One of the things that has always wound me up since becoming chronically
sick due to a myriad of medical conditions is the complete lack of
understanding from about the conditions or the way they can make
me feel. Despite Fatigue being a symptom of PoTs (postural orthostatic
tachycardia syndrome) and EDS ( Ehlers Danlos Syndrome) medical
professionals seem really surprised when you tell them you are knackered
100% of the time, no matter how well you slept. If the people who are
supposed to get it, you know the experts fail to comprehend that you
are dealing with levels of exhaustion they can only imagine, then what
help is there for the non medical people in your life?
A few years ago I really lost my shit with someone who should have known
better, they asked me how I was and I said I was really tired. Without
thinking they said “yeah I am really tired too”.
“ No I mean I am really f**king tired, like I feel like I am walking around
in a dream” I snapped.
“Yeah I get that when I don’t sleep well” They replied
I am not ashamed to admit that I really lost my temper as at this point
I was in a cycle where I didn't have more than 2 hours sleep a night for
three nights and on the 4th I was sleeping 12-16 hours but waking up
still feeling drained. I was hallucinating on the third day due to the level
of tiredness I was experiencing. I had discussed this frequently with the
person in question, they were not unaware of the difficulties I was
experiencing on the sleep front. Yet even with all the information in front
of them they couldn’t connect up the dots that going without sleep for
nights on end didn’t just leave me tired, they left me barely functioning.
It left me feeling as though a) this person had never actually listened
to me when I was talking to them or b) that they didn't believe me when
I said how little sleep I was getting or c) they actually didn’t give a shit,
I was always moaning I was tired. Any one of those scenarios is not one
that leaves you feeling good about yourself.
After losing it with them and having to educate them in the difference
between my tired - it doesn’t matter how much I sleep I am always
feeling fatigued / wiped out and their tired, if they have a decent night's
sleep they feel refreshed, they never tried to claim that they felt tired in
the same way I did again. Now don’t misinterpret me, I am not saying my
tired is special or I am the only one in the world who feels like this. Ask
most people with a chronic health condition / illness / disease and they
will tell you the same, that sleep no longer leaves them feeling refreshed.
Yet so many people in the medical profession will deny fatigue is caused
by a person’s current illness / condition and will offer another label such
as chronic fatigue syndrome - that’s a rant for another day!
I’ve noticed now the CSF leak is back how very few people actually
understand it, I am talking close personal friends who witnessed
what I went through in 2016. So I am struggling to understand why
they don’t remember that I have to lie down when the pain strikes etc.
It is deeplyfrustrating but maybe I am expecting too much of them?
Am I falling into the trap of believing that I am so important that
they should remember this?
I am also shocked by the number of people who have said things like
“ Oh that’s such a shame after you’d healed as well”.
Whilst I have said I have self healed I have also been careful to state
it was to an extent, it had never gone away completely.
I was able to spend many more hours upright
but by the end of the day I was getting positional headaches that would
only be relieved by lying down. I would also get photophobic at the end of
the day, bright lights from screens including the TV would feel like they
were burning a hole in the backs of my eyes. So whilst I was aware things
had vastly improved for me, I was also aware that I was still leaking just
at a much more slow rate.
I’ve also been really clear to those around me that it was highly likely that
the symptoms of a full-blown leak would come back. The leak was probably
caused by me having EDS, as I have a weakness in the dura due
to having a lumbar puncture in 2009 ( the protective
covering around the spinal cord and brain) there would always be
So it’s frustrating when people question that the leak has returned - like
the gp did last week. There is no mistaking a leak headache once you’ve
had it. It is a pain like no other, it’s the only head pain that makes me
clutch my head. I also get stupid comments from people like
“oh when I get a bad headache I soldier on because
I have to. Not everyone can
just go to bed because their head hurts”.
That’s when you know that person isn’t experiencing a CSF Leak headache
because I will be blunt there isno fucking choice with a leak headache.
You know when you see medical dramas and people collapse to
the floor in pain, thats what a leak headache
is like. It hits you like you been attacked on the back of a head with a shovel.
It makes you drop to your knees, if I could cry with the pain I would but when
it strikes I am unable to do anything because it literally takes my breath away.
Somedays I am lucky and I can manage a few hours upright before I have
to lie down. Other days I am upright for minutes and then I have to lie down.
It is not a lifestyle choice it is the only way I can survive. It’s still not currently
as bad as it was in 2016 and I am determined not to let it get that bad. Before
I would push through until I was at the point of collapse. Now once the
head pain starts I lie down, yes it’s frustrating but I’d rather lie down
immediately than keep pushing to the point where I am bed bound
for days on end.
The only thing that works for a lot of people with a leak
is lying flat however there are those who have leaked for so long that lying
flat no longer reduces the pain that they are in. Painkillers just don’t work
on this headache, nothing I have ever taken has ever stopped the
headache and that is the same for almost everyone with a leak. You get
relief when lying flat when you have a leak because the fluid is no longer
fighting gravity to be circulated around your spinal column and brain.
By lying flat you increase the level of fluid surrounding the brain, which
is what provides the pain relief. Somedays within 30 minutes of lying
flat the pain is gone other days it can take several hours and I am still
left with a headache. However once upright again the headache will
Obviously life spent flat on your back is not very fulfilling, its
reduced the amount of sewing I can do as not only does the leak cause
me pain this time it is affecting my vision. Its giving me quite a bit of
double vision / blurred vision. I am having to use a magnifying glass
and my reading glasses to be able to thread needles ( that is whilst
using a needle threader both on my machine and when I hand sew).
It makes things so much slower but I have to keep my hand in because
without sewing I would be lost completely.
I have managed to make a few bits, quite a bit was completed before
the leak started and some of it has been completed in snatched moments
when the levels of head pain are low / manageable. I have been able to
finish items by hand whilst lying down so that’s a bonus. So here are
some photos of what I have been making lately
I’ve been making a lot of baby bibs, some have been gifts and others
have been paid to make.
Cushion cover made before the leak started -
Travis bag for my Instagram Friend
I also made some voodoo dolls for a bit of a laugh, I never thought
in a million years that people would want them but my (twisted) friends
have gone crazy for them. Thankfully they all know how poorly I am
at the moment and don’t expect me to rush to get things done. One of
these is making its way to the USA as we speak. It’s my very first item
that has gone to the USA.
So I still managing to do some sewing, it’s not as much as I would
like but it’s enough to keep me sane at the moment.