Hi all. I am to the point where I do not want to get out of bed. The exhaustion is overwhelming. They say to exercise but I can barely stand up at times. I try so hard to distract myself but cannot seen to do anything. I am so sorry to be a downer and hope the severity of this is unusual. You all are so upbeat and I bless you for that. Reading your posts is so comforting. Blood work again on Tues. Fungers crossed HGB is below 14.
Hugs to all,
Harlie
Harlie,try not to get downhearted,the fatigue is part and parcel of P V,it is ghastly.when your blood is sorted you will feel much better.I am in an exhausted state at the moment,just recovering from Laryngytis,which knocked the stuffing out of me! I have spent days sleeping and unable to walk about.It happens to all of us. We do bounce back tho it takes longer than 'normal' people.I really feel for you,been depressed when first diagnosed,believe me you will turn the corner,you have support from all on this site,we all know the dreadful dips.I send to you my warmest thoughts,keep your chin up,love and thinking of you,Sally
Hi Sally, Thank you so much for your kind words. I am so sorry that you are ill. Today has been the worst as far as the exhaustion. Really weird as tonight, it is 7:45, I feel stronger than I did all day. I forced myself to go out to a store. Just knew I could not stay in bed as I would have stayed there all day. We are scheduled to fly to Ireland next Saturday. I have been considering cancelling. One day at a time before I decide. Please get well quickly. Sending love n hugs and thanks. Harlie
Hi Sue. Thank you for your support. I forced myself to get to a store today. Feeling slightly stronger tonight. My diet is not the best but I am trying to change that. Hydrating has been an effort as I do not drink often. As for my Dr., I am in the process of finding a new one. I just really dislike the one I have. I need the right one next time. Thanks again. Everyone has been awesome. So happy that I found you all. Love, Harlie
Hi Charlie, you will find you will have good days/weeks and then you can feel like pants the next, all part and parcel of the disease I am afraid. I feel like death some days then bright as a button the next. Like you I don't know how people can follow a strict exercise regime when just walking to the shops and back makes me feel like I have ran the marathon.x
Clematis is right,Don't laugh,but I walk with hiking sticks,even in the garden,with dogs that each weigh more than I do,one knock would send me flying.5 mins is enough on the weary days,lots of water is essential,you get used to drinking it,becomes second nature. Keep positive,good luck with tests,thanks for your good wishes ,I am improving slowly but surely Luv and warm vibes ,Sally
Too right Jilly,but you made me laugh,that is just soooo much how we are .xxSally
Thank you all for your support and great laughs. I do not know anyone here who has PV so you all are making it easier for me to accept this condition. I do not feel alone as I did when diagnosed. Today, when I take my marathon walk, (a block or so), LOL I shall imagine you all rooting me on to the finish line. Hope the rain stops. We are having a London day again, seven days in a row. Will be overnight next Saturday at Heathrow so I shall wave hello as we are landing. Have a wonderful Sunday. Mother's Day here. Hugs, Harlie
Hi Harlie, I hope you enjoy your trip, the fresh Irish air will make you feel better (not too sure about the London air though! 😳)
We all have days when we feel like staying in bed, Due to arthritis I can't walk very far, but if there is a sale on at Marks and Spencers it's surprising how sprightly I can feel 😄.
Best wishes
Lizzie
Thanks Lizzie. Headin out for a walk. Will try my best to keep going. Wish I could see you all when I am in London but just for overnight. You support has been so awesome. Thanks again, XXOO Harlie
Oooooo.
Reading through the comments below my old China, I think you need to take more care of yourself and instigate a MASSIVE turnaround in lifestyle and diet.
1) PLEASE try and drink at least two litres of water every 24 hours. This is really really important. Not diet drinks, or sugary rubbish, but good old pure water which is going to hydrate every organ in your body - including the biggest one - your blood. I can't emphasise how important this is, really.
2) diet - cut any rubbish out, even if only for two weeks.
Nothing packeted, nothing out of a jar or a tin or ready made. I know, effort! It's so good for your body not to consume additives preservatives chemicals - you don't say if you're on meds, but when I was put on hydroxi I decided one lot of chemicals a day was enough. We don't eat anything pre prepared in a factory these days.
3) try and get out for a walk.
Easy for me to say, I feel well. Touch wood. I walk for at least an hour a day, longer of possible, and uphill.
Do try, it keeps the circulation going, even if just pounding a pavement for ten minutes.
Louise
xxxx
Thank you, thank you! I am going to change as much as I can. I have upped my water intake, desperately trying to stay out of bed and will make diet changes. I am not sure which is worse, the exhaustion or the depression. I am so sorry. I have never been a downer until this PV hit. Thank you again for your advice. XX Harlie
Hey, Harlie, you can be down as you want here - so many supportive people! It's Mother's Day here as well, and I was so tired I had to force myself upward for my dog's sake - thank Heaven for little dogs! I do hope your travels help; and if not, that the return to your own bed is glorious!
Happy Mothers Day - M.
Thanks so much for your kind words. I know what you mean about little dogs. Just forced myself to walk mine. Finally no rain! As tired as I was, I managed to do it. Without all the support I seriously would just give up and stay in bed. Thank you so much. XX Harlie
Hi Harlie, you can see you have got so much support already from these lovely people. Can I just add mine too by saying I totally understand how you feel. I know my hubby and some friends don't understand what fatigue is, it is not tiredness. It is when your arms and legs are like lead and your brain is like porridge (I am Scottish)! You have had some good advice re drinking and eating a healthy diet. I find pasta, nuts and dried fruit help my energy levels rise but you must have a treat too to cheer yourself up. It might be chocolate, retail therapy, spa treatment, etc and even though you are dragging your feet to achieve your treat, make sure you have it. Sometimes a coffee with an understanding friend can help lift the mood.
My GP told me to look up the website connected with mood gym which is to do with cognitive behaviour therapy. I know it's not easy to concentrate with a porridge brain but one thing I took out of it which probably sounds very simple to everyone else was that your moods and emotions are governed by your thoughts, so nicer thoughts should result in feeling better mentally. I think about my grandson and the next one who will be born in the next month and that helps me. I know it doesn't fix the fatigue but it helps me to cope with it better.
Lastly I send you big "e" hugs cos we all need these from time to time. Aime xxxx😺😺😺😺😺
Wow, you really do understand how I feel. I certainly have upped my drinking. Water that is. Haha I will see what my blood results are today. Fingers crossed HGB is below 14. May have to cancel trip to Ireland on Saturday if phlebotomy needed. As I told Sally, I am hoping for a pigeon day and not the statue. (old saying, some days you are the pigeon and some days you are the statue. ) Hope you have a pigeon day. Hugs, Harlie
Glad you are going ahead with your trip Harlie and that everyone has really helped to get you going.Have a great holiday,my family roots are Irish ,County Clare,they say there is a bit of Irish in all of us!!Beautiful country,hugs and best wishes xxxSally
Hi Sally, thank you again for your encouraging words. I am awaiting blood test results. I am afraid that if I need a phlebotomy tomorrow the trip is off. The exhaustion is so much worse after it. I have been so good with my hydration after all the supporting posts I have gotten. Drinking a bit over 2 liters a day. I never used to drink. I do believe it is making me feel better. Some days I am the statue and some days the pigeon, as the old saying goes. Hopefully today I am the pigeon. Haha I hope you have "a pigeon day". Hugs, Harlie
The fatigue is the worst thing about MPNs! At the MPN conference the Consultant speaking said she sees many MPN patients in clinic and say oh your bloods are good but the patients tells her they feel so terribly fatigue and really struggle to get through the day. The research they have done shows MPN patients suffer from more fatigue that patients with Cancers. They don't know why the fatigue is so bad in MPN patients but are beginning to listen to the patients not just look at the blood results. I'm much better running my HCT around 40, if it goes over 42 the PV symptoms set in. Hope this helps. Sarah LPS1156
Thanks Sarah. Great info. It is so good to not feel alone. Got my hemoglobin results today. 12.5 YEA! It has never been this low. This means that I will leave for London/Ireland on Saturday. I have been hydrating like a crazy person. Not sure if this is what made the difference. I will have it checked in Cork in two weeks just to be sure that I do not need a phlebotomy. If I do a friend has a Hemotologist that will see me. Today I am "the pigeon and not the statue". Fatigue surely comes and goes. Be well and thanks again. XX Harlie
Hi Kinsalelady, I hope you had a magificant time in Ireland and didnt spent too much time worrying about blood. I hope you don't mind me asking but I notice you talk about getting HGB tested rather than HCT? I just wondered how/why the difference in approach between UK and our across the pond cousins? We have phlebotomies if our HCT raises about .45 (for men its higher .50?), often my HGB has been perfect but my HCT not so. Can anyone shed any light? Jo xx
Hi Jo. My platelets are apparently ok. My HGB tends to run high. I have to keep it under 14. Thank you we did have a great time in Ireland. Got home last night. Have a bit of Jet Lag but that's ok. Will have my HGB checked this coming week. Hopefully not too high. Have been hydrating like a crazy person. Hope that helps. Thanks so much for your good wishes. Be well. Sending love an hugs from across the Pond. XXHarlie
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