I hate walking.

[mag123ben]

I'm told to go for a walk every day. I take the dogs. Usually 1/2 HR to an hour. My head hurts , my neck hurts, my vision is crap anyway. And my left shoulder hurts. I get home exhausted sit down and my feet and hands burn with pins and needles . Anybody else have the same thing happen .

[Wendrew]

hi mag, I take my boys out in the morning daily as well and have a lot of resistance to overcome before doing so. I hurt getting ready, going, but by the time I’m a block away I begin to loosen up and have begun to smile at the wibble-wobble of their butts as they walk in tandem with each other. Lots of folk talk about mpn as a journey. I’ve found it to be. Everyday I feel different. Nauseous one day, not the next. Sore and painful but not later in the day. Same for tired, etc. it’s difficult since I’m not used to my body being in control. I used to push through. But at 74 I’m beginning to learn how to accept my current reality and to make the best of it. Admittedly, antidepressants, therapy, a regular Tylenol schedule for the anches annd pain and continuing to educate myself about this condition helps. Just live in the day. All the best

[Spanelmad]

The boys are the only way I would walk for 1.5 hours in the morning. Most mornings it's hell. with the RA and the nerve damage fighting each other plus the hayfever symptoms.But watching the dogs enjoying the woods and sniffs ,the birds song and the sunshine make it a pleasure by the end.

I'm quite often asleep early afternoon though.

[saltmarsh]

Have to say, I agree with the previous posts. I'm 76 and totally understand what you're dealing with. I have a great dog who gets me walking by 7am every day. Before we leave I drink 12 ounces of water and do several different stretches. I also have arthritis but rarely take anything unless it's really bad - but I do smoke some marijuana every night and don't know whether it helps much. I'm pretty active during the day but by 3 in the afternoon my energy level completely evaporates. I've found that resting for a good hour does the job. And I've learned if I don't rest I can get physically ill. I'm pretty careful with what I eat and have significantly reduced my alcohol intake. I'd rather feel good.

It may be that you need to find the right mix that works for you. Additionally, I hope your MPN specialist is on top of all your bloodwork. I had to deal with iron deficiency a few years ago because my (now former) doctor dropped the ball and that resulted in me feeling like total crap for a couple of months.

[RedCardRob]

Have you considered Tai Chi. There is a form that a gentle stretching and breathing series of eight movements that can be done 10-15 minutes

[Ovidess in reply to RedCardRob]

Or Qi Gong--sort of Tai Chi's precursor. It's been wonderful for me, even when I'm exhausted and need to push myself to start. It is gentle yet gets the blood flowing. Try to stream some free lessons online or look for a community group. I suggest googling Nick Loffree or Nate Guadagni or Lee Holden. All friendly and excellent instructors.

[RedCardRob in reply to Ovidess]

Yes Qi Gong Is the essence of Tai Chi. I attend a class every week and feel so good. Recently completed the Ba Duan Jin eight movement of breathing stretching. The handy thing is with these you can do this at home as it doesn't require too much room..as compared to the formwork movements.I do recommend attending a class because it is with like minded people who are always willing to help and it's also good fun

[Phil1955]

hi I have ET 9 years on hydroxycarbamide I have moderate to severe spinal compression lower back and need knee replacement I also have recently had a heart scan showing the main LAD artery moderate to severe calcification I struggle to walk to but you have to push yourself to keep going I’m 68 always kept fit until the ET my Haematolygist says I’m 50/50 ET & PV

I have shoulder pain to I just take panadol

I

[azaelea]

Hi mag123, I’ve been on Hydroxy for six years when diagnosed E.T. I too feel back and neck ache and I’m totally breathless for first five minutes which wears off a little after a bit but I always feel washed out and feel as if I’m veering to one side or the other. I am 88 and recently can only manage a half hour walk. I agree with Wendrew’s comments about all the feelings we have to deal with. Just have to keep rolling on I suppose. Fran

[Inca in reply to azaelea]

Hi Azaelea,Know your feelings exactly…I am 84 have M F now for a few years,was PV for 10 yrs now Rux & injections & occasionally blood transfusions.I often feel I am on a ship. ,this way & that walking. I use hiking sticks to manage our fields I walk in with my 2 German Shepherds. When I return I am exhausted & breathless.The breathlessness can last all day I have had every scan there is ,my lungs are fine….it is just our M P N,From medicine traitent to consultant they tell me to relax more & remind me I am not 25 🤸‍♀️We just have to adjust to how we are.Best to you,just keep going .🥰

[azaelea in reply to Inca]

Thanks for your reply Inca! It’s comforting to know other MPNers have the same troubles. As you rightly say, we have to just keep going as best we can. My bloods seem to be under control with 500 mg Hydroxy 7 days but I feel my headaches and breathlessness are side effects. Not too happy about trying a change to Peg at this age. Best wishes to you and keep up the good work walking in the fields with your lovely dogs. 🥰

[Inca in reply to azaelea]

Best thing I ever did was change to Rux,had I been in U K I would not have survived as you know N I C E have just approved Rux recently. Hydrea began to poison me,I hope you stay ok with it. Good to know someone on here about my age still chugging on!!Maybe a change of meds will suit you better.Sure we will wobble & have dizzy heads whatever we take😢Best of Luck Azaelea.🥰 Sally

[azaelea in reply to Inca]

Nice being in touch with you on here, Sally. I think I might consider changing meds when I have my telephone check up with my Haematologist on 3 rd June. Do you have a Haematologist in France or are you in touch with one in England? It must be lovely living in France with time in England too. My husband and I love France and have been to many regions on holiday over the years. Can I ask which area you’re in? Best wishes to you and we will keep wobbling along.😵‍💫🥰 Fran

[Inca in reply to azaelea]

Hi Azaelea,We are Lot et Garonne,part of Aquitaine,in between Bordeaux & Toulouse.Its a lovely area with little Bastide Villages & quite historical as it’s the 100 year war area!Our pigeonnier used to be a look out tower in those days.Our nearest village has a really good ‘Maison de Sante’ & We have 5 Drs ,& all othe needs there.I have had my Dr for 14 years,& my nurse who comes to the house for pris de sang & the injections I have since I am now M F.Its busy with tourists in the summer but peaceful other times.We chose here at it’s the last place south suitable for horses ,having good grass in the early spring .Very hot summers now which is hard for me to cope with so I am indoors with AC!! Useful access to airports ,Spain & Pyrenees.Used to come to UKevery year but not since M F.Used to exhibit but now it is too much for me & we always took the dogs with us,daughter has remains of our stud & lots of room for humans & dogs so I do miss a lot about ‘home’.Hope your med change helps you .Rux stopped all the itching etc,but I have had several carcinoma probs. Good to chat Fran ,I always feel there are very few my age on the site!!Keep well Keep going!!Age is just a number!!,🤸‍♀️😊xxxSally

[azaelea in reply to Inca]

Lovely to hear from you Sally, with your background information and nice for us Octogenarians to be in touch. Sorry you progressed to M.F. But your medical care in France sounds excellent. I had breast cancer which was diagnosed a couple of months after the ET the same year, 2018. I haven’t had an opportunity to speak to my Haematologist yet about changing meds, I’ve had constant headaches still and have left a message asking if I can stop the Hydroxy for a bit to see if headaches go but am waiting for her to ring back. Your part of France sounds really lovely, especially with its history. I think the nearest part to there we have visited is St.Emilion which we drove to when staying further up on the West coast. We began our French holidays when our two boys were in early teens by going to Benodet, Brittany and have since stayed in the Auverne, Argeles, La Baule, Antibes, Cagnes, Menton and Cannes quite a few times. We do like the Riviera ( latterly when we flew instead of driving) but haven’t been back recently because of my health…..and our age of course. My husband is the same age also. Well nice to chat . I think it’s possible to have private messages by going on our Profiles and clicking “Chat”. Take care and keep plodding on. 😃👍💕💕Fran

[Inca in reply to azaelea]

Hi Fran ,Yes it is a good idea to do ‘chat’,to be honest recently I have not been on the M P N site much lately,have anew i pad as my much loved ancient one gave up the ghost & this one is really too clever for me !! With the M F starting last year I did get very depressed & find far less energy to keep going,Had several sculptures to finish so doing that took every bit I had so was ages managing to use this pad.Thought I might leave this world very soon ,didn’t want to leave work unfinished.!!Silly I realise now.How on earth did you cope with breast cancer as well as E T.We love Côte d’Azur ,Provence ,St Paul de Vence etc,had many hols there before living in France & since,it’s too much now to travel around ,suddenly age catches up doesn’t it..? Hot here just now,our daughter is at Badminton Horse trials (working) she organises big events,messaged to say it’s hot there so at last some good weather for U K. So I will try to do private chat.Keep well Fran,keep in touch.😊💕Sally