Chronic lymphocytic leaukimia

[-Jeryl-]

I was diagnosed with cll 9 years ago . At the time it was scary but waded through it too where I am now .

I haven’t thought about my cll for months at a time .

With all that’s happening around the world now I feel iv had too take it out of the box and I do feel a little vulnerable with it .

I have a daughter who has cystic fibrosis and the last year if I haven’t been in work iv been busy supporting her and looking after my grand children .

I feel I’m a upbeat person but I’m so very very tired .I have a pain that’s got worse between my shoulder blades and of late I haven’t had time too go to the doctors .

I can’t even remember the last full blood count I had .

Sorry too sound a drama queen but so so very very tired and exhausted .

Best wishes too every body x

[DrunkJam_UK Administrator]

IT would be odd to not be more scared and worried and exhausted at the moment.

Being tired is part of the deal I think. And, by tired, I mean, tired like nothing will make you feel rested.

I'm sorry for this.

Some doctors are offering Skype consultations or home visit blood tests, so, you MAY feel that one of those is useful to you.

In any event a call to your GP, and / or to the LC nurse helpline will help ease your concerns.

Sorry for how stressful it is. Please do keep talking here.

And take care.

[-Jeryl- in reply to DrunkJam_UK]

Thankyou,for now I wil leave it as feel nurses ,doctors etc have more than enough ton their plate at the moment but Thankyou I will do in the future Thankyou for reply

Jeryl

[2003UK Champion]

I don't think you are a Drama Queen, Suddenly I also feel I am very aware of my CLL too, I was diagnosed in 2003. The media is never ending and I have a yukky feeling in my stomach and my mind is telling me' hold on you are not invisible'. I also find when I am tired my mind and anxiety start spiralling. I believe I can get too tired to actually sleep sometimes. At that point I actually ache for sleep and I know hold tension and pain between my shoulders. I now do upper body exercises to release tension.

As for your pain between your shoulders my GP is still making phone appointments and I have no medical knowledge at all. I have found it is only fair to tell my GP the whole picture as you have done in this post.

The Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. If you have a query which is medical, please ring our nurse on the regular helpline number. Currently our day nurse is working Monday-Friday 9am - 1.30pm and our evening nurse is available Thursday and Friday evenings 7pm - 10pm. Please note.

Posting on this site will actually help me get through the next few weeks, I will need everyone's support.Having a bubbly bath, a mug of hot chocolate and listening to my favourite music really helps me. Stay safe.

[-Jeryl- in reply to 2003UK]

Thankyou for your post ,yes all you’ve said I feel the same ,I’m a dread full sleeper and very rarely sleep through the night ,

My taste buds have changed aswell and don’t know why but food I enjoyed I don’t now .

My doctor who all though is nice ,I feel he doesn’t really understand ,

I yes too go to the hospital but because I need regular blood test for a under active thyroid my doctors now do them .he tells me I have fibromyalgia with my aches .

I think sometimes he thinks I’m just pain in the neck so now very early go .

I don’t know some of it is just getting old aswell .

Take care everybody

Xx