I am in a bad mood today due to bruising popping up arms,legs, it is really annoying me having no control over this disease , no medication either, I am trying to keep upbeat but it is hard: (((
Retail therapy may help obviously no short sleeves or mini skirts : )))))
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When mine was at its worst it was summer so T shirt weather, I had a lot of tests and treatments so needle marks and big bruising on the arms. I looked like a serious drug user who jacked up all day long.
No body wants to sit next to you on the bus, so that's a bonus if you like your own space
It's horrid when you are first told you have ITP, and a bit panic making. I got it when I was pregnant in 1995, and am still here. I retrained as a teacher after 5 years of ITP, and then taught secondary for 5 years, and was fine.
You can decide how you deal with it; you can get angry and stressed, which doesn't help, or you can get on with living your life, whilst noting what makes you feel worse, and avoiding that. Eat well, sleep well, plan in some down time. Avoid contact sports. I have two friends who had AML; one died, the other didn't, but the survivor still isn't right 4 years on. Having ITP isn't the worst thing you could have imo, and if you don't get your head around having it and learn to live with it, you are setting yourself up for a harder time than necessary.
There is nothing you could have done to avoid getting ITP, so stop beating yourself up about it. ITP only affects your life if you let it, and I'd far rather have ITP than Type 1 Diabetes for example, or SLE.
This is all new to me and once it sinks in I will be fine I won't let it rule me or beat myself up about it I am not that way inclined that day I woke up with lots of bruises so I was shocked ..... i know there are illnesses much worse just I had never heard of ITP.... It is all a learning curve and one I will continue to learn about no doubt .
I was told mine would clear up post pregnancy...my son was born with very low platelets and mine got lower as well. It was tough at 29 with a new born to deal with the fact that I would be stuck with ITP for the rest of my life.
I had a bad time with this and my lad was ill as well, and I had to come to terms with it over the course of about 18 months. It sucked, and I spent some time thinking how unfair it all was, so I know how you feel!
I decided I could either deal with the ITP on my terms, or let it rule my existence. I chose the former, and that worked for me.
Believe me when i say it wont rule my life made of stronger stuff people tell me so all the time : ))) just last 2 years been horrendous for me still working at it timing all wrong time to get ITP if there ever is a right time : ))))) I believe things happen to make you stronger Chocolate pancakes help though : )))
If this helps, I wear long sleeves most of the time, even in the summertime because I have lupus and ITP. I have found sunblock clothing, b/c due to the lupus I cannot be in the sun, and the shirts are long sleeved, but very airy and light. That way I don't have to worry whether I will have bruises or not, if I do they are covered. Same with my legs, long skirts and/or pants. My daughter will be getting married and I am on the hunt for a dress with long sleeves and long length, because I never know if I will have bruising or not.
I know its frustrating, especially when you get bruises and didn't bump yourself, they just appear. Sometimes yoga helps relax mentally and physically, that is one of my ways of dealing with it.
I did do Pilate's but I got told to remove myself from the classes because I laughed too much i and could not get in the positions :))) may give it a whirl again thanks for the idea .
Look likes you still have your humor so you will be fine. if you feel down & just want to rant, this is a good place to get support. we will listen, we know & understand how you feel. on the bright side, i have hives now & itching. Forced to take time off from work when it shows on my face since i look like i got bitten by bees or have chicken pox. Like what jason said, nobody wants to be near me when it shows. Just enjoy life when you can and have some down time, let go of depression.
I have several parks by were I live I go there to let of steam I just stand alone and scream aaaarrrrgggghhhhh not just for ITP that's recent but for other stuff but I don't care get some strange looks though :))))) better out than in .
I am staying strong from 6 years too and show off am more healthier than anyone. But when bruises attack from all corners, it's outside world which reminds us of ITP ITP, you are not normal. I am one in 1000/Million after all. Let them treat me different/special!!
Yup even I get them on knuckles. Even now I have one big bruise on my toes. I still remember, apart from big purple bruises, first time when I got 100s of needle like blood spots, I was scared to hell. Now got used to it so much. Just trying different kind of medicines. I tried Colustrum as someone suggested here, but that didn't work. Now yet to try Fish oil+Aloevera combo. Will let all know if it works. (Am least positive)
I'm like you - covered in bruises. It worried me when i was first diagnosed (10yrs ago) but I have since got to grips with "it's just me". Anyone who knows and loves me don't react to the bruises and that's all I need. I used to feel conscious of people looking when on holiday - now I don't give a dam, I joke with my husband that I'm a battered wife.
Love your body, accept your bruises and love life, don't be concerned about others small minds. Stay strong xx
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