I Guess I'm Not Better After All

[all4family]

Hi Everyone,

I was really hoping for my feeling good to last. I even tried denying the signs that this was coming back, but today I tried all day just to get up and do anything, and I couldn't stand straight, I couldn't breath, and my chest hurt. I had the spacey feeling, and vision was really bad. Well you all know how it goes. I could list the symptoms for hours. I want to just sit and cry for hours, but that just makes me feel worse. I don't know how to pull out of this. I'm sorry I'm on my pitty potty. I should just be happy that I had some time feeling good. I want to be positive, but I am just not feeling positive at all. I feel like a little kid who just lost their favorite safety toy. Why do we have to be sick?! Has anyone ever gotten better...for good??? Has anyone ever heard of a story of someone that just got better? If you have "better" times does that mean that you may get better? Or is getting better just an elusion? Can anyone give me any hope right now?

Thank you all for always understanding. Although I'm real sorry we have to understand this.

Suzy

[mjan]

Oh my dear Suzy.. HUGS!!!

Do you take any meds yet??

I finally got the Klonipin and it really helps when the tachy stuff starts..it stops it from going into a full blown attack.

Like you I have other things going on..and I am hanging in..but I do not have the same kinds of symptoms.

I do have vision problems..but do not get as sick as you.. I know.

All I can say.. is that I a glad you come on here to get encouragement.

Maybe there is someone who has similar illness/symptoms that can help more.

Remember... I always care... Jan

[Broken_Shell]

Oh Suzy... all I can do is send hugs and say that I understand and I wish so much that there was something I could say or do. Please let me know if there is any way that I can support you. It is cruel that we have had so much taken away from us... I am 27 years old and when I think about everything I have lost - both of my current life and my future abilities and potential - it is very overwhelming sometimes. I know that you are trying to take things one day at a time and focus on the positive, but remember that you are a human being and you do have the right to mourn for everything that you have lost as well. Just hang in there and know that somehow, someday another better wave of functioning will come - hold on to that hope! HUGS again.

~ Michelle (Broken_Shell)

[vemee]

Someone one in another thread recommended the book "Just Fine, Unmasking Concealed Chronic Illness and Pain" by Carol Sveilich. I read it and it is a good book that covers what we all feel in dealing with chronic illness. It is hopeful and gives positive direction without being unrealistically cheery. It was a good read for me because it showed the feeling of loss and guilt I experience is not uncommon in people with chronic conditions.

I know you said in the last thread that difficulty breathing was normal for you so I don't want to belabor the clot thing but I did become concerned when you said your leg looked bluish other night.

[potsgirl]

Hi Suzy~

I'm so sorry that you're feeling poorly again. I've always heard that POTS waxes and wanes, and that's certainly what mine has done, although I'm having a very long period of 'down' right now. I think the most comfort to be had is in knowing that there are many of others who are going through the same thing that you are. You are never alone, and I have heard from good doctors that some people do get rid of POTS. I hope that today is a better day for you, and that you know that you always have HOPE.

I'm sending you some of mine, and please feel better soon.

[janiedelite]

The ups and downs of dysautonomia really stink ! On one hand, I guess I'd take feeling well at times to not feeling well at all. But on the other hand, it stinks that we don't have any forewarning or control of when the bad spells come back. Whenever I come out of a bad slump, it feels like I'm coming out of the fog and I have to reorient myself to my new abilities. Just when I'm feeling comfortable spreading my new wings, the reality of my limitations sets in again.

It must be hard for you to have to look at your partly finished kitchen and be reminded of what you can't do right now. When I go through a bad slump, I always feel like something has been taken away from me and have to grieve a little bit. I've had tons of testing, but I always spend some time wondering if this will go away or if it's something serious (because having shortness of breath and chest pain is disconcerting!).

Keep resting as much as you can, and now you know that your body is trying to heal itself and can see some improvement at times. Let us know how you're doing! So sorry that you're feeling so poorly right now,

Janie

[babettess]

Hi Suzy,

I understand where you are coming from. I feel one of the worst things about having a chronic illness is the unpredictability. I never know when I'm going to have a good day or when I'm going to have a bad day. Yesterday was a bad day and today is a good day (so far).

Hang in there. We all have to go thru a little rain to get to the sunshine. For me I had worse symptoms when I was 25 and was down for 3 months in bed and then I was good for 20 years. Now I'm about where I was back when I was 25 again. I'm out of bed but still not good. So for me, my good and bad times come and go and at one point were actually pretty much gone for about 20 years. We are all so different.

I'm sending thoughts and prayers that you will get "good" again and real soon.

Babette

[all4family]

Thank you all for the support,encouragement, and for sharing your stories with me. You all made my day so much better today. While still well, and thinking I could make plans and do things somewhat like normal people I had made plans to go to some kind of animal type festival down at our local fair ground. Well I couldn't let my kids down, so I got up this morning and go ready to go. Before I left I jumped on the computer and read all your encouraging, and supportive messages. It made my day so much better just knowing I am not alone in this and there are such good people like you all on here. I made it through on my scooter, and came home happy, and feeling pretty good.

Jan, Thank you for the hugs, and sharing. It sure is nice to know we are not in this alone.

Michelle, You did give me so much support. I was in tears with your encouraging message. And I think I just needed permission to as you said mourn what I have lost. I had planned on having my kitchen and living room done, and enjoying the summer with my kids. After allowing myself to feel sad about it I felt relieved. I was able to take on today one moment at a time. Thank you.

Vemee, I will look for the book you mentioned. I think a big part of the battle with something chronic is the emotional side of how it effects you every day. Also thank you for the concern with the breathing. I did go into a bit of a panic with the breathing issues, and worried about a blood clot. But they were just the same as I had before, and the other really puzzling thing is that neither of my legs are swelled at all anymore. Which I find very strange. That is one symptom I never get. The only time I had it was when I was feeling good. Then almost like clockwork I began feeling sick again, and there go my legs feeling better. Unless it is because I finally got off my feet. But I am keeping an eye on it, and will not ignore it if they swell up again. Oh, and the blue color was temporary,and went away after a while.

Jana, I am so sorry you are going through a down right now. I hope you have a up real soon. (especially one that stays up.) I do think that knowing you are not alone is what makes this bearable. Today I thought you are not the only one going through this, and it helped keep me going. Thank you for telling me others get better. I just want so much to believe that I will be better one day. It makes today easier to take if I feel there is hope. Thank you.

Janie, you described it perfect coming out of a fog, then the reality of the limitations setting in again. The kitchen is depressing, and stressful at the same time. I am hoping I will have enough energy to finish it. Even if at a slower pace. I at least have to get it far enough done to get our oven back in. I am tired of microwaving everything! The shortness of breath, and chest pain are troublesome, but I find that when I am more used to it it isn't as scarey for me. Thank you for the support. I am resting, and even took a nap today when I got home.

Babette, Thank you for the support. I am a type of person who likes to plan things, and I can't do that with the as you said unpredictability of this disease. It really can be very frusterating. I hope you don't end up in bed again. I know how hard that is. I spent much of about 2 to 3 years laying on the bed or floor. It wasn't constant, but it was the only time I had even a semblance of a life. One day ran into another for me. I couldn't stand it. I should just be grateful that I am not back there again. Compared to those days my sick days now ARE sunshine days. So thank you for helping me see the positive. And thank you so much for the thoughts and prayers. They mean so much to me.

You all are really some very special people. You have all walked such a hard road, that you have a great deal of compasion, and it shows so much. From suffering we learn compassion. I am sorry for everyones suffering, but must say what wonderful, caring and compasionate people everyone here is.

Thank you all truly, and hugs to all of you,

Suzy

[ramakentesh]

Im not sure what happened in your case, but when i start coming out of a crash i start feeling good for part of a day 1 in every three, then its for a whole day and then the bad times become shorter as I improve.

hang in there. Its ***** majorly but from my own experience it wont last forever.

[Maxine]

(((((((((HUGS)))))))))))))

I know how bad you must feel------especially when you feel pretty good for a while and then you get your hopes taken away.

Still hope, as this will keep you going. You will have bad days, and sometimes weeks. However, you will have GOOD days and weeks too.

This is the nature of the illness, and I know for sure some people have gotten well again, and some of them stay that way, or only deal with mild symptoms.

Find out what works for you the best to keep those good days coming. Sometimes there's no rhyme or reason on why we feel good for a period of time, then all of a sudden were crashing. I have had this happen, and would try to put my finger on what may have caused it, and drove myself crazy. Now I just learn to find other ways of dealing with it, and do other things I enjoy when I'm feeling more limited. Movies are a big thing with me. My son and I enjoy watching movies together, and love movie trivia. We'll go into the IMDB web site and look up movie data, data on actors------(heck you can even find out how tall some of them are-------even polititions. Who would have guessed ex VP Cheney is only 5ft. 8in. tall--------LOL.

My husband and I enjoy movies together also, but my son and I have the same taste in movies. My husbad does enjoy some of the same movies I do, and we set aside time for movie night. We also do the same thing looking up triva as we go along. We have a DVR cable box, so we can pause, record, or rewind if we want. We went out and bought a 40in. flat screen last year. We both know I have days I just can't get out for very long, or at all, so we splurged. Reading is another thing I like to catch up on, but sometimes when my neck and head hurt this is tiresome.

I tend to get too many books going at once too. I'm a slow reader, as my ADHD gives me trouble with focusing, and comprehending. It depends on how engaged I am with the subject. I used to look up medical information for myself or other people to help them find out as much information as they can to advocate for themselves. I can speed read sometimes with this, as I have comprehended medical jargon well. Health class was always an easy (A) for me-- LOL. I don't do this as much anymore, but I enjoyed doing this when I couldn't get out, and had the extra bonus of helping someone find the help they need.

One day I was able to help my cousin collect moeny for her fundraiser for CF---(cystic fibrosis)----her son has this. I was able to help collect a lot of money sitting on my rear end on my couch. It wasn't a ton of money, but every little bit helps. My husband kicked in some help too--- .

Don't feel like your whining--------------------heck there's days I'll lay in bed extra long in the morning feeling sorry for myself. We need this time to regroup.

I always feel better after a good session of feeling sorry for myself. We are dealing with a very confusing illness---heck it even confuses a lot fo doctors, and this confuses us even more, because we can't get the help we need sometimes. This illness is very emotionally trying, so will have times it takes you down emotionally. You always get back up though, and in the end you end up stronger for it.

Keep your chin up dear----and I hope you get lots more good days then bad.

HUGS AGAIN,

Maxine :0)

[all4family]

Sorry it has taken me so long to respond. I have been struggling a lot lately.

Ramakentesh, yeah, I relate to what you are saying. It seems like I go through periods of real bad with few good moments all the way to periods of real good with few bad moments. I just wish I had more of the good with few bad moments. Thank you for sharing.

Maxine, Thank you so much for the support and understanding. I really like your ideas for the movie thing. We have a membership to netflix, and love to watch movies. I am always trying to think of fun things to do with the movies, and really like your idea of the movie trivia and stuff. Luckily my whole family enjoys the same kinds of movies, which really helps. We will probably have a movie night tonight. Thanks for the inspiration. Thanks for caring. I hope you have some real good days soon too. Take care.

Hugs Suzy