IS THE REST OFF MY LIFE LIVING WITH NO ENERGY

Hi i was diagnosed after having a mammogram in March 2014 never really ever thought i was ill started my own business after me and my husband split up about six years ago as Painting ladies These last few months i have been really struggling if i work for a few days it takes me so long to feel normal if and when i need treatment will i ever feel like my old self ever again

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  • Hi! Amanda

    Like you I too was diagnosed after a mammogram but in 2010. Completed fcr and BR in August 2015. Felt good pretty quickly. Have now got more energy than I have had in years. Must admit I do limit myself and still find I need to rest and sleep in the afternoons. This does keep me going all day . Probably harder for you if still working. My advice would be to try and rest at sometime during the day. Even 40 winks would then help you to keep going. Learn to listen to your body, it knows what it requires to keep working.

    So to answer your question you will feel like yourself again.

    Hope this helps .

    Best wishes.

    Sue

  • I might feel that i dont no what to do with my self but i am a person that has a real job to sleep any time i have just turned 50 and i can take sleeping pills and they wont make me go to sleep

  • Amanda, have you talked to your doctor about this exhaustion and has he been able to suggest any help? You mention sleeping pills and them not helping you to sleep. Do you have insomnia too at night as well as feeling exhausted during the day?

    I'm asking these questions because you sound at the end of your tether with all this. It must be particularly hard when you're running your own business and have had a relationship break up.

    I don't know what stage you are with your CLL but it sounds like this is affecting your quality of life and perhaps even making you feel really down. Please talk to your specialist about it. But the bottom line is yes, you will feel a whole lot better following treatment. How far off that is for you I'm not sure.

    Wishing you all the best,

    Newdawn

  • Because my blood results are stable that is why they arnt giving me treatment i dont feel i have any quality off life i feel all i do is house work all work and havnt got anything left for my children awe having any fun

  • Hi Amanda

    I know exactly what you mean. I was diagnosed in 2008 and treated in 2011. Bloods were stable at last checkup but I have no energy and constant fatigue. I feel like a fraud when I mention this to my Consultant. It's like if the bloodwork is ok, they expect you to be fine too. I wish I could understand why this is. I should say I had a nephroureterectomy in 2011 due to cancer in my right kidney. You're not alone so I hope that's some comfort for you.

    Gary xx

  • I know how you feel- I'm a teacher and I was literally falling asleep during school hours. My blood work wasn't that great, I did have some lymph nodes that were bothering me and my Oncologist didn't want to treat me either.

    I was at the end of my rope because I would literally have to splash cold water on my face constantly and students would still tell me "Miss Decker, you were falling asleep, weren't you?" Trust me, I would sleep 9-10 hours and take naps after work...Still feel wiped out.

    It wasn't until the lymph nodes on the back of my head got so big that I couldn't use my sleep apnea mask anymore that he finally decided that the time was right (and my #'s doubled in less than a couple months at the same time so I think that helped push him in to make that decision).

    The good news is I am feeling better with treatment (FCR-Lite). Have had a few set backs but definitely have more energy.

    Just keep telling your oncologist EVERYTHING and how hard it is etc. GOOD LUCK!

  • It's a frustrating walk (or wobble). As a very active person the exhaustion hit me hard and the doctors not understanding it didn't help. I started on B12 sub-lingual and magnesium supplements...plus the odd red energy drink and now after 4 years, I am having glimpses from time to time of my old self, but still need lots of rest. I stopped work to have the freedom to nap and to reduce some stress. But at the end of the day...it is still a long walk. Hang in there Amanda...we're all pulling for you.

  • Dear Amanda,

    If there is one constant with this disease it is fatigue. Everyone with CLL talks about it. I have found one remedy to the "energy" crisis and that is upping your nutrition. I started making blender smoothies with lots of real whole foods. I only do one a day in the morning but I have read accounts by some members on this website who do two a day. In your smoothie put celery, beets, avocado, berries, banana, carrots, kale, spinach, broccoli. Use "the rainbow" of veggies and fruits. Use just enough berries/fruit etc. to sweeten the smoothie. Do not go overboard and make this a "sugar" shake. I try to buy organic and I actually grow my own kale but it is easy to find all of these foods at the grocery store. Believe it or not this tastes delicious and is super easy to do and contains all the fiber. I feel a energy boost from this smoothie. On days when I do not make this smoothie I feel an energy let down. I just came from my 3 month check up and my doctor says I am doing great. Try this during W&W I think you will feel a difference in your energy. All my best to you hopefully this will help you feel "like your old self again".

    Kathy

  • If you haven't done so, have your vitamin D levels checked. I did after a posting on a CLL forum and found I was at 18 - considered deficient. I began taking supplements based on the doctor's recommendation and have raised it to the normal range. Something to consider.

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