I have a blood disorder which changes week by week

Snigger

Hi What happens if you have a condition that in not visual. I have a blood disorder which changes week by week. I suffer from extreme fatigue due to this condition .  I have nurse come  very week to check blood. my blood results are very erratic .  I asked why would I still suffer from extreme fatigue even if results are up and the answer was my body is constantly coping with constant change. The fatigue leaves my muscles very weak and find it hard to walk at times. There are days when I can't do anything but what if I can only my day of assessment . My condition also has took its toll and has led to anxiety and insomnia . I used to get transfusion every 2 to 3 weeks but recently my blood has not hit my trigger number which is below 30. However how do I explain that while my blood is up I am still so tired. I had my spleen removed to see if it would help my blood disorder but operation was unsuccessful and results fell.again. Recently I haven't needed transfusions but I still have the condition .  it is incurable..  Can you give me any advice please. Many thanks 

Snigger

Sorry meant uncurable 

Sam_Alumni

Hi @Snigger

This sounds really difficult to deal with, I also have a condition which features fatigue and even when I am on an even keel, the fatigue can continue as my body catches up on itself which tallies with what the doctors are telling you too.

I understand that your fatigue is down to your condition, but I wondered if any of these tips from the NHS about fighting fatigue might be of use to you?

Snigger

Thanks very much Sam how do I explain my fatigue at DLA assessment . I also suffer from anxiety due to waiting on blood results etc. How do you cope.

Sam_Alumni

There are so many different coping strategies and I think every person is different so it's important to see what works for you.  

As for explaining your fatigue, it is about honesty and information, so getting as much information from your doctors as you can and then explaining exactly how you are feeling.

You arent alone and there are lots of posts on here about claiming benefits and going through assessments that might help.

You can speak to the helpline on 0808 800 3333 too for more support.

Snigger

Thanks so much Sam I really appreciate that.