Family life with mf

[Leighcox85]

Hi I don’t normal post a lot but I wanted to know how others cope having mf and living a normal life I have 2 small children and I won’t lie iam finding it more and more difficult to meet expectations my family put a lot of pressure on me to do things everyday and iam worn out getting dressed is such a big effort they think iam lazy but the more I push myself the worse it gets iam in pain all the time and I can barely breath I don’t know if this is normal or iam just having a bad patch as it’s not going away and iam beginning think this is me now I would love to hear others perspectives on everyday life and coping methods x

[Norman45]

You have summed up very much how I feel on my bad days. Getting out of bed is an effort. On my good days (and I have more than bad days fortunately) I have reasonable energy to live near normally.

You will have to educate family and friends about this potentially physically and mentally crippling disease.

My wife is outstanding, knowing when to cajole and when to hold back and let me come through the down days on my own terms.

Have been on Ruxolitinib for over three years and this has helped my quality of life and stabilised my blood counts.

I’m in my 70s but don’t think I could have coped physically if I was your age with small children. You have my sympathy because this disease strikes people in many different ways.

Keep posting on this forum if it helps but most of all show your family the replies from people who understand just what you are going through.

Best of luck.

[Paul123456]

What drugs are you on? Ruxo has helped many

Also a lot of people report reduced symptoms after adopting a ‘healthy’ diet. Generally the Med diet with anti inflammatory focus. Hence minimal refined sugars, processed foods etc. No smoking. Lots of veg, complex carbs, fish, olive oil.

Do you know what stage of MF you are?

Best Paul

[Leighcox85 in reply to Paul123456]

I spoke to team in January and they told me I have less than 2 years and iam not a candidate for sct I recently requested a second opinion and transferred to st guys professor Harrison and I just finished testing to see if I can have sct but won’t know till August iam taking 20g Ruxolitinib twice a day it helped in the beginning but it was short lived and I soon began feeling worse than I did before i get very few good days and often I have no appetite at all blood transfusions don’t help either I just feel that I let people down constantly x

[Paul123456 in reply to Leighcox85]

Prof Harrison is the best. If SCT not an option she will know the best drug regime and possibly new trial options. There is a lot going on at the moment.

If you are not on the Med Diet, I’d suggest you give it a go.

Please don’t blame yourself in any way. It sounds like you are being heroically stoical.

Best Paul

[Kimmyk in reply to Paul123456]

Med diet? Mediterranean or medical? Any specific one? Thanks.

[Paul123456 in reply to Kimmyk]

Just Google search Mediterranean Diet or if you want to go all the way, anti inflammatory foods.

[Kimmyk in reply to Paul123456]

Thank you.

[Norman45 in reply to Leighcox85]

When I first went onto Ruxolitinib I was on 20mg twice daily. After a month I hit a brick wall with fatigue - sleeping 2/3 hours in the day and then over 12 at night.

I emailed my consultant and she recommended halving the dose and since then I experienced a gradual improvement.

Don’t know if this helps but it might be worth exploring with the good Prof.

[Leighcox85 in reply to Norman45]

I think maybe you could be right I was on a lower dose before and felt so much better then I will speak to the doctors on the 12th iam hoping stem might be an option but I know for me it would be dangerous iam hoping to get a lot of answers thank you for advice I appreciate it x

[eire]

MF and normal life don't go hand in hand in most cases. You cannot meet the expectations of anyone else other than yours. Having 2 young children and coping with everything else you used to cope with will only lead to a fail. I so feel for you that you feel like this and even your post sounds apologetic!!! Honestly the children come first enjoy them as much as possible and advise everyone that you need help and understanding that your energy levels won't allow you to do what you want to do. I make a list of jobs that NEED to be done and then if I do even one more job I'm amazing. I really don't care what anyone thinks if I sit in a chair all afternoon and read when there are jobs to be done they can either understand or .......!!!! Please don't make the mistake I used to when you have a good day and overdo it you won't get any medals just feel even worse the next dsy. Stick to the list you are an amazing person that's been given a very challenging illness. I have grandchildren and I would so love to do all sorts - like I used to post MF - but I can't. I've explained to them and they're very understanding. There is a lot going on for MF in the medical world stay ahead of the trials and be kind to yourself.xxx

[eire]

Sorry after all that chat I would just like to say 2 more things!!! Firstly eating can sometimes be very difficult what I used to do was graze and it did help my energy levels after all you have to fuel your body!! Even small snacks help and maybe if you weren't so worried you could get your appetite back. Watch you don't lose too much weight. Secondly 2 years to live - seriously you have children to raise you're too busy to go!!! That worry on it's own can be very debilitating I speak from experience - I'm long passed my sell by and use by date. The problem we have is that we look well even though inside we feel awful but if we looked how we felt aaaagggghhhh!! Be kind to yourself and stop trying to keep everyone happy. Xxx

[harleydavidson]

Hi Leigh

I don't have MF, but struggle frequently with PV and some of my family don't understand either. My partner often calls me lazy. I still work 9-5.30 four days a week and every other Saturday 9-1 but don't know how much longer I will be able to do so. Do things at your own speed and listen to your body. I hope you get your SCT. Best wishes Mel x

[Ebot]

Hi. I can’t comment on the MF, drugs or prognosis but one thing stood out from your post. You seem to feel that you have very little real understanding and support from those around you. And confronting a potentially life limiting disease is a very scary place to be especially for someone with two small children. You’re in exceptionally good hands with a Prof Harrison and her team. She has two wonderful CNSs, Yvonne and Claire. Please tell Prof Harrison exactly how you feel, the expectations you feel you have to meet, the pressures you feel you are under and the realities of your day to day life. You are confronting huge challenges both physically and mentally. Take your family members with you, perhaps they need to hear this all. Or speak to Prof alone. You don’t need to wait until your next appointment. Just call or email one of the CNSs. You have a lot to contend with and you need to be as well as you can possibly be for the sake both of yourself and your kids. Wishing you every good wish.

[MFBMT2011]

Sorry to hear this Leigh. SCT is indeed a potential cure and it sounds like this was not evident to you for quite some time. I think that all MF-ers should at least be given encouragement to read up on SCT to understand the implications in case it becomes in their future. Drugs might slow MF but don’t cure.

I was diagnosed with MF in 2010 and a local haematologist gave me eight months to live and said transplant was ‘unproven’. I had a second opinion with Proff Claire (and there is no one better in the country) which took me down the transplant route and here I am sharing with you eight years later.

Transplant is challenging for the body and needs a good level of health so the Proff will look at this. I know lots of successful transplantees worldwide and will be ready to help you with any questions, information and support if you do head the SCT route.

Good luck for August and please share the outcome.

Best wishes.

Chris

[MFBMT2011]

Leigh apologies. I wrongly picked up a liver related issue so have edited my reply. Happy to answer any questions anytime or have a chat if that helps

Chris

[Stevesmum42]

Hi Leigh . This is so very tough for you with a young family.......as others have said professor Harrison is the very best doc you can see, I’m so glad you are going to her for consultation. Do you have someone close who can go with you and understand how you feel? You really need your family to realise the limitations you have at the moment, never mind ‘meeting expectations’ this is the time you need care, understanding love and support . Not just physically but emotionally, we on this forum can understand and I hope your family and friends will too in time.

Methods of treatments seem to be explored continually, there are some very well informed people on this wonderful forum that keep up to date with the research .

Pace yourself as and when you can rest when you need to , Just do the essential stuff with you children .

I wish you so very well , Please keep us informed. All best wishes.

Big gentle hug. Sandy xx

[Jschwab]

The doctors are giving you about 2 years, but that doesn't mean they are accurate- how often has someone been given a time frame to live, but then live many years past it? There is ongoing research now and in two years there may be a cure! Yes, you should go on a lower does of Rux, or try something else. Please keep us posted after your appointment with this amazing sounding professor! Prayers for your pain to be relieved, for the right med, dosage, and for a cure! xx

[Lifam]

Hi Leigh, like some members I don't have mg and I can't common on that. But from others sound like you'll be in good hand with an experienced professor, I wish you all the best. And yes, at least some of your family have to know what you're going through. Don't give up and don't even think of that 'two years' time frame, you'll have proper help from this amazing professor. X

[Lifam]

Sorry, I meant I don't have MF.

[Chaz1]

Hi Leigh, my husband has ET/PV so I'm afraid I can't comment from a MF view. I hope you get a positive response in regards to SCT from Prof Harrison, I'm sure regardless you are now in the best hands for treatment & helping you live your life. Are you family putting expectations on you in regards to everyday things or trying to do things to make memories. We made the difficult decision for hubby to stop work (mainly because his work were awful to him after diagnosis) but he was living just to work, he slept as soon as he got home, after breakfast before he went to work & it was too much. He was symptomatic before diagnosis so despite only being on aspirin & venesections it has having an impact on life. We realised how relient he was on me for alot of things & we had no life as he needed the weekend to recover. So he packed up work & does the basic housework & gardening during the week (some weeks he can't get it done, & that's fine, he needs to rest) but importantly we are living a life as a family, he might still be asleep by 7.30\8pm (& had a nap in the afternoon) but I don't have to wake him for his tea & we can do things in the morning. We have adapted so what we use to do in a day, we do across a weekend & find a cheap hotel away. He's cut out caffeine, reduced his carbs, limited green leafy veg & hydrates well. It's not easy & sometimes I get so annoyed, we have hopefully a long life ahead but we are trying to do the priorities, like making amazing memories & not putting things off. Talk with your wife about what she wants to prioritise, does she want jobs done in the house or time out as a family. Maybe focus on one thing a week. There is some courses on managing fatigue, although it's not probably something new to you it perhaps would help to take her along so she can see what an impact it all has. It also might help her feel better that something positive is being done. Maybe counselling could help, to be given a time scale must be devastating for all of you & maybe she feels you should be cramming as much in as you can. (I'm not saying you should be) As a partner of an MPNer as understanding as I am, I still get really cross with him, he's forgetful, often leaving doors unlocked when he goes out, cross that when I could do with a cuddle in bed he's fast asleep, annoyed he can't remember that something is in the oven so burns it so I always cook. It doesn't mean that we don't understand but sometimes it is frustrating. We are fortunate that our son is a very mature, independent 13 year old, if he was younger I'm not sure how I'd cope. I'm not trying to put a burden on you but looking a both sides. Family probably just want some special time with you, so talk about what you'd all like, what are peoples priorities & then try & plan them in. We have a lovely haematology reception team he book hubbies venesections just before a important event as they appreciate how much better he will feel. So for example we dud our first ball in June & he managed to stay up & dance with me until late, something he's not done for years. He was done in for the next few weeks but it was something I really wanted to do & we just didn't plan anything for the rest of the month. Discuss ways that could be easier for you to do things, do you have a blue badge for you to park closer to reduce fatigue, wheelchair/mobility scooter, stair lift, downstairs loo, home help. Also changes to your house to help you with your day to day life, with a letter from your doctor are exempt from VAT so can be more achievable expense wise. Hoping you can get a bit more support & that appointment with the Prof is positive. Sending best wishes

[Mrs_Average]

Hi Leigh

So sorry to hear that you are having such a challenging time of it. I have MF and a young family too, low risk. I do sometimes have harder days than others just like others on this site. Usually when I try to do too much and then the following days will be full of fatigue and aches..

I read about the spoon theory (Google it), that helped me think about how I choose to use my energy.. I can be my own worst enemy though as I do try to do everything and then get wiped out.. Other ideas are to get a bit of help at home even if that is asking your little ones help with folding laundry or unload cutlery from the dishwasher, it just feel like more of something you do together..

I agree with comments on here about food and hydration is key.. A good reminder for me too as I've been slipping into bad habits and I feel the difference.. The other thing is gentle exercise. If you can manage a 10 min walk every day it does help. When I feel good yoga is great.

And finally if you're worn out and need to go to bed.. Do!

Good luck and let us all know how you get on.

Katherine

[Leighcox85]

I spoke to my doctors today and blood test confirmed I need blood and iron so iam booked in for Thursday have a transfusion so iam hoping I feel some benefit from it I usually cope well with my illness but not so much lately I have no support at all from family it’s very much just me and my boys they rely on me for everything as they have autism I think the uncertainty of it all just got a little much I was feeling very defeated and when I reached out I got shouted at as my family think I have ruined their lives and tens to remind me of it daily but my nurse Claire is amazing and I had a good chat with her today and I do feel better thank you to everyone that replied I will definitely be trying your tips x

[lavender007]

Hi there,

could I recommend a short book which helped when I felt like you "you don't look sick" have not been able to find the book my house is upside down at the moment.The whole you don't look sick can be very hard to hear when you are struggling, my family read it and it helped.

Good luck this will improve, just take one day at a time and if you are able to take ten minutes a day, spend some time on your own just relaxing to some gentle music.Your body has practice and can help when you fel overwhelmed.In the UK Maggie's centres are great places for support and some run courses to help you they are really special places.

lots of love Lav007

[lavender007]

Leigh my previous message mentioned a book The title living well with invisible illness

Author Joy H Selak