Ok so let's talk Priorities & Time Limits...
We all have events, appointments & general things in life that we have to do. When you have M.E, doing those things can become a bit more difficult & that's putting it lightly! What can also make it worse is that after doing something or going somewhere, a person with M.E can experience something called Post Exertion Malaise, this in basic terms means that after activity, you can experience a symptom flare which may often mean you have to take to your bed for a few days or more to recover.
The backlash of this can also be quite hard to cope with on a mental level. The after effects can leave you feeling regret for what you have done & making you feel like you can't win; You pace & don't do anything & you feel rotten or You try & have some enjoyment in your life & you're still left feeling rotten.
It can become a vicious cycle, a soul destroying one if you allow it to. This cycle can actually make you feel petrified (speaking from personal experience here) to do anything at all because you are so scared of the resulting symptom flare that is bound to happen & the days in bed in constant pain. The trick, which isn't easy, is to not let it....
This is where Toby's advice comes in. He spoke about the fact that we can all still take part in life but while working on recovery, to avoid any setbacks or flares, the key is to prioritise;
Look at all the activities in your life, outings, get togethers, family events, things that you really wouldn't like to miss. Now the likelihood is that you know you can't attend every one of these events, however, you would like to attend at least some. I mean, after all, life with M.E isn't exactly the greatest thing ever, so you deserve some happiness & enjoyment in your life.
Some things are more important than others, so the more important things become your priority. Now you may be thinking, "how can this have anything to do with avoiding setbacks & flares?" Especially when I've mentioned that doing activities can cause flares & though that may be the case, no one should deny themselves a life.
Toby then went on to say that there is a way to control how bad the flare will be. Along with pacing & planning before the event in question, when you do go to your event, set yourself a time limit as to how long you stay for & don't feel guilty for leaving early. Doing this can help the flare that is likely to happen not be as bad or lead you into a major setback in your recovery. Plus getting out & being with people no matter how short a time, can do wonders for your mood & your mental state. It can also help in over coming the fear of the flare.
I made personal application of this advice at the beginning of September when attending a friend's wedding. I paced & planned as I always try to do when having to go anywhere in the days before hand. I knew without a doubt that I would make the ceremony, I even bought a new dress for the occasion;
What I wasn't sure about was if I would make the evening party. However, I took the day an hour at a time, I attended the ceremony in the morning & then headed home. I then got back in my pj's & spent the afternoon resting up & gaining back a couple of spoons while saving the remaining ones I had. I then felt up to attending the evening party but following Toby's advice, I set myself a time limit & I made sure I stuck to it. Actually I set myself two time limits. I decided I would start making moves to leave at one time, but knowing it might take a little while to actually leave (because you know you just can't get up & walk out) I then set a deadline for when I had to be home.
I will admit, I felt quite bad for planning to leave early. However, in the past, I would never have entertained the idea of going in the first place but having the time limits in place gave me some peace of mind. I am happy to report that I stuck to my time limits! I started to leave at 7:30pm & got home by my deadline of 8pm. I'm even happier to report that the resulting flare wasn't as bad as I was expecting or as bad as it likely would have been if I hadn't put Toby's advice into practise.
Having this advice helped me not to miss out on my friend's wedding & I really enjoyed it. Yes I had a flare to deal with afterwards but you know what, some things are totally worth the symptom flare.
Let me repeat that: Some things are worth it!
That's why setting priorities & having time limits are a valuable tool to have, so you don't miss out on those worthwhile events while you are on your way to recovery & needing to avoid setbacks & flares as much as possible.
Toby's wealth of experience & advice is invaluable & well worth looking up & trying to apply. As promised, below are the places you can find his advice & read about his experience:
Have to say another huge HUGE thank you to Toby for holding the webinar, it has truly turned my recovery around & my whole attitude & given me the kick I certainly needed.
Also here is the link to my previous post about the advice Toby gave on Keeping an Activity Diary & Journal: