Fatigue

Good morning Gemmary I left your post until this morning to see if someone would pick up on your post.

For me Fatigue was a significant part of the journey - in all areas. During diagnosis, during treatments and unfortunately for weeks, months and for me years after treatment was completed.

For me I quickly found out that sleep did not help as my body and mind just become more lethargic as time went on.

So once I was a few months past treatment I slowly become proactive, setting regular alarms to do little tasks like brushing my teeth, having a shower, getting dressed...... that’s how bad I was but my wife made me do these tasks .....showing tough love as I like to call it. So fir me setting the alarms made me proactive.

I them moved on to small walks 100m up and down the road (remember I was on walking sticks) getting longer as time went on after 4 months I was off my walking sticks. So I got my wife to drop me (I was still not allowed to drive) at my local Maggie’s Centre where I did their 7 week “Where Now?” course and this included strategies for dealing with fatigue, relaxation and mindfulness sessions and short keep fit sessions...... this then pushed me on to go to the weekly keep fit group - I started low level but over the weeks our cancer trained instructor increased what we were doing.

My walks got longer, I got back into reading, cooking food and was not making excuses not to go out and meet people.

Eventually the penny dropped........ my focus was no longer on Fatigue.

((hugs))

Thanks Thehighlander, I am trying to walk, do, be 'normal' etc, on a low key scale, but it just doesn't work. It can lessen, but it is a permanent feature, and it is now seriously annoying. Cannot think of anything else I can do to shift it. No support groups etc locally, hence trying here. Yes I have been told off earlier for doing too much too soon, but I am not doing excessive things, slowly trying to get back on track, but nothing is working. Its all starting to bug me.

I do feel for you Gemmary - remember this took me well over two years to get to a position I could say that I had moved on sufficiently that my focus was not on the fatigue - so it is a long game.

There is a clear connection between fatigue and our mental capacity to move on. I (we) am/are total positive thinker.... these annoying 'glass half full people'....... even during the hard times.

At the very start of our journey we had given each other permission to kick each other up the backside when one of us were having a 'pity me party'....... I have to say that it was me that was getting the 'hard times'

Have you any family members or good friends that you could sit and talk this through with, this instantly lightens the load........ pull someone you trust into your recovery cycle and make yourself accountable to them, someone who can encourage you along that road.

If you don't mind me asking - what area do you live in? Up in the Highlands we have folks who do a 3-4 hurt round trip just to do the Maggie's courses. The challenges of staying in a rural part of Scotland.

((hugs))

Fatigue isn’t the same as tiredness. I’m afraid even after a year post treatment I still have days where I’m just wiped out.

My husband encourages me to do more and I do try but I’ve had to get used to a new normal which is a much reduced energy level.

I’m sure you will have already read the advice below but just want to reassure you that is is normal

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/tiredness

Hi both,Galanthophile ,Thehighlander

I've read what I can on fatigue, and can try and work round it, but when it really hits it is incredibly difficult to do nothing but knowing you cannot do anything. If that makes sense. If this is going to last a long time I need some coping strategies.

It’s a hard one and we can all resign ourselves that this is it or we chip away at it slowly.

Just found this www.cancer.net/.../8-ways-cope-with-cancer-related-fatigue

Thehighlander not sure what you mean? On bad days I am unable to do anything but berate myself for not doing anything? And am fidgety, unsettled. On ok days I can use the mindset that it doesn't matter what I do as long as I do something. Good days can amble through some jobs etc. The bad days are increasing.

Good morning Gemmary  not a great sleep last night - fighting a head cold that is going about and we have to drive over 2 hours this morning to check in with my old mum - just don’t want to do it...... but must.

“ it is incredibly difficult to do nothing but knowing you cannot do anything. If that makes sense”

As has been said - could this be your new normal? and for some it can be...... Someone said this to me in the early days and I was having nothing to do with it.

I would often think “I am not getting up as I can’t do anything today” but I know that actually was just not the truth....... I could do basic things so disproved the “I can’t do anything?” thought - it was all about slowly increasing my ability and mental capacity to do the next thing.

The starting point was looking to move on, often the task was never achieved as I ran out of steam just getting up, washed and getting dressed was a major achievement as I was not fit to do this myself post treatment so my wife helped me...... this step was a good foundation to understand that I was not destined to a life of not being able to do nothing - progress was being made and I had to acknowledge that this true and real.

But I did not get frustrated with my self when I had a day that my goal was not achieved but I recognised that I still had the will to move forward but not today but tomorrow was a new day.

My unit phycologist was clear that the control of the mental battle was the top goal - we can convince ourselves very well that we can not move forward. Apart from the Community who have you sat face to face with and had a go at unpacking this?

((hugs)) 

Morning Thehighlander, hope your mother and the trip went well.

I'm feeling slightly less tired, so can process things better today. I've come to the conclusion that, as we are a smallholding, my normal is so so different to others. You have to get up, even if late, to feed and look after the ponies (mostly) . You have to get the wood in, or go cold. I duck out of actually obtaining the timber from the wood, and some mucking out. Household chores are split. But what I take to be normal existence is probably not what others think. I run my own business, which has had a hammering over the last 3 years, last year in particular (I had a hip and 2 knees replaced then the cancer op in 2 years) so I am attempting to just keep it afloat. And no I cannot get ESA as I tried for the last knee. Luckily OH works, but like you is looking after his parents at long distance so I have to animal sit when he's away.

So, using the spoon analogy, I probably have run out just existing , though I have noticed it is easier to muck out now than a couple of months ago, mostly anyhow. If I know the next day is busy/early/stressful then I try and reserve some spoons for the next day, if there is any left! I realize that it will be a year or so before I get fit enough to do some things, but it would be good to have the energy, less tired, to do some me things now rather than exist.

The conundrum is I was coping better whilst still on chemo! Although the horizon was only 'lets get through next week' as chemo was weekly. So difficult to now extend that horizon, but I have dared to enter the 5k Race for Life in June !!!!! 

So I am not sure what my conclusions are at the moment!! I have just given myself some food for more thought, when the tired brain can process the next steps. Might attempt to explain this to my counselor next week, yes that will be a stressful day as usual. Thank you for your 'triggers' , and the nearest Maggie's is in Cheltenham, Oxford or Cardiff!! So not really a starter as I would be too tired to drive that far. Rather I could get there, but maybe not back safely.

Good morning Gemmary , sorry for not getting back to you sooner but it was a busy few days and got home late last night.

Good to hear that you are feeling slightly less tired, this little glimmers of hope can help you face the days ahead as you know that there are times that you can do this..

A smallholding can indeed be hard work and never ending. My side of the family are from a farming background so early mornings, long days and short sleeps were the norm and regardless the session there was always something to be done. I remember these days well and I loved the various times of the year including all the chores like feeding the beast before going to school.

Having your own business and cancer just does not mix...... I was in teaching for over 20 years but the stress did not go with my type of cancer as stress made my condition worse so jumped ship in 2011 and set up my little “A handy man that will turn up” business (I trained and a joiner) and it was great.

But I only got about two years before my Lymphoma became very aggressive so had to stop working and even now, four years post treatment I still don’t have the energy capacity to commit to do any work for folks as it would just take far to long so I just potter in my workshop and that is great.

So when cancer treatments came thick and fast we had to tighten our belts but we are good and got bye - a cancer journey does make you assess what is important and what is ‘actually’ a necessity to live.

It’s good that you understand it’s all about building up your energy reserves, then understand the best way to use your reserves trying not to let the tank go to empty.

The conundrum about coping better whilst on treatment is so real for many folks..... focusing on ‘life’ and doing your very best to make sure you are living at the end of treatment is all consuming......... then once it’s all over - your warm, safe blanket gets taken away and on the whole you are let out to pasture to fend for yourself.

The NHS has not got this part sorted out yet :( so for a period of time we are groping around in the darkness, making many mistakes and wrong choices........ but it does improve, but it does not help if you have so many things that ‘have’ to be done and no capacity to do them all.

5k Race for Life in June !!!!!  well done you and this will be a good positive focus to help order your mind.

It was an interesting few days with my 90 year old mum. Staying in the house that I was born in 64 years back, no down stairs toilet, refuses any in home help. Cuts her grass in the summer!!! 

We took her out for a run round the farms and houses that she was brought up in and where we lived for a good number of years and we would hear the stories of walking 5 miles to school after having been out to see the the beasts in the farm.

She is the last of her generation and they all lived to a good old age and I put it all down to good plain home made food, sleep and had work........ I wonder what our ‘snowflake’ generation will be like when they get to 80 (when my mum retired as a school lollipop lady!!!!) we don’t make them like this anymore.

She is so switched on mentally but we are starting to see the beginnings of this crumbling so we have been trying to get Lasting Power of Attorney set up but boy it’s hard for her to understand that we are not trying to ‘get’ all her money.

Have a good week and as always - always around to listen and encourage x