HOW TO COPE
Get your life back
Having ME can be devastating. It affects not only the sufferer but their families and friends too.
You never know when you will either go into remission or be cured totally so, in the meantime, here are some things we have found that will definitely help you cope.
The number one key to coping with ME
If you have ME then you are probably a driven, motivated and ambitious person used to doing loads every day. You never stop and always have an eye on the next thing you are going to do.
But, now, you MUST change your mindset. Re-adjust your expectations.
You can still achieve stuff but not as much and not as fast you used to.
Trying to push WILL make you worse.
At first, as you try to determine what you can and cant do, you have to limit yourself to achieving small goals. Do one small thing in a day and then wait and see what the effect is on you. Some things take a couple of days to affect you too. If you are fine the next day, wait another day before you decide you can do that thing every day!
Remember, different things will exhaust you now than before. Use Charting (see below) to help you understand how your body now reacts to different activity.
"Save up" your energy before an event that you want to go to. Rest up for a few days doing nothing more than very light exercise for at least three days, if you want to have a chance of making it to that wedding or concert or whatever. DO NOT spend the day before an event fussing, preparing and worrying about the event or you WILL crash and burn!
Know what affects you
At the end of every day, give yourself a rating from 0 to 5 where 0 is you couldn't get out of bed or do any activity, and 5 is a perfectly normal day. Also, note down any activity you did do (high level bullet points not war and peace!).
Every week or so, look back over your notes (you may need a friend or partner to help you if you are having brain fog) - plotting on a graph is a great way to see the trends.
Look for reasons for the zeros and ones by looking at what you did the previous two or three days. Try and see any patterns that may indicate the activities that stress you the most. We are all different so what affects you might not affect another sufferer in the same way. Some people find mental stimulation must more debilitating than physical activity for example.
Just as importantly, look for the higher numbers, see what activities boost your energy and what kind of rest helps (sleeping isn't the only way to rest).
The last thing you feel like is exercise. You are completely worn out and you can't string two words together.
BUT, its very important for you to some gentle exercise every day!
A short walk or cycle, gentle pilates even very light gym routines can all help you in several ways:
You will sleep better - good quality sleep is even more essential for an ME sufferer than for a 'normal' person
You will generate endorphins that will help raise your mood (ME sufferers often suffer from low mood or depression)
You muscles will be maintained - lying in bed or simply sitting all day can mean your muscles deteriorate until any kind of movement becomes difficult
you will have achieved something today - even a short walk is an achievement! That alone can help lift your mood as long as you manage to re-adjust your mindset from "I can't do anything like I used to" to "I can do little things and build up!".
Not as simple as it sounds!
Resting is not just sleeping!
Whether its to do with blood flow to the brain, or something else entirely, many sufferers find that after a hard days brain fog, their head hits the pillow and suddenly, their brain clears and they start processing at what seems like lightning speed.
This makes it difficult to sleep. Not only are they excited at being able to think again, they can now start to plan all those things they really don't have energy for. Before they know it, it's morning and they haven't slept a wink!
So, another mindset re-adjustment is required. My body can rest even if my mind is active. Worrying about the amount of sleep you get is a vicious circle, the more you worry, the less sleep you get. so here are some tips to help you rest more effectively:
Use the bedroom only for sleep. The rest of the day be somewhere else. Your subconscious needs to relate the bedroom with sleep.
Try lying down (on the sofa perhaps?) not to sleep but to think. Get the thinking done before bedtime.
Don't use phones, laptops or tablets an hour before bed (The blue light can cause overstimulation)
If you watch TV Before bed, choose something that will relax you rather than excite you.
Have the bedroom at least 2 degrees cooler than the rest of the house - Your body will automatically become sleepier when it hits the cooler air.
Avoid sleeping at times other than bedtime. Save up your sleeping.
Rest in other ways: Listen to music while sitting in a chair with your eyes shut, try meditation techniques, look for guided meditation soundtracks where someone guides you gently through a forest walk or a day on a tropical island, read a book (if mental stimulation isn't one of your 'bad things') or listen to a talking book.