I was wondering if any MSers have tips on managing their fatigue. I’m already on Amantadine twice daily and this helps. I have periods when I feel really good, almost ‘normal’. So I do lots of physical and heavy jobs around the house, garden, car, outside of the house and going out. Then after anywhere between 1 and a few days later I feel totally wretched and wiped out for several days. Incidentally I have only been diagnosed for 4 months and started on a DMD 6 weeks ago. I know there is a pattern and I should ‘pace’ myself. But has anyone got any practical tips for me which can help me get more into a sensible pattern? Thanks in advance for your support.
The only useful snippet I can offer is don’t waste valuable energy being angry or frustrated (easier said than done) My MS nurse taught me this and it made a big difference for me.
Other than that you need to be your own expert, observe yourself, become aware and conscious of triggers and your reactions. One thing that tripped me up (as a simple techie lad) was that I assumed that my responses would be regular / repeatable and predictable… How wrong I was (am)
So having observed (become aware) of some triggers and limits, try to back off at 75% of those limits and see how that works for you and then re observe and evaluate.
I now tend to try and save energy for the important stuff (only you can decide those priorities) so I have busy family weekends but Monday & Friday are “recharging” days
It is all about (in my not so humble opinion) trying to keep up with the sliding goalposts Every day can bring a “new normal” There will be others here much wiser than me so keep checking.
I think you’ve answered your own question. When you feel good, you end up doing loads of heavy manual jobs round the house. Then you pay for it later. It’s all about pacing yourself. It doesn’t come naturally to many of us. But it does become a way of life eventually.