Hu journey

[heathermc]

Well i must give credit to the local nhs in the north east they have been really good in the last few weeks..

They did a home visit for my blood test..telephone consultation yesterday with the consultant and my medication will delivered to me next week ..3 months supply.

I have been shielding so am doing my bit .Good news platelets still in the 600..haven't gone up or down. So it's a bit like levelling out. Glad for my garden and my flowers.

I've started watching old 1970s comedy to keep my spirits up .. some mothers do av em...and I challenge myself to one goal a day for house work.it it's something difficult.

I find the worse time is sleeping ..I use mediation techniques alot..Headspace i find quite good

Stay safe everyone we are nearly there.

[lizzziep]

I’m in Yorkshire and I also got a home visit for taking blood, then a phone consultation and medication delivery. I’m also shielding and haven’t been out for about 8 weeks. Luckily my husband has done the shopping a couple of times a week when we haven’t managed to get a supermarket delivery, our sons don’t live in this area. He brings our neighbours shopping and a 97 year old friends as well. Which is good as he has always hated shopping. It’s lovely to have a garden to get in, ours faces south so it’s nice to get the sun all day but is often too hot to sit in.

Stay safe.

[heathermc in reply to lizzziep]

Thanks.

Haven't been out for 8 weeks.

Food delivered. I also have my elderly mum living with me aged 86.. so she's shielded as well..

We are doing ok so far .

Just miss my yoga classes.

Take care of yourself

[hunter5582]

Glad to hear you are doing OK. Not sure if you are JAK2 positive, but if so know that there is a direct link to insomnia possible. Stress, of course, makes it worse. Since you have already engaged in mindfulness as an intervention, something to consider is a Qigong practice called The Six Healing Sounds. It is very beneficial and really does help you fall asleep as well as other benefits. Here is one link to it, There ae variations. mantakchiamadrid.com/courses

Al the best to you.

[heathermc in reply to hunter5582]

Thanks..

No I'm jak2 negative ..Calr positive..

[hunter5582 in reply to heathermc]

While I have not looked as extensively at the specifics of the CALR mutation, I believe that the effects are much the same. JAK2, MPL and CALR all lead to dysregulation of the tyrosine kinase system. The effects can be much the same for all three mutation types and inflammation. Here is one article touching on this that posits that CALR may in fact demonstrate a stronger inflammatory response than JAK2. ashpublications.org/blood/a...

The core of the emerging understanding of all of the MPNs is that they are an inflammatory process. That is why so many of us have secondary symptoms that are problematic. I also experience chronic insomnia. I do find the calming meditative approaches like Headspace or The Six Healing Sounds to be really helpful.

Glad you found something that helps.