A day in the life of ME!

Imagine a full battery. Now imagine a battery that's almost empty. *That's me*! And that teeny tiny bit of energy is supposed to get me through a day.

In my previous blog about spoons here
I talked about how they are like units of energy & each activity, no matter how small, uses up a certain amount of units (spoons). Once they are gone they are gone & you are literally running on empty.  Too drained to keep going. Out of power so to speak.

A typical day for me starts after probably having a rubbish sleep the night before. Even if I have slept ok I feel horrendous when I wake up.  Like the worst hangover ever.  I may as well have been out partying all night as that's how it feels.  The unrefreshing sleep is a major symptom of M.E. And that's on a good day! Some mornings it feels like a train has hit me in the night & everything hurts so badly.

I always take some sort of snack upstairs with me at bedtime so when I wake up I can quickly eat something & try to top up the little energy I have.  Depending on whether I am up with my daughter or not depends on what time I wake up.  If it's my turn then it is sometime around 7am which when you've not slept great is a bit of a nightmare sometimes! I drag myself out of bed & walk round like a zombie. If I catch a glimpse of myself in the mirror I scare myself quite often.  Or laugh at what I look like!

If I am up with my daughter for school she usually has me hysterically laughing within minutes with whatever crazy thing she does. Great mood lifter having a child (sometimes!) She practically bounces out of bed & has so much energy!  She gets dressed & we go downstairs to get breakfast. Me usually still in a zombie state!!

My carers come around 8am & take her to school for me now if it's my days to do it. Which means I can chill & stay in my pj's then go back to bed haha! Usually within an hour & half or so I am flagging & need to rest.  If I don't stop & rest & push myself to keep going it means I won't pick up enough to get through the rest of the day as I go into negative energy.

On those days I get a decent amount of time to properly rest & if I can snooze it helps pick me up a little bit.  I have to try to make sure I eat regularly & snack on stuff otherwise I go light headed (see previous post on food). I usually ask carers to make something like a salad for me & leave it in the fridge so I can quickly grab it for lunch when I am hungry.  I tend to spend those days resting & will watch some stuff or do a bit of jewellery making if I feel upto it. I go online & can talk to or have daft conversations with my online friends on social media. Or I browse glittery things online & wish I had loads of money to buy it all! I tend not to see friends on the days I have my daughter as I know I will need energy for later on.

Then at school pick up time I will either go to collect her or a carer will do it for me. School are good & allow me to park in the carpark but it takes so long as I have to get there earlier & leave after everyone else so I find it really draining.  It's a lot easier if I just wait at home & then am likely to be able to actually spend some quality time with my daughter when she gets in instead of needing to rest straight away.

She knows I have to have rests & is quite happy drawing or playing or watching something while a carer stays with her, so I can go & lie down for a bit.  I just need to keep topping up that almost empty battery as much as possible to avoid it completely draining & me crashing. Which happened a few days ago & was very scary but will talk about that another time.

Tea & bathtime soon comes along & we always end the night with stories in bed before she goes to sleep.

Weekends I find difficult as trying to occupy her for a full day is tough so if I can get someone to help out it gives me a break & allows me to rest.

The days where my husband isn't working are pretty much similar apart from me not having to get up as early! I might arrange to see friends or go shopping but all depends on how I feel that particular day.  I hate having to cancel on people but they understand.  If I do go out, even if just for a coffee & a catch up, it wipes me out.  But I always think that if we didn't do stuff then an already difficult life would be even more boring! It is sometimes worth the Payback for doing something you enjoy even though you know you will suffer for it.

People might think how good it must be to not have to get up & go to work.  But it's not. It's rubbish & it's very hard to stay level headed & not get too down about it.  Some days I cry & scream & swear just to get it out of my system.  Which of course wipes me out even more! Not one person I know who has to live this life would choose it over being what I call "normal". What even is normal anyway? Being normal is boring I say!!

I am going to be doing a question & answer blog post soon so if anyone wants to ask anything relating to the M.E or my condition please leave a comment below or send me a message (those who know me!)

Thanks :)
xx