ITP

Well I am new to this ITP thing. Just diagnosed last week. Any advice would be helpful.

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  • My count was 7. 2 years ago now around 100 no treatment just regular check ups, I feel very lucky.

    I found not to stress as it made me worse and I read everyone's story on here which helped., They give very good advice too if you ask especially people that have had ITP for years.

    Hope all goes well for you,

    Take care

    Lin

  • I've posted this elsewhere (the post above yours...), but here for you too:

    I concentrate on:

    1. Things I can still do (e.g. I'm still choosing to cycle in London to work)

    2. Noticing when my mind wanders into anxiety mode (wanting to check whether the rash has spread, thinning ahead to when my net blood test is). Calmly noticing that I am getting anxious and 'inviting' my thoughts to let go. Sounds very hippy, but it is something I find works for me.

    3. Allowing myself to check for symptoms only once a day - in morning after shower.

    4. Admitting if there are one or two things that would go very wrong if I couldn't attend (at the last minute at work) etc... (I give a lot of speeches and have some coming up) and putting plan b in place for the most important ones (an understudy!!).

    I also had a very frank conversation with my haematologist last night, saying that I don't want to go back on steroids and want to have a conversation with her before we choose my next meds rather than rushing in (if we have time).

    I would never have been able to have that informed conversation (after reading up so much on the ITP association website - join them!) or have ordered my thinking into a more positive (although it is still a struggle to stay positive) five months ago when I was first diagnosed.

    My last 36 hours of finding my booods had dropped for the first time since my diagnosis were quite emotional, reminding me of the initial stress and upset of the diagnosis.

    So, go easy on yourself. And if you find yourself fearful or anxious, that's OK. You will come to know this disorder and it's place in your life soon. If you want to ask questions of your doctor - ask and keep asking. Meantime, take an hour at a time. Focus on what you can do. Spend as much of that hour as you can thinking of other things. Then reach for the next hour knowing you lived that last one as best as you could.

    Tenk

  • It seems to affect everyone differently unfortunately, anything you are unsure of ask your consultant, ask and ask again and again if you need to as well as doing your own research. There were times I felt I knew more about the condition than some of the doctors in A&E and when I was admitted with internal bleeding at one stage I refused to be sent home to an empty house when my platelets were only 10 so you might need to stand your ground and even be prepared to explain what ITP is to ambulance crews, nurses and even some doctors.

    Its really scary to begin with but there is lots of support and info here xx

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