chronic fatigue syndrome or similar obstacles?

I can completely relate to impossible fatigue though for different reasons. I was pregnant with hyperthyroidism, Talk about being a zombie. I barely had the will to brush my hair. Fast forward several years and my thyroid had "normalized" according to my endocrinologist, but I was again just extremely low energy. Taking 4 hour naps in the day and barely being able to sleep late enough in the morning. I found through a physical that my vitamin D was almost down to nothing. These are nothing compared to cancer recovery of course, but they did cause me some serious exhaustion.

eponine1976 wrote: »

No, but a nutritionist isn't a bad idea. Often I just drink an Ensure for meals because I'm too tired to bother to fix myself something. I feel guilty when I give the kids (ages 4 and 7) processed foods like cereal, frozen dinners etc because it is easier when my husband is out of town (which is frequently).

1st I'd suggest a Registered Dietitian, instead of a Nutritionist. In fact there's a separate type of a Dietitian, that deals only with cancer patient's dietary needs & they're an: Oncology Dietitian.

2nd I also have CFS, via a severe flu when I was 14; that hospitalized me. It weakened me to the point that, I am unable to generate optimal levels of energy anymore & that was nearly 22 years ago.

3rd children're resilient, they know the difference between a lazy parent & a disabled parent, even as toddlers; so don't feel guilty concerning anything that you're unable to do for them. That stress'll only cause more issues, for you & them.

Oh my - and here's me just struggling with the CFS!

I am guessing your doc told you about graded excercise? Ie you do that 5 mins a day for a week, then increase by 10% and hold that for a week or 2, then increase by 10%? (That assumes 5 mins is the base your body can do regularly without being too stressed...).

That is th approach I have broadly taken - and it really has helped me. Eg I went from needing a sit downwhen I got to the pool, to building up very gently to a1k swim a time. The mental benefits (endorphins etc, as well as a measurable indicator of progress) were just as important as being fitter to give my body a better chance of recovery.

My advice would be to do the excercise early ish in the day and allow that it to means you need a little more sleep/rest once later that day. (I nearly always fall asleep in my post lunch rest on swim days). You might find your base is already higher than 5 mins in the morning.

I really like the idea of doing yoga or stretches in advert breaks. Or how about when you have to get up to go to the loo?

Can your husband cook double size meals and put the left overs in the freezer? Can you help him with those meals by chopping the veg at the time of day you feel at your best, ready for him - so you are still part of putting healthy meals on the table? That might help with your sense of guilt here.

The seven year old could learn to cook scrambled egg with you .... Add some frozen peas and baked beans and that is a perfectly ok, limited effort, kid friendly healthy meal you could add to the repertoire..... And have some family time preparing.

May I most gently suggest you really try to kick the Ensure approach. You are most definitely worth the bother of real food, (and is it really not so much more effort to make a cheese or PB sandwich).

I really feel for you. But I think it will really help you to make a determined effort to 'manage' how you cope with the illnesses - putting anything that helps your recovery (building up excercise, eating well) high on the priority list given you have so little energy and have to manage it carefully nowadays. You have been told about techniques like 'spoon theory' ??

Big hugs!

While I don't have cancer, for nearly 20 years I have had primary Sjogren's disease (autoimmune) with arthritis, fibromyalgia, celiac disease, hypothyroidism, asthma, gastroparesis, and various other things. I used to be diabetic but was able to manage that through diet alone. I have been unable to work for the past 11 years. I am pretty much housebound except for water therapy, doctor appointments and church on Sundays. I sometimes require the use of a wheelchair.

I know this won't be a popular answer, but there is a chance that graded exercise therapy won't work for you given the nature of chronic fatigue (the new name for it, by the way, is Systemic Exertional Intolerance Disease, or SEID). It is very similar to fibromyalgia. Some people with this cannot and should not exercise AT ALL because it makes their disease worse. I am hoping, though, that you are not one of those people, so I'll try to give you some suggestions.

The best way to manage your energy so that you might have some left for exercise is pacing your day. Figure out what part of the day you have the most energy (it can vary from person to person) and do your most active stuff during that time frame. But limit how long you do any one thing. For example, after tidying up the kitchen for 15 minutes or whatever you can tolerate, sit down and rest for 15 minutes before tackling another chore. If mental activity is tiring for you, alternate that with rest breaks too. It sounds counterintuitive, but building short periods of rest into your day will decrease flareups.

Cut back on stuff you don't tolerate well as much as you reasonably can. See if someone can grocery shop for you so that you don't wear yourself out, or grocery shop online with a store that delivers to your home. Sometimes just having someone drive you to your destination will help enough for you to do the actual shopping too. My husband does all the household shopping with the help of my very detailed lists. That gives me more energy for limited exercise. If you can afford to get help with other things like house and yard work, that might free up more energy for exercise too.

As for the exercise itself, start TINY and carefully. If you can't walk all the way around the block, just walk to the corner and back. If the weather where you live isn't favorable for outdoor activity, consider a piece of exercise equipment in the home such as a non-impact glider (I use one) or a recumbent stationery bike. But whatever you choose for activity, try to do it on a regular basis, even if it's just for five minutes at a time. Some people do better with multiple brief activities spread out over the course of a day. One thing that is very important is to not increase the duration of your exercise until you are able to tolerate your current level without causing a flareup. For some people, this can take a very long time. But patience is worthwhile. Five minutes of walking every day without a flareup is still better than doing half an hour and then finding yourself stuck in bed the next day because it was too much. When you can handle it, increase the time, but maybe just add one more minute and see how that goes. When I started walking for exercise two and a half years ago, I could only do five minutes and was so wobbly I had to be supervised. But I kept at it, slowly and increasing at one minute intervals as tolerated. Sometimes it would be months before I could increase the time. But now I am up to 25 minutes four days a week on days I don't have doctor appointments.

Another suggestion is water exercise. You can do a lot more in water than on land. I go to a class endorsed by the Arthritis Foundation three days a week for 40 minutes. It is mostly stretching but does include some walking. I had to build my way up to doing a full class, but it was worth it. I have been doing this since 2003. I am convinced that had I not done water therapy, I would be using my wheelchair full time.

One more idea: see if your doctor will refer you to a physical therapist to teach you a stretching routine you can do at home. This is especially helpful on days where you just don't have energy to leave the house. I do a half hour to an hour of stretching per day in multiple sessions. This does count as exercise. Every bit helps.

You may find you have to be more strict with your diet than a healthy person does. That's not a terrible thing if you are eating for maximum nutrition.

I hope that when you are completely done with your chemo you will find some energy returning. Until then, don't let any doctors bully you into anything that makes you worse. Pay attention to your body and do whatever you can tolerate but no more than that.