I'm new here and am so happy to read what others have written and I can identify with. I've always been very active. I have been diagnosed with ET and PV. Has anyone out there experienced sudden severe fatigue .. it's as though the battery completely ran down. I feel like I can hardly put one foot in front of the other or it's like walking through deep water. Aside from other symptoms of both blood issues that the toughest to deal with for me. If I'm just too tired to go somewhere, I'm sure no one really understands. Anyone else out there and if so, what do you say to your friend when you just can't go? Thanks - I'm really not a whimp tho sometimes I feel like one. I'm still working as a part-time "lunch lady" in the school system and I'm 80.
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fran57paul
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Hi fran5 it's so hard when people haven't had fatigue like this for them to understand, it's not like being tired and it's not being wimpish, we have to listen to our bodies and friends and family may not understand but will have to put up with it. I hope you feel up to going out soon. Mel x
Hi Mel, Thank you so much for your encouragement. Most times I can push through but sometimes it's mighty hard, and you're so right when you say that it's not like being tired, it's fatigue. There's a big difference between the two don't you think? How are you doing? Fran
Hi, I know just what you mean. I've explained to friends that I'm useless by early afternoon and often need to lie down for an hour. They're very good and we now socialise at lunch time but I miss long walks and outings. I find always having water with me helps, a few sips when I'm out and struggling to get back to the car or feel a sudden need to sit down wherever I am does help for some reason. Listen to your body I guess. Best wishes, Frances.
I've never realized how important water is until I started hearing about it through this forum. Thank you. I know I haven't been drinking near enough water and am going to definitely try to fix that. Thank you! Fran
Hi Fran,You are experiencing exactly what happens to me.Our fatigue is not a normal tiredness,it is hard to explain,and impossible to keep going at its worst.I have to rest ,afternoons usually,sometimes sleep a couple of hours if I have worked in the morning.I think my real friends accept how I am ,as all of us are getting older we meet up at lunchtimes,I notice that other people who are otherwise quite well,rest in the afternoon.Keep well hydrated Fran,esp when it is warm,work when you can and rest when you must.I am 7yrs P V nearly 8 yrs.....now late 70s,my work and my dogs keep me going ,lucky too that hubby is very supportive,he notices my 'brick wall' coming before I do esp supermarche shopping...! Have on occasions 'fallen' into trolley!!!!!Keep going. Best wishes.
I'm so glad I've joined the forum. I've never done this before and can't believe how much it helps. Such words of wisdom are so appreciated. I like what you said about a "brick wall" as that describes what happens so clearly. I will keep that phrase in mind and to me that explains it so well. Many thanks, and keep on keeping on. Best to you, Fran
Hello Fran5, I know exactly what you mean, I was diagnosed with PVJAK2 positive in December last year and was told on my last hospital appointment I possibly have ET too. The exhaustion is unpredictable and hits me like a ton of bricks and the only thing I can do is lay down and rest or even go to bed. We really do have to listen to our bodies. Regards Maggie-ol
Maggie, Thank you for your comments. The exhaustion is so very unpredictable and most times for me it's mid to late afternoon. I don't sleep good at all and if I get 3 hours sleep, I'm lucky. You're right, too, that we have to listen to our bodies even though sometimes I want to ignore it. I hope you have a real good day today. Thanks again, Fran
I try and explain that it's like someone has flicked a switch inside me and turned off my energy. I am afraid unless you experience what it's like they will never get it. My wonderful hubby bought be a beautiful mobility scooter because I was becoming withdrawn and wouldn't go out because I knew that in no time my legs would feel like lead and I just couldn't go on. I am only 55 (notice the ONLY) but sometimes I feel way older than my years. Now with my blue rocket (my mobility scooter) I can enjoy a lovely ride through the park to feed the ducks and go into town knowing that I won't get tired.
Jill, thank you for replying. That's wonderful that your hubby got you a scooter.
My hubby and daughter have so much strength and energy (workaholics really) and are working all the time on some project. I guess you can't explain the unexplainable so am learning to live with the fact that no way can I keep up with them. As it is I think for my age (80) I do okay still working part time and very involved with church. My son has schizophrenia so that can be pretty stressful at times. I've had two heart attacks and don't want the third one.
Enjoy your scooter and getting out more. xx00 Fran
Hi Fran and welcome to our forum, so pleased that you have found us and you can see by the replies you have had that we all understand how you are feeling, the fatigue is a horrible symptom and one that we all get in varying degrees. It can be difficult to explain to people what it feels like as it isn't just being tired through lack of sleep, it's much worse, but once people around you understand they will be ok. Best wishes, Maz
What a great group of people this is. How comforting to know that the fatigue is not unusual and others experience the same thing. Somehow it makes it easier to listen to my body. Early afternoon seems to be when the fatigue sets in. Mornings are when I get most things done. I'm learning to accept that my mind and my body don't always agree. Thank you! Fran
Hi Fran, I know that feeling of mind and body, and it can be so frustrating when you want to get things done but just can't because of the fatigue, so now when I am full of energy I whizz round like a mad thing and have accepted that when I am fatigued that I just have to give in and sit down with a book or do some knitting, as long as it's not a complicated pattern or it ends up looking a bit wonky. Maz
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