Buddies

No matter how supportive our partners and families are, they don't always understand how it feels to have a MPD. Because MPDs are ‘invisible’ conditions and not much is known about them it can make you feel very isolated and that no-one understands that you don't feel well but can't always explain why you don't. To be able to talk to someone who knows what it is like is so helpful, to know that when you say your bones ache or you are feeling very dizzy, they will know what you mean. MPD Voice has a very active and continually growing buddy programme that matches people up for support either by email or phone, or both. Our goal is to help people cope with the feelings of fear, isolation and confusion related to their MPD, if you would like to have a buddy or could even be a buddy let us know, email us at buddies@mpdvoice.org.uk read more about the programme at mpdvoice.org.uk/get-involve...

34 Replies

oldestnewest
  • Thanks Maz you have put your finger on the problem most of the family don't understand what you are going through as with the aches and pains. The only time they know something is wrong is when you look exhusted and could sleep for a week.

    Tina

  • This is a great idea in theory Maz but it requires quite a lot of committment from both parties.

    When I had a buddy in the past they used to take months to reply to my emails which I found frustrating. We lost touch over time.

  • Yes it does require commitment from both people, I'm sorry that your buddy was not responsive, would you like me to put you in touch with a new buddy?

  • i could not have chosen a better buddy in jacqui we have now struck up a fantastic friendship in each other we support each other enormously we really have hit it of

    best wishes and thank you maz

  • maz why is it that every time i reply to something it keeps coming up delete has something happend that i am going to get thrown of mpd voice as other people have report mine is always delete

    best wishes

    nicki

  • I'm in the same situation with my Buddy, I would actually prefer a closer buddy, that I could meet with for coffee etc - maybe once a month.

  • I have MF (progressed from PV) and it would be nice to chat to someone locally, as Whampam says, "over a cup of coffee etc." Is there anyway of being told who has the same MPD locally?

    Also, I act as a buddy to a lady in Yorkshire, which is miles from where I live in Bristol! We chat about twice a month, usually after we have been to the local clinics.

  • Hi Michael, I'm afraid I can't tell you who lives where because of data protection, however now that MPD Voice is part of this community once more people start using it you will hopefully be able to arrange local informal meetings over coffee.

  • I would really love being able to support you all however I am all the way in Australia. Please don't let the distance stop us from sharing our stories. I have MF post PRV, and have been on my journey of suffering for the past 5 years, would love to share ideas and solutions to some of the every day side effects etc..... Cheers for now, Jo from OZ......

  • Hello 'Joprv', My MF is post PRV. The PRV was diagnosed in 1983 and I have been on Hydroxy' tablets most of the time since then. The condition changed to MF 2 or 3 years ago. At this time I am on 6 Hydroxy' tablets a week and also have to have Allopurinol for anti gout measures and Omperazole to conteract acidity in the stomach. I am ok, but I get tired and a bit out of breath on walking up hills because they are keeping my red cells in the low 10's to stop the other cells increasing. I have recently noticed my ankles hurting when I get up in the morning. Is this a problem you have? I think I am controlled very well, but it is always good to know how others are doing.

    Michael S

  • Hi MichaelS,

    I was looking at your avatar and thinking to myself "I know that face from somewhere". I think I was sat next to you at the London forum in Nov 2011.

    From your post I realise everything isn't a bed of roses at the mo but I hope you are reasonably well and hope to maybe catch up with you at a future forum.

    Keith / ET.

  • Hello Keith, you may get this message twice, but I do remember you, even though the meds have made you look very much like Frasier! Actually I am going along fine, apart from a few aches and pains. I did have a migraine yesterday. They seem to be increasing, but are not a real problem for me

    I hope your ET is being controlled as well as my MF. Have you the horrible problems with itching or was it my other neighbour at the forum. If it was you, then I hope you have found a way to deal with it. I will attend the Cardiff Forum if it happens.

  • Hi there from OZ, thanks for your comments, I'm just recently diagnosed with post PVMF, after primary PRV for 5 or more years.....the fibrosis is in my organs, my oncologist believes that I actually have a bit of all MPD, quite extreme and debilitating......many treatments and deal with an array of symptoms each and every day, i am keen to share my findings and treatments from my doctor, who is a leading specialist in this field in our region. More than happy to share and learn more from the MPD community, which I love and have enjoyed reading for some time now. I am really keen to start exercising, it's been 5 years with no exercise just trying to get my illness in hand and dealing with the range of emotional states, I am enjoying the sharing already, cheers from joprv......

  • Hi everyone. I would just like to say a big Thank you to Maz and everyone at MPD Voice. This link and the MPD Voice website is wonderful. Fortunately we all look and seem, for a lot of the time, fine - and then if not feeling so good it's only those closest who can see the fatigue etc. To be able to 'chat' with others who have MPDs makes me not feel so 'alone'. I am very lucky that I can tolerate the meds, because there are many out there who can't. Keep smiling xxx

  • I really agree with whampam and MichaelS.

    My buddies are both in Dorset and I m in Cumbria!

    I even asked the other patients at the chemo unit I attend but couldn't t find anyone with pv.

    Next step is to put a sign up..... I d love to meet others with pv over a coffee and even start a jolly walking group - but where to start? Anyone out there in Cumbria perhaps or am I a lone voice in the wilderness?

  • I really agree with whampam and MichaelS.

    My buddies are both in Dorset and I m in Cumbria!

    I even asked the other patients at the chemo unit I attend but couldn't t find anyone with pv.

    Next step is to put a sign up..... I d love to meet others with pv over a coffee and even start a jolly walking group - but where to start? Anyone out there in Cumbria perhaps or am I a lone voice in the wilderness?

  • I'm relatively new to this forum (I was diagnosed prv last January via a heart attack) and can appreciate the call/need for buddies. But - one thing I have noticed is that this is a great place to come and see what others are going through and experiencing and, for me, is the next best thing; there's lots buddies already here sharing with others and when it's not possible/practicable to meet face to face - here'll do nicely ;)

  • I would love a buddy but I live in the U.S.A. I'm great with email! I have ET.

    I plan to write an intro soon. I am so glad to have found this community!

  • Hi BlessedWithSix

    you can have a buddy wherever you live, I can match you up with someone don't worry about that, we have buddies who live all over they world, thank goodness for email! And some buddies are now using Skype to keep in touch. If you would like me to send you a form to request a buddy please email me at buddies@mpdvoice.org.uk.

  • Maz when I reply my posts come up saying delete do u know way that would be as everyone else's say report am I doing something wrong thanking you millions

  • Hi Millions, not sure why it says that when you reply to a post, it may be a stupid question, sorry, but have you checked your settings, you probably have, but it might be an idea to have a look at your settings and re-do them and then see what happens, if that doesn't work let me know and I will contact the site admins and see what I can do for you. Maz

  • maz why is it every time i write something it comes up delete when someone is has report beside there comment is it something i am doing wrong

  • Hi max thank you so much I'll get a look at my I pad it quite new so it's probably something stupid wrong mean time I hope u are keeping well get back to you soon xx

  • Hi, I would be interested in meeting up with a buddy for a coffee and a chat.

  • Hi I agree with most of you about having someone to talk to over a coffee. I have tried to do this through my local hospital as confidentiality applies and they cant give me details of people which I understand but I am getting nowhere with the hospital. Any suggestions anybody

  • The same applies to MPD Voice I'm afraid, I can't pass on names and contact details because of data protection, the only thing I can suggest is that perhaps people who are interested in meeting up could say on this site where they live and then perhaps arrange to meet up for a coffee and a chat, I think it's a brilliant idea to meet informally over a coffee/lunch. I live in Matlock Bath, Derbyshire and happy to travel approx 30 miles to meet up, Maz.

  • I live in Hayfield and would love to meet up somewhere Maz for a coffee as Matlock isn't too far if we could meet half way maybe.

    Joan

  • Hi Joan, brilliant, I will email you so we can arrange it. Maz

  • Hi Maz

    I think the buddy programme is excellent. I never heard from my buddy so e-mailed her but it kept bouncing back so don't know if I had correct address or if she decided she didn't want support

    Joan

  • Hi, I'm Melanie and i live in Billericay Essex. I was diagnosed with PV seven years ago. Is there anyone with the same near me? Mel x

  • hi im looking for some support or help i am 30 yr old male i have had empysema now for 7 years but only got told about it in 2010 and now ive also been diagnosed with polycythaemia which is a very rare blood disorder and im now awaiting to see a specialist. im a very anxious person as it is and am finding it hard to cope with my illnesess

    how do i get a buddy im totally lost and dont know what my nxt step is people have told me to get my disability looked at but dont know how either

  • Hi Stigmark, can you let me have your email address so I can send you the buddy forms, I will definitely be able to put you in touch with someone for some support. Please don't feel so alone, we are here to help and support you. You can look into disability living allowance though I do know from the posts on this forum that it is very difficult to get, the best thing to do is get some advice from the Citizen's Advice Bureau or speak to someone at the DWP. My email address is maz.cd@mpdvoice.org.uk

  • Hi, I live in ayrshire, Scotland, and would love to meet up with someone for a coffee and chat.

  • Hello, I agree with you all here, that it would be so nice to met a "counterpart" for a coffee or so.

    NW Greater Manchester is where I am ....

You may also like...