Bad day...

[Pollyangel]

ITP... medication to treat it... chronic fatigue that comes with it... I normally put a brave face on it... get on with it.

I don't let family and friends know how scared I feel when I have no control of my body, when I think I'm going to collapse because my body feels as though it can't support itself.

I don't tell anyone I'm frightened that I might not cope working full time (just now I'm only working 3 days)... and that I struggle keeping on top of house work and laundry... and being sociable is something I can see far enough.

I've got myself upset this morning and that's not helping either. I know there are worse things that could happen... but god... what I wouldn't give to be 'normal'...

Do people here have ordinary lives? Work full time... socialise... without it exhausting them completely?

Sorry if I sound like a cry baby... just having a bad day xx

[Notorious_IVIG]

I hear you and feel what you're saying. Some days are better than others. Some days I feel I can conquer the world and other days, washing my hair is exhausting! I literally have to prop my head up. At this point, I listen to my body.. and usually, I can tell from the moment I open my eyes in the morning, if my body will cooperate with me that day. I've accepted it and roll with the punches so to speak. I'm living as 'normal' a life as I can. We've moved a few times in the past 4 years and are moving again next year because of my husband's job. Once my family and I are finally settled, I will be starting up my business in Antique furniture and home accessories again. I won't let my symptoms stop me from pursuing my goals. My family,friends and this group have played an important part with my mind set and yes It's scary,!but you need to be more opened and honest with your family about how you feel and what you're going through. A great support system can do wonders for you. Keep your heart and head up. Xx

[Pollyangel in reply to Notorious_IVIG]

Thank you...

I was having a bad morning...

In the main I don't let it beat me... but sometimes (like this morning) I just wonder if I'm kidding myself. I also don't have the patience to wait for my body to catch up with what my mind is wanting to do... Sometimes my own worst critic... lol..

[AWSAR]

Its a story of every ITP out there. Be bold n brave to handle it , Don't loose ur self. Everyday is different day. fatigue always bother u in many ways. but don't worry u r way more stronger than ITP . believe in ur self. Always speak truth and honest with ur family. so that they understand what u been through. Its not about to get panic , its about some precautionary measure just nothing else.

Yes i m doing full time work. 6 days a week. 8 hours a days. n socializing too. In starting everyone has same situation as urs. its like roller coaster . u dont understand whats happening to u.

So dont worry and get panic. just concentrate on ur body . u must know what is good for and what is not.

have faith and live strong .

Cheers

[ssbanu in reply to AWSAR]

It will be helpful if you let us know your platelet count and its relation with fatigue and other symptoms. Unfortunately, my PC is always around 10 and I've to reduce my work days to 2-3 days a week. Could any one help me to reduce my mental stress and suggest how can I remain a bit stronger both mentally and physically?

[AWSAR in reply to ssbanu]

My PC were 9 . its always under 9, n m doing job 6 days a week. I'm finance guy, basically office job. but pressure is here, n to speaking a lot .. forget about ur PC n ur stress vanish

[Pollyangel in reply to ssbanu]

My platelet count is a healthy 117 (from a test 2 weeks ago).

I get terrible fatigue until my count is a steady 40+.

I'm on Eltrombopag / Revolade... but I still have days where my limbs feel like lead.

Was just having an off day... feeling sorry for myself xx

[Fionn123]

Hi, you've just described me! I thought it was just me now I see that it is ITP causing all these symptoms and I need to pay more attention to them. My usual trick is to pretend they're not happening but when it gets really bad I have to lie down. I have just opened up to my manager at work which is a relief and I'm lucky that I work from home most days but it is definitely a roller coaster of emotions as well as fatigue. Do open up to your family and friends and don't try and do everything - be kind to yourself.

[majorindy]

Like almost everyone else the fatigue seems to be one of the worst aspects. Being retired I spend a fair amount of time reading what I can to increase my knowledge. One site that is helpful is PDSA.ORG Which is Platlet Disorder Support Association. Go to their drop down menu for a wealth of topics. "Warnings" is worth looking at because it lists foods and beverages to avoid. I feel that since I eliminated everything on the list (which included coffee) my energy level has increased.

[bubblesone]

Yes I am finding it hard to work, my platelet count is 7. I seem to be getting more depressed lately. A few weeks ago I took a low course of prednisolone, just 10 mg. But it seemed to make me really miserable, I have in the past taken 20mg for a week or so just to perk me up a bit. As I am getting older, I am 60, I am finding the fatigue, really hard to cope with. I think the fatigue seems to make you fill depressed. Has any body out there every tried to get any disability help with this ITP. Because I am thinking how much longer will I be able to work.

[Pollyangel in reply to bubblesone]

I am in the process of applying for PIP...

I will keep everyone posted of my progress x

[bubblesone]

Thanks, I will be very interested to hear how it goes. Good luck x