Essential thrombosis

Hi I’m new here … I’m 33 found out 8 years ago I had essential thrombosis I came from hospital not knowing what it was and just given aspirin fast forward up till 18 month again I got really unwell night sweats shortness of breath etc … went doctors had bloods and got phone call to go to hospital immediately I was so confused waited till the next morning And went into gp who explained everything then got in touch with my now consultant I have a needles phobia and had to start interferon immediately for the next 7 month I went back to the hospital so they could do this weekly I have now braved it and now doing it myself :grinning::grinning: I don’t have a really supportive family tho we do get on but since my diagnosis nobody knows not even my children (single mum tho there dad is good) I’m so ashamed to tell anyone and I don’t know why … lately I’m so tired again and my symptoms have come back I have missed my appointment with my consultant and I’m so scared again now to go back and see her.
This sound so silly typing it all out but I was so happy and bubbly before enjoyed going work etc ….now I’m so tired all the time and have a can’t bothered attitude even tho I’m feel drained every second of the day even if I get the best of sleep I just feel lazy .


Hi @Shellwa, welcome to our forum, Nothing in your post sounds silly to me and hopefully you writing this post might help you in some way. Thank you for taking the courage to. post.
What do you think might help you now?
It is not going to be easy for you to face your fears, but perhaps you have posted because you are looking for help.
I have found writing down all my questions and symptoms, their severity and impact on my life and then re-scheduling my appointment with my consultant helped me.
I have to write down all my questions as my mind goes blank when I walk into a medical room. I have learnt to be pleasantly assertive as well.
Please let us know what you decide to do and how you get on.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Be very kind to yourself and please keep posting

Hi @Shellwa and welcome to the forum. I’m really glad that you shared how you are feeling with us - it can often be hard to say how you really feel to family and friends.
@Erica has given really good advice. I think it’s really important for you to to attend that appointment. Often our fears stop us doing things but we feel better once we have faced them - easier said than done I know! Is there anybody you could talk to who could support you through this?
I would really suggest giving the helpline a call. It might help you in thinking about next steps X

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Thank you for replying to be honest I think not having energy at the moment and feeling a lot more tired than normal is making me feel worse and I know it’s the side effects from the injection but I just can’t shift it lately.
I don’t have anyone to talk to as I haven’t told anyone about my diagnosis no family or friends know and to be really honest and I don’t know why I don’t want anyone to know. I feel stupid writing things down when I go see my consultant as I know when I’m there I get to afraid to ask and then feel worse when I’m home that I haven’t asked if that makes any sense. I just feel in a bit of a rut lately have no motivation no energy I used to love walking and exercising before and now I don’t even walk for 10 minutes.


Hi @Shellwa I don’t know what the weather is like with you but we are lucky enough to have a lovely day here.
I found just going out for a 5min walk helped me and then after a couple of days I was able to up it 10 min and it actually helped my motivation and I felt just slightly more energised.
It is up to you, you don’t have to tell anyone about your diagnosis, but perhaps I found it actually isolated me, I realised in lockdown that I really did miss social contact and interactions, especially working from home as well.
After a while the outside world seemed a scary place to me.
I felt so silly writing things down too, but it has helped me so much, that appointment is my time and what helped me is actually telling my nurse and consultant, they were strangers, so why not., how fearful, nervous and scared I felt and they were really helpful for me.
I also saw my GP and told them how I was feeling and they suggested talking with a professional and it helped me.
You have been so, so brave reaching out and posting on here, perhaps you might consider ringing the Blood Cancer UK support line on 0808 2080 888, I have found them lovely.
We are here to support you on here too.
Be ever so kind to yourself and please keep posting

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Hi @Shellwa,

Thank you so much for taking the time to share with us. It sounds as though it’s been an understandably worrying time for you. You’ve been given some great suggestions already, and I just wanted to re-iterate that you’re welcome to reach out to our Support Team on 0808 2080 888 or We’d be happy to talk things through with you, and support you however we can.

There’s certainly nothing silly or lazy in what you’ve said. It sounds like you’ve been feeling really so poorly, and it can be hard to do things when we feel that way. There are no stupid questions, and your team will have heard them all before so you’re not alone in them. I’ve heard of some people handing over the written questions, if it’s too scary to say them out loud.

Do you perhaps have a Clinical Nurse Specialist, whom you could call to share your feelings with? Or perhaps you could speak with your GP? I’d encourage you to speak with someone, as how you’re feeling is understandable, but you don’t have to go through it alone. There’s support out there for you.

Our mind and emotions webpages might be helpful for you- there’s tips and strategies here as well as stories from others.

Take good care of yourself, and keep in touch.

Best wishes,


Hi @Shellwa I just wondered how you are today, we are here if you need us.
Be kind to yourself

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Hi all had a rough few days managed to get gp appointment as now have a uti and on antibiotics spoken to them regarding my anxiety around everything also who advised me to speak to my consultant I finally found it in my to call to make appointment for my bloods and have a chat to getting through to wrong department which totally knocked me … hopefully the antibiotics will kick in few days and have set myself a goal to try and call again Monday.
I know this sounds absolutely stupid when I write it down and the saddest part is I used be the most confident person ever and wouldn’t leave anything stop me.
I think not working is really taking it toll socialising etc but I used to work in the hospital on my feet for 12 hr shift there’s no way I would have the energy at the minute but I miss it so much.

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Wow, @Shellwa I certainly did not think your post sounded stupid, as I was reading it I thought how brilliantly you had done and what you had achieved today.
Isn’t it interesting.
In my experience if I have a UTI (and I have certainly had a few in my time) it really drags me down physically, emotionally and I do not achieve anything by certainly feel so much better when the antibiotics work and then I realise how rough I had felt.
How lovely to have had a job you loved, I always had jobs because they were useful financially or for my life.
As you say you have not got the energy ‘at the moment’ and I found I needed to work shorter hours.
I really agree not working really takes it toll socialising wise.
What I try (I am work in progress) is to celebrate the little achievements in some way and on my walks think about what I have to be grateful for every day and I am not so silly as I think I am.!!!
I have found that people on here often understand me as my family cannot.
Look after and bevery kind to yourself and I hope the antibiotics help soon,