How Do You Find Your Balance Or Limits???

[Heckofagal]

Fairly new here, not officially diagnosed, appointment with specialist is not for over 3 months. Have had a pretty rough 3 weeks, with lots of dizziness or presynope which seems to be my biggest issue. Every day at work is a struggle to not pass out (If I even make it to work). The anxiety and battle all day are exhausting and by the time I get home I crash and sit on the couch until time for bed. Some nights I have stuff I have to do so I push myself to get them done. Weekends should be spent on the couch as well, but life has other plans and I try to do what I can to get out and find some enjoyment in life.

This past week was especially rough. Monday was a holiday so I stayed at home, Tues - Thur I worked from home and Friday I worked in the office, but it was tough to hang on all day. Came home and sat on my couch that night. Saturday I seemed to be feeling pretty good. So this is how my day went:

Woke up at 6 to make sure my daughter was awake for work and then I ended up taking the dog outside and making my daughter some breakfast and never went back to sleep. Had an appointment at the bank at 9 am to take care of some financial stuff, not there long. Stopped at the pharmacy to run in and get some meds and couple other items. Stopped at Chic Fil A for breakfast, then did a bit of shopping in Target. My hubby had a haircut appointment at 11:20 so I waited in the shop for him. Then we went home and I sat on the couch for a good while, and had some lunch, watched tv, My daughter had homecoming that night so around 3 I stitched up a seam in her dress that was splitting, then I helped her a bit with her hair and make up. Went for group photos at 4:30 and I did well walking a bit in the park (not much at all) and did not seem dizzy at all. The girls went to eat at TGIFridays at 5:30 and some parents had to drive some younger kids and friends of ours were staying for dinner so we did too. I did well in the restaurant even though the noise in that place normally makes me dizzy. It was nice being out socializing and I started to think maybe I was on the upswing, maybe I could get my house cleaned up again over the next couple weeks and could have some friends over down the road. Maybe I could even put up our Halloween décor. Came home and cleaned up the dirty dishes in the kitchen that had been piling up and then sat on the couch for the rest of the night. Did get a call about 9:45 from the school and of course that scared me a bit. They were calling to tell me my daughter overheated and passed out on the dance floor. She did that once last year too when they went out to play tennis on a very hot day. I'm hoping she was just dehydrated and not on the same path that I am on. Anyway, I felt like yesterday was almost a normal day. Today was a whole different story. I got plenty of sleep, got to sleep in until 9:00, got up and had a bowl of cereal and sat on the couch for quite a while. My husband wanted to go out for pizza for lunch so we went around 12:30 and when I walked in to place our order I was immediately very dizzy. (I struggle at the counter of this place normally.) Anyways, I tried to just ignore the dizziness as I have never actually passed out, but I think I almost did too. By the time I signed my name on the credit card slip I was shaking and very fuzzy. My husband came in and could tell I was not well so he got our drinks and made me a salad at the salad bar. I thought once I sat down I would regain my composure but my anxiety was already torqued and I was dizzy as ****. So he got the pizza to go and we went home and I sat on the couch some more. Started feeling better this afternoon so we both went to the grocery store to buy a few things. I walked in and immediately walked back out as I never would have made it walking through the store. So I sat in the car while he tried to shop with my list. Came home and I've been back on the couch.

So looking back, I guess I overdid it yesterday. But how do you know when is too much? I have so much to do around the house and I barely did any of it and look where I am now. When is it too soon to try to start an exercise routine?

I was really optimistic yesterday when I was feeling better and now today I am so depressed again.

I don't know if I should try to go to work tomorrow, but I also can't afford to lose my job as I've missed several days lately.

[kellygirl]

Well just reading about your day exhausted ME! LOL. I got diagnosed in July of this year. Since that time I have learned what my triggers are for certain symptoms, heat will make me dizzy and dehydrate me and amp up my heart rate and lower my bp, so I try to limit my exposure during the hottest times of the day. I try to get shopping done and appointments finished prior to 2:00 pm or do them after 6:00 pm. Being on the computer for more than 45 minutes at a time gives me blurry vision and gets me agitated and gives me brain fog, so I limit my time and do it in intervals, sexual activity seems to agitate my system so none of that business before bed or I won't sleep. I think once you identify triggers for different symptoms you can make modifications around it. I also tend to keep close to same activity level all of the time. On good days... sure I want to do more, but I know what the consequences will be, so I don't.

Recently I have been taking saturdays and sundays as my on the couch days. I can't seem to keep weight on because just sitting upright is calorie burning for me so it it is hard for me to keep weight on. During the weekends I have learned to look forward to piling the couch up with comfy pillows and blankets, and settling down for a day of watching TV or movies, laying on the couch and getting lost in a novel or listening to audio book if I can't focus to read. Playing games on the computer. Eating high salt, high fat foods that I enjoy, staying hydrated, taking warm bubble baths and just taking care of myself. I don't mess with my hair or make up. I am actually learning to enjoy these days and looking forward to them as days to repair and rejuivinate my body from the activities during the week.

For me this is all about pacing and moderation and patience and being kind to my body and working with it.

[statesof]

It took me about a year to really understand a lot of my physical limits, that whole year I basically spent every other week in bed for a week my body recovering from pushing past its boundaries. Now days though I tend to see how my body feels and space things out, so if I have to go to the grocery store I do that on a different day than I do laundry (it's in the basement and I live on the top floor). I can usually start to tell if I'm doing a bit too much because I'll start feeling mentally exhausted and need a break, sometimes I'll feel visually tired or anxious. Also on a long day for me I'll usually wake up the following morning feeling completely spent, my bodies way of telling me to take it easy that day.

Overall it is tough though, you kind of have to find your own limits, but spacing different events out throughout your day might be helpful, like one thing in the morning, one thing in the afternoon.

[Heckofagal]

Thanks or the replies. I guess working full time might be the only thing I can do for a while. I feel so helpless.

[Katybug]

I have found that time with my illness has been what has taught me my limits. On days when I feel good, I have learned that 2-4 hours of activities depending on how strenuous they are is my limit. Bad days, I need to stay my self on the couch for the most part. Maybe do one house chore. If I overdo, I end up getting less done in the long run because I'm down for days. So, I have accepted that the dust will be there tomorrow if I can't get to it today. The laundry isn't going to leave the building. So, I choose what "has" to be done each day and some days that is only meeting my and my pet's basic needs. And, sometimes, what "has" to be done is something fun or social for my mental health.

[Heckofagal]

So on really bad days is it best to sit on the couch and try to recover? Or to push yourself to get some exercise? Really bad day Sunday resulted in me not moving much from the couch the rest of Sunday all of Monday. Today too scared to try to go back to work. Not sure if I sit here and try to recoup or try to get some exercise.

[Guest ANCY]

Sorry you are going through all this. I think it's important to determine where your personal limits are as everyone is different. It took me a while and a lot of trial and error to determine where my limits are, that being said, my limits are in a state of Flux right now, thankfully in the right direction. I find that if I watch my average heart rate it is a good indicator of my limits. (I have a chest strap heart monitor that I wear when I feel that I'm pushing the limits.) Coming from a person who is extremely deconditioned, you want to do all that you can, what that is you have to decide. I have been trying to overcome the decondioning these last couple months, and believe me it's rather difficult. In hindsight I wish I had been more active, maybe could have helped keep me from the severity of the state I'm in now. Difficult to tell since before IVIG every time I exceeded my limits I went into a downward spiral. With IVIG I may cause a flare of symptoms by pushing to hard but i do recover a lot faster. Hope you are able to find what works for you.

[Katybug]

I have found that for me, on bad POTS days, I have to rest. Exercise can push me into a bad place. On bad migraine days, I can sometimes help my migraine if I do some physical activity but I have to be careful to strike a balance between feeling a bit better and not overdoing and causing an acute POTS episode.

[kellygirl]

I also just keep confined to the couch or the bed on bad POTS days because exercising will make it worse... as I have learned.