Party time..but struggling

I am writing this whilst having a really really bad day.  I have been in bed the majority of the day as my whole body hurts. I have the most horrific fatigue, it feels like I've been hit by a bus then a train too for good measure.  I haven't even managed to get dressed & it is evening which must mean it's one of my worst days as I usually make sure I get dressed.

It is my daughter's 5th birthday party tomorrow though.  Which means I have to be ok.  No question about it.  Whatever my body is doing I have to be there.  And I want to be there.  I know I will suffer badly from it but I don't have a choice.  I have missed out on too much over the years.  Plus I am looking forward to it.

We (possibly crazily) decided to do the party ourselves.  A princess one for 25 girls! So the planning has had to be done over several weeks.  Months in fact.  This week has consisted of wrapping pass the parcel, putting together party bags including bracelets that I have made, princess ones, which I've been doing over the last few months.  I started making bracelets last year, when my daugter started school as something to do when I feel upto it & I love it.

We have various fun things for them to do and family & friends are helping. One of my carers is coming in the morning to help prepare food & is coming with to the party too.  Several friends have offered to help also which is really lovely.

People will see me tomorrow, make up on, running on adrenalin, looking no doubt fine & the ones who don't know I am ill will have no idea.  They won't see me in the days after the party when I am crashed out in bed unable to do anything except lie still dosed up with painkillers.  That is one thing I still find really difficult, even after so long. The post extertional malaise (PEM).  The way we pay so much for doing the most "normal" of things.  The things that non poorly people take for granted.  I used to too before I became ill & would never have imagined my life would be like this.

So for now it is back to resting & hoping my princess has an amazing party.


  1. I really, really hope tomorrow goes as well as possible for you health-wise. Sorry today has been so awful. Like you I try to make sure I'm dressed when I'm well enough to be out of my pyjamas. Fingers crossed your daughter has a wonderful day and the payback won't be too horrendous for you xxx

  2. Thank you so much. I shall report back afterwards ;-) xx


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