What has happened to my energy?
What has happened to my energy? Back in the day, I had so much get up and go. I had a 9 – 5 job, 3 young children, a garden to look after and numerous other responsibilities. From about 2005 the wheels began to come off the car. I gradually had less energy to fit everything into each day. This was the start of fatigue.
I’m not alone
Almost everyone with advanced MS will arrive at a tipping point, Suddenly the ability to get up and do something exceeds the pleasure derived from doing it. Poor balance doing things in the garden is an example. I’m now banned from pruning the roses. Gardening must now be done sitting down.
If I do need to stand up for a while I keep my balance by holding onto something solid. Recently I tried freelance standing but suddenly a plant pot turned into a makeshift seat. The plants survived but my dignity took a hit. Watering is done sitting on my mobility scooter with a hose. These days doing too much of anything in the garden is a no-no, I just get exhausted.
When I was younger the mornings were the best part of the day. Dog walks, going to the market and even seeing the sunrise. Nowadays life is different. Allow forty minutes to get washed and dressed. Now add fifteen minutes to do some simple exercises. Downstairs I am now slumped at the kitchen table, zonked, staring at tea and a bowl of muesli. Its only nine o’clock, I am washed out with the whole day ahead of me. This is fatigue.
Good days, bad days
Some days are definitely better than others. If there is no list of jobs-to-do then the day could drift away from me. Yup some days I must go out and be a service user. Other days its up to London by train for a medical appointment. When I roll back into the house it takes me at least half an hour to move off from the seat I collapsed into. More dreaded fatigue but I must not moan. Others get it much worse than me.
On the other hand
Lack of energy or fatigue is a hidden disability. There is no yellow sticker saying “Warning person with fatigue”. This enormous problem does not entitle anyone to disability benefits and possibly not even a Blue Badge parking permit. At times life is unfair.
What has happened to my energy?
Age steals energy, but the rate of loss has suddenly accelerated with advanced MS. Keeping two thoughts in my mind at the same time does not happen. There are other things that have happened as well. My world is smaller, I have fewer friends and my power of concentration is not what it was.
There is no charger for me to plug into. The only solution is to live life at snail’s pace. I take extra naps and spend more time in bed, I don’t look back to those younger carefree days, they were great fun. Now its fatigue with my MS life.
Sometimes I cannot get out of first gear
Multiple sclerosis is a vile disease
Research shows that the so called “hidden” aspects such as fatigue and cognitive decline (which in itself it made worse by the fatigue) are the main reasons people with MS give up work. Thus finances and social lives shrink further.
Wheelchairs can help in terms of mobility, medication & medical devices can help with some symptoms (catheters, FES etc), technology can help in some ways … but no magic wand yet for fatigue.
Only solution seems to be accepting the need to pace ourselves (and in the longer term nutrition & exersize). One thing that really helps me is my mobile phone and specifically the pleasing discovery of Audible & Spotify. So now when I have to lay down inbetween activities instead of being frustrated & upset I can be cheered up by listening to a book. Or music or podcast or meditation or whatever “floats ones boat”!
One of the few good things from Covid is the growth in being able to work from home. I literally go to bed at lunchtime, which obviously I could not do in the office!
Also more people of all ages are happier with chatting on zoom, whatsapp etc which helps keep in touch when there is not enough energy to travel.
So there are some positive changes in the external world over recent years which can hopefully compensate somewhat for our own internal decline.
You have definitely identified some great work arounds. Yup, Spotify and Audible have been helpful as well as Social Media. SM gets a lot of bad press, it helps me to keep in touch with existing friends and make new ones.
Thanks for the tips
I slept 18 hours a couple days ago. My body had had it and would not let me out of bed. The fatigue is brutal. 23 years with MS and fatigue is relatively new to me. I could live without it! It wouldn’t be so bad if I woke up feeling refreshed after that sleep, but that doesn’t ever happen. It is so hard to explain to others. I was telling my sister last night that my cells are tired. that’s the only way I could think to explain it. One day at a time is all we can do. Blessings to all.
That must be a huge burden on your life. It has only recently crept into my life and the consequences are huge. Its waking up in the morning not feeling refreshed that I hate most of all
Do you have a Sunflower Lanyard?
A number of shops give them to customers on request
MC Black (Dr.)
Need to Google that, don’t know anything about it
It took me until recently to understand that ‘fatigue’ isn’t ‘feeling tired’ – it’s knowing that you won’t have the energy to make it from a to b, or to complete x task. It’s a bitch. Let’s all concentrate on the good (better?!) days 😀
Sometimes I am so knackered even at 9 in the morning that I don’t have the energy to do anything else for anything up to an hour. Getting dressed was the culprit.
This problem call it ‘fatigue’ or ‘feeling tired’ or ‘exhaustion’ makes my world smaller and that is the real problem. Its a huge hidden disability and perhaps it is wrong to describe it as feeling tired but people can relate to that
I can fully relate to everything you’ve said in this article.
It completely changes what I can and cannot do
you have all my sympathy. I incresasingy feel the same way as you.
So so frustrating. Things take longer and take more energy.