MPN Voice
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Has anybody got a baseball bat?

Because I sure need someone to clunk me one to make me sleep.

I have had a bed alarm put on mums bed, she has a fall alarm around her wrist and I have a baby alarm with a screen so I can see she's okay and can hear if she needs me so why do I keep waking up every hour on the hour to look at the monitor? I am walking around like a zombie because of the tiredness not only from my PV but because I am terrified of her falling again. I cannot get the picture of the horrible shape of her arm when she broke it. So, anybody with a bat please get in touch, a good nights sleep desperately needed.

5 Replies

Hi every sympathy. I went through the same in 2012 when I was in the process of being diagnosed with Pv and mum had dementia, dad couldn't cope. We were getting phone calls in the middle of the night. In the end I broke down totally, hubby dragged me to GP kicking and screaming and I was prescribed sertraline, an anti anxiety drug. It made such a difference to my sleep, it knocked me out and helped me cope through a very difficult time especially as mum died in the November and dad six weeks later. Please seek help from your GP as you will start picking up bugs because you're exhausted and things just get worse.

Remember you have to think about yourself too, you are no good to anyone totally exhausted and then ill. My kids were very good (they are not kids 30 & 32) plus my hubby although he tried to blame the fatigue on depression and threw the haem off the track for a start from diagnosing the Pv.

Thinking of you, kindest regards Aime xx😺


Hi Aime, I, too, looked after dad and he had Alzheimers. He finally had a massive stroke and lost the use of his legs so, heartbreakingly, we had to put him in a home. This actually doubled the work as I not only had to look after mum in her home but then visit dad every day as Mum wouldn't settle unless she knew he was okay. We lost dad in 2005, though I often say we lost him a long time before that as he didn't know me from a garden chair. Mum has lived with us for our whole married life but, fortunately, we all get along really well and she adores him and he loves her to bits. His own mother wasn't a mother at all so he thinks of mum as "mum". I got through my breast cancer looking after her as well so I will get through this. I have had anti-depressants for years, changing the brand every so often so I get a "boost". The tablets help my mood but can do nothing about the circumstances. I would love to hear from other MPN patients who are in the same situation to see how they cope with any dependent, be it a child or adult. Thanks for your lovely response Aime xxx


Devices are the worst thing for affecting sleep, but fully understand why you need to do what you do. You are probably waking up every hour as its on your mind, what if you sleep through and you dont notice something, so your body keeps waking you.

You could try setting an alarm to wake you up, so if you go to bed at say 10.00pm, set an alarm for 2.00am, then 6.00am. Just so you can relex and know that at those times you can have a look at the monitor and be assured all is ok. Your body might feel more like relaxing and sleep through then.

If that works try making the gap longer. It will still break your sleep up but not as much.

Worth a try.


Hi Jill, would it help if you had one of those baby monitors that you can actually see your Mum, then you could just check on her if you woke up and know she was o.k. without having to get out of bed. Also you might be able to relax more if you knew you could hear her if she called out. Just an idea. You have been through so so much over the past years and just feel humbled that you remain such a wonderfully caring person, looking after everyone else. Bless you. Tinkerbell13xx


Hi my little Tink's, I do have the baby monitor that I can see and hear her, I just can't stop myself checking it through the night. I guess mum has become my baby lol. Hubby said tonight I have to turn the picture off and just have the sound on. Hopefully my sis is coming up for the weekend so I can hand over the responsibility for at least one night xx


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