3 months since my Chronic lymphocytic leukaemia (CLL) diagnosis have been very positive and just getting on with stuff. Joined a spa/ gym so keeping fit and having time out at the same time. Reduced my hours to 1 day a week as a forensic nurse examiner so all good. I’ve had a busy week and today despite sleeping all night could not get up until 11.45 this morning feel exhausted and a bit weepy Annoyed with myself. Don’t know if it’s just a bad day or reality sneaking in Does anyone else have days like this ?
Hi @KayC I really feel for you and I just want to say I think your thoughts and feelings sound really natural to me.
I think you are like me and when I am in shock my body goes into practical mode, but when I think I am positive, achieving things etc. suddenly wham the exhaustion and tears hit me.
I think it is very natural to feel annoyed with yourself, I would feel the same, thinking that I thought I was stronger than that, but perhaps just let it all out.
Yes, there is a partly reality sneaking in and perhaps it has to.
Look after yourself and just be ever so kind to yourself and spoil yourself, you are human.
I really look forward to hearing more about you.
I think we definitely all have days like this, and more so in the earlier stages of diagnosis. Sometimes there is no rhyme or reason. Your just tired and as @Erica said, sometimes the reality of it all can just be to much. It sounds
To me like you need a good rest or a day planned with things you enjoy but that don’t make you work to hard! Let us know how you feel over the next few days. Sending lots of special wishes your way X
Thanks guys for your replies xx
I also have days like this but am much better at managing things when it happens. It’s important that you are kind to yourself and when this happens you pace yourself accordingly. When I was first diagnosed I found fatigue particularly difficult to manage from both a physical and a psychological perspective and would get frustrated with myself. I developed strategies that have greatly helped and no longer get annoyed with myself when the fatigue gets too much. Consequently I manage much better now. I also found talking to others on the forum hugely helpful and also reassuring. Remember you’re not on your own and we’re all here to support each other so keep in touch.
All the best, Peter
Morning @KayC. Just wondered how you were doing today?
I can see how many others can simply just relate to you having ‘one of those days’. I hope you are feeling better now?
Sometimes there is no trigger, rhyme nor reason for feeling how you feel.
It sounds like you’ve made huge changes to give yourself some you time since your diagnosis, which is great. But do also remember to be kind to yourself on the days where you do just feel extra tired or just a bit off, as you have been through quite an amount in the last few months.
Also do know that should you have days where you would like to talk anything through or simply pop the kettle on and have a listening ear- we are very much here for you- 0808 2080 888.
Take Care, Lauran
Thanks for this Would love to hear about the strategies that have helped you if you are willing to share. I know everyone will be different with their coping strategies but any experiential advice welcomed
I’m feeling better today thanks still weary but not as upset about it x
Hi @KayC. I’m glad to hear you are feeling a little better. Different things helped me. Counselling was really useful - just giving me that space to talk. I have had this a few times now, when things are feeling too much. However, not everybody likes the thought of counselling, it’s a personal choice. Finding an activity that can really take your mind to a different place - for me that was swimming and just giving myself time when I felt a little low as well - not pushing through it which we all like to do.
I’m sure others will have things to share to x
Apologies for the delay in replying. Early on I had counselling which really helped me to stop feeling frustrated with myself and made me understand why it was important to be kind to myself. Also I find I need to take a bit of time each day and reflect on how I’m feeling and then aim to plan what I think I’ll be able to achieve and what I need to push back until I’ve more energy. I always try to make sure I achieve something even a small task as then I feel I’m still able to look back at the end of the day and feel I’ve accomplished something. Through the counselling particularly I learned not to feel angry with myself about what I’ve not been able to achieve. I soon realised that getting angry and frustrated with myself was exhausting in itself and using useful energy. I also have some good friends who I can talk to when I’m having a particularly challenging day. I have a couple of amazing friends and colleagues who are incredibly perceptive and know to look at me when I’m having a low energy/brain fog day and they are incredibly supportive. Also I found talking on the forum and hearing that others had the same challenges but were able to carry on was really helpful. I’m so glad I found the forum soon after my diagnosis.
Overall my priorities and thinking have changed since my diagnosis. This didn’t happen overnight but things are definitely much better now.
As I said before, remember we’re all here on the forum to support each other and you can reach out here in a safe and non judgmental environment.
All the best,
That is really helpful Peter thank you. I think part of my trouble is I am a natural helper who always is at the forefront of looking after everyone else. I’ve been a Nurse for 44 years and it’s just who I am as a person. I’m also a whirlwind of energy whether that be social , family , keeping fit etc and I expected to be this way until the end. I’m furious with myself that this has happened and the impact it is having on me as a person but I’m playing it down to everyone even minimising it as I don’t want people to be upset or worry and I’m probably in a bit of denial I need to sort myself out !
I totally get where you’re coming from as I was also someone who took a similar role being the one people came to to fix things. It took some while to adjust to being the person who would need support from time to time. I think this role reversal is particularly difficult for Doctors and Nurses as they are usually the ones who are making the decisions and taking the lead in caring so the adjustment is more difficult. One way to look at it is after all the help you’ve given others over the years it’s fine to have a bit of role reversal for a while and have others put you first for a bit.
All the best,
Try to have a rest. Give yourself time just lying on the sofa and relaxing.
Hi @KayC I have been thinking of you and your post, you wore me out just reading it.
Yes, some of us were just born (and brought up to be) carers and helpers, they were seen as qualities in my house. I was also brought up to have the ‘I am fine’ facade on so people would not worry about me.
Also to be seen as a whirlwind of energy and it is so hard when I still want to be, but my body doesn’t !!!
No, you don’t need to sort yourself out you seem to have a very good insight into yourself, denial is a natural body defence mechanism against shock, I think that you are sorted out. It is very wearing being furious with yourself.
How are you doing now?
Be kind to yourself.
Personally my down days are nearly always linked to being tired.
As you start feeling a bit better its just natural to push a bit harder…Exercise is very important i do a lot of walking but it took me a while to realise that i maybe overdoing things.
All the best and hope the happy vibes are with you soon
I really agree with you @Leefer
Also I feel better, then overdo it, and go backwards.
I never learn
Everything feels so much worse when you are tired doesn’t it!
Thanks for thinking of me. Had to really wind back this last few days as have got a viral chest infection which has exacerbated my asthma So coughing for England ! Contacted 101Sunday as wasn’t sure if I would need antibiotic cover due to Chronic lymphocytic leukaemia (CLL) but practitioner I spoke to decided not I’m ok though just cracking on Had a decent day at work today not too busy. Just got to get on with it haven’t we. Hope you are ok xx