Bloodwise Ambassador Katie Ruane
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Fatigue

Bloodwise Ambassador Katie Ruane
Posted by
18 May 2015

I try not to moan. I try not to complain. I know how lucky I am in so many ways. There are people I know and love who are not long for this land. And I can't imagine what that is like. To have been through it all. Chemotherapy. Radiotherapy. Surgery. All those hours of sitting in hospital waiting rooms and to still die. It's hideous. It really is. And I'm still here. I'm still alive. And for no apparent reason at the moment to change this, I am destined to be here for quite a while.

And yet. My life is not mine. I am plagued and hindered by fatigue. Those that have it know the fine line we walk. To make sure that there is enough sleep. Not too much walking. Not too many meetings. Eat enough food. Keep going using caffeine and sugar. I hate how dependent I am on caffeine. But if I don't. I don't know if I would make it through the day.

I smile and say I'm well when people ask. Because in general I am. And then I have days like today. A busy week last week. Not enough sleep last night. And I'm completely and utterly ruined. And when I say not enough sleep last night. I probably had 7 and a half hours. And I can't function. I had a meeting this morning and now. All I can think about doing is crying. I have emails to send. Admin to do. I also have to exercise because of my fitness plan. I have no idea how I'm going to do this.

And this. This I am sick of. And I don't know what to do. I keep on forgetting to take my drugs. Maybe it's because I don't actually want to be taking them. I don't. But I do. Because of the unknown. If I stop and the leukaemic rate rises and triggers the bone marrow back into producing leukaemic cells and I don't response to the pill chemotherapy I take daily. It's another story entirely. It's a stem cell transplant. It's living in hospital. It's having my immune system and bone marrow destroyed. It's possibly not surviving. Or having even worse side effects to deal with.

So really. I should just stop whinging about being tired. Because it could be so much worse.

With love and hope,
XXX

Comments

22.05.2015

Hi Katie,

Really sorry to hear that the fatigue is proving so debilitating at the moment. It always seems to be the way that when you need the sleep the most you can't get it! Are you still excercising?!

Being so busy won't help your cause and as you say a busy week sounds like it's catching up with you a bit but it's a tricky line, I know, as you want to live life to the full but at the same time you know that you can't just do what you want when you want and that is incredibly frustrating.

I don't think I've quite got the balance right either and I often overdo things and, yes, this means that I, too, forget my drugs on occasion and the though has crossed my mind more than once about why I bother and I go through that whole cycle in my head before realising that ultimately I have to keep on taking the pills.

The key is finding a work/life balance I think and learning to put yourself a little bit more. You, like me, are always thinking of others first and sometimes that is of detriment to yourself. Cut back a bit if you feel you're getting a bit stressed and don't be too hard on yourself if you don't accomplish everything you want to do in a day -  you're not superwoman!

Bloodwise Ambassador Katie Ruane
01.06.2015

Thank you as always for you comment Andy - taking the time to do it.  I know, it's still anoying that after 8.5 years this is still an issue.

Anonymous
05.07.2015

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Anonymous
05.07.2015

Hi. I have cml. I'm 28 and own a busy cafe. I feel like I just whinge too. Or that's it my imagination that I'm shattered and can't function or string my thoughts together after a busy week and a shorter than average sleep. I snap at my boyfriend or cry unreasonably. They don't understand!!! They thing I'm just being hard work because outwardly I'm fine. I just take four tablets a day! But I'm the same taking those tablets. And not eating for three in every twelve hours is really really hard. Everyday. I wish I didn't have to take them but I'm also grateful they exist. Tough one. We're the lucky unlucky ones!! X

Anonymous
05.07.2015

Hi Katie, I struggled with the exac same issues while I was on gleevec for 3 years (that's how it's spelled for whatever reason in the US). I had the exact same feelings. You're not alone. It got to the point that I decided to talk to my Dr. and we switched me to Sprycel. It's made a world of difference. I've been on Sprycel for 2 years. I still have severe fatigue issues but the depression is gone. I later realized gleevec was causing the depression and anxiety I had. Sprycel had made a world of difference for me but I still struggle with the fatigue. I'm a single mom to two VERY active kids and I work full time. I know what you feel. You may be able to talk to your Dr about reducing the dosage or switching to something else since your quality of life has gone down, that's what my Dr did. I start my new dosage Wenesday. We'll see what happens.

I pray that you are able to find solution. Just remember that you aren't alone.

Anonymous
05.07.2015

Katie, so sorry to hear of your struggle. Been there done that. I was diagnosed with CLL five years ago. I started chemo immediately (FCR) and the fatigue (amongst others) hit very quickly, i was able to continue work for a while. A week off for chemo two weeks on. By the third cycle I could not continue work, needed help around the house walking anywhere left me completely exhausted. After the chemo was over it was a slow recovery. Well after several relapses, in April 2013 I had BEAM therapy with an autologous stem cell transplant. My doctor had encouraged me to exercise as Mach as I could beforehand which I did. Building up slowly, pushing a little further each time. After the SCT walking to the letterbox was enough, I worked at it, a little further each day, when tired I rested, did a little more each day. Within two weeks I was going about a mile including a hill. I went shopping but used a scooter for a couple of weeks until I had built up my distance. In two months I had started working from home (I am an engineer desk bound), then half days at home & work after a month of that full time at work. Utterly, exhausted by the end of the week, so rested up at the weekend. Still pushed to walk a little further each day. By November my doctor said I could get back on the bike. By Easter I did 44km and still do regular rides between 20-35km. I still get tired on Occassion and rest when needed. I am now pretty much fully recovered and enjoying being fitter than I was five years ago. I put this down to my persistence in exercising, a little more each day and rest when tired. This usually helped in sleeping as well.
This might sound counter intuitive. It did work for me. I didn't do it for my early chemo and the recovery always took much longer.
All the best for your recovery.
Don T

Anonymous
05.07.2015

I am sorry to hear of your challenges but am here to bring you a fighting chance to beat the fatigue & beat the cancer.

I am a Nutritional Microscopist, specializing in Live & Dry Blood analysis. I also am a Lymphatic Drainage Therapist.

Please check out the following regarding Kris Carr & her journey with stage 4 cancer. Also check out Crazy Sexy Cancer trailer on Youtube.

www.crazysexycancer.com

Anonymous
05.07.2015

Katie. I am 13 years post transplant. CML the same as you. I threw myself back into work after six months and have ups and downs as afar as fatigue goes it is not easy and many people do not understand how hard it is sometimes. I must say though that caffeine was a big problem for me and it was not until I swapped coffee for cold water that I realised how much it was affecting my life, especially sleep. Have you tried cutting out the coffee? Keep your chin up!! James

Bloodwise Ambassador Katie Ruane
06.07.2015

Dear Christi,

Thank youf for this - I am a Naturopathic Physician and regularly use essentil oils amongst an array of other therapies and really high quality supplements to help keep my energy as high as it can bt.

Bloodwise Ambassador Katie Ruane
06.07.2015

Dear Gemma,
Thank you for taking the time to read and comment on my blog. I think I have cried more in the last 8 and a half years than the previous 22. Ha ha ha ha..... Fasting is a nightmare. I had to stop taking Nilotinib and change to Bosutinib because of the fatigue AND fasting combination. It was hideous. We really are, that sums it up very well! XXX

Bloodwise Ambassador Katie Ruane
06.07.2015

Hi Denise,I was highly intollerant to Gleevec and was finally taken off it after a few months of being on it.  For me it was a hideous hideous drug.  I have also been on Sprycel and that caused depression alongside fatigue so have then tried Nilotinib which was also not good and am not on the last option bosutinib which seems to be the best of the lot.  I am a sensative responder so start at the lowest clinically proven effective dose, unforunately with the bosutinib that wasn't enough so have recently upped the dose.  I now take it at night which also seems to help.I hope your new dose is ok, and thank you for taking the time to read and comment.  And yes, good to remember I'm not alone.

Bloodwise Ambassador Katie Ruane
06.07.2015

Dear Don,Sounds like you have been through the mill a bit since your diagnosis!  Thank you for the exercise tip - I do 2 or 3 times a week and have also done a half anf full marathon, currently doing very slow training for next year's London Marathon so I know about the benefits of exercising even when I really don't want to.  After 8 and a half years of fatigue I just sometimes get a bit fed up of it all.  It's great to hear that ecercising has helped you with your recovery and hope you continue to go from strength to stregnth.Katie

Bloodwise Ambassador Katie Ruane
06.07.2015

Dear Jennifer,Thank you for that I'm  a Naturopathic Physician and regularly see a therapist too.Katie

Bloodwise Ambassador Katie Ruane
06.07.2015

Dear James,Thank you for your comment.  Yes I go through cycles of no or nealy no caffeine and then have it a bit more.  Generally speaking I don't have it later than early afternoon and I know all about the impact of caffeine on health and sleep etc. I also drink around 2 litres of water a day amongst a variety of other things to help my energy levels.  I shall do!  And have the odd meltdown and blog about it....Katie

Anonymous
08.07.2015

I have so much to say on this I have been struggling all day to say (type) lol...

First and foremost I am ever sorry of you diagnosis of CML, the fatigue isn't helped by having a long term (chronic) leukemia. I spent a lot of time reading through the posts on Facebooks 'leukemia lymphoma research' pages post about you and think most of the comments on there, for you in support, were awesome.
So all I have is a little more to offer that has helped me and others I know with a chronic leukemia.

Joy / Fun and banter has helped a lot, so few know we are still who we are, and being defined by who we are is really important. We do now have our new restrictions, and I think this can make it harder to express ourself as we are "Unique .. in my case "Odd"..

Have you ever heard of ''The Spoon Theory' it's not about our fight explicitly - but it is more relavent than ever.. I have found it to be a great way to express our daily management of energy (living)... we start of with a quota of spoons to spend, and how we manage these vary, but there is one sure thing..

When do you spend your first spoon?

When you open your eyes in the morning: then you have - sweats, racing heart, breathlessness sometimes severe aching for no reason just to get up etc... " You are not on your own and we are here for you. "

Hope is really important - it's like a promise yet to be fulfilled, please let your thought run wild with all your hopes and dreams, they make up for so much heart ache and pains from the yesterday's - nothing is impossible!

As for the fatigue, I think many on here and Facebook have covered it especially on vitimins and b12 jabs not to mention using your phone to remind you when to take your meds (lesson learned for me.)

I have a Myeloproliferative neoplasm called Polycythaemia, it's pretty rare but also chronic.

I hope what I have said is helpful and encouraging, God Bless You (I really meen that)
Geoff ×

Bloodwise Ambassador Katie Ruane
09.07.2015

Dear Goeff,

Thank you for your comment - yes spoons.  Some days I seem to have an endless supply of teaspoons of energy getting me through the day, and then others.  I just seem to get one table spoon that gets me out of bed and that's about it.

I don't look at the facebook page, I didn't realise that I'm mentioned.  I shall go and look and see what people have been saying.  The support I get through twitter and comments on my blog, this one and my personal one, which is very similar just full of swear words, is quite incredible.

Hope, it's so very important.  Much to my mother's disbelief I had it tattoed on my wedding ring finger because of the link with the blook supply to the heart.  I now have it with me always.  It's so important.  Without hope there is nothing.

Wow, your diagnosis it certainly a mouthful!  I hope that you manage to deal with it and everything that comes along with it.

Thank you, X