I am now eighteen months post op (Transachial esophagectomy) along with 3 months pre-op chemo and two months post op chemo.
I get so tired every evening around 17:00, which lasts till 21:00 then I feel great. Sometimes I feel too great, then I can't then get to sleep when I go to bed.
Everything else is good and my recovery is on plan. I eat well and drink normally. I am back at work and managing this fine. No matter what I try to do to offset the tiredness? Every night it is there again. It is a pretty anti-social thing. If I fight it, I look like I have been asleep for a week and am just no fun. If I give in I am out like a light. I realise that this is small issue and not something that I a complaining about. I just wondered if it is the norm?
Has anybody found a way around it? Does it go away with time?
I am 57 and otherwise healthy, with regular daily walks with my two dogs.
Any advice?
Bruce
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brucemillar
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What time are you eating in the evening? I find that the evening tiredness follows a meal, especially if I eat a little bit too much. I am coming up to 4 years post op and am 64 but was quite fit before the op. For some time now I have accepted that I can't be 'full on' day after day. I still work but at probably 75% in terms of time and effort. If I have a full day I will try and have a quiet day to follow. I deliberately pace myself by not getting up too early most days. I also eat gradually during the day and only have a light supper with a glass of red in the evening. Sleep was very poor but it is improving. I think our sleep problems are caused by post op stress and all the chimicals that have been pumped into us.
Even after four years, my strength is improving and so is my stamina. It's a strange feeling that I am getting stronger as I age. I have just returned from a weeks golf and culture in Spain where I played some tough long courses. I couldn't have considered doing this two years ago. Standing there in the spring sunshine exactly 4 years after my diagnosis I felt great, and very very lucky.
So, hopefully your tiredness will dissipate in time. It is a long haul but you sound like you are on track.
I don't have the same problem as you, I'm only 6 months post op IL, but just a thought. Have you tried power napping? Just set yourself a time, I used to do a fair bit of driving with my work and when I got to feel like that I would stop, park up and set my mobile as an alarm and have a siesta! You could start by trying just a half an hour and see if it helps. That used to refresh me anyway Good luck
Hi Bruce I am your age and had the same op at GSTT at the same time more or less as you. I get tired sometimes and feel nothing wrong with going to bed at 8/9 pm. If I'm tired I go to bed basically. Generally I'm not too tired and my approach is not to fight the tiredness just go with it when it hits me. I have young children so when they go to bed I sometimes follow soon after.
No advice here but you asked if this was the norm and it is for me. KBO
I suffer with tiredness around lunch time when I've eaten. Sometimes I fight it and sometimes I go with the flow and have a power nap. If I can't sleep during the night I get up have a camomile drink and do a few sudko puzzles and then creep back to bed. My husband never knows I've been up!!
After 25 years I still get that daily feeling of being totally knackered.
Power napping is great but I find that it tends to spoil the main sleep.
If you do not sleep on an head-raised bed then probably sleep is psychologically disturbed by the subconscious fear of inhaling reflux. It is very important to progress naturally through the orderly rhythmic up and down stages of natural sleep.
The principal factor is the Ghrelin/Leptin hormone response.This is too complex to go in to here but, put simply, the normal stomach has a regulator which serves to stop one over-eating - 'full to bursting' - stretching of the stomach wall causes a secretion into the blood stream which shuts off appetite in the brain and induces sleepiness.
But with our narrow cut-down stomach tube the stretching effect is magnified, by even a small amount of food and so produces an over-shoot reaction.
Adjusting the timing and size of meals will have some effect but not a lot.
This malfunction is similar to our hypo (Insulin over/under secretion) problems.
Given time we learn to manage and live with it, more or less!
I think you have the best forum name of all. Your Iditerod comment made me spit my tea out. I wanted to like it twice but can't.
I do suspect it is (as you say) more to do with rhythm and intake. My sugar cravings are as ridiculous as ever despite my efforts to reduce sugar intake. One small sweet treat and I'm ready to scoff the lot.
I remain the child in the sweet shop, trapped in there forever. Allowed to look but not to taste.
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