Working with ITP

[Mesd]

I do a manual job as a painter and decorator but my levels are extremely low in single digits usually and I'm struggling mentally with should I really be working, I got a sick note recently from my doctor as they could see I was struggling with everything and not having to go to work has lifted a weight off of me. Has anyone got any ideas how to manage this as at present I'm really thinking of not going back to work as I worry all the time am I doing the right or wrong thing been at work. Thanks

[rjsmyth]

It would be handy to know what treatments you have had/tried already to raise your count.

[Clarry1234]

Hi,

I fully understand your worries. I was diagnosed June 2021 and have been on a platelet rollercoaster ever since. My platelets have also been in single digits quite frequently as they try to find a treatment that will sustain a safe level. When they are low I get petechia and melodramatic bruising.

I deferred college for a year upon diagnosis but am hoping to go back this September (I'm a mature student). I am also an active person by all accounts and have been put on a power tool ban when my platelets go under 50, which is hard. No ladders, no strimming, no building or fixing things. I called it virtual bubble wrap. But a year on and I'm like 'Feck it', I have to keep living. I am very mindful of what I'm doing now, no more rushing and knocking into things. I'm not sure what your symptoms are...are you a bleeder? If you're not I have read of people carrying on as normal with single digits but I do wonder what their lifestyle is. If you work in an office and live in a flat, it is alot easier to mind yourself than if you live in the countryside and work with tools that have the potential to harm you. From what you've said I'd just be worried about ladders but worrying about anything is not going to help you either. Stress and ITP don't go. Not sure this helps but felt you needed a reply of reassurance, you're not alone.

[Mesd in reply to Clarry1234]

Thank you for your reply

[fooka]

Hi,

First of all, do not worry, many people lived decades with very low counts.

I remember my first year after I was diagnosed, I become panic even just going outside home.

But as time passed I know what are do's and don'ts with living and working with ITP.

I was diagnosed with ITP in June 2020 and my counts were only between 4 to 8.

Now after treatments that I can afford and after no effect on counts and a lot of side effects now I am off any treatment from past one year.

I am working with precautions, some time I got bruises and gum bleeding, but overall it do not effect my routine life.

I hope your treatment will help your counts to increase, but if its not working, do not worry a a lot, just try to adjust your lifestyle with ITP.

[Mesd in reply to fooka]

Thank you for your reply

[ghostthemovie in reply to Mesd]

I agree with Fooka. Worry doesn’t help but I do understand the frustration. Most doctors will have you on one med after the other & one treatment after the other. And unfortunately with no raise in your platelets. If a raise in platelets then it’s temporary (aka about 3-5 days). Every bodies & lifestyles are different. One size doesn’t fit all. Keep doing your research & live your life! Know your do’s & don’t’s. Hope this helps~

[Mesd in reply to ghostthemovie]

Thanks