Thanks for your advice. The problem is not knowing what to expect.
Paul
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Yes, @Paul2 you hit the nail on the head there, I also hate the not knowing.
Be kind to yourself and please do keep posting
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I had my Stem cell transplant in 2015 and am still utterly exhausted every day. The chemo and radio destroyed my hip so I now have avascular necrosis, lesions on the femur, holes in the pupils in both eyes and osteoarthritis. I’d had 14 years on and off of both Chemo and Radio but feel more tired now in remission than I did before. Is this normal?
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Oh @House what a catalogue of symptoms you have had since your stem cell transplant in 2015.
I am so glad that you have found us.
It must make every day life very difficult for you.
Do you have any support?
What do your medical team say?
I have found that this is the one pl;ace where I can say how it really is for me.
The Blood Cancer UK support line is there for you on 0808 2080 888
I will copy your post to the Blood Cancer UK nurses too @BloodCancerUK_Nurses
Please do keep posting as I look forward to hearing more about you.
Take lots of special care of yourself
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No support (other than my wife) I am autistic and all my social worker care was removed 2 years ago as the bosses told her before she left the job she was to “get rid” of everyone from her book that wasn’t on injection-based anti psychotic meds.The NHS centre was reducing their number as they couldn’t cope. I was culled.
They said some people after their Stem cell transplant are fatigued and for this there is no cure, I wake up tired but being on CPAP it’s hardly surprising too.
Thank you lovely x
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Any tips for the feeling of guilt when you having or had, a “crash day”?
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Dear @Paul2,
Welcome to the forum, I am sorry you are struggling at the moment. As this has been such a sudden change I would encourage you to reach out to your medical team asap, this could be a change in your bloods that needs addressing or another cause that needs to be investigated. It might be there is something that could help you feel better. Do you have a clinical nurse specialist you could call to talk through things with? Alternatively I agree with Erica that you should contact the GP for an assessment. Do let us know how you get on? It would be great for you to get back to your walking and enjoy your holiday.
Best Wishes,
Heidi J (Support Services Nurse)
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Dear @House,
Welcome to the forum. I am so sorry to hear how much you have been through and the problems that you have been left with, it sounds like the fatigue can be a real struggle. Do scroll up on this thread and read through some of the great recommendations. I do think you should reach out to your GP or your clinical nurse specialist (If you still have access to one?) to discuss how you’re feeling and whether there is anything else that can help? Perhaps they can refer you back to the social worker? It is a shame they took this away from you.
Do contact us on our support line if you would like to talk 0808 2080 888
Best Wishes,
Heidi J (Support Services Nurse)
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Hi @House it sounds as if you have had a difficult time.
I think quite a few of us have fatigue,
I have learnt to get to know it and to manage mine.
I have realised that mine can be triggered by me overdoing it emotionally, psychologically, physically and what personally stresses me.
Over the last few years I have realised how I benefit from fresh air and reasonable exercise and from being able to walk a few yds, I have built it up to a few miles, slow and steady wins the race.
This means I sleep better and feel better when I wake up usually. I make sure keep to a good sleep routine too.
Sometimes I do need a nap or duvet dive.
I do eat a balanced healthy diet, but with treats upon occasion.
I find it is very scary when people tell you that there is no ‘cure’, but I have found that I can manage mind, but it has taken me time to get to know mine.
Please do keep posting how you are doing and be very kind to yourselves.
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Hi @clickinhistory You ask about tips for the feeling of guilt after having a ‘crash day’.
My feelings of guilt go back to childhood and my father telling me I was lazy if I sat down to read.
He died many years ago but my feelings do not go away.
So I accept that the feelings are there and now I can chose self care and to be kind to myself.
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I call them my rest days
I’m not feeling guilty for anyone 
my body is doing amazing things keeping me alive so it deserves rest days.
Why do you feel guilty?
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@Erica childhood fingers still wrapped inside our present.
@2DB divorce lawyer, ex wife stuff to sort, training courses to sort out or do, editing, rebuilding the business, talking to friends, sort out financial accounts… oh look a dog being washed on YouTube, a butterfly taking on a bee and snooze… 
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Hello @Paul2, apologies for not responding till now. I’m really sorry to read of your diagnosis with myelofibrosis (MF). I was diagnosed last year with a similar but different Myeloproliferative neoplasms (MPN) to yours, Polycythaemia vera (PV), and unfortunately know the fatigue you were experiencing very well. I wonder, has it continued? Did you get to speak to any specialists about your fatigue and shortness of breath? I hope you’re doing better.
Fatigue was and still is the worst symptom I’ve experienced from Polycythaemia vera (PV). It was actually pretty disabling for me for the first couple of months after I started treatments, namely daily hydroxyurea (chemotherapy to disrupt the blood overproduction) and aspirin (to thin my blood). I could barely get through a morning without being exhausted, let alone a whole day, and I had to take a break from my beloved hiking as I could hardly plan the routes nor drag myself out.
A couple of research-based suggestions I’d offer are pretty simple to include in your day and for me helped a lot. Perhaps this is obvious, but getting bright daylight into your eyes early in the day will help regulate your circadian rhythm and thus your sleep. This will boost energy once you’ve got into a good sleep routine. Using daylight bulbs at home and using a daylight lamp helps too, and a bonus side effect is that they also help if you experience SAD (seasonal affective disorder).
Another thing I never thought would help but has become a habit is doing slow exercise like yoga, tai chi, Pilates or similar. I now do online yoga sessions a few times a week in front of the telly at home. These gentle forms of exercise help build up muscle strength, improve breathing, and undo some of the fatigue for me. Unsure how as it seems counterintuitive to do exercise to gain energy, but it does work.
Don’t know if you’ve looked around Blood Cancer UK but they have some great information about MF and other MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
If you look around the forum using keywords relating to your queries, you’ll likely find others with MPNs and fatigue who know what you’re living with. Do please keep us posted about how you get on, we Myeloproliferative neoplasms (MPN) survivors are not alone here! Hope your holiday is restful and enjoyable.
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Hi all, I haven’t posted for a while and thought I would having received the August newsletter.
Managing fatigue.
I divide my time between London and Cape Town. I consulted a Cape Town oncologist and was out on a vitamin regime, together with two IV infusions, the C-Myers and C-Marais. Both have high levels of Vit c, all the Ds and Bs, glucathon and more. I really do feel almost normal again without fatigue, boosted energy and able to support my weight in Pilates and weight bearing exercise.
Magnesium for sleep and muscle cramps. Sutherlandia,Resveratrol, Ashwagandha and a high strength probiotic,because clinical studies have shown that Chronic myeloid leukaemia adversely affects the gut biome.
I also had sessions under a photobiomodulator which professional athletes use for cell renewal.
A great side effect is the Vit C and glucathon which act like an aesthetic treatment. My skin is thicker, has fewer wrinkles and glows. I’m told how well I look and asked if I have had Botox or fillers recently.
It may all work, it may not, it may not work for you, but it has for me.
Obviously it’s not available on the NHS and it can be expensive. Blood tests are essential before starting to show your deficiencies. Good luck and keep well!
Hi I have Large Granular Lymphocytic Leukaemia and am on watch and wait, I work full time and in the evenings I feel so tired and can literally fall asleep mid conversation - I hate it and feel so unsociable, I take vitamins and go to an aqua aerobics class at the weekend as its the only way I can exercise without pain, but don’t know what else to do to fight the fatigue? R
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Thanks @PoppyDarling very interesting to hear how another country treats a condition and as you say obviously it is not available on the NHS in this country and medical advice from all our different consultants is always so important before taking any supplements etc.
Look after yourself and great to hear from you again
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Hi @Rhi welcome to our forum and I think fatigue is probably a side effect of many blood cancer.
I attach the link from the Blood Cancer UK website
Blood cancer and fatigue | Blood Cancer UK
Personally I have another blood cancer but I have got to know how I tick over many years and some people keep a cause and effect diary which is a great idea.
I know feel that reasonable exercise and fresh air helps me, I am a nosey walker.
Aqua aerobics sounds great and social to me, I am a Pilates girl.
This is personal, and not medically based, but I do not feel I fight it, and learn to manage it, and try and de-stress my life and pace myself.
I do not do much in the evenings. However you are working full time and running a house etc. Be kind to yourself and please do keep posting
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