I have a wonderful daughter with ET. She suffers with the overwhelming tiredness and itching skin which is worse after just having had a bath or shower. She takes (as most of you do) a multitude of medications including chemotherapy to keep her platelet levesl as low as possible but always looks very well even though she doesn't feel well. When meeting family or friends she is always told how well she looks and because of this some members of her immediate family appear to be in complete denial that there is anything wrong with her. It's very upsetting for her and me as her mum that there is a lack of understanding of her health condition. Are there any of you who also suffer with the same lack of understanding? And if so how do you deal with this? In particular the overwhelming tiredness you have to endure. My daughter has my full support but I find it difficult to explain to others that she has a hidden illness and just because she makes an effort to look well this does not mean that she is not unwell.
From a concerned and worried mum.: I have a... - MPN Voice
From a concerned and worried mum.
Morning,
I have PV and an 33. I look really well and have really good days but equally bad days. I see family and friends and they mention how well I can look, which makes me feel better nothing worse than being told you look like crap....but yes on the opposite side of things, I want to look like crap just so people can see how unwell I feel at times. I get very very tired am also on the Hydroxy along with a few others, I have Liver Cirrhosis and Portal Vein Thrombosis also. The itching can be solved by using an oil wash/shower gel, then following it with a cream, ensure she stays moisturised, Deprobase cream is good, you can get that from your doc too, just stay moisturised. I exfoliate in the shower a lot....2 fold really, to ensure I can have a good old scratch without causing injury and to take off any dead skin that may cause more itching.
The tiredness can be tamed, its a will power thing more than anything else. She needs a routine, try a 40 min sleep no more as she wont sleep well at night, drink a minimum of 3 ltrs of water a day and try to do 30 mins of exercise a day, I'm not suggesting running, but even a walk. I do run myself but it takes every bit of will power I have to get going....plus I want to sleep longer but know I will suffer and I have bouts of insomia at the best of times.
I do feel at times that my work collegues especially think I am taking the mick, when they see I look ok, I can run and I can now eat. But it has taken me since february when I was Diagnosed with an MPN to figure out what works for me.
I live buy the seaside at weekends with my partner and his daughter so am out in the fresh air as much as possible come rain or shine and that works wonders. During the week I work in London and the pace moves too fast!! lol.
Please tell your daughter she is not alone there are people around with a sholder to lean on and an ear to listen. Try getting a buddy for you and her maybe, speak to Maz at MPDVoice. As a parent it must be lonely. I do feel sorry for my mum, I try to give her as much information as possible, she never believes me when I say I am ok though. Your daughter will be absorbing your strength and will take heed from the fact you understand. Just be there for if she ever needs a hug, but don't ever be afraid to say whats on your mind or look for help. We all suffer at times, family or friends.
Good luck to you and your daughter.
Chelle
P.S if you can get to attend a forum then go. I took my parents it was great for them to have the chance to ask questions....
Hi mums2worry, I can completely understand how your daughter is feeling, as will others on this forum, this is something we hear all the time at the various forums we have held over the years, and something I have experienced myself, I have ET. As MPNs are not so well known as other diseases it is very hard for people to understand much about our condition, it's hard enough for us to understand it and we are the ones who have them. We have a summary in our ET & PV booklet which might help to explain to people what it is: "I have a condition where my bone marrow is not working properly and this affects the number of blood cells it produces. This can affect my body in several ways and sometimes makes me (list your symptoms here : e.g. I feel so tired, I experience a lot of pain etc). I have good days and bad days and sometimes I may need (explain what you need here - e.g. a bit more support with my day to day activities; someone to talk to; someone to come to appointments etc)."
I can send you a booklet which has a lot more information on ET and more tips on how to explain it to people, if you would like me to send you one please email me at maz.cd@mpdvoice.org.uk with your postal address.
All the advice from Chelle below is very good and, exercise can help with the fatigue, even if it's just dancing around to a song on the radio for a few minutes. And the advice about helping the itch is also very good, we have some more advice on our website mpdvoice.org.uk/living-with.... If you feel having a buddy for both of you would help please email at maz.cd@mpdvoice.org.uk and I can send you the details, having a buddy can help as you will get support and advice from the perspective of someone who really understands what it feels like to live with a MPN. Also as Chelle says, try coming to one of our patient forums, our next one is on Sat 28 June in Manchester, there are still places available if you want to come along mpdvoice.org.uk/get-involve.... The next one we have confirmed at the moment is in Newcastle on Fri 10 October. Kind regards, Maz
No please don't tell me I've missed a meeting in Newcastle ,I've waited so long for a one in my area ,,
How didn't I know this I'm annoyed with myself ,it's on my doorstep :((((
Is there anyway I can find out upcoming Avents ,
Much Appriciated
Pam x
Hi Pam, it was on Fri 10 Oct, you should have received at least 2 letters from me with details of the forum on and a reply slip to attend the forum in Newcastle, I have you registered on the postal list to receive news and updates so would have sent you letters, sorry that you missed it, it would have been nice to see you there. I also put details of all forums on our website and on this site as well, I can register you for email notifications as well as postal if you would like. Best wishes, Maz x x
Are Maz I would really Appriciate you doing that ,I Will pay more attention at what comes from You in future . I really can't remember any coming in , that ve great if you would email me News ,I would of loved to see you , x next time !!! X
I am really sorry to hear about your daughter, and I have replied to you because your situation sounds so similar to mine. I have an MPN and I have similar symptoms to your daughter. I improve a great deal when I take exercise. I cycle several times a week, and my longest is 30 miles. Because I want to have a social side, I lead free guided bike rides as a British Cycling Breeze Champion. For my itchy skin, I use Lush Dream Cream
My teenage daughter has chronic fatigue syndrome. She always looks well and happy. Sometimes she doesn't always feel well inside. Like me, she has an 'invisible' illness. My daughter hides and fights her illness. She wants friends and a social life, and she doesn't let her illness get in her way, and she hates sympathy! I think because she is younger, my daughter prefers to just get on with it. We all learn to cope in our various ways, but for me my daughter has taught me the importance of being positive.
I hope your daughter feels better soon, and that she knows she is not the only one going through this - lots of people have many different 'invisible' illnesses and not just us!
Claire xx
I know how you/she feel. I look really well, but often feel soooo tired, people just think I am lazy as I am always yawning. I swim 4 times a week which makes me feel better, I think the chlorine clears my skin as well!! My hair has gone a bit thinner so I've had it cut shorter. I just say I've got a bone marrow problem, but people look at you as if to say - yeah bet you have. As long as she is more or less well in herself and platelets are under control it doesn't matter what others think - annoying though it is.
Hello Mums2Worry,
How blessed your daughter is to have your support.
I too had a skin crawling itch with ET. It was mainly on my arms and face.
It improved with Piriton and moisture cream, and not having the shower or bath too hot. Though hot water helps with the aching joints.
The itching has gradually gone away or I stopped noticing it, so it may improve for your daughter in time.
I walk the dog daily, not too energetically but enough to increase my heart rate a bit.
It lifts my mood and helps with the fatigue. Some days are better than others, sometimes it feels all uphill walking and the slopes have got a lot steeper, but if I have to walk more slowly I enjoy the scenery more.
Best wishes,
Borage
Hi.
Well, I can only tell you what has worked for me. Long email, apologies.
I was diagnosed with PV 5 years ago, when I was 55.
I pretty soon learnt that I was going to have to be my own " project manager"
My haematologist took care of the blood counts, but I received no advice as to how to improve my quality of life - I was on my own.
I had SEVERE aquagenic pruritis ( for anyone saying it's just an itch - it isn't - it's like having thrush under your skin, a blow torch on the outside, and thousands of insects bites at the same time. No laughing matter, I'm a hardy old bird and it drove me to tears on many occasion)
I decided simply to rule out everything that antagonised this condition, and do more of the things that helped.
This will probably appal your daughter but I haven't bathed or showered for over 4 years.
I wash my hair over the bath, my face, hands, underarms and feet are fine with water, and we had a bidet installed for the nether regions, other wise stand legs akimbo in the shower and point shower head upwards avoiding legs! Guess what! I don't pong.
I wipe my body once a week only with baby wipes.
I avoid alcohol and sweet sugary foods.
To help with fatigue and bone pain:
IMPORTANT - drink at least 2.5 litres of water every 24 hours, more in hot weather.
Brisk walking will help pruritis and fatigue. Piriton syrup helps me with pruritis, but not everyone.
Avoid : tights if possible, trousers and clothing containing more than 3% synthetic material and anything that irritates.
I developed my "SRSRHED" routine.
SR sleep rest - your daughter possibly works and has a family which must be hard for her. She needs to spend as long in bed as possible ie horizontal. MPN patients need lots of rest.
SR stress avoidance and relaxation. Stress is one of the worst things for MPN patients. If she has a husband he needs to help her round the house, as do her children. She isn't an invalid but every bit will help.
H hydration - drink lots of water. 2.5 litres per day.
E exercise - try to walk briskly for at least an hour a day, anytime. Big ask but will help her hugely even if round the block a few times.
D diet - MPN is a form of very slow growing cancer. Nothing to be concerned about I might add, there are MPN patients who've had this condition for 30 years. Research by the Penny Brohn cancer care centre ( google Penny Brohn) has found that an organic diet can hugely improve quality of life for all cancer patients.
This is inconvenient but not necessarily expensive.
You may dismiss this, but since I cut out all alcohol and caffeine, eat 90% organic food, little red meat, ONLY organic chicken, lots of fish, ONLY organic sugar where necessary and sea salt, NO PROCESSED READY MADE food, no additives preservatives etc my fatigue and quality of life has improved by 80%.
This of course will be up to her. Perhaps you can help here.
Suggest you order The China Study by Dr Colin Campbell. Available from amazon online.
Are you anywhere near Manchester?
There is a forum this Saturday at the Christie hospital which will help her enormously - meet other patients ( a kind and jolly bunch in my experience, who all help each other)
10.30 til 3.30 and learn more about her condition. If she can be accompanied by family and friends so much the better, they will learn about her condition too.
If you need more info email maz above or phone me 07921 057 552, email louisebroughton@btinternet.com. I'd be delighted to speak to you. MPNvoice.org offer buddy support for you and your daughter.
If you live elsewhere there are other forums throughout the country, again see the MPN voice website.
Things will improve I promise you, but your daughter must be prepared to help herself too, perhaps with your help.
Love and best wishes,
Louise
xx
I have ET and I feel much as your daughter. My family does not really understand. I retired this year because I could not keep up with full time work anymore. I actually had some co workers mad at me. They made comments that I was making things up. I am trying not to hold their reactions close to heart but it does sneak in now and again. My kids seem to understand which is a blessing. Love up your daughter I'm certain your support means the world to your daughter.
I have had E.T. for about 10 years and have recently joined a yoga class for beginners. We are all of a similar age at this small class (over 60) and our teacher allows for this. I have felt a lot better since, more energised. Our yoga does not involve too much leaping about, just gentle stretching and trying to strengthen our core muscles. The lying down and relaxing bit is great!!
I, too, found that I could not continue in my job. I was a teaching assistant supporting a year 6 class but could not do my job properly so left about 9 years ago. Best decision ever.
I, too, find that people do not realise how tired I can get or how difficult it is to deal with this sort of illness.
I attended a forum in Colchester in January and found that very helpful.
Best wishes to you and daughter
Hi mums2worry. I could have written your post about me, it was so accurate as I am sure it is for many, many others. Re. the itching after showering... The only way I can ease it a little is to never use shower gels or lovely perfumed soaps etc. I only ever use natural olive oil soap, obtainable from health stores. Anything else makes the itch so irritable . I then apply E45 intensive recovery lotion for very dry skin, it has a red cap. It really does ease the itch for me. As to exercise so many people find it helps combat the tiredness, personally I have to really push myself to get motivated, but rest has to be built into your day somewhere. You are obviously a lovely caring, understanding Mum, that is a so precious for your daughter. I wish you both well ,and hope things improve for you both. Sandy x
Hi Mum, your daughter is lucky to have such an understanding Mother. I had the itch for 5 years before I was diagnosed, it was nothing short of hell and the only thing that gave any relief was dry oil spray. Thank goodness after more than 2 years on Hydroxyurea this has improved considerably. I also have heart failure so attend a cardiac exercise class, it's hard work but I really feel the benefit. I never know which to blame for my breathlessness or fatigue. I am fast approaching my 76th birthday and make the most of life. I am just thankful that I got to 74 feeling fit and well. This year I have been making up for lost time - I have been to Lanzarote, Turkey,Paris, U S A from coast to coast and next week off to Norway! Everybody thinks I am mad and of course, they don't believe I have two bad things wrong with me. Everyone on this forum always has good things to say and it cheers me up any time I feel a bit low also things I didn't know about.. Love you all Exx
Dear muns2worry, I couldnt reply til now but wanted to add my take on this. First all the emails above are fantastic and cover most of what I wanted to say.
So.. what's left is; I believe when you and your daughter become the 'project manager' things change. First the emotional stress lessens and this is a great help. Energy and purpose directs feelings and thoughts outwards. Also when I look back on my 7 years with PV I can see that I am now in a more relaxed, detatched place. I did all the research possible, attended forums, modified diet, experimented with washing (for me hot oily bath with Boots Bath Oil); medication - there are different options and you could explore this since your daughter is so young but they all come with side effects. Exercise vital. And I realised that I had various levels of fatigue; gutted meant no action, had to sit/lie it out, meals from the freezer etc. half gutted upwards would force myself to walk and especially distract myself by going out with friends etc. So I had a plan and it evolved and it worked. And since I have gone from weekly blood tests to 3 monthly this too has moved the focus off having PV.
So see your daughter's situation as in the adjustment stage towards a plateau where she can cope. And it must be a great comfort to her that you care/research/encourage her. We dont all have this help.
what a great Forum
Mairead
If only I knew how to convince people that I'm not well and to make them understand my situation. I have had ET/ PV for 5 years and I still haven't found out how to explain it. I prefer to explain it as a precursor to leuchemia - an early phase that might not lead to leuchemia, but where the bone marrow is hyperactive and produces way too many blood platelets and uses up my energy so only a little is left for other activities.
Don't your daughter's doctor know about interferon? My guess is that interferon would go easier on her than chemotherapy. Interferon treatment is no joyride, but could perhaps be more gentle than chemo? But then again, I am only a layman.
I'm a Dane, so I don't know how the British health care system works. But I thought that maybe this disease is recognized as a cancer disease in the UK, like it is in Denmark? If so, then maybe your daughter can get som kind of insurance or pension payout from the health insurance or pension fund? That would at least remove some of the financial worries, if she or you have such concerns.
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