This could be quite a big blog so lets get in to it.
Ive been thinking about CF a lot lately, not in a bad way
but just in the affects it can have on me/us mentally.
I thought long and hard about it and I never realised before
how long I've been really coping and sometimes struggling with the day to day
thoughts and realities.
I sat and made notes about this topic over the past few days
and it was eye opening. I already knew all about it but never really thought
about it.
Where it all started
When I was younger I must of been struggling with it all
from a young age. I don't remember it much but even at a young age I was going
to counselling I'm sure when I was around the age of ten maybe even younger and
into my early teens. I have no real memory of it why I went, what it was about
or what I was feeling maybe I can't remember, maybe Ive blocked it out? I just
cannot remember it well at all. All I remember is what the counsellor looked
like, the rooms and where I went. Thats it but I know from memory for whatever
reason I went it can't have been good but it must have sorted me out, I know it
has to be over my coping of CF and life itself well my life as I knew it with
an illness.
And the coping with it all didn't last long
Now this part I do
remember more, when I got to around 15 years old I remember really struggling
to cope, so much so I was asking questions about why should I bother? Whats the
point if I'm not going to live that long? Why do all this physio and take all
these pills for nothing? So many questions and I felt like there was no
answers. I was genuinely questioning my own life at this period of time.
My mum and dad could see and hear how I was starting to
really struggle and went searching for help. Im going back sort of 15 years and
before I go into details people need to know that cross infection and stuff
like that wasn't really a known problem back then. See even with CF and the
research that goes on we are always learning new things about it.
My mum contacted the CF Trust to ask for help and they put
my mum in touch with people who ran a programme that helped people with CF
connect with one another and meet to chat and help each other (can you imagine
happening these days with the known risk of infection!!) and they put me in
touch with someone older than me (Sorry Paul) and they set it up for us to meet
go out and have a chat. The whole point of it was to show me that people with
CF can live good lives into older years and that it isn't all a waste of time.
Well Paul was just ace so a nice guy we went out on his motorbike (The first
time id been on a super bike) and got some food and just chatted about CF and
he told me all about what its like for him and how he copes and it showed me so
much. Life as you get older does happen and it isn't as bad as I had imagined.
We are still friends to this day and we do occasionally meet
up (Ssshhhh don't tell the doctors) and he definitely helped me to see beyond
my teenage years and really helped me a lot.
This time I was old enough to work things out with the help
of friends and advice I got myself in a much better place and meeting Paul
really helped me put everything in to place to help me understand things better
and not be so negative.
Why do I think I
didn't cope when I was younger?
I think it’s simple I was just too young to cope and I had
so many questions that my inexperienced mind couldn't answer so I needed help
to find those answers. I really struggled with my thoughts for a long time.
Even in to my teens I had so many thoughts, you know the usual why me? What’s
going to Happen? Why do I find this so hard? So many questions but I just
wasn't ready to understand it all. I was overthinking and overloading myself in
thoughts even at that young age when I should of been carefree and running run all-day
playing and having fun with my friends.
The problem is even from a young age I definitely think an
illness makes you see things differently, to be more wise than your years,
makes you think differently.
I knew from a young age I was different to other people,
different to my friends. Yes I could run around all-day pretty much like them, I’d
get hurt, I’d get tired, I’d do silly things and get in to trouble like any
other child and of course I went to school every day like everyone else but I
still knew I was different. I wasn't normal and that’s the most simple way I
could say it.
In-between doing NORMAL things like every other child I also
had to take 50-60 pills EVERYDAY, I had to do nebulisers EVERYDAY, I had to do
physio EVERYDAY to help move the sticky stuff that was trying to make me ill
and clog my lungs and I coughed and got ill alot. Is that normal?? To me it was
normal as I knew no different but I knew it wasn't a normal life. What normal
child has to go hospital regularly to blow in to a tube to check their lung
capacity or spit in to a pot to have their sputum checked for infections or
tell a doctor what their poo looks like or have to give their health marks out
of ten??
As a child I had to learn a lot and grow up fast, I had to
learn about what my illness did to me, what tablets to take when, what each
tablet did, what physio did and most importantly i had to learn what would
happen if i didn't do any of that!
Is that a normal Childhood?
The strange thing is it was for me and i will never know
anything different.
Can you understand now why things can get messy inside our heads?
So much to deal with and for me personally I tried to cope so much on my own. I
never wanted to ask for help as a kid I wanted to deal with it alone, see I'm
stubborn and I thought I could cope. And that hasn't changed as I’ve got older.
That said I'm grateful for all the support I have had and still get.
And as a kid no one ever made me feel different all my
friends made me feel like one of them and as normal as I could possibly be they
were amazing to me massively caring and always looked after me if I hurt myself
but never left me out of anything. Without friends like that things would have
felt so much harder for me. Im extremely grateful about that and my childhood.
It taught me a lot.
Little did I know my childhood would help me when I became a
parent.
And what about the
past few years
I think looking back I’d say I have been struggling to cope
mentally for the past 3 years but I had told myself I had everything under
control, pretty much with the same issues that I struggled with when I was
younger, the problem that I think was the root cause of it all this time was
because I was older and wiser this time I thought I had all the answers and I
was overthinking everything and this especially is apparent to me over the past
18 - 20 months. Despite doing all my physical training and bike rides and
trying to keep fit and managing to avoid hospital and having a stable lung
function over the past 2 years I was still struggling mentally, I was horrible
to be around I know my personality had changed, I had a short temper and I
wasn't happy within myself at all let alone the situation or things around me
and my mental struggles all came out when I became single again last April that
was the trigger point for me. Not because of losing that relationship but
because it made me see the horrible person I had become, it opened my eyes to
starting to see what I was going through, how I was struggling.
Yes I was gutted totally that things had ended and that
definitely affected me ALOT but it made me see more importantly what I was
doing and how I was feeling about myself. I started to see how unhappy I was
not with what had gone on but with myself I really hated myself and the
situation I was in having CF and how I just wasn’t coping with things mentally.
I was on my own and I was thinking more in the way of
"well who would actually want someone like me?" I was deeply unhappy
within myself because I am always overthinking even the smallest of problems
and I was becoming an angry, short tempered person because I wasn’t able to
understand what was going on in my own head. And yet I wasn't talking to
everyone bottling things up AGAIN thinking I could cope but I wasn't. My mum
described me as a ticking time bomb. I was scared of CF, scared of being alone,
I wasn't happy with myself, I wasn't talking to people I was ignoring my own
plight and I had the temper of all tempers I had no fuse at all for a long time
even before that trigger point.
Even through this period I was still training for new
physical challenges because it kept part of me focused and I knew I still
needed to stay healthy even though I was starting to lose my focus on why I was
doing all that hard work.
It all came to a head when let’s say I had a mild breakdown
and a suicidal wobble (that’s me being mild and not wanting to talk about it
too much about what actually happned that night but that’s not the point of
this blog post)
It left me feeling down more and embarrassed about my
actions but it was my epiphany moment that I really needed.
I ended up getting help because I finally admitted to having
some issues mentally and the first thing I did was phone my CF team in London
and I told them what had happened and they helped me immediately. Two days
after my wobble I was started on anti-depressants whilst counselling sessions
were arranged and 5 days after that I was sat with my CF team counsellor
talking. Still to this day nearly 18 months on I hate admitting to what
happened and that I ended up on tablets because I always felt tablets did nothing
and depression was a load of rubbish even though I’ve seen people go through it
I always thought "that will never be me" but now I know it’s
completely the opposite and I was suffering with depression and I did need them
tablets and I can't hide from the facts it is what it is. I’m not afraid to
admit it anymore that I have had some mental issues but I have been dealing
with them and getting the right help that I needed.
Why do I think I was
unhappy and depressed?
Well I'd say my struggles had been building up for the past
3 years for many reasons. I was approaching 30 years old and I kept thinking
"I shouldn't even be here" I wasn't happy in life in general, I was
lashing out at people around me and I wasn't letting people in to help me. I
was deeply unhappy in myself. I had also seen a few people who I have become
friends with pass away from CF who were much younger than me and you can't help
but think "Well how am I still here?" and I was getting fed up with
the whole CF routine. Take tablets, cough, do exercise, cough, be sick, have to
go hospital, get antibiotics, do nebulisers, never get enough sleep, always
feeling drained, thinking your CF annoys people. It’s the whole CF life I was
fed up with and that effected my whole life in general.
When someone you know passes away from CF it does play on
your mind.
See what I mean about this isn't a normal life? It’s one we
have to learn to live as a normal life and learn to cope with the good and the
bad no matter how hard it is we don’t have any choice do we!!
It certainly does make you appreciate all the good things
big or small a lot more than you normally would.
People say yes but you could get hit by a bus and die
tomorrow. Well CF can be just like that as well more than people realise.
The next chest infection you get or even a cold could kill
you with CF. Does that sound over dramatic? Yes but it’s true it really can
happen like that. When your ill and
struggling even perfume or deodorant can make you cough or get that itch in
your throat that makes you struggle.
You learn to live
with Fear but it can take your mind over sometimes and that’s what happened to
me over the past few years.
Fear had consumed my entire life.
I was training through Fear.
Doing Nebulisers through Fear
Tablets because of fear
I wasn't my usual self of just thinking well it is what it
is and you just deal with things. My relaxed attitude to life had gone
completely. I’m usually so laid back I'm horizontal about life. Nothing used to
bother me about my health apart from when I was younger but it had all changed
and I was nothing like the happy go lucky person I used to be when I didn’t have
a care in the world despite everything I was dealing with everyday.
How did I get through
it and change?
Firstly I had to
admit I couldn’t cope, I won't say its admitting to having a problem because
its not like that, it’s just not coping with your unique life that you have to
life. You have no choice in the life you have to live day in day out.
Once I got into counselling it seemed simple but I never saw
it.
I just over complicate things and overthink things. Yet I
could never see it until someone pointed out the obvious.
That one issue was the root cause it seemed for my problems
personally anyway and of course everyone is different in their fight, their
battle, their problems but this was my personal issue.
The counsellor helped me hit the reset button. And still
continues to do so to this day to help me.
And the biggest thing I've learnt is, never be afraid to ask
for help or talk to someone, one conversation is all it takes to start on the
road to better things.
I had counselling for around 6 months last year. It didn't
take me long to start feeling better and I was off the anti-depressants fairly
quickly and it was my own decision to come off them. I just didn't need them anymore
because counselling was giving me all the answers and release I needed to start
becoming a better happier me. A new and improved but the old happy me I once
was.
I can't say enough how important the counselling has been
for me. Im so happy I got help.
Please if you feel like you’re in this on your own, you’re
not there is people out there that can help you.
They helped me.
I spoke about CF and how I felt about it all and the
questions I had, the counsellor explained what I was doing going round in
circles and never being able to find the answers because I simply couldn't.
She helped me to see the problems, we then talked it through
and came up with a plan to talk about it regularly and get through it and in
time I would see what the problem was for myself and by talking about it I
would learn how and why it was happening.
I think it stemmed from my own determination, I’m hugely
independent. I try to do everything myself, I never ask for help and also part
of my job is problem solving and I was using my work ethic to try and problem
solve myself and I was complicating my own thoughts even more let alone solving
it all.
Through talking regularly I learnt to let people in and talk
to people and ask for help for answers if I felt I couldn't and that sometimes
you can't do everything yourself.
It most likely sounds simple don't overthink things but it
wasn't easy for me to see it like that, it took me months of talking to get
things out and start to see things straight.
Its funny how you can think your just having a simple
conversation with someone but that someone is making notes on everything I was
saying and then came up with Ideas on how to change. Simple but so affective
for me. I can't thank the CF team and my counsellor enough for helping me out
If you ever need help never be afraid to ask.
And how do I feel
now?
I feel like the old me from 10 years ago. I’m not
overthinking, I'm not feeling fear like I was and I'm happy with myself. I feel
like I have a purpose again and I have long term goals not just short term
fears like I did have before everything fell apart. Things just feel good right
now.
Im the happiest ive been in years and although im on my own
I don’t have the fear of being alone anymore I have the excitement of wondering
what I can do on my own and the adventures I can do whilst im still healthy
enough to do so.
Last year and the past 3 years no longer have a negative
effect on me. Im not scared of things like I was, I'm not scared of being
alone. Infact I'm happy with life as it is right now and I know if someone
doesn't want me for the person I am and the challenges I will face in the
future then who cares because I don't need them type of people in my life. I’m
a lot more carefree whilst realistic on what I need to do day to day and I'm
not fed up with CF and the things we have to do to stay healthy. I don't feel
like a burden I feel like I have a lot to offer still despite my health.
I’m no longer angry and my temper has disappeared. I’m laid
back and relaxed about things. I go out and have a laugh with mates instead of
getting drunk to be stupid and try and forget or hurt myself.
I’m able to deal with things in general better without
panicking, getting angry or complicating things.
I just feel so happy with everything and within myself. I
cry when I want instead of blocking things up because I know it’s not a bad
thing to get sad I just let my feelings out and I feel better after.
CF doesn't rule me negatively like it has the past 3 years
because of my declining health. I’m more acceptable but not complacent and I
have my fight back again. Fight to stay fit because I enjoy it rather than
being scared of things.
I just feel completely different but like the old me just
new and improved and I have a different way of seeing things more simply.
I don't know if words can really describe my happiness and
mood in words.
Things just have come together really nicely and I'm really
pleased with how my life feels now and I know I can cope much better than I
could all because I'm not afraid to talk now and ask for help.
That one conversation and asking for help was all it took.
And I'm now happy and focused on living for the right reasons
If theres one thing I have learnt its never too late to ask
for help and never be afraid to say you can’t cope. It is a big deal but by
taking that first step it will help you to find the help that you need and is
easily available if you just ask.
Talk to people, friends family loved ones or even your
doctor or CF team and ask for help if you need it. Don’t lose the will to fight
physically or mentally as help is always available.
I never thought Id find myself in the situation I was in but
I did and now im glad I got the help I was after instead of fighting battle on
my own that I would never have won if I didn’t find the answers from others
around me.
If there’s one thing I urge you all to think even if you don’t
have an illness and are having issues talk to someone, go see your doctor or
phone a helpline anonymously and talk about whatever is on your mind. One
conversation, one rant, one cry to a person who’s there to listen will be the
start to helping you get on your way to feeling better.
Thank You for reading.
