Hi all, I’m on watch and wait for Monoclonal gammopathy of unknown significance (MGUS), currently with 3 monthly check ins because my numbers are still at unconcerning levels at this point but have been increasing every time.
Lately I feel like I’ve been struggling with fatigue, but I also keep second-guessing myself because it’s so difficult to quantify! Doesn’t help that everyone I talk to about it just says we’re all tired, sucks to get older, and maybe I’m just doing too much. First of all, all I’m doing is working (full time) and dancing one night a week, sometimes with a small amount of extra dancing, an easy hike or some socialising. I’m only 42 and feel like that should be pretty achievable.
But I also feel like what I’ve been experiencing is more than ‘tired’. I’m totally exhausted by 5-6pm most nights, physically struggle to stay awake, and start to get nauseous and headachy. It was so bad at this week’s dance practice, I’ve decided that I will need to have a nap before dance practice going forward, which is quite significant for me as I’ve never been a napper at all!
I’ve also been getting digestive symptoms which I feel are related to the fatigue, as it only becomes an issue when I feel tired. Just getting really full really quickly (feel like I’ve eaten a big buffet lunch after having a sandwich) and unable to process alcohol (feel like I’ve had a whole bottle of wine after only 1 glass, including the hangover!).
And I constantly feel like I’m coming down with something. The weird feeling in the back of my nose and throat, sensitive head and tummy. Thankfully I’m not actually getting sick very often, but even the constant feeling like I’m coming down with something is exhausting, and makes it difficult to know whether I should try to push through or rest/isolate.
Pretty sure that everyone doesn’t generally feel like this - I know I never used to, but maybe it is more normal as we get older? But I’m wondering if there’s some element of overthinking coming into this, maybe like a confirmation bias? It’s just really hard to work out when my friends and family are so dismissive 
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Thank you, I knew there must be something relevant already but must have searched the wrong terms!
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Hello @zanzibar
Welcome to the forum, and thank you for taking time to reach out.
It must be very frustrating for you given the experience you’re having and my heart goes out to you.
I am a Chronic lymphocytic leukaemia (CLL) patient, and I can relate to some of the points you make. Fatigue is in particular one that I experience. I’m 57 and was diagnosed in April this year. So at times I question if my fatigue is an age related thing. I retired from full time work at 55, and now work 12 hrs a week in a local supermarket, so I don’t feel stretched by that, but I do attend the gym three times a week and I guess that will play a part in my fatigue levels.
You mention feeing like you want to fall asleep in the evening, and it is that point that I can relate to as I find if I sit in a comfy chair I will drop off for thirty minutes to an hour and thankfully this does not impact my sleep at night. Everyone is different, so please always follow your advice from your medical experts, but I do now try to go to bed at a regular time (I chose 10pm so I can watch the news before I close my eyes) and I set an alarm for 6am every morning (so I can get up and sort out my pets with food and of course make coffee for my better half).
You also mention alcohol, and I have stopped drinking it for the most part (I do allow myself a drink if on holiday / Christmas / birthdays etc) but like you, if I have more than a glass it really impacts me.
There are so many differing types of blood cancer and so many different sides effects of the conditions, but it appears fatigue is quite common.
My wife tells me off if I worry about having a nap in the afternoon, and simply says if you need to rest - then rest. Again everyone is different, so its always best to follow advice given by your medical experts and do what’s best for you.
I notice that @Nichola75 has included a couple of links in her reply and i hope you find these helpful.
Take good care of yourself and please do feel free to let us know how you get on
Mike
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I’m so sorry - I would have least welcomed you to the forum. I was searching for things I thought might help and posted without realising.
I know fatigue can be really hard and there are lots of forum members who will be able to share their experiences to.
It must be really hard to explain fatigue to others as most of us don’t understand what’s that is like.
Hopefully your find the value in the forum. There is always somebody to listen and who understands
Nichola 
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Thank you, it’s great to hear other perspectives.
I have to be up at 5am for work, so I have a pretty strict bedtime of 8:30-9pm, but it’s difficult to stick to that on dancing nights, hence the nap idea. I’ve never been a napper and haven’t quite made the leap to actually allowing myself to fall asleep yet, just starting to get to the point where I feel like I’m starting to need it. Hubby is a little in denial about my diagnosis and keeps wanting us to do things in the evenings, and I feel bad having to constantly tell him I’m too tired.
I’ve never been a big drinker, but definitely cut down since I started reacting badly to it, started experimenting with non-alcoholic beverages instead.
I have my next haematology appointment in early January, and will make sure I mention the ongoing fatigue and see if she has any suggestions.
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Not a problem, and thank you for the warm welcome!
It’s difficult to be feeling this fatigue, but with the comments from everyone, feeling like it must be all in my head.
I’m actually interstate at the moment and last night caught up with my bestie, who is the first person who actually just listened and offered her support. It was really nice!
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It must have been really lovely to feel listened to and understood.
Is there anything you can give your husband to read that might make him understand it a little better?
Definitely mention at your next appointment and keep us updated on how you are doing.
Nichola x
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Thank you!
My husband has come to a couple of appointments with me, but doesn’t want to read anything on it’s not his preferred way of learning. He likes to ask lots of questions as he goes. Unfortunately though, I think he has remembered what he wanted to - he’s convinced himself that everyone has m proteins and mine had spiked temporarily due to an infection, so they’re just waiting until it goes back down and it’s pretty much over now. He can’t come to all my appointments because he works away on site, and I don’t get much choice about when to book. He still somehow manages to be quite supportive though, just constantly surprised when I complain about being too tired.
I’m sure he’ll come around eventually, and at least now I know I have one friend I can genuinely talk to about it.
In the meantime, I’ll continue to mention all my observations and concerns at my appointments and report back 
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