Terminally tired

I have never known tiredness like this.

It’s a confusing trip when the very thing that is responsible for giving you a much extended life is sucking the life out of you. I speak, of course, of chemotherapy. I spoke to my oncologist last week about how my tiredness really seems to be increasing to a frightening level, even though my general cancer health is in a pretty good, stable place, with excellent liver functions at last blood test (basically you wouldn’t know from the blood tests that I had any liver cancer). He pointed out that I was just about to have chemo number THIRTY, and that is a lot of chemo, it accumulates, and he seemed to indicate that he didn’t think it was going to get better either. He said what a lot of people say I guess…that I have been a bit of a machine the last couple of years, and it was only a matter of time before the tide turned, and he was amazed I was able to function at the level that I did for so long.

I’ve toned things way down, because I have had to. But take yesterday for example. I decided to get into celebration mode for the week ahead, as I have been a bit down and looking for ways to pull myself out of it. So, I went to the shopping centre and took myself out for coffee and breakfast. I got a couple of things, came home, slept for 20 minutes, had friends over for coffee, slept for two hours until school run time, came home, got the kids a snack, slept for an hour, and then went into town to go and see a play with a friend. Gaz and the kids drove me in and they went for dinner, I joined them after the play, for dessert and coffee. None of that sounds particularly taxing, eh? All I am doing is sitting, talking to people, enjoying peoples company, which is important to me. But no, like I had run the Boston marathon, I slept in the car most of the way home. I don’t actually remember getting from the car to the bed, I remember Gaz waking me up in the car and saying we were home, and I stumbled inside, I think I pulled off my cardigan, but not any jewellery, and sort of fell face down on the bed like I had fallen out of a plane into a field. I slept until about 8.30am this morning and yet, I feel like I haven’t been to sleep – not rested AT ALL.

I know I have told you all of the dream that I have now. I am going to have one more chemo on April 4th I think it is, then we are hoping for a good scan that indicates that I can have the lung radiation and go on a chemo break for as long as possible – until we have signs of active growing cancer, basically.

I don’t know what I thought was going to happen at this time. Like I was going to just vault out of there and get on with life, do ALL THE THINGS. The way things are going, clearly I am not. I feel like I have cleared out the “dead weight” in my life already…..I have pared it right back to basics, already. My family, my friends, spending time with people I love. Trying desperately to take some of the pressure off Gaz, just be a partner and mum and friend again. That’s about all I got, but they are the most important things.

Don’t even doubt that I am grateful to be alive. I am grateful every day for still being here, and long may it continue. It’s just HARD is all, when you know your life is going to be short, and you desperately want to live and party like it’s 1999, and you realise you can’t, and never will be able to again. it’s kicking my arse.

I have so much compassion for those of you that have chronic health conditions that have meant that you have had to live and parent around this sort of tiredness for years and years. How have you done it? Anyone got any tips for me? Can anyone tell me that when I go on chemo break this might get a bit better, that I might be able to do a bit more? I am up for any advice, or kicks up the arse, whatever you feel I need.

Tomorrow we are heading into Huey’s diner to join a bunch of family and friends, to celebrate and give thanks for the fact that I will turn 45 on Good Friday. I’m so excited, and only hope I don’t have to crawl into one of the booths for a sleep!

10 Comments on “Terminally tired

  1. Oh Julia… OK, suggestions. I’ve had rheumatoid arthritis for 24 years. Diagnosed when my youngest was just a bit over 1. Thankfully, it was relatively mild for a good long time, but I still had to deal with pain, fatigue (oh boy, the bloody fatigue) and generally being unwell, so I get what you’re saying about WANTING to party, and not being able to. The last few years have been pretty dire, because the damned thing went and turned severe on me without warning, so it’s been a whole other level of drugs, side effects, illness etc.
    NOTHING eases that fatigue – all the sleep in the world doesn’t fix it. It’s another class of tired altogether from just being tired. The odd time I’ve been well enough to really push myself and find myself ‘normally’ tired because I’ve been busy almost feels like a celebration – which is a bit twisted, but that’s how I roll these days.
    You’re doing EXACTLY the right thing. Pacing yourself, doing things in small bites, resting/sleeping in between, and – most importantly – doing the things that will feed you emotionally, because THAT’S the only thing that balances the awful fatigue. It really is. Knowing you have things to look forward to, and doing the things you enjoy are the best ways to manage always feeling crushingly tired, because you’ll know that when you ARE up and about, you’re putting the energy you have into doing something that’s satisfying and fulfills your own brief of living well.
    I hope that helps – there’s more on my blog if this makes sense and you want some more.
    Hugs xx

  2. Karen is right. There really isn’t a cure for the chronic fatigue, I wish there was. I have Crohn’s disease, when it’s active I am constantly exhausted. I do find eating right helps as does taking regular rests, even just 10 minutes to sit down and rest can help.
    I hope the fatigue eases soon xxx

  3. I have been doing this for 5 years now and have forgotten what it is like to have “normal” energy. I know what i used to be able to do but i can’t do anything like that now. I am on week 7 of a break from chemo i did feel ok when we were in QLD but arrived home shattered because i functioned on pain killers and optimism for the week away. I couldn’t walk around Movie World and had to take my granny scooter. The kids loved it because they had somewhere to ditch their stuff while they went on all the roller coasters over and over. I did lots of sitting and waiting but got a lot of joy watching them. I have had to change my life. I have dropped so much because i have had to prioritise. My own health and my family come first. I am a social animal but i can’t do the socialising i used to do. I have changed my expectations of myself and given myself permission to not meet others expectations. I find that what i think they expect of me is wildly inaccurate anyway. People understand that we are chronically tired and are usually forgiving if we let them down, although i hate doing that. I try not to put my hand up for anything much nowadays. I have friends who have never met the ‘healthy’ me. Talitha can’t remember Mummy not being sick. That grieves me but for her this is normal. I only do what i absolutely have to do, i am getting the kids to do more around the house, i am learning to accept help without as much guilt, i am better at knowing what is worth the effort. People talk about appreciating every day. I do but i also have to live in the shite that cancer has brought into my life. As much as i appreciate waking up each day, it hurts, and it’s hard to get out of bed, and getting breakfast ready can take everything i have. When Talitha wakes up and gets up i have to get up too even if i can barely stand. I don’t think people realise the extent that we push ourselves because it doesn’t require the same effort for them. We push ourselves because if we don’t we give up, if we give up we die. But i love my kids and i love my friends and i value the time i spend with them. I love Jesus and i love the things He is doing in my life. In the middle of the crap great things happen, exciting things, things that make me forget about cancer and just love life. I am trying to eat a bit better, exercise when i am able. I take a pile of vitamins every day and they do help – high dose vit c, b, d and calcium. I rarely get sick apart from chemo induced illness. I have reduced my sugar intake but i eat mostly whatever i want, just try to make healthier choices in general. It has all helped me to find a middle ground where i can still function but i get enough rest. Occasionally you will get a day or days where you just can’t. I know you have had those days on chemo but you get them off chemo too, usually when you have pushed yourself. Go wIth the flow. It takes years to recover from having chemo so a break doesn’t mean you immediately go back to your pre-chemo energy, in fact i usually go overboard then crash for a few days before i get into the new rhythm. I don’t get as much help as i got at first. It reduces as you live longer. So if people offer help and you don’t need it immediately, ask if you can call on them down the track. Then you are pacing your help as well as yourself. And try not to think negatively when helpers drop back. Plan if you can and for things you are going to need on an ongoing basis, try to get funding or a roster so noone burns out. Plan to live ! Sorry for the long post. Feel free to delete it if it is too long xxx

  4. I have had MS for 26 years, diagnosed for 22. You cope because there is no other choice except a half lived life. Eat well, drink enough water, rest when you need it and give zero fucks what anyone else thinks.

  5. Julia I think it is just your bodies way of dealing with all the things it has gone through and pain takes a lot of energy,listen to your body sweet girl,I learnt the hard way I have chronic global esteoarthritis and a connective tissue disorder I have had a not very successful knee replacement and recently a cervical spinal fusion and if I push myself too hard I pay big time,more pain ,bad moods ,getting sick and just general exhaustion.I am not comparing myself with you but I’m sure you’re doing the right thing by sleeping when you need to,take care and I hope your energy levels increase off chemo Xx

  6. Hello gorgeous person! I’ve had chronic pain for a little while now and fatigue has certainly hit me hard for long periods of time. When I’ve decided to spend precious time resting and then I wake not feeling rested I try to remember that even if I don’t feel any different the rest has made a difference to my body and I know I would feel even worse if I hadn’t rested. Something else that helped me was changing the way I reacted emotionally to tiredness (omg I just want to whinge and cry) – similarly to the way I manage pain – I often have an internal narrative that tells me how hard this feels and how I’m pushing through the pain/exhaustion and it sucks, but if I try to think that I’m doing what I want/need to do WITH the pain/exhaustion I can kind of step back from it a bit and it doesn’t feel as uncomfortable – I can bear it. I hope you get to have a chemo break and that it brings you some energy :)

  7. Pingback: A week in review … | Life Through the Haze

  8. Chronic pain,whatever the cause is such a lifetime problem for so many. Myself,my son & daughter is exhausting, so bloody tired from the pain and the meds to try and control the pain. You wonder why. It is what it is.

  9. Oh the tiredness, I totally get it.. I’m having a little mini break from chemo after 29 rounds in prep for sirt.. I feel like after 5 weeks of no chemo I should be feeling a lot more energetic and wonderful..
    Like you, I have four kids and hubby to run around after which I love because it means you have to keep life as normal as possible..
    I’d love to hear how you felt after sirt?? My oncologist told me that it makes you feel very exhausted..
    I really love following your blog, it’s fantastic.. Keep up the awesome fight..
    #stongbraveandpositive x

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