Had a session with an aromatherapy lady, now using lavender oil to aid sleep and black pepper oil to combat fatigue. Too early to say if they are working so I'll let you know......
I'll find the coffee lounge and tell you about Joey!!!
Hi Grumpy! Please tell us more about the Asbo -Boy ( aka Joey) in "Pets and Other Animals" via the Coffee Lounge section. Bet he is a total 4 cornered angel in reality . X
Thanks for the tips - I'm doing most of this already.... as you do.
The comments I get are from medics, not friends. They don't know and I shall not tell people until absolutely necessary. This is (hopefully!) a long term disease and I can't put up with all the clucking for the 10 years.
When the time comes I know who to ask for help......
In the meantime I'm trying to come to terms with not being able to walk the fells with my dog Joey - also known as the ASBO Boy.
I have 20 years of experience of fatigue due to ME/CFS and I understand how frustrating it is not being able to perform at your 'norm'. There is lots of good advice on ME websites (such as Action for ME) on how to pace yourself and how to come to terms with a reduction in ability, which might be temporary in your case. I too am single, and know what it's like trying to cope with everything without help (which I can't afford to buy in).
My tips would include
1) avoid 'boom and bust' whereby you go for it one day and pay for it for the next few days; try instead to find a level of activity which doesn't drain you so that you always have a little bit in reserve
2) drop your standards and expectations
3) prioritise carefully so that you reserve some energy for fun things....see point 2...
4) don't fight the fatigue, but listen to your body and drop activities/plans if you need to rest
5) bounce boundaries, don't push....find a level of activity which you can sustain (your baseline) and build up very gradually from there by doing a wee bit more one day then resting the next, back to your baseline.
Congrats on the shrinking lesions and good luck x x
Well, it’s a bit of a catch 22 isn’t it? You value your privacy , so people are unaware of the magnitude of the health issue. That’s why the unhelpful comments are made. Why not turn it on it’s head and look at it as an educational issue? People DO not understand chemo fatigue, so educate them. You might be surprised at the offers of help you get, rather than people telling you to ‘pull it together’. To those who still don’t get it, and you, perhaps the proverbial p** off might do the trick! After all , how are they good friends if they aren’t loving and helping to you? X
Yes, onwards and upwards!!
PS Let me know if you need to scream at anyone (“psychological”) and I’ll scream too. Heehee xxxxx
Thanks for that - never really thought it through before.
I do employ the decorator for big jobs but want to do the little jobs myself....
Gardening - yes I'll look into that. At least I don't have a lawn to cut!
And if anyone else tells me it's 'psychological' I'll scream......
Onwards and upwards!
I can fully relate to your wish to keep your diagnosis private, I have only told people on a need to know basis so far about my Secondary diagnosis and with my ongoing fatigue since my Primary, I used to just say I’d had a serious illness and hadn’t had the same energy levels since.
On the outside looking in, I just wanted to suggest re you being on your own, could you perhaps ‘outsource’ tasks/jobs like gardening and decorating so it’s a payment and the person is there to do a job not question why you’ve asked them. I appreciate funds may not allow for this but just a thought. About a year after my Primary, I paid for a gardener to visit every 3 weeks as (at the time) I was on my own and the large garden became a burden.
Fatigue doesn’t seem to be taken seriously does it - I’ve had someone say to me ‘push your way through it’, if that really was the solution, I wouldn’t have felt so drained and for so long!
Thanks for your tips - yes, I'm doing all this. The problem for me is I'm used to walking 3-10 miles every day (I live in the lake district) and now it's a struggle to walk to the shops! And I find it difficult to keep up with ordinary activities - housework, gardening, decorating etc - and it's so frustrating. I live on my own so all this is down to me. The medics suggest getting friends to help, but that means going public about the cancer and I don't want to do that until it's absolutely necessary.
I keep looking for any research and all I can see is that the physiological pathways of fatigue are not identified so treatment is not yet devised.
I just wanted to say ‘hi’ and empathise with you on fatigue. However, I do need to acknowledge your good news of the lesions shrinking/disappearing - that’s fantastic. I am also on the same treatment as you and just nearing the end of my first cycle. I am no stranger to fatigue, have battled with it and against it for years and for too many years I relied on sugar and caffeine to keep me going when my body was really telling me to rest. If possible, REST when you do feel fatigued - if you feel guilty or worried you’ll oversleep, just set an alarm. Try and get a bit of fresh air when you can, just a short stroll is fine, doesn’t have to be a long walk. Avoid sugary drinks and caffeine if you know you are relying on them to keep going. I avoid sugary drinks but I do love coffee and will treat myself to a Nespresso most days however I try and drink decaf if I know I am reaching for a drink due to tiredness. I wish I could give the secret to no longer feeling fatigued but you do have to be kind to yourself as it’s not visible to others - in my experience anyway - and I’ve had people over the years tell me how well I look when inside I have felt horrendous.
I sincerely wish you well and it’s just occurred to me that also up until the 21st December, daylight hours were shorter - hopefully with each day and those extra minutes of light, some energy may return.
Best wishes xxxxxxxxx
i had secondary diagnosis of bone mets in upper spine in April 2019, taking letrozole, palbociclib and denosumab. Good news is that all lesions are shrinking/disappearing, bad news is the allconsuming fatigue. Life is very constricted now, and I'm finding it very difficult to handle.
Anyone got any tips?
Any advice will be gratefully received.