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Seven Year Anniversary Today


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Hello my dear POTS pals,

I wasn't going to post b/c I feel like I just say the same darn thing over and over again on annivesraries...but there is no where else I can say this that people will 'get' what I am feeling on such a deep level.

While my friends are amazing and wonderful, they cannot understand the magnitude of this day like you all can...

So, thank you for just letting me share and 'put this out there.' It provides me with such comfort to know that you are out there 'listening.'

Today is my seven year anniversary of getting sick. While I was determined not to get sad or wrapped up in it, I have found myself so sad today and broke down in tears finally. I spend so much energy trying to 'push away' negative thoughts, that I think I need a little day just to be sad, then move on.

I feel incredible gratitude for so many things. And I try to hold on to hope every day and give each day 'a shot' no matter how badly I feel. I have the best medical care I could ask for (finally), and incredible support and love from family and friends. Plus, I have Potsplace!

At the same time, I feel intense grief over feeling so lousy for so long! I never have a day, and rarely a moment that I am not aware of feeling awful and struggling to focus, shower, eat, talk, survive. I try to be 'fully present' in whatever it is that I am doing, but I still have to fight symptoms so much...pain, fatigue, lack of concentration, etc. I am still totally homebound and very limited in activity.

I am a wiser, stronger, and more compassionate person b/c of this illness, but I am sooooooooooooooooo ready to feel better!

I just spoke with my POTS dr. on the phone on thursday and he said, 'You are doing everything in your power to feel better.' That made me feel great, but also sad, that in this life we can't always control these things!

It is so hard for me to wonder, after seven years and not much improvment...will I ever feel any better? Is this my life?

I always hold on to hope and have a strong passion for life...but anniversaries give me pause and I needed to do a little 'reflecting'...

Thanks for 'hearing' me! I know so many of you can understand this!

Emily

P.S. I am wondering if any of you have any 'special traditions' or 'rituals' that you use to mark these days? I think that would be helpful. It is a day of such mixed emotions...gratitude for what I do have, grief for what I miss, and holding on to hope. I think having some sort way to acknowledge the day would be good.

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Emily,

I can relate to what you are saying. It is good that we can hold hope, cherish each day and appreciate the things in life that we do have. At the same time, it is true that we have lost much in life and are limited in ways that our peers are not.

Sometimes the anniversaries are difficult because it's a reminder or a "slap in the face" that we aren't better or reminds us of the things in our lives that we do miss. It's okay to feel sad and to cry over this!!!

I personally don't have any "set" traditions for days like this; I kinda tend to do what my heart tells me I need. Sometimes I just need to write, sometimes I need to make a goal and start a plan to attain the goal, sometimes I need to hang out with friends and share my experience with them and sometimes I just need to order dinner to be delivered or take-out and then curl up with a good book or my favorite movie to help myself feel better.

Whatever you decide to do, I hope you will feel better and know that your reaction is normal!

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Heya Emily-

I TOTALLY "get" where you're coming from. I don't have such a firm "anniversary" per se of originally getting sick, but still can get pretty bummed with anniversaries of particular things. Just last week I went to this seminar thing that I had gone to last year when I was doing better - not great, but wonderful compared to these days - and I almost didn't go. I'm glad that I did, but I almost had a nervous breakdown on the way there. The example sounds a bit trite, but it's for an organization called "Active Survivor Network" that in itself is about surviving/thriving through illness so that made it more significant.

But, anyhow, I know that I'd totally get hung up on it if I had a more specific date. This year I've had a rough time even with months since my fairly drastic shifts downward, i.e. having to stop work entirely, other body systems wacking out, etc.. I had to go clean out my cube at work a few weeks ago with my mom & it was so tough...not b/c I loved my job (I had been planning on leaving this June/July anyway) but b/c of how I had to leave. And b/c there were Christmas decorations/cards strewn about, etc....just fairly blatant symbolism of my nonexistant, or rather hospital-existant year since December. Sort of blew my dreams of handing my resignation letter over to my supervisor in order to head to grad school, ya know?

Okay, so I've now rambled about me rather than responded to you...sorry:-) Regardless, I "get" it. Although that seems to be pretty much par for us these days, eh?

I don't have any specific traditions/rituals, but I'd say that if that's something that might be good for you, give it a try.

Hang in there,

Melissa:-)

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Guest tearose

Hey Emily, it is good to stop and see from whence and where we came but do not get all down on yourself! You did not ask for these challenges and you are doing the best you can to live in spite of them!

I try to focus more on the good occasions like the day I joined potsplace rather than the day I understood I had pots. Then I have reason to celebrate and do something special for myself and others. I suppose when I recall a more sad anniversary, I allow myself to sit with those sad and deep thoughts and feelings until I have worked through what I must...

On a happier note...as you get older, you will forget how "good it was" when you were "younger" so don't worry about the future!!! :P:huh::o:huh::blink: I mean this to help you smile a little!

Remember dear lil em, every day is a gift. It is all we have. Make it special for you and let someone else know you love them...nothing else really matters ya know.

You rise up out of that "pots dx anniversary mood" as soon as you can and celebrate the "what to do next cause I'm still here mood!" ...please have a party and serve goodies with real decadent sugar, I'll come to help you celebrate! :)

hugs and best regards, tearose

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Hi,

It's o.k. to feel sad as long as you don't let it bring you down any further sometimes that is what helps to get you past it all. Try not to dwell on what was, I am guilty of that also, remembering what it was like to feel normal or at least what it was like b/4 all the symptoms started. Try to think of each day and day closer to getting better, to a level that you will be happy with.

Do something special for yourself today, or have someone do it for you! Think when that day comes for me I am going to jump into a container of Ben and Jerrys Godfather ice cream,,hit the sugar overload and pass out for the night,,or maybe day!

(((hugs))) to you :P

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Hi Miss Em! You feel however you want to feel but don't stay down for too long! I know you'll have happier moments but embrace them all and don't get too down on yourself when the lows hit. I too tried to go to Walmart Friday (my bp was doing better) and I almost passed out and my husband had to hurry and get me into the car and I just cried and cried cause I just can't believe this is my life. I understand, we all do. You think after having POTS for 21 years, I'd be use to it and accept it, but I'm not...

I have been sick since I was nine so don't have a certain anniversary for POTS but I am a cancer survivor and Feb. 17 is the day I found out 10 years ago. But I try to see that day as the day they removed my cancer, not the day they found it. We can look at these days that we are still here making memories even if they arent' the memories that we dreamed of.

You bring so much joy into our lives Emily, so all these years haven't been wasted my friend. And hey, if we didn't have POTS, we'd have never met each other.

Don't know if that helped any because when you are down, you're down. But these are our lives and we have to live them and I think we do a pretty good job at staying positive most of the time.

Hang in there girl!

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Thank you all very much...please do not worry about me...I think I worry you all when I get down! I didn't mean to do that...as I know how much we worry about each other here!

You are all right...and thank you for 'getting it'...

Tea and Tammy...I have truly learned that the most important things in life are

'TO LOVE WELL AND TO BE LOVED.'

I focuse all of my energy on doing this to the best of my ability...but I get frustrated that I cannot nourish people and love them as much as I wish that I could!

Tammy, I needed to hear what you said...that my spirit matters here on this board...b/c I do feel incredibly passionate about being a part of this community and the people I have met here...

Goodnight!

Emily

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Hello emily!! :P

I read your post tonight, and I can totally relate to what you are saying.

I understand what you are going through.

Just try to think about the good things in your life, Like Ahser, and and your mom and freinds... and all of us here who are rooting for you too!!

Hang in there girl!

Linda

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Emily,

I know how you feel.

Allow yourself to feel sad, because you FEEL sad and you can't hide that. BUT (yep, you know me, there's always a but :P ) after that you need to do something special. You could have a special tea with your mom (if she's around) or ask a friend (in advance) to take you to a special place for a (wheelchair)walk or to have tea or coffee or just buy flowers (so that you don't have to pick them from your garden :) ).

I always like to thank people for helping me. So this year (July 4th) I'll think of something special for me and my family. I LOVE to go out so maybe I'll ask them to take me to the beach, sit/lay there and watch the children play. After that we can go have a HUGH icecream. And next year I could ask my mom and sister to do something special together, and so on. It's just what helps me, maybe you ca use it as an idea to make this day easier on you. Oh and another idea: come to the Netherlands and we'll feel sad together! After that we can ask my family to take us out and something real nice :P

Hold on Emily,

Corina

btw I HATE timedifference B) . I wanted to join this conversation as soon as it started and not a DAY later!!!! :lol:

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Hi emily - I know I'm a little late posting.

I think it is normal and human nature to to have a sad or off day as we see another year go by and still feeling ill.

I think its good to get it out whether you cry, scream, kick something whatever!

Holding in your emotions is as detrimental as being ill.

After you do whatever is theraputic to "get it out" Then let it go, and look at your strength, compassion, and wisdom beyond your years that you have gained.

I know that had I not gone through these health challenges I would not be remotely the person I am today... I am more understanding of others, and so appreciative of life and the little things..

Your an incredible person! I am so fortunate to have been able to "meet" you here ...you have impacted myself (as well as many others here I am sure) in such a wonderful way. I enjoy your posts. your advise and just your knowledge and understanding...... Never forget that you hold such invaluable qualities.....

I hope that today is a better one for you. B)

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Emily,

I could post the same thing. It is so hard to deal with all the feelings that you have at once. I want to let you know that there are so many of us here that know exactly how you feel. Please hang in there, even when I know it gets hard sometimes.(well lots) But just look around you and think of all the good things you have in your life.-But also know it's ok to grieve and be sad sometimes. We are only human. I know I get so mad sometimes when someone will say, "I am so sorry you are feeling so bad today, do you want to go to the mall? Maybe you just need to get out more." URGHHHHHHHHH!!!!!!!!!!!!!! I would love to go to the mall, but I CAN"T you dummy. They just don't get it, even though they try.

As for your POTS family, we DO get it. Maybe we should take a trip to a cyber mall. I would really love some new clothes. I think I will buy a sexy new dress and wear it to a nice cyber restaurant with my husband. B) New makeup, everything.

I do want to tell you too that you are a VERY important part of this site. You have lifted my spirits many times. You are a beautiful dancing light and don't you forget it! Your light shines so bright, I've gotta wear shades :lol:

Hugs,

danelle

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Hi Emily,

I've waited a while to post on this subject because I really didn't know what to say. I just wanted to give you a big hug.

I don't really have an "anniversary" because my symptoms crept up on me, although I do remember well when the boughts of unusual fatigue started and that was 3 years ago this July.

One of the questions I've struggled with - as I get sicker and sicker- is who am I? I realized how much I defined who I was by what I did. As I lose my activities I have often felt like I have lost myself. But that isn't true. I am still adventerous, spunky, competetive, friendly and huggy.

You my dear Emily are still a sparkling light - a dancing light. As I said in the other post, you still sparkle through your sick body. You will never lose who you really are no matter how much activity you lose.

The balance I am trying to find is to grieve my losses, but rejoice in the things I can never lose. I hope you will be able to do both too.

With love,

Roselover

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I guess I don't have an anniversary. I've been sick my whole life, so I guess it would be my birthday, but I don't celebrate that anymore either. I just go one day at a time. Fair days, crummy days. Really crummy days. Blue days, not so blue days. Sick days, better days. I know pretty soon after I wake up, how it's going to be. But I guess I've just gotten used to it. But then I used to work my butt off as a nurse, so I had years of hard work under my belt and lately have begun to feel like I paid my dues. For the younger ones, I know it must be harder. My son will struggle with that one. But you can only do what you can, and all those 29 years of pushing more out of my body than it could handle got me where I am now. So was it worth it? Not on most days. I guess it's a toss up. You spend your life working and wishing you didn't have to, then when you can't, you wish you could. We all have hands we've been dealt, I guess it boils down to what we do with it. I contemplate this quite a bit. I tend to swear too. But there are things I might have missed had I not been sick. As I ramble on here, I realize this is part of my problem. I guess most days I have come to terms with my limitations, which are substatial at this time. But as there is no miracle pill yet, it does me no good to be down all the time. So I usually try to make the best of it. morgan

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Hey Emily. I had what I consider to be my one year anniversary this past February. I mark it as my one year date as it being the last day I was able to work. I considered it to be my "thinking day" where I could allow myself to go over every emotion/loss and really feel them for the day and try and work them through. I tried to get the negatives out of the way first and then really focus on the positive things and making goals for myself for the upcoming year (realistic, small goals). I made sure to spend a good ammount of time with my family in the evening (when I was focused on the positives) and we all had a really good Take Out supper in the living room while watching a good movie. I found it to be very comforting, uplifting, and gave me the boost I needed to push forward the best I can. The next day I really felt ready to tackle another year! I guess that will be the most important ritual to me... the comfort of family and friends. Make your day special for you, Em! Laura.

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Emily

Thanks for posting this. I just want to say that I would never have known you except through this forum, and I feel fortunate to know you--even though we don't "talk" to each other much. You bring such warmth and energy here and I know you bring it to your friends and loved ones and your challenges with this condition.

I think we do not know what the future holds--none of us do. That *is* a feature of life. Some people are fortunate enough not to experience chronic illness, and so don't understand how tenuous life is, but as we have talked about before on this topic, they DO miss out on really living life with the intensity that someone with a chronic illness does. And, like morgan says, the bottom line is it is the hand we have been dealt (to use an idiom--does corina know this one?!).

More is being understood about this condition. It is likely that new treatments will eventually be available to help many of us that are not available now.

I think you have every reason to be hopeful for your future. The gallbladder was a huge setback for you and I am sure that delayed or set back greatly any healing.

What were the Lyme disease test findings, BTW?

I am glad to see that you do feel hope --as I think you should! As you meditate/ponder/experience today, I hope you can feel our caring and compassion and admiration for you.

Katherine

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My sweet Emily,

I feel for you because I can relate to what you are talking about.

I have 2 kinds of goals: short terms and long terms.

Short term: my every day life. What I can still enjoy doing. For example, I like going alone riding my wheelchair and feeling free to do as I please.

Long term: hoping that Researchers will find better medication and that I will have my life back.

I try not to think of what I cannot do anymore because it makes me feel sad. What I miss the most is bicycle riding and dancing. My dream is that one day I will have a med and will be able to dance and go on my bike again.

Love

Ernie

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thank you all for your wonderful replies...

ernie...i want to dance again too! and i have the same short term/long term goals thing as you do!

katherine...you are right, medicine is always changing...there is always hope...i need to update the lyme thread (seems to be negative...but will try to elaborate one of these days...)

danelle, roselover, jenn and everyone else who posted to me...thanks for 'getting it' and also for telling me that you can 'feel my dancing light'! you all touch my life so much too...it's amazing!

emily

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Okay..I'm reallllly late on this one..just wanted to say "ditto" to everything already said. I had my 2yr. anniversery on May 7..a day I'll never forget..but hey..we're still here right?!

Alright Em..sing with me girl..."I'm a survivor..I'm not gonna' give up..I'm not gonna' stop ahhh...I'm gonna'..(I don't know the rest of the words..thank you Destiny's Child! :)

Love you honey..keep your chin up!

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