No Naps, No Caffene....how Do You Stay Awake??

[lloppyllama]

Since my heartrate is already so rapid, my doctors dont allow me to have caffene (as I'm sure yours dont either) They also dont want me to be napping during the day, as that is decondition my body more, and get it even worse at adapting to the upright position.

So I was just wondering if anyone has any ways to get energy when we already are so wiped out. These past few day ( I am thinking from the warmer weather) my symptoms have been alot worse but I also have been significantly more tired, and i am having trouble doing even the smallest daily activities.

Any help you have to offer would be wonderful!

Thanks,

Mary

[JenniferInOhio]

Hi again Mary.

I think a nap helps sometimes. As long as you don't lie around all day, I think your body will be fine. Get one of those wedge pillows and lie back on that for a nap.

I don't do any caffeine except for chocolate. That does not seem to be bad as long as I don't go crazy eating it. I usually try limit myself to one serving per day.

[lloppyllama]

I think that sounds like a good idea, because as long as I dont stay in bed all day my body shouldnt lose alot of like muscle mass and all. Plus if I use a pillow that props me up my body is the somewhat of an upright position anyway.

My doctors said I can have chocolate in small portions... haha because they really like chocolate too and they think that is just way to mean to take it away! haha and I agree.

Thanks for the reply!

~Mary

[Tammy]

I agree that naps help so much. I don't tend to get them as I have a two year old daughter, but periodically I do and it does help as long as I don't wake up with an adrenaline surge after it. I can't see I really "do it" either though as I'm so exhausted and weak most all days off and on that I do tend to have to sit down a lot for many, many, many breaks thoughout the day.

- Tammy

[hannahsmom03]

Hi Mary,

I totally understand how you feel! It is a daily chore for me to stay awake and keep moving but luckily I have a 3 year old little girl that keeps me busy. Some days I am not sure how I can get through the day . I have noticed that drinking alot of water and keeping my mind ( even though it's fuzzy sometimes) busy with reading or playing with my daughter some days it is easier for me to go to sleep at night. I can't wait until I have more energy and I know you all do too! Take care of yourself! I know this is a daily struggle for all of us that some people do not understand . I feel lucky to be a part of a group that support each other and give each other hope

God Bless You,

Erica

[lloppyllama]

Hi Erica,

I have alot of concentration and "brain fog" issues too, I think that I will try reading, because I have alot of books I have been wanting to read, but I just didnt think that I would be able to remeber what is going on. But I think it is deffinetly worth a shot! Becuase I loved reading before I got sick, and hopefully I will find that I still can read and comprehend it.

Like you said its so great to have this network of people that can share knowledge and stories, it has deffinetly helped me, and I too am new here. But its great to have people who understand because dealing with so many people who dont understand why your always missing school, or when your there your always "out of it" and so on, it really helps to know there are others going through the exact same things!

Have a wonderful day!

~Mary

[MightyMouse]

I drink one cup of coffee in the am, and sometimes a cup of tea around noon...and when possible, I take an hour long nap. I think this is one of those things that varies by individual. For me, naps and caffiene are helpful.

Nina

[Ernie]

Hi,

I sleep 12 hours per night so I don't need to take naps.

For me the problem is more how do I go to sleep at night with all the adrenaline surges!

[lloppyllama]

Hey Ernie,

Now that I wont be in school anymore I think that I will start to try and do just that, get 12 hours of sleep each night. I sure hope it will help, I think it will too!

Thanks, have a great evening!

~Mary

[Rachel]

Hi Mary,

I'm sorry you're having difficulty with the heat and fatigue. I hope you can find something that helps you soon.

I've actually never had a doctor limit my caffeine. Caffeine doesn't have much effect on me. It doesn't raise my heart rate a significant amount or keep me awake at night. I don't drink coffee excessively, though. I like to have 1 or 2 cups a day.

My doctors haven't limited my rest either when it is needed. There's a difference between resting too much and getting the rest you need. For me, I simply cannot make it through the day without resting at least once in the afternoon. I don't always sleep, but I do lie down for an hour or two. And I often have to lie down in the evening too. I'm not being lazy, I simply cannot keep going, doing, and sitting. But all of the resting is balanced with doing what I can when I'm up. We all need different levels of exercise, activity, rest, and sleep. The trick is to figure out exactly how much you need of each! And it can change from day to day!

Has your doctor mentioned elevating the head of your bed? Some people find this very helpful. Here is what the "what helps" page on DINET says about it: "Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000)."

Something else that has been a small help to me is a high potency vitamin from the natural food store (so that the vitamin doesn't have preservatives, yeast, etc. in it). I like the Rainbow Light brand. I definitely notice a difference in my energy level if I go for a few days without taking it. Now, it isn't a huge difference, but for us every little bit counts!

Also, staying away from foods that are hard to digest or are trigger foods helps. If you can avoid your trigger foods then hopefully your body will have more energy for you instead of having to deal with foods that it doesn't like!

Take care,

Rachel

[flop]

Hi Mary,

I think that you have to be aware of the difference between taking a nap and just generally lounging in bed all day. My cardiologist banned me from staying in bed all day even if I am ill with a bug - he said I must make myself sit out in a chair with my legs down so that my body still has to work against gravity and blood pooling. Whilst my symptoms are much better if I lie down, the fear is that too much lying down and the body will cope less well with being upright when we try to stand / sit.

I often find that I am wiped out when I get home from work and sometimes taking a 45 minute nap in bed gives me the boost I need to make it through the evening (by that I mean being able to sit at the table for dinner and watch some TV or read this website).

Especially when school is out it is important for you to plan your day with particular aims and objectives, however small they may be. Some days you will feel worse and might not manage what you wanted to do but actually trying to do things within reason is good for you. Most of us know all too well that rushing about doing too much is a bad idea (usually pay for it the next day with worse symptoms), but equally allowing yourself to do nothing is probably as bad. I realise that for some on here cleaning their teeth and changing pyjamas might be a huge challenge but keeping up with the activities you can accomplish is thought to help prevent deconditioning which can be a disaster for POTS patients.

I hope that lot makes sense and doesn't sound like I am preaching. Basically I mean, listen to your body and rest when you have to but keep active within your limitiations.

Enjoy your holidays and I hope that you rediscover reading, I used to love it so much as a teenager.

Flop

[lloppyllama]

Hello,

Rachel and Flop, I appreciate all of your feedback so much! I deffinetly think your right when you say there is a difference between naping and just lying in bed all day. Today I went with my mom to go shopping for some new compresion stockings and legging-ish things. I also got some cooler clothes for these hot days. After just one store I was beat and really needed a wheel chair, but the stores didnt have any so I slowly made my way through the stores sitting down about every 30 seconds, it was quite a drag. But hopefully now wiht my new stuff I will be able to bare the hot days easier!

I think I'm going to try elevating the head of my bead and see if that makes any difference. I also am going to check out those vitamens you mentioned because my doc. has me on a multi-vitamen for my vitamen-D defficiency, and if it has the required amounts I will try it! I am also going to start a food diary so that I can hopefully find what foods are bad for me.

Flop, I deffinetly didnt find all of your help like you were just preaching to me, it was very helpful and I really appreciate it. I have found that many times I will try and do much much more that my body can handle, and I totally end up paying for it.

Thanks so much for your feedback!

Have a great Memorial Day!

Mary

[Rachel]

I should add that the Rainbow Light Women's One is a higher potency than the Rainbow Light Just Once. The Women's One also has a digestive enzyme blend in it in addition to the vitamins. I think the enzyme blend may have been part of what really helped me too. Okay, I think that's all!

[lloppyllama]

Ok super thanks!!!!