A Pat On The Back

[Stace915]

Without going into the crazy details of the strange thoughts I have been having lately (my bf turns 30 this week, which has me thinking about turning 30 in September... I am pretty sure I am having a minor mid-life, or early-life crisis of some sort!), I just wanted to give everyone a pat on the back for WHATEVER they have accomplished today.

No I haven't lost my mind, but I was just thinking, today I got up, I took a shower, did my hair, drove myself to work, even walked the dog alone... now I am at work. I feel like ****, my body aches, I am lightheaded, dizzy, fatigued, my head hurts and I am trying so hard to push through it and make it through the rest of the work day and not leave early. And you know what, me taking a shower this morning (with my shower seat and all) took so much more energy than anyone in my day-to-day life realizes. Most people don't have to struggle to blow dry their hair, and lay on the floor while they do it because the heat makes their bodies sick. Most people are not sitting at their desks in severe pain and not saying a word and trying their absolute bests to make it one more hour...

We are all (un)lucky enough to be living with this illness, and although I think everyone on here has very different symptoms, cases etc. and some of us are more disabled then others, this dumb illness effects everyone in some way and makes life that much harder. I couldn't help but think this morning, wow just making it to work was so much work and took so much physical and emotional strength... so, um... why doesn't anyone say thank you? No, I am not saying that I want special treatment because of my illness, but I guess some sort of appreciation for what I go through.

In the real world, no one thanks you for coming to work, because that is what you are supposed to do. Wake up, go to work etc, etc., but most people have no idea that while they have woken up and gone through their day to day motions and coming to work is just part of a routine for them and don't give it any thought that by the time I get to work my body has already worked so hard and done so much. Not many people at my job know about my illness, but my boss and close co-workers are aware and I guess I just feel like it would be nice for someone to say, hey I know how much you go through on a daily basis and how hard it is for you and I just wanted to say great job that you got out of bed today! And great job for driving yourself and not get getting a ride today, and not staying in bed!

My point in all of this rambling is, that whatever you have accomplished today...no matter how big or little..even if your biggest accomplishment was feeling well enough to sit up in bed instead of laying down, I wanted to say that I know how difficult it is to do anything when you are fighting your body and feeling like death with this illness, and I wanted to say to everyone that it is great and awesome that you were strong enough to do it and that I feel like everyone needs and deserves a pat on the back sometimes to keep going.

[brownsea]

i understand what you mean, well done you for getting into work, i can imagine how hard that is day to day for you.

i was able to dress this morning, be pushed around a shop, have tea, then straight home to bed cant sit up for longer than two hours at present.

then this afternoon i had to sort out medical papers for my referral to see a hypermobile doctor, tearing up his address three times because i got it wrong!!!

now my neck and headaches, i lying in bed hoping i can take a bath soon.

we all go through so much, which others will never know the extent.

hope you feel ok

xxx

[Tammy]

Thanks for the pat on the back! We all need to support each other and hearing encouraging words makes all the difference

I'm happy I was able to take a bath today, and even though it will take a few hours to recover from it, I achieved my main goal for today I do hope to clean out the refrigerator also, as there are a few science proejects starting to grow inside it, but whether that goal for today happen or not, my body has yet to decide!

Blessings

[janiedelite]

Thank you so much! I got up and drove my husband to work today, praying that I wouldn't crash! But I made it. We only have one car because we can't afford two right now, and I don't drive much anyway. But I had to meet the contractors at our house as they're painting and finishing drywalling our previously moldy room. It was 50 degrees in the house which helped to constrict me and wake me up!

Yes, it does feel like moving around is like pushing a boulder uphill or walking through molasses. My husband admits that if he were the sick one, he wouldn't cope nearly as well as I do.

Stace915, I don't know how you and the other working POTS folks do it. Good job to you all for pushing through, and good job to the rest who are pushing their bodies so much every day, working or not!

[Guest tearose]

Thanks Stacie915.

I needed that today too!

Just today someone with no disabilities, who saw me needing to sit down, said that they too "get tired and even sometimes take a nap"..totally making my disability seem "within normal limits". I did all I could to not cry. I get so tired of defending myself to people who assume I should do more. I appreciate the pat on the back and return one plus a loving hug to all!

tearose

[ByteMe58]

There aren't enough pats to go around.

Today after riding the isokinetic bike in bed for 25 minutes to get my blood flowing, I was able to sit and stand for a total of 18 minutes, a new record for me. My heart rate had gone from 55 laying down (on meds) to 102 by that point and although I wanted to hit 20 minutes, I just couldn't do it.

I spoke to my parents (Florida) and told them the good news, the last time I was only up for 10 minutes. They told me they are proud of me, that felt good. Imagine that, I'm 51 years old and my mom says she's proud of me, life is good.

My mom told me that my dad is always sad/depressed when he thinks about my condition, but when he talks to me and I tell him how I'm trying to get better all the time, I actually cheer him up and mom says he is happier when he hangs up the phone.

We have 2 choices, lay around and sulk, or stay positive and keep trying, and only one of those things will make us better.

Frank

[erickamcc0523]

Thanks for the pat on the back! I have had a few physically rough days and it was much needed! I did go to church yesterday (I guess now, day before yesterday... darned insomnia!), but was shaking the WHOLE time, and I was very worried about being able to even make the drive back home. I could have sat for the whole time, but I guess I'm too darned stubborn for my own good, so I kept up as best as I could with the whole Catholic calisthenics... and I do the advanced calisthenics (I attend an Extraordinary Form Mass, which has about double the standing and kneeling of a regular Mass, and is about 1:30:00 long). I came home, and promptly went to bed and didn't wake up until 8:00 am the next morning.

[lauralulu]

Brilliant post Stace!!! <3

[Broken_Shell]

Thank you and well stated... pats to everyone out there for fighting each day!

[futurehope]

Stace915,

I agree with everything you said. I've often stated that I think us POTS people deserve a medal (how about gold?), for doing the normal everyday activities. Our normal day requires much willpower and much effort compared to healthy people.

My normal is to push through everything. I watched my Dad literally stop moving for the last 30 years of his life because he said his heartrate got too fast and it scared him. I do not want to live my life like he did, so I push.

Life may be more difficult for me than for others, but I do have this life and I intend to live it.

God bless you all!

[carinara]

Thank you so much for the pat on the back. I can relate so much to your work situation because mine is very similar to yours.

carinara