Dealing Day To Day

[joy]

Let's just chat about how we cope on a day to day basis!

Post what you were able to do today if you like and share anything you wish to!

Friday I went out with a good friend who took care of me at the hospital when I was getting my therapy for RND.

My boyfriend came and the two of them got along haha.

I was pretty exhausted by the end of the night, she was holding me up when we went to leave but it was so worth it, managed to titl back in my chair and brace my feet off the booth so I wasn't so upright and lasted for over an hour

Yesterday went out to eat with my boyfriend, no clue how i made it Friday was exhausting.

Today I feel awful but my heart is so full of joy from all the laughter and friendship, it was the first normal thing I've done. I'm three weeks exactly into my first truly major and debilitating flare

[potsgirl]

Hi Joy~

I must say I am surprised at how much you can do during a major flare. I'm in a low period, so yesterday I made it to the gym where I walked for a bit, came home and bathed, and rested for the rest of the day.

Today I was exhausted but I swept around my patio door and outer door, helped do some laundry, took an 1 1/2 hour nap, and hung out in my recliner watching some Olympics with my boyfriend. We got take-out because I was too tired to go out for Valentine's Day. I also needed to rest because I need to try to walk again tomorrow.

Hopefully next week will be better!

Cheers,

Jana

[lieze]

I worked an 8 hour shift on Saturday. I was scared out of my wits. I thought this is it my body is going to cave and they are going to tell me I am done here. My whole career flashed before my eyes I thought it was over. My anxiety was so high so I took a 1/2 a Xanax. I was only scheduled a 6 hour shift but there was a call in so I got pulled to be her replacement. I made it but I forced myself to pace myself. I started feeling the fatigue about 6 hours into it but made it.

Again today the same thing happened. I had an ocular migraine last night and my right eye dilated. I had difficulty going to sleep worried about today. So same thing happened another person called in today and I got pulled. Today I spoke up and said I won't be staying for the whole eight hours I will leave when I am scheduled and they were fine with that.

I think it's just great that I made it. I know years ago I wouldn't have thought twice about that but I am somewhat deconditioned and I was worried I was going to have some problems.

I took a nap both days and that really helped. Was not able to do much with my family or around the house because just those work hours sapped my energy.

I am not scheduled to work again for two weeks so I made it through another one, that's good enough for now!

[Brye]

Today: Sunday

My husband was home so he got up and got my kids dressed and fed and I got to sleep in until 8:00.

I drove 3 kids to Sunday School, my son was at a sleepover so that was a small break for me!

Stood waiting for my son to come out of Sunday school when my daughter said "Jonathan isn't here today"(BRAIN PAUSE)

Went to walgreens to do a quick round of coupon/discount shopping during Sunday school.

Headed home and made lunch, worn out so I took a 2 hour nap. (SUNDAY FAMILY NAP TIME FOR ALL)

Headed to the gym to do my little workout. (Walked 20 min and biked 20 min)

Brought dinner to a friend who had a recent death in the family.

Came home and made dinner for the family and washed a few dishes. (I'm never caught up on these)

Got the kids to bed by 8:00 and watched the olympics for an hour while folding some laundry.

Shower/computer time and off to bed!!

This schedule would make a non POTS person tired!! I can't ever imagine working an 8 hour shift though. My mid day nap is critical. I joke with my friends about how I'm always off to nap, they have no idea this is a necessity for me!!

Brye

[erikainorlando]

My goodness. I am with Jana! I am so jealous. I just can't even begin to function like a normal person..working 8 hours or even 6 would make me feel like an olympian!! When I get that well you will hear me shouting from the roof tops states away!

I got up did some housework and showered. Had to lay down for several hours...I don't get tired, but I get very ill feeling.

Went for coffee with a friend and did a little grocery shopping.

Folded a little laundry and am reclining..having an ill spell again (it is like this..up for a few hours and then ill and have to lay down and then it cycles again!). Do most of you function like me?

[lieze]

Well confession here I have been rather lazy here for the last 24 hours. Here it is almost 3 pm Monday and all I have accomplished is a sink full of dishes and getting snacks here and there for the kids no real meal yet. I just took my bath and did a cool down before I got out, I find myself being so paranoid about everything.

I feel a lot of discomfort in my chest today I think it is gas but it sits right there almost on top of my heart just hanging out not going any where.

I have got to get moving here. I almost need someone to light a firecracker under my butt because it's so easy to prefer sitting still and feeling great than getting up and what that will bring.

Hopefully I can post a productive report later so far I'm in couch potato territory. I have told myself I have got to get out of that bed and at least be upright on the couch. Even that is good exercise for my POTS body if I understand this correctly.

lieze

[ByteMe58]

I can't wait to get to the point where I can do something. When I was in the hospital, I could only get a minute out of bed without the symptoms coming on. Then they started me on meds and I was up to about 5 minutes. Now with exercising on the isokinetic bike and meds at home for 5 months I'm up to 10 minutes. I spend the rest of my day like this.....

Wake up at 8 for first round of meds and breakfast eaten while laying in bed. Some light reading until my eyes get blurry, Exercise with bike in bed and straps to work upper body. I sweat so much that after exercising that my wife gives me a bath.

Back to hospital bed until about 3, then into the recliner in the living room. More pills at 4. I try to stay there until about 8 or 9 each night watching TV with my wife. More pills at 8.

Then it's back to bed to read and relax until about midnight. Last batch of pills and sleeping pill at 12.

Yesterday I sold my truck, I won't be driviing for about 5 years, so I let that go. I loved that truck, a Dodge Ram 2500 with a V10 motor, raised up and big tires. 800 watt stereo with woofers and great 4 wheel driving at the beach. But now I have a wheel chair that lays back so when I do leave the house (to got to doctors) I can lay down in the waiting room.

But tonight I told my wife that I am happy where I am, I am going to continue getting better over time and we have each other. I have 2 dogs that LOVE having me home all the time and my wife is my best friend. I consider myself lucky.

Frank

[mountain girl]

I worked day shift over the weekend, and on Saturday, felt pretty good, so my husband and I went to the grocery store. Sunday when I got off, rested for an hour or so, took a shower, then we had planned to go to the movies for Valentines but they were sold out so we came home and rested in bed together flipping back and forth between the olympics and the nascar race. Monday I went to a movie with my daughter, did an errand and fixed supper, which I am often too tired to do, but ended up crying and feeling exhausted by 630. I find that happens sometimes if I have pushed myself doing too much. I used to not be able to do anything at all if I had worked, and on a day off, if I did one errand, that was usually it. Now I am able to do more than I used to, so I hope that time will come for those of you who are still having a difficult time. While I am not "cured" by any means, I am better than when this all started almost two years ago.

[lieze]

Well I'm struggling a bit here trying to stay active. I set the timer for an hour yesterday to try to stay up and doing and it was a bit uncomfortable. First feeling pain in the back lower legs, and all kinds of other sensations. I made it for the hour but don't know that I'll do that again. I do so much better for 20 minutes and then resting then doing another 20.

And last night I had to get up to get the kids a snack and I was so dizzy. Oh my the room was spinning.

So out today and it was hard to walk to the building I was going into again dizziness and I either stop walking and hesitate-that helps or I tighten up my muscles.

Then in to a grocery to pick up a few things I needed after that trip. So dizzy walking into the store I had to keep saying to my self feel your feet feel your feet how grounded they are with every step.

I do so much better when I can hold on and push the cart it's just a feeling that it seems to steady me. But then a couple times in the store I just felt like I could just go down but somehow I keep going it all feels like sensations that I wish would just stop.

I will keep doing the getting up and resting all night long and I guess keep trying to focus on what I can do. I love it when I just get distracted and forget about it all. That's when I feel the best.

These feelings come and go for me especially the dizziness. I have nice periods where I don't feel it for several days so maybe I'll get another break soon. I can hope for that.

lieze

[joy]

Hi Joy~

I must say I am surprised at how much you can do during a major flare. I'm in a low period, so yesterday I made it to the gym where I walked for a bit, came home and bathed, and rested for the rest of the day.

Today I was exhausted but I swept around my patio door and outer door, helped do some laundry, took an 1 1/2 hour nap, and hung out in my recliner watching some Olympics with my boyfriend. We got take-out because I was too tired to go out for Valentine's Day. I also needed to rest because I need to try to walk again tomorrow.

Hopefully next week will be better!

Cheers,

Jana

I propped back at the table to get my BP up best I could. and by the end of the night people were holding me up and I was carried to the car haha. should've used a wheelchair.

I'm paying for it now and doing all the worse, but at least I'm to the point where I can sit up for longer periods of time. I hope its going to start improving. Last week I could hardly walk at all.

[Noreen]

Frank-

Sorry you had to let go of your truck. It might seem lke a small thing to some but this illness has taken so much that you are entitled to grieve for what was.

I think you are blessed to have your best friend as your spouse Pets are the best. ,I'd be lost without my cat, Salem, who always knows who is sickest and needs him the most.

Skritch behind an ear, hug your best friend, and know that you are living your life to the fullest.

Noreen

[joy]

well it's a new day. I think I'm learning to adjust to a point, but I still am unable to do any school and getting out of the house those two short times this weekend took its toll on me. Still worth it though.

[janiedelite]

I've had POTS since 2006, but got really sick in 2008. The sudden increase in symptoms really made me feel horrible, like I couldn't do anything (even talk) without feeling worse. So I spent most of my time in bed that year. My BP fluctuated wildly, as well as heartrate, and I wasn't properly diagnosed with anything. The only thing I knew that helped was lying down, so that's how I spent most of my days for about a year.

Then I went to Mayo 1/09, got properly diagnosed, and the Mayo doc emphasized how important it was for me to try some upright activity each day (I'm NOT saying everyone needs to exercise in order to get better). I didn't really get better, but I found that I could either lie down and feel horrible or I could get up and do something, and maybe feel worse afterward. But I was so thankful just to do something, even if I just walked down the block.

At the beginning of this school year, I decided to try volunteering at my husband's school. I just couldn't stand another year of lonely sickness. I was willing to push myself, even if it took a couple days to recoup afterward. I volunteer 3 hours for one afternoon a week. I bring my seat cane and lay down on the floor of his office to rest about every hour or so. But I've made friends there, and enjoy finally feeling useful after not working for nearly 3 years! I also started volunteering for DINET, which can all be done while lying in bed.

For the last two months, we've been living at my parent's house due to finding a water leak and large mold problem 12/09 at our own house. The air samples found many molds, but we had a huge infestation of stachybotrys/toxin black mold. My energy level has increased in the last 6 weeks! Yay! My other symptoms haven't gotten any better, but my hubby and mom are amazed at how much personality I have now that I'm not so fatigued (is that a good thing? ). Woo hoo!

My other activities during the day include housework when able, petting my two sweet doggies, and watching TV on the computer. Lately I've been coordinating contractors who are working on our house to get rid of the mold.

[lieze]

I tried to get out today after spending the last three-four days in the house.

I had a lot of anxiety driving and had to try to keep from hyperventilating.

As I got out of the car to enter the first building it felt awkward to walk I felt like I had sea legs.

I don't know why I do this.

I really think I need to get out more often almost daily so I don't have so much anxiety.

Did a few things around the house and I'm so proud of the little bit I get done.

lieze

[Brye]

Joy:

I love the fall risk bracelet in your photo. I feel like I should be wearing a sign some times. Every time I'm in the hospital I get the purple falling star taped on the door so everyone knows!!

Brye