Well but not feeling wellness

Well but not feeling wellness

Although I am well I have not had the feeling of wellness since I was first diagnosised with CLL (I went to my Dr because of not feeeling well, had a blood test which came back with CLL). Unlike many people with CLL it affects my daily life. I can only do certain things if I pace myself (I'm 56 so old age isn't an excuse). I don't feel depressed, I don't want a happy pill but a get well pill that gives me back a feeling of wellbeing. I have a great zest for life, I am a glass half full person who wants to go out and enjoy life but is handicapped by what I can realistically do. I feel much happier what I have managed to do something I enjoy but pay for it by being tired for the next few days. Stress very much effects my CLL. When I think that at one time I had a full time job, three children and a large house to run and I just managed. Now I find I cannot take on too much. I don't want to come across as self pitying as I still give thanks for the life I have. I know that I have much to be grateful for. Health and happiness are priceless.

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  • I think so many of us with identify with this feeling Jangreen and may have even forgotten what it feels like to be truly well.

    It's the early stages for me but I'm pretty sure that I've had CLL for some years prior to diagnosis (based on lymphocyte levels which were being monitored without my knowledge).

    Comparatively speaking I'm well but never completely well...

    Is it my CLL causing it or some totally unrelated and historical condition like my O/A and IBS? How can I know and how can I avoid the assumptive link?

    I'm beginning to wonder if CLL isn't the 'death by a thousand paper cuts'. And I suspect it's why GP's don't always get too excited by the chronic nature of our condition and it's apparent manifestations, particularly in the very early stages. Often it's nothing seismic but it's an irritating condition like dry eyes and mouth or an increase in shoulder pain.

    I'm having to rethink this and unless the GP can be sure it's CLL related and will not resolve itself until I'm treated, then I want the ailment to be considered as a stand alone medical problem (that may aggravate my CLL).

    As for tiredness...ah well, I've no answers for that one but I'm pretty sure it's the one thing that's going to affect how I live the rest of my life. I've read it's better to try and work through it rather than give in. Is that even possible? I know I'll try though because like Jangreen, I won't give in until the very last paper-cut.

    I do believe stress control and general attitude are key factors and I'm refusing to take on any 'sick role' until absolutely necessary. But I know that whilst I'll never 'leap any small mountains' anymore, I'm sure as hell not going to fall at every molehill!

    Love to all,

    Newdawn x

  • Well said, that goes for me too.

  • One thing I have learned with CLL for 15 years...as you said...pace yourself...you have a wonky immune system to start with, cytokines are popping off when they shouldn't be, your white blood cells are fighting infections by the minute with half an army...and a bunch of no good deserters that don't take orders anymore... a few gene generals are missing in action, so commands down the line are disrupted...and I hear the cooks are about to start a mutiny over the corned beef...

    This is no way to run an Army... you get my point...

    There are things you can do...get daily exercising , eat well from scratch and have a full workup with test like B12, B9, VitD3 etc etc...

    There are no quick fixes...short of treatment and even then...you may never regain a feeling of wellbeing. Treatment did lift my 12 years fatigue, but then other issues emerged...

    SO...

    Don't limit your life in anyway ...just do it in smaller bits... with time to recover.

    ~chris

  • Ahh, but it makes those rare days when you feel really well so much sweeter! Trouble is that on those days it is so much harder to stop before you overdo it...

    Great armmutiny (army/immunity/mutiny) description Chris!

  • so well put!

  • Fatigue is a well known symptom of CLL. Moreover, due to elevated levels of inflammatory cytokines, it like we are always in the prodrome of an illness, constantly feeling a nonspecific tired and achy as we do before we come down with a particular illness. This is quite variable, but as others have suggested, rest and pacing is good. I would add an anti-inflammatory diet. Obviously, the less disease burden, the less likelihood of the fatigue issues.

  • I have felt like this for most of my adult life and put it down to an inability to process normal levels of stress. It is a physical thing which becomes psychological. Lots of things trigger this malaise but what it comes down too is my body treats normal stress as overload.

    CLL may have triggered this condition in you - not all people with CLL get this, especially in the early stages.

    I also have asthma and arthritis and nasal polyps suspecting me to think that my immune system has been unable to handle things properly since childhood.

    Exercise seems to be the answer - something I haven't managed to set up as a regular routine. I tend to avoid things and activities that stress me (eg late nights, social activity) - not a satisfactory solution at all.

    anyway, just wanted to send you a virtual hug - it isn't easy getting used to not being able to do the things we want to, especially when they are normal everyday things...

  • I feel similiar, perhaps not quite as bad but after friends left at Christmas I slept for 14 hours and stayed in bed for two days.I travel a lot and find the tension of being at other peoples agendas and times exhausts me particulalrly yesterda when I was to get connecting flight s that didnt and extra costs of £130.00. And I also find generally six hours sleep and I wake up and can not go back to sleep although I still feel tired. Tension definately affects me.

  • Sometimes the body simply dictates how little one can do and no ammount of wanting to do more, will make it possible....you are unable to push yourself through and have to give in.

    There is also much anecdotal evidence to show that levels of fatigue bear no relation to the burden of disease and is something that makes rest necessary but even then doesn't alleviate or remove it-ie., batteries don't feel recharged after the rest.

    sparklerx

  • I would just like to add, that it does seem to be a fact, that we are all different and that CLL affects each of us in our own unique way... just another complexity of the disease...

    Sparkler x

  • WEll said

  • "Fatigue is a well known symptom of CLL."

    Not until very recently at the RD&E Hospital Haematology Dept.!

    It was a case of "Well, you're not anaemic, so you shouldn't be feeling tired".

  • A quote from the late, great Prof. Terry Hamblin from his article, 'Mutations of Mortality, Fatigue in CLL',

    mutated-unmuated.blogspot.c...

    'I am absolutely convinced that CLL patients get fatigue as a symptom. Trying to find out why is very difficult. Jumping into treatment may not be the correct path to follow. More research into this difficult problem is clearly needed.'

    That's good enough for me!

    Newdawn

  • Interesting post Jangreen, I am afraid I can concur that I have forgotten what it feels like to be truly well since CLL diagnosis and I have not required treatment. But have also developed other issues.

    There was an interesting UK paper published recently following a study into some of the mismatch in patients’ perceptions of the illness state, the symptoms they are experiencing and that perceived by the doctor and the consequences of doctor patient communication for CLL patients. It focussed on “watch and wait”, but does touch on many of the issues experienced by patients at all stages of life with CLL. Of course this is a small cohort study and there will be a much larger range of patient experiences, however this study does address much experienced in the community and highlights the need for exploration into how this mismatch can be addressed. The paper is worth a read if just to explore the individual patient stories. There is a section in discussions that also explores the MISMATCH IN PERCEPTIONS OF THE ILLNESS STATE. Which may not go far enough as it compares manageable illness and treatable illness phases but does not fully address the consequences of living with what is not yet truly manageable.

    INCURABLE, INVISIBLE AND INCONCLUSIVE: WATCHFUL WAITING FOR CHRONIC LYMPHOCYTIC LEUKAEMIA AND IMPLICATIONS FOR DOCTOR–PATIENT COMMUNICATION.

    Excerpt from, LIVING WITH SYMPTOMS:

    “The people we interviewed included those who had had one or more treatment episodes for their CLL, producing periods of remission from symptoms, and others who were still watching and waiting for the ?rst time, including those without any symptoms that they would attribute to CLL (although they did not know what to look for). The most common symptoms experienced were tiredness (sometimes episodic) and lack of energy (Table 1). Although they had learned to pace themselves and plan their activities to manage fatigue, those who had experienced symptoms described how they had increasingly affected their quality of life, in that they could no longer do all that they used to.”

    The researchers suggest there is a mismatch in perceptions of the illness state. This may also help explain what bootneck has identified.

    “However, whilst people experiencing debilitating symptoms may begin to categorise themselves as ill during watchful waiting, doctors may not do so until they consider the symptom burden warrants treatment. This mismatch in perceptions of the illness state could help to explain why doctors seem not to fully appreciate the impact of the illness on patients.

    Furthermore, phenomenological studies have shown a gap in the understanding of illness between doctors and patients, the former being based on scienti?c knowledge, the latter gained from lived experience; hence problems may result if they are not discussing a shared reality Toombs (1993) recommends that doctors might help to tackle this mismatch by trying to gain insight into the patient’s lived experience. “

    herg.org.uk/publications/20...

  • I am so glad that I discovered this site because as the wife of a 73yr old CLL sufferer it helps me to understand a little better how he must be feeling, he is not a great talker so doesn't often discuss or have the words to explain how he feels but reading your questions and answers is a great help to me THANKYOU ALL

  • Hi Thank you all so much for your comments. Its really life affirming to read them all. I have enjoyed reading about all the different experiences..The comment about the difference between Dr's/Patients perceptions of their illness hits a cord. Also the one about the body can do so much but no more, although excise does help and I am more conscience of looking after myself than ever before. I have long since stopped worrying about taking anti inflammatories or sleeping tablets, which I find do help and I feel I am sensible enough not to overdo on either.This site makes you realise that you are not alone.

  • Most of my CLL life (10 years now) I experienced numbing fatigue. In the last two years I have found that, while I still need more sleep than I think I should, once up I can make it through the day without feeling like all I want to do is take a nap. I don't know what the reason for the improvement is. The one thing that is different is that I had my Vit. D and B levels checked and, finding that I was below the bottom of normal for both (D and B12 specifically), have worked with my doctor to get both into a healthier range. I don't recommend supplementing without getting a baseline count and working with your doctor. I have had my levels rechecked every 3 months for a year and a half and my last labs show that we have probably finally hit on the right doses for me. If you supplement your B12 in pill form, be sure it is a sub-lingual form. Here the sub-lingual pills are only available in a dose higher than I require, so I don't take it every day/

  • Two questions arising from all the interesting comments are: What is an anti-inflammatory diet? and What are sub-lingual pills?

    I concur with pkenn that taking extra Vit D3 every day has definitely helped with my energy levels although it took a month to begin to notice a difference.

  • Molly here is a link to an anti-inflammatory diet; (basically if it's appealing or tastes good and naughty, it's not anti-inflammatory!)

    nutrition.about.com/od/diet...

    I understand sub-lingual to mean pills that are taken under the tongue and allowed to diffuse into the bloodstream.

    Newdawn

  • on diagnosis when I spoke to my consultant regarding my tiredness he suggested it could be real or imaginary. It was not until 4 years later (having had fcr for 6 months followed by another 6 months recovery time) that I finally got back that feeling of wellness.

    It has however cured my borderline OCD- I just did not have the energy to keep it up haha.

    Penny

  • Finally joined the site and so glad I have. Ah, fatigue!!!! During the time I have had CLL, which is longer than I have been diagnosed (6 years) I have had an overload of stress in my life. My marriage went up the creek, I had to move, my daughter was very ill and I became her carer, unfortunately she died, I became my grandaughter's guardian, I have had to move again, my mother has dementia, I fell over and damaged both my knees, I had an overwhelming infection that put me in hospital and finally I got endometrial cancer, had to have a hysterectomy and had move again!!! Fatigue, I'm shattered! However, now have reached a point where I am seeing to me. Can't walk far because of the fatigue and knee damage but take the dog out, because we have beautiful walks with lots of seats!!!!! Was stuck in when in snowed because I dare not walk on it, so did two paintings, you can sit to do that! Do I ever feel well - no! Do I try and enjoy what I can do - you betcha! White cell count and lymphs stable for a long time but suddenly went up at last blood count, nothing major so I am hoping it was the result of the op. Nice to meet you all, I guess everyone just keeps on keeping on because we can't do anything else.

  • Hi thanks for your blog. As you say the only option we all have is to just keep going. Best wishes

  • I am a new-be in the world of CLL. I was diagnosed in June 2012. I am the minority: female and 54 years old. I am considered stage 0. I was diagnosed by accident; problems with leg pains. Blood tests revealed the CLL. I just went to the oncologist yesterday and I was told my levels decreased; "great news," he said. I have no idea about what numbers I should look at. I apparently went from 9.3 to 7.0???? It's hard doing nothing but simply waiting. He did tell me back in July 2012 to take 350 mg of green tea supplements and 300mg of meitake mushroom supplements, which I have been doing. I take the green tea supplement in one dose in the morning and I take two 150 mg of the meitake mushroom; one in the morning and one in the evening. I am not sure if this explains my decreased levels, but I plan to continue taking them.

    I have finally stopped crying myself to sleep and I am trying to remain positive and as stress free as possible. I can only hope for the best; to be that one who manages to keep this under control for many years to come.

  • Sorry to welcome you to the club. CLL is full of contridictions. I am female and was diagnosed when I was 50yrs. I am now 56 and completed chemo two yrs ago. "Watch and wait" is a very hard idea when it comes to cancer (although the correct one for CLL) it has been suggested it should be called "learn all you can". Green tea has shown some positive results its no cure but it may help. Try not to be a hero. If you need to talk, try these blogs as I can tell you from personal experience its the best place to start. If you feel you need anti depressants take them. They are not a get well pill but may offer some short term help while you look for a long term plan. CLL can stay in stage 0 for 10+yrs (I know someone 12yrs). Trying to control CLL is like trying to control the wind. You can do things to help (most of us CLLers find stress makes our condition worse but realistically in todays world you cannot advoid it. Its where mindfulness comes into play). For blood results get "Hairbear" to give you some websites where you can make sense of them. Try a blog just like the one you have done to me and I think you will get a big response. Good Luck.

  • Hi Lego,

    Like Jangreen, I'd like to welcome you too even though it's the club you didn't ever want to join.

    I'm 54, female and was diagnosed end of May, 2012 and am at Stage A so our situations are similar. It sounds like the oncologist was referring to your lymphocyte levels and at 7, they're pretty good! Like Jan says, W & W can last for a very long time and it's finding the coping mechanisms to help us not let the fear of dying destroy the joy of living. Easier said than done but get support where you can, keep yourself well and try to avoid bad stress if you can. We really don't need it.

    Others will provide any scientific/medical literature you need Lego, but here is a link explaining 'normal levels'. Hope it helps;

    understandingcancer.co.uk/2...

    Sounds like you're doing well and have good medical support. I've never tried or been advised to try those supplements but might be worth a try as my lymphocyte levels are much higher than that. I understand it's the ALC that really matters (absolute lymphocyte count).

    There's lots of expertise on here but more importantly there's support and understanding so please feel free to keep in touch.

    Newdawn x

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