Bad Days

[EarthMother]

No matter how long, I've had this I still can't seem to gracefully accept the "bad days". And perhaps it wouldn't be so bad as long as they came with some kind of disclaimer like:

"This is a test. This is only a test. For the next 24 hours you will be unable to stand reliably, go to the grocery store, cook dinner for your family, or in any other way function as a normal productive member of society. However, by tomorrow you will feel a bit better and resume your limited capacity functions. Thank you this concludes the test of the POTS emergency channel."

The thing is, I never know how long the down period will last. I never know how far down I'll go until I've hit bottom. The uncertainty, the unpredictability, the groundlessness of it all can be unbearable.

Today was a bad day. My husband and I tried to get out for a bit to do some quick grocery shopping. Two aisles later I was asking for the keys to the car with tears in my eyes. As I walked slowly to our parked car, I saw an elderly couple (maybe 70+ years old) gracefully putting the bags of food into the back of their car. It seemed effortless. I sunk into the passenger seat and just wept. How can I be middle aged and unable to do simple things. What on earth will happen to me by the time I am in my senior years? Or do any of us ever reach "old age"?

It was a hard day. And not knowing if this is the beginning of a really bad spell, or just another blip in the POTS adventure is perhaps the hardest part of all.

Thanks for letting me share the potholes on the path. I know many of you understand these feelings.

EM

[MightyMouse]

EM, some days it can be really overwhelming and feel pretty unfair. Glad you felt you could share that here.

On days when it's really hard, I'm happy to have lots of support here at home...and also with friends I can call or email.

I know that some folks really get a great deal of help with coping from seeing a counsellor, particularly, one who focuses on long term illness.

Nina

[geneva]

EM, you expressed it so well...it does seem we are continually tested and I loved the broadcast warning analogy! Like you I wonder at the beginning of a bad spell, will this be like the other times and I will get back to pots-normal in a few days or is it a sign I am declining further. I think this is normal and no matter how long we live with this illness, I think that we will never get used to it the cycle.

Also, always remember that you contribute so much to others on this site. So what if you can't go grocery shopping today, you can and do help others of us here everyday. I am now a fan of aloe vera-papaya juice thanks to you! I wish I could think of something to help you now to reciprocate but the best I can do is to say I understand and I hope that you will feel better soon.

[ethansmom]

If only we knew when the bad spells would end, once they've begun It's so hard to predict, and I do find that when I've been feeling really good, and then a bad spell hits, its a crushing realization, once again, that I am NOT normal. Recently I had a bad spell that lasted about two weeks- the longest since I first got sick and was bedridden. I could barely crawl into the shower, couldn't drive any farther than the mailbox, and needed to sleep all day. It was awful. But you know what? It ended. Yesterday it was 65 degrees outside, and after I cleaned my house, threw dinner in the crockpot WHILE cooking french toast for my family's breakfast, and studied for my exam, Ethan and I went out to play for the afternoon. Then we came in, helped Daddy paint the basement, took baths, and snuggled into bed smiling. It was a perfect day, and it reminded me WHY I get through the tough times- because there are always better days ahead. And I use them to be with my family, so that they don't always have to suffer with me Not saying that I felt perfect all day, but I'll take what I get.

I have learned to ask for help when I need it- it can be a chore to get my hubby to do the grocery shopping, but we have an agreement now, he goes once every two weeks for me, and I do a quick trip in between to pick up milk and bread. I do the things like bills, housework, cooking, etc...and he does the physically tough stuff- and when he's not available, I have a wonderful support network of neighbors, friends, and backup babysitters that I use to help out with Ethan when I'm down and out. It's been two years and I still find myself having to come up with new ways to modify my lifestyle for POTS, but the more changes I make to accomodate it, the better I feel. And I am definitely no stranger to running to the car in the middle of a grocery trip! Two weeks ago I ran out of Wal-Mart sobbing and left a FULL cart of groceries with the cashier and my mom came back and picked them up for me later- that was the beginning of the tough spell. Just know that it WILL end, and try to do everything that you can to feel better until then. Get plenty of rest, sunshine, and fluids- and watch funny movies, or read a good book and wait patiently for the good days ahead. We all have our little "tricks" that we use for a boost- use what works for you and don't give up. I hope you feel better soon!!

[Guest tearose]

Dear EM, I wish you well soon. I wish I could say the right words to make it all seem okay. I don't know how to help you figure it all out cause it sure is a puzzle to me! I think I'm in the pothole about ten inches away from you! How are your tunneling skills? Please know as you have been there for others we are here for you. I am sending you good thoughts and healing energy. Sometimes when I'm in the potshole I decorate it and try to enjoy the deep darkness. Sometimes I climb up out, sometimes I just look out and watch all the world spin by and sometimes I ask someone to reach down and pull me out. I wish for you all that you need to endure and to soon get out of your current position. I send you my love. tearose

[Jackie]

I too absolutely loved your analogy of the POTS emergency channel. See, you have your sense of humor and that helps a tremendous amount and says much about you!

I can totally relate to how you feel. I often feel like I have more in common with my 70-year-old mother and my husband's 90-year-old grandmother than I do anybody my age (37). It tends to make a person sad and I have my days lately where I cry too because I'm afraid and I'm tired of dealing with it. I have been doing much better lately and now I'm in the 7-day count down to menstruation and my energy and mood have dropped again. Of course, it doesn't help to be sick with a sinus infection and on antibiotics too, but still...the old doubts creep back.

I think I'm still in the struggle and cycle of acceptance myself. There are stages of acceptance like everybody knows of grief, mourning, anger, refusal to accept it, then sadness, acceptance, and back again....that's me.

If I learned ANYTHING from being put through the mill of pyschological treatment during my ordeal, it is this and only this..."the bad day care plan"....get up and at least wash your face, brush your teeth, and comb your hair. Don't dwell on the negative, think positive, and call a friend or do something to take your mind off it. Of course for many this sounds much easier than it is, but I do find if I have a good cry and listen to uplifting music or share my doubts and fears with my sister or somebody the gloom does past.

Remember this, you have had good days and will continue to have good days...they will come again. Take advantage of the bad ones to rest and do not get discouraged and do not beat yourself up.

I know this is going off into a religious area, but still here I go....I think comparing ourselves to others is the worst thing we can do to ourselves. There will always be somebody else more attractive, somebody else with more energy, somebody more healthy and vibrant, etc. I too have been envious of the energy I see in other people. Think on this though, you are who you are for a reason. With all your strengths and your weakness, there is only one you...nobody like you. That makes you special! And you certainly are special here on this board because your posts have certainly been a blessing to me!

[dizzy]

Dear EarthMother, I hope you feel better soon. I enjoy reading your post very much. Your post are always full of inspiration for everyone. I love the emergency POTS test - that made my day. Please know that even on your bad day you still lift up our spirits. Thinking of you and wishing you better days ahead!

[denabob]

I agree with Jackie except I do compare myself with others I just pick others who have alot worse illnesses to deal with! I know when we are sick it doesnt feel like it could be worse but at least we do get better again. It is chronic and never ending but not life threatening( as long as we dont get hurt in the fall ) we are not completely wheel chair bound or have other way more difficult things to deal with! i am fortunate that I can almost pinpoint my bad week because it's the week before I can get my octreotide shot ,I take short acting shots 3 a day and proamitine around the clock that week to keep from losing conciousness. I'm hoping this one wont be as bad ( of course ) but I figured out I was being an idiot. The week before my med runs out is my period ( good timing huh?) I have always had very painful periods and have been taking tylenol for women during this time .well needless to say I figured out that it has a diuretic in it and we all know what a no no that is!!!! This time I wont be taking it and hope it will make a difference! I think we should have a plaque made with the emergency test saying on it to keep our spirits when we are down, I really enjoyed that!

[Michelle Sawicki]

I know what you mean, EM. When I am feeling bad it is the not knowing when/if I will feel better that is the worst part of it all. Fortunately the better days always do seem to come back for me. I pray they will also come back for you. You are a great imspiration here at the forum and I hope you feel better soon.

Michelle

[hilfgirl33]

I agree with wishing you knew when it was going to end.

Just want to add that I wish my family could know when I'm having a bad day, too. It seems like when I have a long string of doing well, it seems like they forget (more so than me) that I really have to watch not to overdo it. Like my husband is talking about taking trips to NYC and Washington D.C., both this spring, with me. He's like, just sit on a bench if you are not feeling well. Sometimes he forgets the whole dynamic of the illness. I mean, me not feeling well at home is a whole lot different than me not feeling well 300 miles from home in the middle of a crowded city....

[MomtoGiuliana]

EM

I had a bad day yesterday that is continuing into today--very POT-sy. No idea why. Everytime I stand up I have to stand slowly or I WILL faint. My chest feels heavy, my heart rate is up, I feel off-balance. Reading your post reminded me, yet again, that I am not in this alone--like it used to feel. I understand and share your frustration when you see others moving so effortlessly through life. Like last night I was talking on the phone to a friend with a toddler the same age as mine and she's now expecting twins, her husband is in Iraq until July (God willing), and she has more energy than I do--going a mile a minute--teaching college classes part-time on top of everything else. But, you know what--illness HAS given US the gift of seeing and feeling time and again just how precious and transitory good health and life itself is. It slows us down enough to force us to live in the here and now--as I think you have also noted before. Some people don't ever live this way at all, or not until they are aged and affected by illness. Then the true essence of life comes as a big surprise to them. I know we pay a big price for it, but we have the opportunity to really live--in the present -- with our eyes open.

Katherine

[genie]

I think we all can relate to the bad days and I too loved the analogy. In the words of one of my favorite artists Jimmy Buffett, who brings sunshine to me on rainy days "I've had good days and bad days And going half mad days" and "If we couldn't laugh we would all go insane"

[wibbleway]

Thank you so much for expressing what so many of us feel. I finally got a electric wheelchair but even that doesn't help on bad days. I too have tried to run into the store for a moment and found myself in the check out line with horrible sweats, dizziness, chest pain, and had to run. It is embarrasing and maddening to say the least. This also has been a bad week for me. Hope you are doing better! It sure helps to know we are not alone. Thank you again for sharing! Cathy

[EarthMother]

A heart felt, and misty eyed, thank you to everyone. I have been reading the posts over each day as I try, hope and pray my strength is returning from this most recent set back. Funny thing, I was thinking .... I'll just wait until I get back on the mend before I write .... but today I finally realized, WHY WAIT?! I don't need to be perky and perfect here. There is nothing to prove, no hurdles to jump, no expectations to dash.

Thank you all for such thoughtful, kind and encouraging words. It always helps to be reminded during our dark times. Thank you all for holding a candle and keeping the light for each of us when it seems we are surrounded in darkness.

I am doing better, slowly this week. I have to remind myself that it is not always a linear path.

I am reminded by the boards, that I am not alone in this journey and that -- my sweet friends -- means more to me than words could ever describe.

Good thoughts and deep gratitude,

EM

[MightyMouse]

EM, I'm glad you didn't wait!! My goodness, how much I've been grateful for this place on the really crappy days... I sure do understand what you've been going through and personally have sat, misty eyed, looking at posts folks have taken the time to write to ME... and it's so nice to be able to do that for others too... so, right now it's YOUR turn, and when you're doing better, it'll be someone elses turn. Hang in there!

Nina

[Louby]

I'm so sorry not to have written to you sooner, I only just found your post, as I have not been well over the last couple of days, so have not been able to check the boards.

A couple of weeks back, I was having a terrible time, and I told everyone of how I was sad, frustrated and frightened all rolled into one. When someone replied it was like a relief, lots of people out there in this big wide world understood exactly what i needed to hear, and exactly how i was feeling. Someone wrote to me and asked me to remind them of the following;

"these are the quiet times when we have to listen to our own bodies wisdom. Eat when you can and don't beat yourself up when you just feel like you can't, lie down if your body calls for this -- even though you have 100 things to do and you feel so dysfunctional on your back. Give yourself time, it does get better again.

It is the groundlessness of this moment, not knowing when we will feel like ourselves again, that makes it so hard. So break the moment down into a tiny little piece ... find a comfy pillow, take a slow deep breath and just try to be with what is ... instead of what we want it to be."

So hugs from across the ocean to you, and know you are in everyone's thoughts on this board. I felt it would never get better, but it did - it will do for you too. Just try to remember all the good advise, and to be brave and strong, keep trying all the things you usually do, and have confidence that it will get better.

One more thing, your absolutley right you should never wait, no-one judges us here, we are like a little family. I never thought the internet could help me so much, but it has more than I could ever imagine.

take care & i wish you well very, very soon

Lou