Life is such a roller coaster
with this illness. I have been having some good days recently, some really good
days. Some days with clear daylight between attacks where I can be in charge. I
have adapted so quickly...crazy quickly… to feeling well. I have an action
packed routine every day now that starts at 5:45am as soon as my attacks finish
and goes through to the next pain!
I’ve got so much ticked off my to do list in just 3 weeks
Inevitably, with the 40 mins to 2
hours’ sleep a day that that has been giving me, on the back on months of being
ill 22-24 hours a day my body is now rebelling. After just 3 weeks of ‘life’, I’m
ill. My Cluster headaches are starting to creep into MY space in the day time
and I’ve had 3 infections this week alone and woke up today with a raging sore
throat.
I can’t sustain being ill all night and living all day
But I refuse to sit and rest and
sleep during the pain free times… I want to be living and enjoying the limited
time that I get blessed with good health. But 3 weeks is about my limit. It’s at
this point that despite having sticking to my meds and charging routine I realise
that in the balance of my life my health needs more attention. I need to rest
more (I HATE THAT!). I am very focused on eating healthily at the moment but
sometimes I forget to drink enough so that needs attention. But rest is the
main thing.
Pre Cluster headaches I lived
life at 100 miles an hour and I forget that the good days now can’t be lived at
the same pace. It so unfair though, when I was living my life like that, I had
plenty of time to rest… I could rest anytime. Now I can’t rest when I’m well…
it seems like such a waste of ‘good’ time. It’s all in the balance of things. If
I live life too fast I end up feeling like I do today, curled up on the sofa
under a blanket with a number of infections, feeling rubbish, when I had a
lovely day with my wife planned.
There is a balance to be found…
time to rest, time to be Katie, time to stay well by eating, drinking and
medicating the best I can, fun, exercise and a social life. I thought I had
found it…but I’m so run down its silly.
This illness is not just a
headache, the lethargy and exhaustion is all consuming. I don’t mourn my old
life anymore; I grieved for it a long time ago. However I feel lazy, or that I will
be perceived as being lazy if I make time for rest. I want my life in between
pain to look like it used to; but it cant.
In order to make the most of this
good time that my neurologist and I have worked too hard for, I need to get the
balance of my life right. However after 8 years of living with this illness
chronically I am yet to find the right balance.
I can’t do this rollercoaster anymore… I need to find the wellness
balance for me and my family.
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