Misunderstood

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

a weakness.

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

return.

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.