Lately I have been doing it tough health wise. Or should I say tougher than usual. So I thought it would be a good time to write about crashes and flares. Although due to the flare it's taken me a good while to write.
You may have heard many sufferers talk about having a crash. Now to most people, myself included, that conjures images of them having been involved in a road traffic accident. But what is actually meant by the term is a sometimes literal crash to the ground of their health, energy, concentration. It can often signal the onset of M.E if you are previously undiagnosed and can be known as a trauma. This is what happened in my case, which you can read more about here. Other traumas include infections, accidents and bereavement. Something that will stop you in your tracks and knock you off course.
Once you have M.E, crashes can happen frequently. They can be triggered by an overload of activity or what our brains perceive as such. Many of us aren't physically overloading ourselves (by which I mean often next to nothing and the most active thing being going downstairs) however there seems to be a fault in our nervous systems that tell our bodies there's too much going on and they need to shut down in order to cope. As well as chemical changes such as adrenalin levels. Crashes can also occur from an overload of emotion or too much activity going on around you. For me personally my biggest trigger is loud music, in particular really bassy music. You know the stuff with the really thumpy bass. It makes my whole body reverberate and feel like I'm being thumped, and torn apart, which causes agonising muscle pain and the feeling I'm going to pass out and a crash can come on in a matter of minutes.
Often there are warning signs but they never really prepare you for them. Because when your body decides to crash, that's it going into hibernation. Much like a computer that's been on all day with lots of tabs and programmes open. Chronic illness and M.E in particular is a constant series on peaks and troughs that can vary a lot. A crash is when you find yourself at the bottom of one of those troughs.
Now let me just point out I'm not talking about organs shutting off or failing, and in need of a crash team and defibrillator it's not that dire. What I'm referring to is a power cut of sorts and while it's not critical it can be dangerous, especially when it comes to when and where it happens and it's often very frightening.
A sudden crash can come on without much warning. It may also lead to a flare, where you will experience high levels of symptoms for days or even weeks. Or worse still a relapse, where you struggle to improve for a prolonged period of time. So what happens? For me, I can experience anxiety type symptoms as though I'm about to have a panic attack. My body becomes tense and I can be feeling somehow overwhelmed, like something bad is about to happen. This is the fight or flight mechanism kicking in. When our bodies and brains perceive they're under threat this kicks in to help us get away from any danger. You can often be mistaken for being drunk, because you become very unsteady and start to slur your words. Often drifting in and out of consciousness. My eyes struggle to focus and blinking becomes rapid. Then I start to feel very heavy like I'm being pulled down. And the brain starts to shut off. You close in on yourself. Almost like when you are having an anaesthetic and the anaesthetist asks you to count down. It's not as controlled as falling asleep nor is it the same as being asleep as you still have some perception of what is going on around you. Hearing etc. In fact sleeping at that time can be difficult because of the adrenalin in your body. It is more a matter of different states of consciousness. However, you can literally feel yourself shutting down. It's very scary.
Your eyes can either be open or closed. However, it's like the lights are on but no ones home. Usually they'll be closed but you may be able to open them up after a while, all depending. As I said my first crash I couldn't open them for 3 days. If your eyes are open then everything is blurry. Regardless whether your eyes are open or shut being able to communicate is difficult. Your ability to speak is lost and it can take a lot of effort to mouth or whisper words.
Now you'd think that at times like this some of your other systems would shut down. Like your bladder and your thirst. Which as you can imagine when you're feeling completely shut down and unable to communicate well is hard. With your bladder it's again because of the fight or flight instinct, your body wants to lighten itself in case you need to flee. Gee thanks primeval get me away from woolly mammoth instinct.
Luckily the other day as I felt myself starting to crash I had made sure I had my phone literally at hand and put it so that when the screen was unlocked it was on my messages. It did take a while to get to that stage to be able to unlock my phone however. And I was only able to press a random letter and send. The problem was that my family thought that I was actually fast asleep. So although they were getting messages they thought I was leaning on my phone. So other people knowing the difference can be a big issue.
Thankfully they soon realised I needed help. I could only mouth what I wanted. Luckily I have a commode, so as I was downstairs and very weak it was very handy. Of course I needed a lot of help just to sit up and up on to it. I was extremely weak and floppy. Another issue is of course you can be desperate for a wee but don't have the muscle capacity to do it. That's how you know you're weak.
Below I've listed some things that you and your 'carers' can do to help and keep you safe.
Things you can do:
Try not to panic. This will drain you even quicker. Take deep breaths and reassure yourself.
As soon as you start to feel a crash coming on. Get yourself to safety and comfort. Lie down on your bed or a sofa
Avoid walking too far incase you fall and avoid the stairs. Try to avoid lying on the floor if you can. One because it's cold and uncomfortable and two because it's going to be hard enough to get up as it is.
Have your phone close by. As close to hand as possible. And like I said above ifyou have it set up on phone or messages.
Maybe set up a sign system with your 'carers' so you can effectively communicate what you want. Or cards with yes and no on them. Obviously develop this on a good day
Also make sure your 'carer' knows your triggers
If you are out and about, particularly if you are on your own, carry a medical identification card. You could make one yourself, providing information of your condition and what others can do if they find you. Providing contact numbers can also be useful
Stay put for as long as you need too. Do not get up or move until you feel strong enough and only do so with help
The next day spend it resting and doing as little as possible and for as long as it takes for you to regain your strength. Remember this could take weeks, and your post exertional malaise will be even more significant. You may also find that you sleep more
If your relapse is prolonged or more severe seek medical help
Make use of youtube, iplayer, Netflix etc if you can tolerate it, as it's a way to keep occupied but not having to hold up a book etc, which can be painful
Things others can do for you:
Put communication devise by them, if they don't already have it
Know the likely triggers of their crash and do what you can to stop it. Example, loud music- put ear defenders on them (if they can tolerate it) or relaxing meditation music can help cancel it out. Try and get whoever is playing the music to turn it down or off
Try to eliminate as much activity as you can around them. Switch off the telly etc
Make sure they're warm or cool them down if they are overheating, a wet wipe or face wipe is useful. Note that temeratures can change quickly too so keep checking
If you do need to lift make sure you lift correctly, bend your knees and try not to hurt yourself
Ask questions, do they need anything? But be specific so that they can nod their heads rather than saying. for example; Do you want a drink? Do you want any painkillers?
If you're giving them a drink use straws
Sometimes a crash can be due to low blood sugar so get them a sugary drink to help raise it again
For the next few days you will need to be on hand more. You may need to help getting them up, feedin, managing their medication. Especially things that take much concentration.
Try to make sure that they do not over exert themselves and are resting properly
If a relapse lasts longer than usual or is more severe seek medical help
I have also found this online paper here that can help others understand what is going on in these instances. What signs to look out for and how they can help you. It is well worth the read. Apologies it's been a long one folks but hopefully it's been useful.