This past 24 hours have been a roller
coaster ride of emotions for me. I'm having a crisis day, Post
Exertion Malaise, if you want to get formal. I blame it on Physio
yesterday if I’m honest. But as I wrote in my first post I try and
work through these things because I need to. I've kept myself in bed,
I’ve only got up once to use the Loo, and even then I was pushed in
my wheelchair by my carer, but like the huge amount of exhaustion I
feel, my emotions have been everywhere.
Yesterday I was on a high, I posted my
first ever blog post and people Actually Wanted To Read It!!! People
were interested, people were sharing the address around and I got
excited, that maybe this is what I am meant to do in life? I was put
on this earth, not just for myself, but to fight for others as well.
And that was the reaction I’ve got from the people who have taken
the time to read the extremely long post. In the end I think it came
down to 2611 words. Which is the equivalent to one of my University
essays sometimes. But I was so impassioned by the need to write that
it flowed and I was able, even though I am suffering for it now, to
get it done and out to a few friends in about an hour and a half.
How this started was that one of my
friends on foggyfriends.org (my CFS/ME support system) thought I
should get it printed, but we soon realised the possibility of that
happening was zero to none, so the next idea that cropped up was a
blog. We didn't know what was going to happen or really know what we
were doing, myself especially, but having read my words my friends
KNEW that it needed to be seen by people like ourselves. That there
was someone out there that was willing to fight for them, and with
them side by side. Even if I only reach a few people. A few people
who read my last post, or this post or a future post and it gets them
thinking!
Those few people, have read the words
I wrote in desperation, that having actually read back to my mother
part by part I can do nothing but cry as I read. The words are so
heart felt, that my heart breaks knowing that I’ve had to get them
out there so that people in some small way understand what I, and
others, go through daily.
We wake up exhausted, the analogy goes
that on a good day we've ran a marathon, been beaten up and got the
flu all at once... at least I think that's how it goes, or at least
that what it feels like to me. Then we try to get out of bed, the
aches and pain, usually stop us in our tracks for a while, we need to
take a breather just to sit up in bed. The next thing is standing up,
well in my case that is just not going to happen, I shuffle into
wheelchair with my carers help and she takes me through to the
bathroom. She helps me get undressed, she gets me on to my shower
chair and after putting on her apron and gloves begins to shampoo and
condition my hair as clinically as a carer whose become a friend can.
Remember this is a GOOD day!
She then asks whether I want to shave
my legs today? “Do you think you can do it yourself today, or are
you going to need some help”, to which my reply always is, “I’ll
give it a go”, so I try and I fail, because bending up and down,
even whilst sitting, is too much. She'll finish it off and then give
me a wash down with a flannel and some nice smelling body wash... I
like to get the strong smelling ones, because if I have a bad day
tomorrow I can sometimes still smell it on my skin and so a baby
wipes wash still makes me smile. We then somehow get me back into my
wheelchair and roll back across the hall to my mothers living room
where my bed is. I towel off as much as I can and then she takes over
the rest. We get me onto the bed, and we start the shuffle.
I've found that leggings are a
godsend, cami tops are a staple and big fluffy cardigans are a wonder
to behold, but I still need help getting these easy clothes on. And
my carer does it without complaint. Knickers and Leggings go on at
the same time to conserve energy, bra and top go next and sock are
last. She cleans between my toes to make sure they are dry and then
puts my socks on one at a time. And I lay back on the bed, where I
will remain unless I need to be anywhere urgently; Doctors, Physio,
Toilet... in that order... maybe if I’m having a BRILLIANT day my
mum will take me to a nearby town and we'll look around the shops but
I’ve found that falling asleep in Primarks is not acceptable public
behaviour, neither I falling asleep in Waterstones, or at the table
in a café. But remember this is a GOOD day!!
My carer makes sure my water bottle is
topped up and then goes. And its just me in my house on my own with
my little dog. And we sleep, or if my foggy brain will allow and my
memory is playing fair I’ll start, continue or finish my university
work. I might even have a conversation with my carer when she comes
back to give me lunch, but remember talking takes energy, physical,
mental and emotional energy drains me. BUT, this is a good day, so I
have a chat and maybe go on foggyfriends and have a look in their
chat room, or have a complain about how I’m feeling or just talk
about how I’m getting on with my work. My carer usually leaves me 4
Jacobs crackers and a dairylea triangle as a snack, because my
stomach can't take much and to be honest, this I'll probably leave
and have for tea/supper/dinner later on whilst my mum and brother
have whatever they want or have cooked.
But I’m having a good day but I’m
exhausted now, I’ve probably done too much, even just laid here in
my bed surfing the internet or doing some essay work, its probably
been too much. But I remind myself, I've had a GOOD day. Tomorrow
could be different, so I try and make the most of today, but this is
a bad thing. It leads me down the Boom and Bust path way. I shouldn't
do so much on a good day that I get Post exertion malaise the next or
following days. I should only do 10% more on a good day, than I do on
a bad day.... that 's the rule apparently.
So its the end of the day, I’m
getting more and more tired, so tired I could do with my carer coming
back to help me get undressed, to the loo and into my pyjamas. But
she can only come in for Breakfast and Lunch, that's all I have
funding for at the moment. So my mum after working a full day as a
carer has to come home and care for me here as well. As it is with a
lot of families with a condition like mine, someone needs to go out
an work to support the family, but then when the carers aren't there
they also then have to, on top of a full work day, come home and look
after their loved ones as well. My mum comes in, takes one look at me
and asks the question “do you need help?” and I have to degrade
myself in a way to say yes, because I am a 21 year old woman, and I
feel like I should be in a nursing home, because I can hardly do
anything for myself... BUT this is a GOOD day!!!
But this is where relationships can
become broken and bitter, its not a relationship of equals any more,
no give and take, just take take take. But we try and make it up on
our good days. We try and get them a cup of tea made or give them a
hug if we can lift our arms up or show in some way how much we
appreciate their help and support, but if your Family or Partner,
Husband, Wife, Mother, Father, sometimes your Child, don't fully
understand your condition either, that’s when break downs start to
happen. That's when relationships of all kinds become fraught and
tense and sometimes they break. Its unfortunate, but sometimes its
the only thing that can happen but they didn't sign up for this in
all probability. We were just lucky to know them for a while until it
got too much. But we still love them, and we understand, we can't
fault them and that’s what makes these things all the more harder
especially if its a Husband and Wife, Boyfriend or Girlfriend, we
want to get angry but we can't because we understand why they had to
walk away. It just got too much for either of us to handle, and in
the end we don't want them getting ill either. Stress, getting run
down and just the sheer amount of work they have to put into their
own lives and to help us must be immense. Actually no not 'must be'
it IS immense.
Some are lucky and have wonderful
partners who are completely devoted to one another and I have one
couple in mind when I say this. They make it work where so many of us
fail. I'm in no WAY saying that we can't have relationships that are
successful, they are just harder to maintain. Its not an easy potted
plant, its a whole flipping rose garden that needs tending too. And
some are great at it.
So, my day has ended, mother reminds
me to take my medication, I take it, and then I pop in my headphones
with some soothing music and try to sleep as best I can because I
don't know what tomorrows going to bring. I can give a good guess,
but you can never tell until you try to open your eyes and its either
easy or hard... then you start to get the feeling of what type of day
its going to be, and the cycle starts again.
My social worker, I have a shiny new
one now, wants me to be able to live independently. Wants me to be
able to go out into the world with confidence as a 21 year old
should. I should be able to go shopping if I want to, or sit in a
bookshop and sneakily read the books, or go to the cinema – I’m
not a drinker so I stay clear of the pubs now, although I did find a
pub turned cocktail bar that makes an amazing non alcoholic cocktail
but that’s for another time. I should be able to do those things
and we are working towards them, but now I get political again.
BUDGETS ARE GETTING CUT!!
I'm not able to get a job at the
moment so that poses the question of how am I going to live
independently with no funds. The government. They tell me to start
bidding on houses on the Housing association websites but with what
to pay for it should I get one? Like I said in my previous post I
don't get Disability Living Allowance, I can't get any sort of
employment support allowance because I’m a university student and
its too late in the year to apply for Disabled Students Allowance...
So the question many of use ask is how do we do it?
We have to fight to get up in the
morning to ring one office or another to make one claim or another
and then we get rejected. Because Chronic Fatigue is not deemed
seriously enough. Conversion Disorder/ Functional Neurological
Disorder is hardly even heard of.... so we need doctors support. But
what happens if our doctors aren't supportive? They won't write a
letter of support (that we'll have to end up paying for somehow)?
What then?
And that is where I am now. Where most
of us are now. No steady income, bills stacking up, worrying and
stressing about things we have no control over, that drains our
precious energies away but that need doing.
So what are we supposed to do, if our
government won't help us? Long term? Short term? Where are and what
are the answers??
The Last thing I want to say is THANK
YOU, to all those that took the time to read my post yesterday. At
the time of me writing this I have had 82 reads, 76 for the United
Kingdom, 2 from Sweden, 2 from the United States, 1 from Germany and
1 from Canada. I thank all those people that took the time to read my
post, and hopefully some of you took away something from it that can
enrich both your lives and those surrounding you, whether you know it
or not.
Please keep passing on the blog
address, or tell someone you've read it or something to get the word
out, because no matter how fantastic the few are, and the big
difference they make. It is the masses that make the most difference.
