Chronic fatigue

General chat
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Hello, I have not introduced myself (but will do on the appropriate forum), though I have posted.
But briefly, I am a recently appointed ambassador and looking forward to contributing more in the future. One reason I have been not contributing so much this month is…guess…yes, fatigue! It is a difficult topic, but one that resonates with so many blood cancer patients. I attended a seminar last year on this organised by our friends at Leukaeamia Care. It was interesting to get many contributions from people, and here is a brief snapshot of the contributions. I have also included some of my own opinions on the subject:

  1. Learn to be kind to yourself: Do not beat yourself up about it. Make time in the day to treat yourself or do something which you enjoy or helps deal with your fatigue (e.g. exercise. more of which shortly)
  2. Cancer related fatigue is now a recognised symptom of what we have to deal with, and do not listen to anyone who tells you otherwise. Of course the reasons can be complex and individual differences exist, but there is a common thread and even if it has not been proven scientifically (how is it possible to prove something that relates to perceptions), most specialists have a good appreciation of it.
  3. Learn how to recognise (or even describe it): At one of my appointments, when I described my symptoms my specialist immediately chipped in with 'Yes, that is definitely your Chronic lymphocytic leukaemia (CLL)"
    I charectirsed my fatigue as follows:
    i) Unrelated to lack of sleep (I can deal with that through…sleeping!)
    ii) Sudden onset. One minute I was feeling fine, energetic. Next I felt the need to sit down, and doing simple things seemed like an effort. Sometimes even felt the need to lie down. Because it happens suddenly, I wonder if I am just being lazy…but see first point.
    iii) My limbs felt heavy. Even lifting an arm felt like an effort.
    iv) Slightly lighted headed.
    v) People in the room seemed far away. I am outside looking in.
    vi) Finally, I can only truly recognise this sort of fatigue by comparing it with how I feel when I am fine. Then I start to say things like 'ah, right, now I can do things again…this feels great. Now I really know that I was not feeling OK before.
  4. If you are still working (like me), then do sort out something with your employers (flexible working for example). They have an obligation of care. I managed recently to get my employers agree I could work from home.
  5. I know this is hard sometimes, but try to remain positive and remember the feeling will pass. If you can raise a smile or make a joke with a friend it can help tremendously.
  6. exercise if you can, Again, it can be hard to get out the door (I found this recently), but once outside I find it refreshens me right away.(Recently, you also get a chance to fly due to the storms, Just wait for an appropriate gust and watch with delight as you take off. But seriously, be careful at the moment).
    Once you have followed some of the tips above hopefully it will help. But always discuss with your specialist. Hopefully they will be able to reassure you, but the discussion can help if it is an indicator of something changing with your condition.

As for me, I am currently on a clinical trial for Chronic lymphocytic leukaemia (CLL). And I am sure my fatigue is related to this, since whilst I did have some fatigue before it has definitely become more frequent. I do not even feel like reading when it is bad, let alone contributing. But today is a good day, hence this post. I am fairly sure it is just a temporary thing in my case. Probably fighting off some bug as well.
What helps most for me is running. I am currently training for my third marathon and have done a lot of fundraising via running for Bloodwise. Will be back again for the Great North Run! I have written about this in my first post somewhere on the list.

Enjoy the good days

I hope you found this post interesting and helpful. If not I will have word with the author :grinning:

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Firstly David, welcome to the forum! I’m so glad you’re having a good day today and have been able to post these useful tips to help manage fatigue which many people on the forum can relate to. Amazing that you’re still running and training for your third marathon and fundraising, we really appreciate this. Hope your fatigue at doesn’t last too long. Look forward to working with you as an Ambassador and supporting others on the forum.

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Thanks, David, I could not have written your post better and it did me good to read it. I agree with whatever exercise you can do can be beneficial. I also believe in fresh air and interaction with people. I am a pilates and Zumba girl myself. However my fatigue can also come on up to 48 hrs after I have overdone it emotionally, practically or physically. I do not deal with well with what personally stresses me, it suddenly gets all to much and I can get quite emotional and tearful. There are also times when I need a nap or duvet dive. Personally I do not think anyone that has not experienced fatigue can know how it feels. Congratulations in joining the Bloodwise Ambassador family, I am sure you will be a great asset.

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Yes Erica, it totally is… I get so fed up of everyone around me not understanding and not allowing me to be fatigued. I have been like this ever since I was diagnosed and its only through sheer strength and determination that I carry on

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Hi, some great points and I can second all of them. One thing I wanted to ask, as I am still working, bearing in mind I have already done as you suggested, how do you explain/speak to your colleagues about it? Mine know my situation but soon forget and moan about their own ‘I had a late night’ or ‘I’m tired today’ or ‘my back/leg hurts’ so I don’t always get the help I should. I come home from work in agony and barely able to move. As I said I have already been through the speaking to my employer and I do already work part time and they are flexible with the work I do for Bloodwise… really its the other people around me!!

able to move.

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Also I have found that what I eat makes a real difference. Here is a blog I wrote for Bloodwise

https://bloodcancerlivewell.org.uk/eating-well/annas-story/

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So nice to get your lovely comments and will reply soon.

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Thanks so much for your lovely comments Erica. Most of all, I am really happy you found the comments helpful. I can totally relate to what you are saying. I think many others will relate also to the emotional side. All I can say is point 1, plus you can be proud of yourself as you are clearly doing all you can to keep well. Therefore you are definitely allowed to cry if you need to sometimes. You should have seen me when I glimpsed the Bloodwise supporters towards the end of the London marathon. :grinning:

Keep up with the pilates and zumba. I once tried doing a pilates class at my local gymn and it was remarkable how I managed to keep falling over!

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Hi AnnaMam, thanks for your kind comments about my post. I just read your excellent blog. Lovely picture as well! Reminds me of my daughter when she was that age.

Really appreciate your question, you hit upon a really challenging area, namely how to manage relationships with colleagues, how much to tell them, and what to do when things get difficult. This of course could almost be a category on its own, particularly how to mange flexible working.

I wish I knew all the answers, but I can at least relate my own experiences which I hope help.

From what I understood from your post, you managed to agree flexible work, so this means you are able to go home if you feel unwell?

However, i also interpreted your comments as indicating that there is a lack of understanding from your colleagues about your needs. Dare I say, it sounds like some of them might event resent it.

This sounds so familiar to me. And really worth discussing on the forum, so really glad you raised it.

What you describe actually relates to the fact that people generally have a poor understanding of blood cancer. And as mentioned in the last post, fatigue is particularly hard for others to appreciate as it is mainly an ‘invisible’ symptom. So they probably do not appreciate that their comments are rather insensitive, but you can at least rise above it by saying to yourself that you are coping heroically with far more than just having a late night :grinning:. Or even try to laugh it off. Or you could ask them how they feel next day, whether they are alright. You never know, perhaps they have something more serious going on which they are hiding.

So what is the big solution of dealing with colleagues? Well, I am not really sure to be honest. But one possible way is to be open about your condition. I see you have already done so, which is really admirable.

Though clearly this approach will not work for everyone. I can see both the benefits and drawbacks of being open, And in my case I have done a bit of both. For years I was almost entirely secretive. To illustrate this, I only recently told my daughter when I started the clinical trial. She was a toddler when I had my chemo, and while she was growing up we decided not to worry her. At work, I initially decided to keep it a secret and only really began telling a few trusted colleagues last year. But a lot of people know about it now, and I am considering also being even more open about it at work.

As your colleagues may not fully understand, I wonder whether it would be worth sharing some leaflet, or other appropriate information, which explains the challenges you face. As you probably know, there is a lot of such information available, from Bloodwise and other sources such as Macmillan who do some really helpful booklets. Or even a web link. Or perhaps you have already tried this?

It is really hard to know what the best approach is, and you can probably see from my comments I also had a hard time working out how to deal with colleagues. And then when I do decide to be entirely open, how best to do it? An email? An annoucment at a meeting? I decided against the latter as it seems a bit dramatic, so probably will opt for an email. And possibly next time when I ask for donations for my run, as it could also help the fundraising,

One thing I decided a while back is not to worry too much about it. We have other far more important stuff going on than to worry about what people think. As I am currently working from home due to joint pain and fatigue (and also a bit of self protection as a lot of people had coughs and in one case even a chest infection,very scary for us!), my boss informed me that a lot of people are wondering how I am (or perhaps wondering why I am not at work). My reply was that I gone far beyond worrying what people think. On the other hand it probably is the time to make an official announcement when I return to work. Inevitably some will understand better than others.

I think I would like to raise this topic further on the forum, and to tap into others’ experiences. This is the value of such a resource. One idea is to share examples of how people have told colleagues, what worked and what did not. Thanks again,as you see your question sparked quite a few thoughts and ideas!

Do post how things go with this and hopefully you can find something which makes your colleagues more empathetic.

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thanks Bav! As I write this am about to go on my first run for 2 weeks. The joint pain prevented me, shame as my training was going so well. But thinking about why I am doing it is a fantastic motivator. 3 weeks ago I managed 17 miles but today I will be happy with 3. Will let you know how I get on.

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Hi @DavidAmbassador, you raise many really good questions. Every situation is unique. I did not deal well with my employers. When I was diagnosed I rang in to my Line Manager and just said that I would not be in to work that day as I had Chronic Lymphocytic Leukaemia. He told the Department. My diagnosis was like an alien concept and I could not explain to them what I did not understand myself. I did not realise that my fatigue can come on immediately or up to 48hrs after I have overdone it emotionally or physically and I do not deal well with what personally stresses me well, it is all too much and I can get quite emotional. My Manager panicked as I had always run my department efficiently and he realised he did not know what I did. Therefore meetings were held without me and the proactive roles were taken away and I ended up with a reactive desk bound job. We miscommunicated instead of communicating which I regret, but I felt very isolated and I was looking at their behaviour and not my own, I was in a parallel universe with all my fears, thoughts, emotions and ‘poor me’s’. They could not understand why I could attend a meeting locally and not across London in the rush hour because I got very feint standing on public transport. I could give talks in some situations on some subjects and not others because of faintness and stress levels, but I did not communicate that well. I had a lot of banked leave and I so I was able to use that to reduce my hours per week. Other members of staff were unsure how to be around me and, again it is individual, but I now feel it was my responsibility to open up the conversations. Now, in hindsight, I understand myself so much better. Yes, I would advise people to read Bloodwise factsheets and booklets and I also think counselling would have helped me understand myself better soon after diagnosis.

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Hi @Erica. Your comments describe well how having blood cancer affects working life, on top of all the other things we have to deal with. I recognise a lot of what you say -It’s hard for me to pin down what happened with my career and why, but all I can tell you is that blood cancer definitely had a detrimental affect. Things were never the same again after I recovered from chemo. I told myself not to focus on work and tried to take the pressure of myself, just do my job but do not try to push forward. But this made a massive difference, and I never really had the same roles again, Then I started doing work related voluntary work as a way of compensating for the fact that the day job had gone stale I had a really interesting role, and got to travel. I guess I was already putting personal experiences above everything. But this made things worse as people did not recognise the value of my work (even if I knew it had tremendous value) . So, strangely, like you, I am also in desk bound job, whereas I used to go out and meet a lot more people. There is no doubt my path would have been a lot different without the Chronic lymphocytic leukaemia (CLL) dx, but it has not been all bad - I have opened up new experiences, and I appreciate better than I did before that there is much more to life than work.Great chatting with you.

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@DavidAmbassador Hi David, I echo others in saying a huge thank you for taking the time to share these tips, it is so much appreciated and am sure it will many people :+1: :grin: I am so sorry to hear about how much it affected your work, it sounds like it understandably had a huge impact on you? It was also lovely to hear how much voluntary work has helped you, it sounds like this has had a positive effect for you?

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Hello David, thank you for your reply which is very helpful.

You are right, some of the colleagues probably resent it and its also a lack of understanding of blood cancers… the ‘once treatment ends that’s it you bounce back’ and it is so frustrating and I don’t think there really is an answer. They definitely know about the challenges I face but Some people are just all about themselves and will never be sympathetic… that is one of the things I’ve learnt about people since my diagnosis, at the end of the day they only care about themselves. There is one or two who are particular ‘needy’ types who are constantly seeking attention and sympathy for every ailment under the sun and sadly their voice seems louder. As you say I do have to rise above it on a daily basis and depending on how I’m feeling I sometimes ‘bite back’ reminding them who they are talking to. Perhaps I should have a meltdown at work and then they’ll realise! Its hard though as getting through treatment and recovery has given a different perspective and so it goes against the way I am now.
I am open about my condition and have been from the start, my leukaemia was aggressive and I was extremely ill, was hospitalised for 6 months, I live in a small town so everyone knew and was shocked as it happened overnight… these people know all this.

This is definitely something we should start a thread on… other peoples experiences, good and bad would be interesting to know

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Thanks @SuBloodcancerUK. Yes, I am positive now about my work situation, I no longer have what I would class as a ‘dream job’ but it has some good aspects and, most importantly, I have reduced my stress, so at least I did the right things for my health. Yes the voluntary work was a saving grace, I met so many fabulous people with whom I am still good friends (And in many countries!) And now it is fabulous to do voluntary work for Bloodwise as an ambassador. I am so looking forward to meeting people and making new friends with some fabulous people, such as yourself :grinning:

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Hi @AnnaMam Yes, I definitely will start a thread on this topic, will have a look where best to post it.

I probably could start it off by referring to our conversation, if you are happy with that?

You are one of the troopers: I wish I could just press a button and make things better for you at work, but so glad you found my reply helpful. I hope you will be able to find someone supportive at work who helps your situation.

I have another topic which unfortunately has become relevant to me: Dealing with pain! Fortunately I am told in my case it is only temporary, but it will be interesting one as well. I suppose it would come under the wider umbrella of dealing with the side effects of treatment.

Take care, speak again soon

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Hi. I was only diagnosed 4 weeks ago but I’m struggling quite a bit with the fatigue I feel most days. I’ve always had a very busy life and been on the go I’m only working one day a week now as a forensic nurse examiner but I’m pretty wiped out the day after my shift I went to aqua fit this morning trying to do some exercise which is a bit less energetic than what I have been used to but ended up falling asleep on the garden sofa I was so tired Do all Chronic lymphocytic leukaemia (CLL) patients feel this way and any top tips to manage constant exhaustion whilst living a normal life ?

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Hi @KayC Fatigue appears to be a common symptom with many blood cancers.
The Blood Cancer UK website has a lot of information on it.
Fatigue is my main symptom that affects me on a daily basis.
I also have Chronic lymphocytic leukaemia (CLL), and I have had it for 18 yrs, on watch and wait, which means you live with the symptoms you were diagnosed with.
When I was newly diagnosed and over the first 5 yrs I worked full time and just worked, slept and ran a home.
However over the years I have got to know myself and how I tick, what is important to me and who I want to do it with.
I realise that since diagnosis I do not deal with what personally stresses me well and that wears me out and fatigues me.
My fatigue can be set off when I overdo it emotionally, physically or practically.
It can come on immediately or up to 48hrs later.
I am a girl for an hours nap in the afternoon sometimes, sometimes I need to duvet dive but sometimes I really find fresh air and appropriate for me exercise. I am a walker, which is great if you are nosey like me and I appreciate nature more now.
I try to get a good nights sleep by going to bed and getting up at similar times each night.
Personally I am now a ‘lady that lunches’ and don’t do evenings which seems to work well with my friends.
My energy wains in the evenings.
Finally I want to say yes, I have made adjustments to my lifestyle but for me life is good today.
Others might have other thoughts and I look forward to hearing them.
If you feel you need some medical or emotional support to help with your fatigue please do ask for help.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Be very kind to yourself you are probably still in shock because you were only diagnosed 4 weeks ago.
Look after yourself and I look forward to hearing more about you.

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Hi

Thanks that is really helpful to get advice from someone who has had many more years than me of living with Chronic lymphocytic leukaemia (CLL) and learned over time what the fatigue triggers are and how to adjust. You are right I am in the early stages of acceptance and associated frustration of accepting I can’t do everything I used to do without paying the price. I will get there :grinning:

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Hi @KayC you sure will get there I can tell and we are here to support you, give yourself time I was in shock for ages and looking at the behaviours of others and not my own and you certainly cannot control what others do.
Be kind to yourself

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