Any suggestions how to explain to people how you are feeling? I've recently been told I "just need to get out for a walk and do a bit more every day" or to "work on your core strength".
I get exhausted so quickly, getting dressed exhausts me and I have to lie down to recover my breath. I do attempt some armchair exercise every day. When I tried to explain I was told "doctors don't know anything" and I shouldn't "give in".
If an explanation of the science of MPN fatigue does not educate someone, then you are likely confronting willful ignorance. You have different options for dealing with willful ignorance depending on who it is and what the circumstance is. Some people should just be ignored, even cut off of they are too aggressive in their ignorance. It may help to understand that some people have a deep seated fear of cancers and other illnesses. Their underlying fear manifests as insensitivity and an unwillingness to learn. Learning would reveal their underlying fear.
There is a big difference between simple ignorance and willful ignorance, Those who are willing to learn will benefit from your knowledge regarding the impact cytokines and other feature of MPNs have on people. You will have to determine which form of ignorance you are dealing with and respond accordingly.
You might find the Spoon Theory useful both for yourself to cope during the day and also to explain to friends the limitations of a chronic illness. Just google it and you'll find a lot of sites explaining it. My physio daughter recommends it to her patients and explained it to me. I now accept that for instance I can perhaps do a bit of cooking in the morning but not the housework the same day. If I have a hospital appointment that is it for the day. Be kind to yourself - it is so frustrating not being able to do what in the past we took for granted but I and the rest of the family accept my limitations now. We try and plan occasional treats, but factor in a lot of rest. I recognise having to rest after getting dressed.
Hello and thank you so much for this comment . I have just read The Spoon Theory .. and it makes so much sense . A great recommendation.. 🙏
It's certainly a useful shorthand in our family when I say I'm out of spoons. It's sometimes pointed out to me I've used too many when I'm breathing like a steam train after usually trying to do too much gardening. - have set myself a target and stupidly not compromised.
I understand. I used to be a morning person, 7 days a week up by 5:30 to get ready for work or school or whatever, I always get up at same time ready to start the day. Then retired and followed the same routine just fine until ET. Overwhelming fatigue finally explained. Still get up early if not earlier than before but usually have a slow morning. I get some energy mid afternoon which is when I get things done. Still have to pace myself and don't take on more than one demanding task per day like walking/jogging with dog for a mile or more then go to grocery store or expect to do any heavy housework or yard work, etc. I also have to plan around drinking ridiculous amounts of water that do help me feel better but make me stay close to restrooms. I inherited anemia via different gene and ET only makes it worse. If I am pressed for any reason why my routine has changed, I simply say I am anemic that is hard to treat and I need to respect the limitations it places on my activities. I have not run into anyone who argues over that. If/when it happens, I am not going to cater to their rudeness and ignorance so drop it. I do not broadcast it's blood cancer nor try to explain the science behind it, nor details of my journey outside of spouse, my children and this web site. It's my business.
BTW I have had 2 iron infusion IVs since diagnosed. It's because the iron goes directly into blood vs pills that because of my inherited anemia the iron is not absorbed very well. I feel really really good about an hour later and it lasts for a couple weeks. Lower back and joint pain disappear. Reality returns but the infusion offers a wonderful temporary reprieve. Have your blood tests shown signs of anemia? It's worth checking as there may be a way to help find some relief. Your care team should be able to offer some insight. Good luck and stay safe!
I am seriously anaemic and have had three blood transfusions so far. The iron IV made me very poorly but the transfusions did bring my Hgb out of danger levels. At the last test my Hgb was 90 (transfusion at below 80) and ferritin was 1.
Hey, i describe it as walking through toffee. And I don’t think anyone can truly understand until they have experienced it. It’s not tiredness. My husband recently had radiation treatment for prostate cancer (he’s all done and good) and expressed that now he understands what I feel.
I don’t get it all the time now, and (sorry to repeat what others are saying to you) I do find that drinking enough water makes an huge difference, and doing regular exercise (no marathons though) helps. But equally, I try to rest when needed and try not to over extend my days activities, which isn’t always possible as my life is busy.
Take care, little bit at a time, and I do get it, as I’m sure most people on this forum do.
have your anaemia issues been properly resolved?
Maybe a good time to have another blood test: full iron panel, folate, B12, Vit D, thyroid, FBC.
Issues with any of the above can make you feel terrible and tired all the time.
You can also do these tests privately with organisations such as Medichecks or blue horizons . Very easy to use in the comfort of your home.
I am in rural Scotland but my GP arranges regular tests. No resolution to the anaemia except it is not GI (after 2 years of tests repeated several times). A discharge from GI after the 2 years and a referral to haemotology - who said it was a GI issue and also discharged me after a BMB that didn't happen due to no anesthetic being ordered.
So what is your gp actively doing about your anaemia? Do you have a treatment plan?
Can you ask your gp to do another blood test,( testing all the above.) Good to compare it to your last few set of results to note any changes and in which direction they are occurring.
Failing that, just look at those 2 reputable companies I mentioned. The test is posted to you and you post it back. They email you the results with a report from a doctor. Easy to do finger prick blood test. These ones are used a lot by the Healthunlocked Thyroid and B12 deficiency groups . I have also personally used them many times and they are very good and quick. These other 2 groups are also excellent at helping you understand the results of these tests, if you need help. NB: Being in range is not the same as being optimal for good health.
Obviously best to have gp on board but if they are reluctant and won’t test all that needs looking at, then you know you have options.
Best of luck xx
I have an appointment to see a private consultant in December. Until then there is no plan and no treatment. The hospital have abandoned me and the GP can only do regular blood tests and wait until I am eligible for another transfusion. She will then have to apply to the hospital for permission to do this. Last time permission was refused and I collapsed less than a week later ending up in intensive care.
Do the companies you suggested cover Scotland? I will investigate but many companies do not cover rural Scotland due to delays in getting samples to them.
I've checked out the companies you recommend but neither cover this area to get samples. To have the samples taken at the nearest place would involve two days of travel plus an overnight stay which is not an option for me 
That is a shame. Is there a phlebotomy service that might be able to come to you and then post it on your behalf at a suitable location ? Obviously more expense which would need to be considered.
No, no one covers this area and there isn't a phlebotomist at our local hospital. I asked at the pharmacy but as I am on a blood thinners they won't consider it. NHS blood tests are taken by a skilled nurse in the GP surgery but they don't do private work. Also I had a full array of bloods done a couple of weeks ago and all was normal except for the FBC / CBC. I think there were 8 vials of blood drawn so quite a lot!! Blood tests here used to be flown to the lab for analysis but that is now "too expensive" so goes by road and some are lost or spoilt along the way.
Last time bloods were supposed to be done at the hospital several people tried and no one managed. In the end I was so sore I told them I had had enough. My hands were like melons where they had tried at the back of them.... the final straw was when a medical student did find a vein and put the needle all the way through.....
Poor you. You really seem to have tried everything humanly possible 😵💫
Wishing you all the very best and hope you get some answers and solutions very soon 🙏
Do you perhaps take any supplements?
Were your vitamin levels at an optimal level, I’m thinking above halfway through range esp for B12, folate or were they more towards the lower quartile/ bottom range? (If they don’t give you the reference range , you need to ask for that.)
Eg: On thyroid HU group it indicates TSH above 2 suggests thyroid might be struggling, even though the upper range is quite a bit higher. Were you tested for thyroid antibodies too?
If you think you have any issues with levels, you can of course join other relevant HU groups for their thoughts on your test results. Often there are also Drs in these groups as they are human too and suffer from these things as well, but then have the advantage of their medical knowledge too.
Xx
Yes, all been checked. I only take a prescribed calcium and Vit D supplement.
Hopefully a little K2 to direct the calcium into your bones as well xx
K2 reacts with warfarin so a no go.
👍
I am so sorry to hear about your fatigue. It has had a big impact on myself these last 2 years . I wondered if my story might give you some hope. I was in denial about my fatigue (to myself) and was trying to keep up a full time job/ career. I collapsed twice at work and felt terrible all the time but never had sick days. I had to give up my amazing job this April 🥲 ( I was forced to give it up but that is another story) I was then lucky enough to attend a cancer fatigue clinic for 5 months. It helped me and my husband to understand my body and my limits. It was so mentally freeing to have people who understood and could explain it to my husband. They set me targets that I thought were impossible but eventually I achieved them and it felt so good to see an improvement however small. For example, I was sleeping 18/ 20 hours a day and my final target was 20 minutes power naps!or just 1 activity a day. Which 6 months ago was impossible but now is easy to achieve. I am still not working which is scary and I know that I probably will never work full time again but I feel like myself and now know how to read my body and enjoy my life without drugs ! I have not felt this happy in years. Ps I am hoping to get a part- time job soon! So life may never be the same but is good!
That is good to hear.
I gave up work 12 years ago to become a full time carer for my parents. My Dad died 27 months ago and my Mum is "difficult". I struggled on until 2 years ago when I finally acknowledged that my symptoms were not menopausal and having to sit down part way up a flight of stairs was not normal. I now pay for a care company to help with Mum but she is very good at sabotage and causes so many problems.
My then GP was great but has since retired. The new GP is still on a learning curve.
I have no diagnosis and no one to ask. Anaemia is a description of some symptoms not a diagnosis. The local hospital is awful but won't refer out of area due to budget constraints so patients pay to go private. A 4 month wait for a private consultation tell you all you need to know....
hi. Whereabouts in Scotland do you live? I lived just outside Appin and received treatment in Oban and also in Glasgow. The health services even paid for me to fly to London to see Prof Harrison. It sounds as though much has changed in the 8 years since we relocated to England. I am sorry to hear that you are dealing with all these challenges and I hope your appointment in December gives you some proper answers
Good luck and very best wishes, Jan
One thing I have said that seems to resonate with some people who cannot understand why I have to take a nap each day and have much less energy than previously is this: I ask if they have ever been so sick (e.g., flu, Covid) where they just could not get up and work but felt like they needed to sleep. That is what it is like for me with MF, but I feel like that every day and there is no way around it. In fact, the biochemical mechanism for why we feel that way is exactly the same as that for someone who has a bad case of influenza. Neurologists refer to it as "sick sleep syndrome".
I agree if TLJ-1 it is the way I explain it to people and they seem to understand it then. I have noticed that stress makes it a lot worse and i hope you don’t mind me saying but it sounds as if you have a lot on. Talking to people, friends, professionals or charity’s such as cancer uk can really help too . Plus of lots of water and gentle exercise can really make a slow but gradual difference. It may not seem it at the moment but it can. I wish you the best on your health journey!
Fatigue is awful and I can sympathise entirely. If someone else hasn't suffered from it, it is hard to describe how it affects you. You should just do what you feel able to do. Never push yourself too hard as it makes things worse. If someone doesn't understand then that is their problem and not yours. If you feel able to do some armchair exercise do it but if not, there is always tomorrow. Fatigue is a well known symptom of MPNs so if someone is ignorant about it, then just say to them that it feels like you are a balloon with all the air let out really quickly. If they don't understand, at least it will make them smile.
I have tried the 'just do a bit more each day' approach and I am so frustrated that it doesn't work that way anymore. Fortunately, my family doesn't question when I say I am too tired to continue, and friends seldom question it. For me, describing the fatigue as walking through molasses helped, sometimes it is only ankle high, sometimes it is knee high.
I think TLJ-1 explanation would resonate the best with people, most of us are familiar with the fatigue of a bad cold or flu.
Also as to the "doctor's don't know everything" I reply "absolutely, but they know more than thee and me in this particular area."
It's my mother, sister and mother's best friend who keep telling me how to get better. A lot is New Age stuff with crystal healing and chanting chakra so I just usually nod and then ignore the crystals laid round the house and my bed.
Yesterday was a bad day with a faith healer brought by someone. Today is a new day so onwards as best as possible. At least today I can open a window for fresh air now the storm has subsided.
Mum has managed to pull down her curtains and tear her duvet cover. The carer has changed the duvet cover (with a lot of sighing and complaints) but the curtains will have to wait. Mum must have pulled herself up on them....
You also have to help with your Mom? That can be rough. At least their help is crystal healing and chakras - useless, but not dangerous of themselves. The faith healer would push my patience though.
I was so sorry to hear about your fatigue. Everything posted here is spot on so I won't repeat. I went thru a bout of anemia a few years ago - simply awful and a bit frightening so I know where you're coming from. Short of getting the comprehensive bloodwork identified earlier, I'd consider taking an iron supplement for a couple of weeks. I took a 65 mg capsule once a day and it helped. Also switched doctors and going forward there haven't been any more issues with anemia. Keep in mind - I am not a doctor but just passing on the info. Someone needs to order a complete panel of bloodwork for you, otherwise it's a guessing game. Wishing you good luck navigating this problem
Been there with all types and brands and iron infusions plus dietary approaches and I just get sick with them. What one of the lovely and most experienced nurses called a paradoxical effect.
There is no other GP locally but until the hospital deign to become involved again we are stuck. The GI consultant is really good but as it is not a GI issue there is very little he can do except email the haemo, who does not respond. I have a formal complaint registered but no idea how long a response will take as they are "very busy". My MSP is also in the loop but getting no response either.
Can you ask for a second opinion.
I am under the Western General in Edinburgh and have found them excellent together with their Support Nurse.
Leonardo
I have an appointment with a private consultant in December. To get an NHS Scotland second opinion the local haemo would have to agree and she says it is GI even though two GIs have said it isn't
Do you stay overnight in Edinburgh? I think I would need an overnight stay but am already struggling to find a coeliac and wheelchair accessible hotel or guest house. I don't drive and public transport is a single bus journey three times a week here.
That's truly awful. I'm sure there are many of us who can appreciate what you're going through physically but the medical support sounds terrible. Good luck and hoping you get some relief soon.
good grief! Suggest you download the symptoms and email them to everyone. xx
I am.new to this forum and the 1st post I saw that made me feel like someone knows me was yours. I understand your fatigue so much. I had to give up my job in August as I just physically could not cope anymore. The fatigue is truly awful. I have also had the remarks from people, it must be nice and are you not bored yet. I am trying but boy it's hard to ignore people's ignorance. If our body is telling us to sleep we must sleep. If we need to rest we rest. My consultant explained it like other people's blood is just like water. Mine is like a thick chocolate milkshake and it is struggling to get through a paper straw. It seemed so silly but that is how I explain what is wrong with me. I really hope you get some more answers and that you are feeling more settled soon x
i’m not discounting what you’re saying because I’ve been there and so have all of us. For a long time I felt very weak and out of breath. I felt that my legs had sandbags attached to them. When I went to see a transplant doctor in New York this past summer, she had me see a gerontologist. He told me to try and exercise more. So I got into a routine and I walk about 2 miles twice a week and I go to a chair yoga class once a week. The first couple of weeks were really hard, but I forced myself and I’m feeling so much better now. I walk with my partner and he’s noticing each time that I’m walking a little faster and with a little more balance.
I hope you find some relief soon.
I wheeled a few yards with a physiotherapist. Woke up in the back of an ambulance as I had collapsed. I collapsed 3 more times in hospital during exercise assessment. The haemo refused to see me and ignored the intra-hospital referral. That was the second (no) contact I had with her and our relationship has become worse since then. The first interaction with her was when she left a message saying she had cancelled my blood transfusion.
I do armchair yoga at home but never finish the exercises. Being rural and not driving (I was told not to drive after my collapse) going to a class or swimming (which I love) is not an option. I am terrified that I collapse again.
I’m so sorry to hear that. That sounds just awful. And I’m sorry I wasn’t more understanding. I sincerely hope that you find some answers soon.
I am going to try and start walking a few miles a week also. I must admit I do like being out with my dog. I am.hoping like you I can get into a routine of it.
Tell them they don't have your illness and to mind their own business. There are such know-alls around.
It must be lovely if you can get out and walk for walking's sake, but I understand the exhaustion of just getting dressed. I consider all these little chores to be exercise. After all, whatever you do that you have to use more energy to manage it is going to do you good, And I'm sure you've heard about "pacing yourself". We have to. Do a bit of floor cleaning - rest. Do the washing up - rest. You know how it goes. There's plenty to do on my laptop, never mind making beds.😊
I feel your pain! Fatigue is hard to explain because we usually “look” pretty normal. I explained it by calling it stamina. I can start anything I want; I just cannot finish. My dr, who is an oncologic hematologist, learning about MPNs, reminds me that even when my platelet count is good and stable, they cannot carry as much oxygen as you need for the task at hand.
What has helped me is shallow breathing - I know it sounds counter-intuitive but shallow breathing engages your diaphragm, making more oxygen intake in your lungs. When we all were newborns until about age 3, that’s how we breathed until we were encouraged to “Take deep breaths” but not taught how.
Your true friends will empathize as they observe your struggles - explain your limits and keep doing things you like. A little extra effort will pay off. Those who don’t empathize are not worth the stress. You do not owe explanations. I like Hunter’s term - willful ignorance.
For me, an under desk elliptical machine has been a lifesaver. I can push myself for a short period but slow down or stop when I “Hit the Wall” - stamina has been drained.
By the way, I am female, 74, diagnosed at 69, PV JAK2+ and on ruxilitinib for 4 years.👍
Good to talk 
Referral to a specialist 
Hours at Work changing 😞
Newly diagnosed with ET. How to afford Pegasys???
