Oh Stephanie I know what you're feeling; I wish I could help you, but I feel the same way.
I posted almost the same thing earlier in my journal except my work part was a year or so ago. Why are we so hard on ourselves and push ourselves to achieve things when we're so sick? I don't know and I can't ever give myself a break even when I know I'm really sick - I'm just harder on myself and then get worse.
Like being sick isn't enough I have to lay such a guilt trip that I make myself feel worse. I just can't give myself a break and say hey! I have this disease that kicks my butt daily or I have heart problems - I have to blame myself .
Then I get alittle better and I overdo things and have to stay in bed for days; sometimes my kids say oh mom's sick again or my husband bless his heart who works his butt off in the heat and sun so I can be home, sighs when he has to cook dinner - just sets me off and makes me guilt myself even more.
I wish I had some answers for you, hopefully someone else something really inspiring to say; all of us I think know what it feels like to go through this dreaded ordeal.
It's ok to feel bad, take some time off and just heal. Hope you feel better soon and take care of yourself.
Stephanie and Lisa, my heart goes out to u both. I think most of us r in this boat.
I feel that way every day and get so down on myself. I admire those of u who still function. I don't really. Stephanie u go to work and even r trying to go.to.Disney. wow! I am impressed. And Lisa u have kids to deal with that by itself is an accomplishment. I am thankful mine r grown. I don't know how I.would do.it. So both of u realize how much u.really r doing plus ur doing the best u can. That's really all any of us can do our best.
We all need to.just remember this and also be thankful for the great support on here:) many days this is my lifeline.
Thanks for writing :) I wish neither of us had any of this to deal with but it definitely is good to know you understand. I guess I have trouble giving myself a break because others still expect me to act as if I were not sick and I guess to some extent, so do I. Not my husband or my sisters now, but I'm expected to be able to perform a full time job plus extras like going out for lunch or any other random thing that might come up. I feel like I just start to sound like a downer if I keep going on about how bad I feel all the time at work. Let's be honest...people are too wrapped up in thier own life to really care much anyway. Hate to be that way but it's truthful.
I still can't believe we feel so bad with this all the time. It hardly makes sense to me so I guess I can't expect others to understand. Thank God we have support from our husbands and each other here. I'm sure it's hard for your kids to understand but I'm more than sure they love you very much. I really wish we could readjust our world to us instead of trying to keep up with everyone else's world. Thanks again for writing...it helped.
Thanks for writing and for your support. I really appreciate it. I feel less and less like I'm functioning lately but that's probably because I'm feeling down today.
Disney is going to be alot different from any other time we've been down there. I don't do well in the heat lately so I'm hoping I'll be able to do at least some of the things I want to do. I did a similar itenerary to other times but I'm sure I won't get them all done. I guess I'm just going to have to enjoy what I can. I'm hoping being away doesn't exhaust me because of course I hafta work when I get back. Thanks again for writing.
Stephanie, u will do the best u can at Disney. I guess we have to just learn how to do.them differently. I am having a hard time with that one. I was so independent so is hard.
Glad u vented as let's me know its not just me feeling down.
Stephanie, I have *SUCH* huge issues with the work/guilt related feelings also. I'm not working at all right now and I feel like such a failure also... I started to cry about it for the first time in a long time last night in front of my husband. He's working soooo hard and does so much that I'm so proud of him but in comparison I feel like his useless wife :( Generally I'm a happy person and the way I'm able to accomplish that is by 1)not working, which also eliminates the dread of going to work that accompanies the actual feeling like poop at work and 2) *constantly* (and with the help of therapy) reminding myself how I define true success and failure-- to me, success is about who I am and not what I do, treating those around me well and with compassion and just being a good wife/friend/daughter, enjoying and genuinely appreciating the important relationships in my life like my hubby, friends, fam, dog (yes, my dog is my child), and knowing that it's okay to have fun and enjoy life in whatever way works for you. It's very easy for me to lose sight of this though. Outside of just needing money to pay the bills (I'll get to that)I live in Miami where the majority of the people around me easily define success by what type of career you have, how much money you make, status, etc, (it can be a very judgmental and self-righteous atmosphere). So it takes a looooot of effort to not let that get to me, and know that I'm a success in the way that I define it and that's all that matters. When I think about it some of the people I know who are "successful" in a traditional financial sense (huge homes, nice cars, etc.) are the ones that are cheating on their spouse and their nannies spend more time with their kids than they do.... It actually makes me happy that I am who I am, unemployed n' all. POTS has forced me to keep my priorities in order and be a better person!
It's impossible to explain to people why I don't work, as we all know they just won't understand, so I just 'own' the fact that I don't work and learn to not feel like I have to explain it to everyone...it's my life, my choice, and no one else's business.
But it's almost like you want someone just to tell you that it's okay not to work, that you are allowed to not work.
The guilt part comes in when I watch my husband busting his butt while I'm home all day. I question myself and second guess myself, and if I'm having a "good POTS day" I can't enjoy it because I feel guilty that I'm not working and that I should be. I think the questioning comes in because I probably *could* physically have some type of job, I'm not going to die on the spot, I could make it there and back and go through some of the motions.... but it's just such a miserable existence for me to try to work and be a reliable employee of any kind. So it's either live in complete misery, or live in guilt... I opt for guilt.
Okay all that said, I am extremely lucky to have a husband who is soooo good to me and is as understanding as a non-POTSie can possibly be. He doesn't make a lot of money really, but I was also fortunate enough to do fairly well in the real estate market before I stopped working (close to 4 years ago)... so with those two things we've been able to live in a comfortable place and not scrounge. There are many hard months and we have to watch it and be financially responsible but we make it work... But that's my story, and that's how I go about not working.
I do feel like eventually I should figure out something I can do at home on my own... I do photography but I don't want to commit to shooting events because what if I'm having a bad day, I can't cancel shooting someone's wedding! I've taken up a drawing class... I've sold some of my fine art photography.... maybe I can be an artist and sell when I can, without being responsible to anyone else. It feels like I'll never even feel in a good enough place for a long enough amount of time to even figure that out!
My advice is just believe yourself, you *know* you feel crappy and just because you're not bedridden or on your death bed does not mean that you should expect to live the way everyone else does. Don't compare how ill you are to anyone else because it won't do any good... Life is different for us, that's the flat out honest truth. As Carrie from Sex and the City says "Why do we keep 'should-ing all over ourselves?" It's so true..don't 'should' on yourself! Go to Disney World and have fun-and make no apologies for it! If you and your husband can afford it and you feel like the misery of working outweighs the benefit of the income then stop working.
Anyway, I'm sorry this is so long, I hope it helps in some way. I definitely don't have it all figured out so if you or anyone else figures out a great answer to the 'work' question, I'd love to hear it!! It's been a really big issue for me too. it sounds like you have a great husband and it really helps to have that support system, so you are off to a great start in that respect :)
wow...i didn't realize exactly how long that was until I just posted it and saw it on the screen... sorry!
I'm having a hard time with it too...I hardly go anywhere by myself anymore and I hate it. My husband and I spend 24/7 together on workdays and I used to like doing my own thing sometimes on weekends. It's hard to accept.
I really was considering whether to post my vent or not...I didn't want to be a downer since I know we're all struggling, but I do think it's important to know we're not alone in how we feel. I am so thankful for the support here.
I guess you had some venting to do too, lol!
I'm so glad you are able to make peace with what defines you and have a clear vision of that. For all my therapy, I haven't done that. I know it doesn't seem like you've got it mastered sometimes like last night, but you're going to have your down times too. As long as you do keep reminding yourself of what's important, that's all that matters.
It IS no one else's business why you don't work. Plenty of people don't for alot of reasons...for all they know, you're running an online business in your house or work from home. I understand feeling pressure about where you live and having to keep up appearances, but try not to worry too much about that. I also want someone to tell me it's ok not to work...unfortunately no one has yet! Have you tried for disability? I really wish we could afford for me to stay home...even on disability it would be hard.
I'm glad you have the support of your husband. I understand your guilt where he's concerned too...my husband does all the housework and has to help me with everything. I feel like a burden for sure sometimes...especially when he's not feeling well or is under stress himself. It doesn't seem fair to him. We believe our father's got together in heaven and sent him to me because they knew he could take care of me :) Sounds like someone sent you a similar man...and for that we are both lucky. My sister is a photographer and does do events but she also sells prints and has had a few shows. Don't push yourself...you'll figure it all out when it's the right time. In the meantime, it's a wonderful creative outlet to give even more meaning to your life :) I would like a good camera. I was going to be a photographer until life and bills got in the way. What kind of camera do you have? I need a resonably priced SLR.
Thank you for your advice...you did have a good answer for the work question! I'm just going to do the best I can until I figure it all out too! For now, I'm going to go lay down. Thanks for writing :)
wow I'm glad to see others feel like I do... I feel so alone - everyone knows what happened to me IRL; but they don't "understand" some think I should be healed by now because I cover up and don't act like I'm THAT sick, which has probably made matters worse.
My husband works his butt off in the heat & humidity here in FL and comes home exhausted; I pawn the kids off on him alot of times as soon as he comes in, then I feel so bad when I can't stand up and do dinner or feel so bad I go to bed when he gets home. He frustrates me lol sometimes he thinks I should just push past it all and 'be healed" other times he sees me struggling to breathe or passed out and then he feels bad - he's tried to understand all my stuff, but forgets sometimes I'm sick.
I think the worst possible feeling to me is feeling trapped - I can't drive since I fainted driving last year and I have to rely on others for everything, now I can't drive because of the danger of my ICD firing when I drive....
no one in my family has any clue my heart problems are as bad as they really are (unless they figured out who I am on MH) - there's so many other things going on that I really don't let others in on what's going on
part of it is I hate to complain all the time and be sick and ruin things for others, so even if I'm having a bad day I just say i'm feeling "ok" most responses are that's good to hear...as Stephanie said - people are so wrapped up in their own business that I feel like it's a hassle or I burden someone if I'm anything other than "perfect" [sigh]
I can say I had 2 full weeks of almost feeling "back to normal" like before my ANS and heart problems started...then I overdid it and went to Disney for 3 days and walked the entire time...which put me back weeks. It was worth it though, after almost 16 months of bed rest, feeling miserable and deathly ill, I sat for part of the time watching my husband and kids have fun and that was worth all the pain I felt.
btw...Stephanie it's finally a bit cooler here in Central Fl...I'm over near Tampa and we've had annual passes to WDW for 12 years or so; this time of year is the best to go - so much going on and soon the holiday lights will be up. Go have fun and if you feel tired, get a wheelchair or scooter; we're going back soon and this time I'm breaking down and renting a scooter - no need for my family having to leave because I'm too stubborn to rent one
oh I did get a compliment the other day...someone said "your color is looking really good' LOL - I said thank you....didnt want to tell them I changed foundations to cover up the darkening circles and frightening pale color my skin's become as of late :P
this god prtty long and could not read it. I just want to say,,, you are by no means failure and hopes your diisney week is good.
be well, amo
I have not been online but off on medical appts. and just saw this post.
It is important to realize that you go through the same steps in losing the ability to do something as you go through when someone dies. The steps in grief are ones you go through when you lose something as significant as the ability to function the way you always have in your daily life. So you need to give yourself permission to grieve, and understand that you will be having a lot of different emotions including anger and disbelief and in the beginning denial.
I think it good you can talk about it here because you are acknowledging that something significant has changed in your life. This recognition is very important before you can move on to dealing with it and processing the emotions. While I experienced this in retirement so do not have the same exact situation I was in the process of tiling floors when this hit, and remodeling and interior design is a hobby of mine, and I cried when I realized my husband had to do the project for me. I felt so useless. At least in the beginning. Even tho my husband stepped right in and assured me he could do this for me. It took a while for me to accept and realize it doesn't effect my self-worth to not be able to contribute in the same way. When things happen like this we need to get to the place we can re-evaluate everything and look at it with fresh eyes.
I also want to tell a short story. When I worked in a hospital I had a very busy hectic day one day. Every person I saw seemed to be in a terrible mood. Then I went into this one patient's room. She was bedridden and unable to move. I was only there a short while but the woman smiled at me and lit up my whole day. I told her so and how much it meant to me and that she was my ray of sunshine in an otherwise rather dismal overwhelming day. It meant so much to her that she had so affected me with just one smile. It meant a lot to her too. I am sure she felt at times useless. We need to realize our selfworth and how we effect others is not tied up completey in our ability to do this or that.
I have learned to let a lot of things go and be fine with it. Others may chose to get help with certain things.It is a big deal to not being able to do something you have always done i and we need to recognize that and process it, and look at it to see if we can modify it or find a different way to get it done.
The Disney trip might be easier and more enjoyable if you take a portable wheelchair. You would be able to rest when needed. I remember when a family member made this decision in their teens. Do you not go out or do you chose to give yourself more freedom by using something that will conserve energy. That would be the question to ask I think.
Work sounds like it is doable with modification when you are feeling well but impossible when you are ill. It would be good to have a doctor who understands this and a boss that does too. I imagine unemployment insurance is more set up for broken legs and such then our sort of syndromes but it seems that eventually the state would need to be approached about this. I know that at some point people with fibromyalgia and other such syndromes have been able to retire with disability and at some point but I am sure that is done after a hard legal fight. Before that it is important to get as much working right health wise as everything influences everything else. Fevers for sure throw a monkey wrench into how we function and there needs to be accommodation.
In summery I want you to know that we are not defined by our diagnoses. We are so much more then that. At the same time it greatly affects what we can do and once we accept that, give ourselves permission to grieve losing abilities, and make modification for this in our lives, the sooner we can adjust and move on in a different way. I so identify with all that has been said here. Seek help and modification in your lives, keep communication open with signifigant others, and see a counselor too if needed to help process what you are going through which is signifigant. Other then that I send you each a big cyberhug! Marie
Hi Lisa, AMO and Marie,
I wanted to thank you for writing back. I really appreciate your thoughful replies and taking time to write them. I'm in a tizzy right now trying to get ready to go away while still not feeling well so I don't have time or energy to write back in detail right now. I just wanted to thank you for writing and say I am so thankful for all of you. I promise to write more when I can...we're bringing the computer with us so hopefully I'll have time while I'm taking it easy...which I plan to do! Thank you again :)