if it isn't, denial helps to get me through each day even when I feel I may not be able to ...

[janiedelite]

This post as do most of em' do , really hit home with me also. I just received a letter yesterday advising of my having to resign from my job due to my health. It was really sad for me, all this year my goal was to get well enough to get back to work and now I have no "work" to get back to.

I'm so sorry about the letter you received, that your health is keeping you from your work also. I got some similar news this past July when the Oregon State Board of Nursing refused to renew my license until my condition improves. It became more real that I was actually sick. I don't see anything wrong with a little healthy denial now and then, though!

Melissa, you put into words so well what each of us is searching for... a sense of happiness that gives us a reason for waking up each day. Thank you for being so honest. It was very touching.

Okay, the crying has stopped now. You guys are my best medicine

[MomtoGiuliana]

So sorry about your dark mood and the feelings of loss. It can be overwhelming at times. I also have started having problems with I guess it's depression with PMS. It's hard enough to manage a medical condition and then to have a dark mood imposed on you hormonally is tough.

POTS takes so many different twists and turns and each person is different. Supposedly most people improve with time. My specialist told me the average time of disability is 4 years. I have no idea where that came from, maybe his experience.

I was very sick (came on as with kayjay) during pregnancy. I was quite sick for about a year, and then slowly improved. Eventually I was able to go back to work and most days am pretty well with minimal medical treatment. There are a lot of people who were on the DINET site for awhile and then got better and left. There is reason to hope, very much so.

Let us know how you are doing.

[erik]

I can relate... although I'm generally numb to it, I'll get overwhelmed by a rush of longing & sadness from various triggers. Sometimes it is when I see certain "scenes" (people doing certain things), pictures or perhaps music. Oddly, I'll get a deep longing for things that never happened... like a false nostalgia. Basically mourning lost possibilities. Some of this is POTS-limitation related and some is from other stuff.

I tend to get on the numb side of things, which it seems can logjam other experience... meaning for me, some cautious embrace of the sad has opened other possibilities in feeling. With some luck, a phase of sadness can be the beginning of better things.

And I happen to be watching TV on the computer too

[Maxine]

Thankful---------sending you a BIG HUG.

This does make you feel so lost sometimes. I can partially relate to how awful it must be thinking you might not be able to conceive a child. I Do have a son who is 28 years old now, but my second husband and I tried to conceive, but we never did, and we quit trying when I was 41. Oddly just after that I got really sick and crashed with my POTS. I had it mildly before, and was not diagnosed yet. I'm grateful for my beautiful granddaughters----I love them so much, and along with my son and his wife they bring so much joy.

The PMS is rough too. I don't know what I have right now, as I have missed my period for 3 months now---(not pregnant---and age 50), so I'm guessing menopause----- .

Be kind to yourself---------------spoil yourself doing things you enjoy. Light some candles and set them all around and read a favorite book, or watch a feel good movie. I miss work too, and wish I could be back in the swing of things.

I miss Dancing, and I can't watch any of the dancing shows because it breaks my heart too much because I can't get up and dance. I used to be a good dancer.

This illness steals things from us-------so we have to find other ways to bring joy back into our lives.

Sometimes it can feel like your spirit has been broken too. Keep fighting for your spirit----don't let this break you.

My son wrote this poem for me when I first got sick;

Dime Store of Hopes and Dreams

Wandering in the shadows, alone and distraught

The unquestionable strength of a few, ignored by the masses

So crass, so un-empathetic, no one understands

It feels like no one ever will, all your zeal spent

At the dime-store of hopes and dreams

In the middle of the night Spouse, mother, brother sister

Awoken by screams entailing those dreams unfulfilled

No one to turn to, a wasteland of unawareness

The futile fruits of passionless practitioner?s labor

Makes backwards strides in the context of you, hurt

At the dime store of hopes and dreams

Doctors look at full shelves of needs and wants

For compassion, and healing energies

Boxes of broken homes, and broken hearts

Not even acknowledged by so-called care-givers

Not a care in the world to give

I am the son of a wanderer in the shadows

I too do not fully understand the extent of all this

But I have bore witness to the pain, and the strength

In no way can I put myself in your place, or say I ?understand?

But I can say this: the war on ignorance is a war of attrition

In the dime store of hopes and dreams, you have found

Your token of pride, your undying will to survive

Mike J. Dessert

It made me cry when I first read it------this is how he saw it through his eyes. I never knew how deeply he felt about my illness, and seeing me suffer.

[MelissaCrystal]

That poem must make you feel so loved and understood =( That's so touching. My mom is the only person who understands what I'm going through in my life.

We're definitely all in this together, trying to piece together a life we can enjoy in some way! We're all looking for happiness, pleasure, contentment. It's harder for us Dysautonomia people, but we value life much more than others, and I'm somewhat grateful for that. I see beauty in living that others do not. But I also see much more misery in our existence than I think I should. But we all have to keep living and seeking out something that makes this all worth it =) Because it is worth it. May not seem like it right now, but it will all be worth it.

[tinkerbella]

thankful,

I wanted to cry when I read what you read, as it hits home to me. I think you are hit with a double whammy right now of the down in the dumps of depression of not getting pregnant and dealing with pots. I also wasn't able to have kids for 6 years after having an ectopic pregnancy that almost took my life also. They think I also had pots all along so I was double depressed. Just dealing with the stress of tring to have a baby is depressing, then add a limited time frame only makes it even more stressful and knowing you have pots makes it like you want to stay in bed and pull the covers over your head all day.

I hated people who kept asking me when were we going to have a baby? I hated pregnant woman, baby departments of stores, I thought people should have been more sensitive to what I had gone through. I had my ectopic around Christmas time and even the cleaning person asked me what did I have for a baby and I kept hearing all the babies crying on the floor. I went home on Christmas day and cried every year after, till finally I was prayed over and surgical interventions were tried over and over. I finally had 3 babies very close together and the last one came just after midnight having been in labor on Christmas day.

I got my GIFTS, Blessings from each and every one. My life has been richer with them, I cherished them so much more in my mind because of how hard I had to work for them. I taught them and they taught me things I would have never believed. I only regret that my marriage didn't withstand my illness for my children's sake. But, the GIFTS of my precious grand babies are the wind beneath my wings right now. One day I hope to find the real deal as my little 5 year old puts it. I Love every moment with my family.

Today someone bought me a bunch of sunflowers as I was about to leave the hospital and someone else bought me a new day planner as they noticed my tiny little book that I write in is so full. The flowers are right beside my bed giving me so much joy and it's reminds me that I read somewhere that we should treat ourselves to a bouquet of fresh flowers a week. All summer long I gave away bouquets to everyone from my garden, It felt so nice getting these today. Actually this is my 3rd bouquet this past 6 months. I never got flowers before from people. I always convinced others I wasn't worth the money the flowers cost, now I know I am!

Anyway, on all those occasions they lifted my spirits, I always take photos of them and make cards out of them to remember them by.

Thankful, you are such a sweet and kind person here on the forum always helping others.

I often think we have to feel a little lost in life to find out who we really are and what direction we need to go.

It is then when I do my best writing, soul searching and touch deep feelings I have hidden deep in my heart.

Once released, I feel much better and know where my body compass is headed.

I hope and pray you feel better soon. I think by now you can see that we've all felt a bit lost from time to time,

but we are all here for each other to catch one another if we happen to fall.

Blessings and Love,

Bellamia~

[Mrs. Burschman]

(((Thankful)))

This is probably a dumb suggestion, but would there be any opportunities for you in phone nursing, for lack of a better term? I know that many hospitals have "Ask a Nurse" lines that are staffed by nurses. I've found them to be really valuable. Last week, I made an appointment at Georgetown Hospital, and they have a phone line where nurses help patients find the right doctor for their condition and make appointments. It seems like the type of work that could possibly be done from home, if you found the right employer (and the State Nursing Board agreed.)

Alternatively, I wonder if there would be a similar opportunity in a volunteer position with a group such as the American Cancer Society or a local helpline. Obviously, it wouldn't provide a paycheck, but you would definitely feel like you were making a difference. A friendly voice on the other end of the phone line is such a blessing!

I have no advice to offer on the children question, besides this: It's a loss for you. Don't beat yourself up over grieving. It's only natural that you would feel pain in your disappointment.

Your involvement in this forum makes a difference. You are a treasure to each and everyone here.

Amy (Mrs. Burschman)

[janiedelite]

Maxine, Thank you for sharing that beautiful poem from your son. I think it's often harder on those who love us and have to watch us suffer. They really have no control and desire so deeply to help us. He worded this pain so eloquently. I'll have to save that poem.

Bella Mia,

"I often think we have to feel a little lost in life to find out who we really are and what direction we need to go." How perfectly said. Thank you so much.

Hi Amy, Not a dumb question at all! Unfortunately, I don't have a nursing license anymore, until my doctor says my symptoms improve. So no nursing at all. And oddly the act of talking seems to make me feel quite ill. I can walk pretty far at times, but no talking! My hubby says he actually misses my chatter - can you imagine a man saying that?!

You all are WONDERFUL!!!!! You've started me crying again, but in a good way! Hugs back to everyone.

[janiedelite]

MomtoG, thanks for sharing how you improved. I would love to say I'm in remission someday. Wouldn't that be wonderful?! It's hard to hope for, though, so mostly I try to get through each day.

Thank God for online TV! I don't know how I'd occupy myself when I'm too tired to do anything else.

Erik, thanks for sharing your experience. I do agree that we have to walk through the sadness (not STAY in it) in order to fully experience joy. I can certainly relate to trying to numb things, though. It seems like it sometimes takes more energy than my body has to feel the sadness. Today I couldn't stop what I was feeling.

[erikainorlando]

Hi Thankful...

I thought I would never have kids myself. I had 3 miscarraiges...terrible pain. Thought I wouldn't get thru it..but I have 2 kids...wonderful kids who keep me going. I thought I would never wlk again after a very severe bout of Guillain Barre. I walk and even snow ski'd 2 years ago. I thought I would recently when my boyfriend told me he was going to Utah and didn't know what he was doing when he gets back in March...I feel abandoned sick and rejected. I replay the relationship etc,, and my failings..I am full of fear over my health and being alone...BUT I remember that life is long and sometimes we just have to hang in there...love pray forgive and remember they told me I'd die in 2001...but I am still here complaining about another difficulty.

We don't know what is around the corner..I am sending you lots of love.

Erika

[coloredblood]

Yesterday was like this for me too. i've been sick for a year and some change too. I'm angry, i'm hurt. and I hear you! I haven't tried to get pregnat yet but it's a life dream for me. I also can't work. I am so mad that I feel lost and like i'm just kinda hear dealing with my daily problems. All I know is. You aren't alone. I'm not alone. and we can get through this together. we have gotten this far, eh?

~nancy

[potsgirl]

The others have done such a great job of encouraging you and giving you support that I'm afraid I don't have anything new to offer, except that I've been down some of the same roads you're new traveling, and have felt pain and loss also. I would give anything to go back to my work, which I loved, and I really wanted a second baby, but was too sick to try to conceive. There are so many losses we deal with, but in turn there are so many valuable lessons we learn.

It's healthy to grieve for things we no longer have or perhaps never will, as long as it's balanced by strong hope and a positive feeling toward the future. Here's hoping that you're out of your slump and feeling much better soon. Spend some time taking care of just 'you'.

Cheers,

Jana

[janiedelite]

I'm doing better today... but it was finally time to take a pregnancy test to see if this cycle of infertility treatments worked. Nope! I'm sad, but I really feel okay about things otherwise. My hubby and I had set aside some money to go out to dinner tonight, knowing that we'd probably get the bad news today. We've dubbed today "Black Thursday." We might as well go treat ourselves!

I'll be starting birth control this weekend so that I can get on mestinon and lyrica by the end of the month.

We are also investigating adoption further.

Erika, you've said it so well. We don't know what life has in store for us. Thanks Jana and Nancy, for your support too.

So here's to keeping on pushing toward our dreams, even if it seems we're pushing against a brick wall sometimes!

[iheartcats]

I'm glad you are feeling better today. I feel so sad sometimes, too, thinking how things should have been - but I remind myself there's nothing I can do about it. You have to deal with what's given to you rather than how you wanted things to turn out. It's been a harsh lesson for me as I took things for granted. It can be very difficult to deal with sometimes.

I hope Mestinon and Lyrica help you. I'm on 30mg/Mestinon twice a day. I tried 60mg/twice a day and think it worked almost the same, but with too much stomach issues. 180mg/timed release was way overwhelming. I had the overdose symptoms. But I like the 30mg/twice a day. I think it helps a little, not a huge amount, but a little. The first week...I don't know how to say this delicately. I had to poo. A lot. and like NOW. Then it stabilized. Let us know how these meds work for you!

I'm not off my meds yet...and don't know when I ever will be...but I think my meds have me to the point where I'd like to work. I figure I can try a full-time and keep looking for part-time - I tell myself I'll try as much as I can. What's the worst thing that could happen? I'd have to quit, right, and hopefully find a part-time job? The world wouldn't end. Maybe your meds will help too, and open up more options. Without mine I'm not very functional. I'm about 50% better with my meds. And about 10-20% better with hydration/salt/diet.

Sometimes it feels like we have to find this perfect storm of what works for us. Not the easiest way to live life, but we have to live and do what we can for ourselves.

[janiedelite]

Maybe your meds will help too, and open up more options. Without mine I'm not very functional. I'm about 50% better with my meds.

That's what we're hoping for! Thanks!

[mountain girl]

Dear Thankful, {and everyone else who responded} I am sorry you were/are feeling so down, and glad some of the others here can cheer you up a bit with our stories and total understanding. My husband and two grown daughters really seem to understand the illness, but I don't think anyone can understand it like those of us that have it and live with it every day. I also am a nurse, and stepped down from my position to work as an aide in an assisted living where I had been working as a nurse, It is less stressful, and while I am glad to have somewhere to go and feel productive, I do not find I enjoy it like before because it is hard to work when you do not feel well. I was comforted by the fact that so many others feel as I do, lost as you put it , at times. I was never much of a t.v or computer person before, but now that is what I do because other than working, I have no energy to do more. For you it does seem to be a double whammy because you want children so bad. I hope and pray that you and your husband will be blessed with a child or that your health will improve enough for adoption. I had a friend who took in two beautiful girls from the foster care system and ended up adopting them, now that I think about it I had two different friends who did that. One had the children as very young kids that were still in diapers and the other friend had the children when they were in grade school, so I would think there may be opportunities for you there if you do not conceive. I do not remember how long you said you have been dealing with the pots and being off work but I am thinking you said about a year. I have been dealing with it just a little over a year, and I think it takes time to adjust and come to terms with everything.I think volunteering at the school sounds like a great idea and I am glad you have that. Another thought on your nursing, if you were able, private duty nursing might be something you could do with a home health agency or volunteer to stay with someone through your local hospice program. Often times volunteer work can lead to a job, even if you are not working as a nurse you can work as a sitter in my state without being licensed,because you don't do any clinical skill type duties. Just a thought. Also, I think part of the reason I can still work, is my place of employment has been very accomodating. I work shorter shifts and not too many days in a row. Reading other replies to your topic was encouraging to me as well. I accept the good minutes, hours or days,however they come but I still find it so disappointing when it does not last. You would think I would get used to it! As for the denial thing, yes I do that sometimes too, just what ever I can to get through each day. For what it's worth, I think I am somewhat better than I was a year ago when my symptoms first started and before my diagnosis. I did have a relapse this past April but felt I knew a little more about listening to my body and not pushing it too much after. It seems to me there is a fine line between pushing ourselves to do what we can each day, but not overdoing. I am glad you made a post on this topic of acknowledging how we all feel sometimes.Hugs and blessings to you.

[MomtoGiuliana]

Thanks for sharing. So sorry about your disappointment. Very hard.

I also hope that the meds will open new doors for you. And yes, we never know where life may lead us.

[tinkerbella]

THANKFUL,

Thanks for the update I'll say another prayer for you and your hubby. There's a new Harvest Moon coming up on the 14th a good time to start new things.. I wish all the time that I could make others happy and take away their sadness. I hope for tonight you and your hubby can have a really nice night out together. Many don't have someone to even just hug them. We all need HUGS. May we hear good news one day from you. Keep us posted.

I just wanted to tell you I had a terrible time on lyrica. It made me fall down like a drunk. the neuro I was seeing was mad that I would not take it. So I left him. this was before I knew I had pots. he at least found I had perpherial neurapathy, which got the ball rolling. Same type of effects with neuontin also. I'm sure you have checked it all out, but I just wanted to mention it in case anyone else was thinking of it also. I can't find the link I was on this morning but there's a link to fibro and eds from taking lyrica and it was warning people about it.If I find it I'll post it. I know we all react differently but this sounded like something new.

take care sweetheart~

xxx's

bellamia~