I finished chemotherapy 18 months ago but I still suffer everyday with chronic side effects. They've become a part of my life and I've worked at not curing them myself but at least being able to manage them especially my fatigue.
When you're desperately ill you do anything to find something that helps and for me I have found that exercising daily and eating healthily does help and probably has helped a lot more than I realised as when I finished treatment it was something that I bounced straight into to try and get my appetite back and feel a bit more normal. But there are some days when my fatigue defeats me. I've become really good at listening to my body and really starting to respect it and respect what it's been through. My body has been through an aggressive form of cancer and even more aggressive chemotherapy. It's been through operations and endless scans and needles. The least I can do is treat it the best way I can and listen to it when it needs a break. The latter part I do struggle with, I'm really pushing to be my version of normal and I suffer more if I sleep in during the week. But at least once a week I have to actually shout at myself and realise I am still in recovery. I always set an alarm during the week and I'm usually in the gym by 9AM. I get huge mental benefits by going the gym in the morning and get that energy rush and am able to get on with the day but by mid afternoon I crash and it's nap time. BY having CFS means I'm tired all the time, yes there are some days when I don't need to nap but trust me I;m always tired. The tiredness is consistent there are days when it physically hurts more but I'm always a level of tiredness which is indescribable. Today was one of those worse days, I done my usual went the gym, picked up milk for mum but by midday I was struggling to sit up. When I have to nap it's not because I'm tired and I can, it's because it hurts and I literally can't stay awake and I hate it. I fucking hate it. I hate it because I will have a plan set out for the day to make me feel productive like I'm actually useful and things that will make me feel better and more organised. But if I nap I almost never get everything done. When I nap I never set an alarm I let my body rest for how long it needs to that might be an hour and some days it might stretch to three days. The worst is when I can't actually sleep but my body just needs to lie down and I need to be in complete silence. Napping is something I can't plan around and when I wake up just as tired you might be able to understand why it gets so exhausting. Being chronically unwell is something that can't be cured with chemo or anything, It's something that's supposed to get better with time. I was told between a year and a half and it will get better. The last time I saw my consultant I mentioned it to him and he was surprised, he thought I should be over it by now. I really hate consultants, they're too clever in their own field and sometimes you just need a bit of empathy, The reasons I were told that I should be over it by now were actually a little bit hilarious. He said I shouldn't be fatigued because of my age and fitness. I agree no 22 year old should be chronically exhausted but no 20 year old should get cancer but that happened. I don't think my level of fitness has much to do with it either because I joined the gym a week after finishing chemo, I've got a lot more stronger and probably in the best shape I've ever been but that tiredness hasn't changed. At least my nurse was there to mention that everyone is different and it's OK. But it was a gentle reminder that not everyone think's chronic illnesses even exist, I've took a lot of shit off people who I could never imagine being so against me with this. It's heartbreaking when people who were on your side during the chemo struggle to accept that you're still suffering. Despite being able to squat 25kg, my mind is so much stronger than my body I push myself to the limit and refuse to be defined by my tiredness or anything that has physically happened to me. That doesn't mean I'm still suffering, I will go to Barcelona for a week and I will go interrailing round Europe for three weeks. Why? Because I'm alive, because I want to and I'm lucky enough that I'm able to. But you best believe that I'll be struggling throughout it all. All I ask for is just an understanding, an understanding that I'm very tired I listen to my body but if it's something I want to do I will push myself. Ask me how I'm feeling suggest maybe having a sit down and get a coffee before we carry on. Don't force me and don't tell me how I'm feeling. As horrible as it can be I understand It's a small price to pay and if someone told me I have a choice either die of cancer when you're 20 or survive it but be painfully tired everyday, I'mm put up with the tiredness and I do need to remind myself that. There are so many people fighting chronic and invisible illnesses and we may never get to know what a person is going through so be kind, show empathy and talk openly about how you're feeling it's hard but you're not alone. If you too suffer with CFS then please feel free to contact me and talk to me about it but if you're struggling with explaining it to others then I found the Spoon Theory was perfect to describe how I was feeling and also helped me understand it more myself.
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