Sat in bed last night feeling my anxiety levels creeping up and was lucky enough to notice the link at the bottom of the MPD homepage. Spent time reading and felt something just less than the normal state of panic I have been in recently. Diagnosed Sept 2013 at 42 years old, started on aspirin but platelets levels have just gone up and up, now over 1000 and symptoms worsening, tingling and deep bone pain. So yesterday consultant has suggested starting Interferon on Monday. Should have been last night but hospital medication out of date, so Monday is the day. I have two primary aged children and would just like to hear form anyone with advice for coping emotionally and carrying on with being a mum and living rather than existing in a very dark place. Thank you.
Feeling scared: Sat in bed last night feeling my... - MPN Voice
Feeling scared
Come on now grace ,don't be afraid ,this illness is one we live with ,not one we die with ,so lets get that clear first and foremost !! Yes life will change for you and the family .but it can be done , work on making a new you ..eat well give up junk and booze ! Give your blood a whole new make over ,,drink loads ,,water. ,smoothy s ,juice , wash all the toxic out ,,fresh healthy in ! Rest as much as you need ,talk to the family ,tell them how you feel . Get a buddy from this site ,ask maz about that ,you need a mate to unload to .who has your personal problem ,will be there when you need a shoulder .start today .shop for all those healthy fruits and veg to give you energy to cope with coming treatments ,look at books to help you ..like PH miracle ,dr Robert young .. Buy it on line ..
I read it and it helps me ,I'm really coping well .. Keep in touch ,twinkly
Please don`t get down Grace. Everything Twinkly has said is the business. Keep in touch with this site. You will learn so much about your condition and be able to ask questions that worry you - someone will reply. Maz is on hand to contact Professor Harrison at St Thomas`s for anything you can`t find an answer to. I have long held the opinion that we need to learn as much as we can about our conditions as GP`s have limited knowledge. I`m sad that you have been diagnosed at such a relatively early age, but there are many on this site who have had MPN`s for a very long time. Keep well, Keep happy especially for your children - and please don`t worry. Regards Sue
Twinkly you are amazing you always help me as well sometimes you feel so dam scared read something you write and you feel so much better. I’m always so scared as well. I have come so far in 2 1/2 years much better understanding also I think you are all way ahead of Australia with everything but we are getting there thanks Twinkly your a gem
How dreadful for you Grace ,so young to be diagnosed with an MPN.I cannot help re children,Or coping so young,But whatever age,it is life changing,Twinkly offers good advice,so do many on this site.I am 75,I am still kicking,sometimes there is awful darkness and fear of the unknown,the meds,the loneliness of a rare disease that other people find hard to understand.....but you will manage,keep positive as much as you can.I still work, as a sculptor,have my horses and dogs,yes bad days ,we all do,so as twinkly said we live with it not die with it.....sending you my very best wishes,try not to panic,believe me,having been there,it just makes life worse.,all the best to you.
Inca you are a joy ..always there to give of yourself ..true love for your fellow human being. I want to thank you for that ,, And sue so sensible and compassionate .im so grateful we have been introduced on this site ..lets stay positive !! Xx
Thanks Twinkly,to be honest,Iam in one of those dark places at the moment,with a ghastly chest infection on top of increased Hydrea ,but when I read Grace,I was so sad that a young woman with small children was in such a worried state.We do have to support each other ,you are a star with your good advice,Louise too,and others like Sue.Those doggy pics by the way are great,been too poorly to say when I saw them...will you keep that pup? Keep well and twinkling,Sally
Hi Grace, I am so sorry you are feeling this way and totally agree with what everyone has said, it is great advice. However, it is a totally different worry when you have young children. I also have 2 primary aged children. We are not worrying for ourselves, it is worrying because we want to be there and well for our children growing up. Also when your children are young and you are trying to juggle school, appointments, kids parties and work, finding time to look after yourself (though very important) is very difficult, especially when, in my case, when I feel worse inside I am getting told I look really well! That said, there is so much going on with research into our conditions now that we can be more hopeful than ever. Try and box away the worry, look after yourself and know that we all understand the worries you are feeling. By the way, it took me about two years to come to terms properly with this diagnosis, so things do get easier, I promise. PM me if you want a chat x
Hi Grace. I was diagnosed last year with PV aged 43 and felt the same as you after quite a rocky start and a nurse who frightened me with now I know, lack of knowledge. I have watched people's advice, stories and knowledge on this site and it has helped me no end. They are all lovely people and they keep me strong and positive. I even started eating fruit and veg after meeting Twinkly at Colchester forum, unheard of for me but I do feel
the difference, go to one if you can, Maz is an amazing. There are a lot worse people out there with illnesses and I feel quite lucky, in that my life hasn't changed, and I am thankful for that. I still work, have my grandchildren and I sometimes almost forget I have it. Be positive, and stay strong and talk to the forum as it really does give you that boost when you need it. I wish you well x
Dear Grace,
Hello there sorry to here this, but I was in the same situation in 2013 and know those feeling well, when my symptom got the better of me and was started on Interferon, My little on was in primary school at the time too, take each step at a time (which is easier said and done). Please PM me if you want to discuss anything.
Hi Grace, like others too, I've been and sometimes still am there, 44, diagnosed last year and two children under 10. All the advice you've had on this thread is sound. I found that seeing a good counsellor helped, also try some relaxation methods too. Download the Headspace app, it worked for me. If you have time for exercise then that definitely helps to relax. I am in the 'denial' phase at the moment which sounds daft but at least I'm not massively stressed. Good luck, you'll get there. Remember it's ok to be afraid, just don't try to cope on your own. Viv x
Hi grace , I know how your feeling most of us have been there , but thank goodness for this forum & all the caring people in it ,
as the saying goes WE HAVE an MPN
IT doesn't HAVE US , remember that x
We are all here for you ,& each other x
You've been given some great advice ,
All I can stress is stay positive & keep your body in top form by eating healthy & staying hydrated, (( Rest if need be ))
I to were in a dark place after being Dignosed with ET 15 months ago after a TIA
But I'm forever greatful for the excellent advice on here, from all my fellow friends & Maz & Marilyn got me to a much brighter Place ,
I do hope all the heart felt messages & advice will soon begin to lift you ,
Take care
From Pam x( Newcastle upon Tyne )
Hi Grace,
OK. I was diagnosed Aug 13 at 51 and was pretty horrified and took a while to adjust. Of all the things that seem to help me the most, (and I can't prove this as there isn't a control experiment of me!), regular gentle exercise and stress management seems to keep my counts down. I'm on aspirin and the occassional venesection. There seems to be a direct correlation between stressful times and my platelets rising. I would, if they were 1000, take interferon, which I haven't had to do yet. I would hope to start on a very low dose and I would definately change to a low inflammatory diet which is how our grandparents and great grandparents may have eaten. Basically, lots of veg, some meat and get off all industrialised food! Green tea, few carbs, mainly rice and potatoes if need be. Sugar as low as you can make it. Nuts and oily fish are in. I was a pretty healthy eater anyway but now I am stricter at home and allow myself treats with no guilt, when I'm out with friends. Keep hydrated, there is proof this helps the blood. Cut out or lower red meat. get your iron from watercress and other green leafy veg. I have a few glasses of red wine a week, with meals only, and 85% chocolate regularly!!! (there is loads of documentary evidence about all these).
This will help whatever drugs you may have to take but the stress relief is an absolute must. If I'd known how much gentle daily exercise would help my mood, I would have done it ages ago! Having young children, all the more reason to take some time out to relax as much as you can.
Try and think of this as a condition you have to manage over the long term but don't let it define you.
All the best
Vanessa
Hi Grace
You have all the reassurances and support you could wish for here but in those dark moments you will still question your mortality, I was diagnosed at 49 with PV, 58 now and although there are up days and down days, most of them are good, enjoy your life and your family, your sticking around a long time yet!
Love Mick x
Hi Grace, well as you can see everyone on this forum is very supportive and they give good advice, I can't really add much, so all I will say is, we are here for you, we all understand how you are feeling, it is difficult to come to terms with a diagnosis of MPN, but just remember we are here and please just ask any questions, we will do our best to answer them for you. Best wishes, Maz x x
Thank you all so much. I do try to stay positive but it seems hard at the moment and yes trying to be there for my children, sort book bags and play dates, get to work and remembering my poor stressed husband in amongst all of this seems impossible most days. I will start to follow up with the suggestions, firstly hopefully I can cope with the interferon and become emotionally stronger. Thank you for responding- I feel lucky to have found this support at this time. Sending you all my thanks and good wishes x if it is ok I would love to PM those who have kindly offered. How would I go about doing this?
Sending you a very big hug. The scary part will disappear soon, when you have got over the shock and got used to taking your meds. I remember coming away from the hospital thinking they will be giving me antibiotics for some weird infection!!! I came away clutching a bag of Chemo in a total daze!!! Tripped over a raised flowerbed and landed spalled all over the pavement. A sweet old man rushed up to help me, telling me I was in the right place if I had broken anything!!! I hadn't but I felt so alone. Being strong for your family is also exhausting. But the one thing we do have is our friends, our fellow MPNers who know all about the good times and those dark scary times. We can talk here and really pour out our feelings and worries. And of course the good bits as well. We are always here for you. Xxx
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