The F word- FATIGUE.
This word gets thrown around fatigue this, fatigue that. But I don’t think a lot of people actually understand the concept other than another word for just being tired.
Damn do I wish that was the case, to just be tired, like I could nap and wake up and feel fresh and energetic!
This is not the case at all when you’re dealing with real life, full blown fatigue.
Fatigue is like this energy zapper that no matter how many hours sleep you get you’re still flat, its tiredness that’s right to the bone.
The whole body feels like you’ve gone 10 rounds with Mike Tyson. The aches are like nothing else. You can’t walk around without the aches making you limp and feel like you’re 90, at least.
I never really understood the full concept of fatigue until this last couple of weeks. I wish my chemo was more predictable but unfortunately not to be.
Every round is different and besides the constant background noise of nausea my body reacts differently each time. Last Monday I received round 4 of FOLFIRI. One of the worst side effects of Ironotican is known to be fatigue.
Until now the nausea over ruled and over rode everything, being so debilitating. Lucky for me I have (hopefully, you can never be 100% sure how the body will respond to the toxic poison that’s being pumped into it every 11days) found my solution to the nausea and with the help of a combination of drugs and Pure Nutrition hydration drinks, I seem to be coping a lot better with that aspect of the side effects.
Fatigue on the other hand, well that is in a league of its own.
During chemo the body is being depleted of everything, essentially chemo is killing everything in your body, good and bad. Couple that with a bit of nausea and being unable to eat much more than toast the body really is left depleted of most things.
Chemo day is ever 2nd Monday. We walk to and from the hospital as we don’t live far and parking is a nightmare. I usually feel OK on my infusion day. I then get ‘Bruce’ my pump for 48hrs. Last week I during my time with Bruce I didn’t actually feel to bad so along with Mondays walking I backed it up with taking Bruce for a 9.5km run on the Tuesday , a trip out on the bike to Sumner, 31.5km, on the Wednesday before walking to Nurse Maude to get Bruce taken out. Then I thought it would be a really good idea to ride again on Thursday (same ride).
By Friday I was starting to feel pretty achy and sore. I thought it was tight muscles from training more than I usually do on a chemo week so I backed off and did a 5km walk instead.
At this stage walking up and down the stairs was starting to become a problem and my legs just ached like Id run a marathon on no training.
I was making sure I was sleeping and drinking loads to keep hydrated. I was eating as much as I could manage, which admittedly isn’t much more than toast on my chemo weeks and sleeping 12 hours a night.
In my mind I should have been recovering, I took Friday easy, why was everything so sore? Why did it feel like I had been run over by a truck?
I just couldn’t make sense of it or understand, yes I know fatigue is a side effect but isn’t that just been tired? I couldn’t understand why I was so incredibly flat. Like couldn’t move, everything hurt, ached, pain like when you’ve done a 30hr training week but without being able to recover.
I spent Saturday and Sunday in bed or on the couch, I didn’t leave the house. I didn’t go outside, getting up to make a cup of tea was a massive effort (and for anyone that knows me knows I love my cups of tea), I felt lazy, massive guilt over the lack of movement and activities. I always feel like I need to be doing something to justify my existence and ever since I’ve been given a timeline for this existence I feel even more pressure to be doing things, accomplishing goals, or ticking stuff of this ‘bucket list’. I constantly feel like I need to be moving, like if I stop everything will fall apart. If I stop it I’m wasting time, and time isn’t something I have on my side.
Constantly having to fight day in day out just to feel some sense of ‘normal’ gets so overwhelming I don’t know what to do with it. Fighting all the time just to be half of what I used to be is tiring in itself without adding the fatigue and all the guilt it brings on top of that.
Nurse Maude are and were amazing, I got in touch with the palliative care team on Monday and Tuesday I had the pleasure of meeting Moira the lovely physio. She explained that fatigue isn’t something that can be slept away. That this isn’t me being lazy and that in no way should I feel guilty about it one bit.
She explained about the chemo depleting the body and then on top of that I expected my body to go over 85kms because my bodies always been able to do it. She asked me how I expected my body to do this when it has no reserves that not only is chemo taking everything from me, the fact that I’m not able to get in enough nutrients in, how am i expected to ‘perform’?
I never looked at it like that before. To me my body has always just had to do what its had to do. Unfortunately cancer and chemo don’t quiet work like that. The body needs love, nurturing and kindness. Yes training for me is my happy place but having depleted everything I’ve left my body with nothing. The aching is the body crying out for rest and looking after.
She explained that during this time I need to slow down. That I need to conserve energy for the important things that I want to have energy for. That if i can do something sitting instead of standing sit. That walking up and down the stairs aimlessly because I forget things is a thing of the past and unless i need to go to the toilet I need to make sure I take everything down with me in the mornings.
I need to slow down. Instead of doing three things at once I need to only be doing one thing at a time. The brain expends the most energy and I’m trying to get it to perform two or three tasks in a row and that I need to just be concentrating on one thing at a time.
That instead of smashing out long rides or running for kms on end that I need to nurture my body and gently ride to a cafe, that a 10km ride is enough, that running 2km while taking in my surroundings is better than 10km ruining the body.
All of this is so foreign to me. I’m used to performing, to be able to have my body go day in and day out doing what its told and recovering like it should.
This is such a far fetched way of looking at life for me and its going to take a bit of getting used too.
Being kind and gentle to my body isn’t really in my make up. I’ve abused it for years. Getting my head around this is going to take time and a lot of work but I’m trying. I’m resting were I can, I’m sitting instead of standing, I’m trying to stop the endless aimless trips up the stairs, I’m conserving my energy for the stuff I really want to do, for the important things, for the important people.
So even though my mind is screaming at me ‘YOU’RE SO LAZY GET UP’, I’m saving the energy and trying to change my thought process from that to a more kind and gentle tone.
It may take some time but I’m determined to learn to nurture my body, to love it and show it some kindness.
I think we all need to take a second and appreciate what our bodies do for us and learn to give them a bit of kindness and nurturing. To stop being so hard on ourselves and to remember we all do the best we can. Love you cos that’s all you have at the end of the day.
Until next time,
Be kind to yourself and keep smiling,