So…… my plan to get back to blogging regularly back fired. My
last blog was posted just before my 30th birthday. Full of anxiety for
what the year had in store. Many had told me, relax, life begins at 30. Fuck me
were they wrong/ right. This year has been a tough one. Moving back in with my
mum. Sharing the same room and bed. I lost a very special person to me and then
my business partner. Got super busy with work and had lots of personal stress
and pain to deal with. I had hoped by now I could report some calmness. But
that is yet to come.
It is a Saturday and I have just finished work. I had two
days off for Christmas and then client Christmas parties and hospital
appointments. I am a little panicked about money, so I have been kicking myself
for it ever since. I am currently setting up a new business and had hoped that
would be ready to launch at end of December. But like most things this year, it
wasn’t to be. So, in that spirit - goodbye and good riddance to a frustrating
and tough 2018 and hello to 2019! Clean, fresh new year, with good people, good
vibes and positive moves.
In October I posted up on my social media about the key questions,
concerns and lessons learned from living with chronic pain and chronic fatigue.
I was overwhelmed by the response. I had some great conversations with amazing
people.
Here are a few of the
responses:
@sweptaway91 – Frustrations - not being able to do all the
things I have planned (and never knowing how I will feel tomorrow and how much
will I be able to do). But lesson learned - I started to value my time and set
boundaries
@allyoops541 - I'd like society to try and understand that
we aren't ill on purpose and we don't wallow in it or enjoy feeling the way we
do😊
@nicbunce - That you can't let pain stop you from doing what
you want to do. Find a way to endure and persevere, and live your best life
@myfibrohome - As hard as it is you have to get on with it.
When you stop and give in to the pain it wins. This can be mega hard in a lot
of situations, but you have to grieve the things you can no longer do and
accept the pain is part of you and it's a new chapter in your life. Acceptance
is massive and took me years. Things will get better, but you have to work for
them and every day remind yourself of something positive that you did or
achieved. Cling onto those positive moments and accomplishments as they will
get you through on the darkest days. Xx
@lizdelaney - It’s been a roller coaster for me for 4.5
years. Lost a great job working for Apple, hid in my room for basically two
years in pain, and have had a tough time dealing with the withdrawal from
family and friends... life in general... as I protect myself from sound now (my
big trigger for ATN). I don’t take pain meds as I have a huge fear of addiction
and increased pain levels. I started Aimovig and it’s helping I think in case
anyone is looking around for ideas. Am cautiously optimistic!! Not a drug. :) I
am learning to ask for help and advocate/take care of myself better finally.
One of the blogs I have often sat and thought about writing
was how pain changed me as a person. It was a reoccurring theme for a lot of
pain sufferers. We lose so much to pain, but we also gain so much knowledge,
insight and depth. For someone who’s worst day is having a cold or a toothache,
you will never understand. But for those who live with this every day I know
you know what I am talking about. One day you thought your life was mapped out
and all you had to do was focus and work hard to get there. Then overnight,
things completely changed.
Trust
issues
One of the biggest issues that I have discovered with pain,
is I now have serious trust issues. This is not a direct result of pain. But
what pain has done to my relationships. I literally lost everyone close to me
within 2 years of my pain and operations. My partner, my family, my friends. I
lost it all. Now I just don’t let people get close to me.
Lack of close
relationships
Pain has made me withdraw massively. I used to be an ENFJ,
but I am now firmly an INFJ. I just cannot make connections easily. I panic
about what people will think when they find out about my illnesses and pain.
How will they react or judge me? Will they believe me? Will they think less of
me as a business person, a girlfriend or a friend. Pain has made me scared of
the world and scared of people. People don’t mean to be unkind or unthoughtful.
They just don’t understand.
Loneliness
This leads into loneliness. If you never let anyone in, you
never have anyone around. I have a very small group of people around me (3). At
times it can feel really lonely. When I feel like this, I usually try to
meditate, watch an inspiring documentary or speak with my group of chronic pain
and fatigue sufferers online.
Anxiety
I started to become agoraphobic a long time before my pain
and operations. I was attacked at 17 on a bus and never really dealt with the
PSTD symptoms from then. But after my operations and the mobility issues I physically
couldn’t go out and going out was a real undertaking. I became so anxious that
it was just easier and safer to stay in than it was to try and face the world
and all the horrible things that could happen. I panicked that all of my hard
work I put into recovery could all be undone by someone else. I could be beaten
up, I could be run over, I could fall over and bash my head on the pavement.
Low Self
Esteem
Living with pain and fatigue everyday is exhausting. Coupled
with skin problems, weight problems and lack of happy hormones it is hard to
look in the mirror and say “Stef I love you, you are beautiful and I am proud
of you”. I don’t believe any of that. And unfortunately, 2 years of CBT have
done little to improve that. On a work’s Christmas party last week I was told
by no less than 8 people in one day I was a beautiful and talented woman. 2
random people approached me on 2 separate occasions to tell me that I was cute and
I needed to be more confident and believe in myself. Despite all of that, the
little voice in my head just said; “Stef they are drunk and lying”. But the
reality is, they had no reason to come up to me and tell me that, other than
wanting to. One of them was even with his wife at the time.
This is definitely something I know is my biggest barrier.
More so than the pain and physical limitations. Confidence is so important!! It
makes us feel better about ourselves. And when we do, we usually find our pain
reduces.
Anger &
Jealousy
I was never an angry or jealous person before pain. I would
say this only capitalises 10% of my time. But that is still a huge part of my
life. I often feel angry and jealous when I am suffering my worst days. Social
media doesn’t help. Seeing all of these so-called perfect celebs being paid to
post a picture and endorse a product while I work from home struggling in pain
every day - trying just to get through the day and do my clients proud. I look
at all of my old school friends who are married with children, going on holiday
and spending time with their families and I think why couldn’t that be me? Life
had something different planned for me, that’s why!
So, pain hasn’t changed me all for the bad. There are some
really lovely things pain has given me:
Compassion
Pain has definitely made me more compassionate. Before chronic
illness, my idea of helping people was charity - doing a fundraiser or giving
money. Now I know the best use of my time and money is by actually helping
people and being there for them. There are so many other people out there that
have it 100x worse than me. I am one of the lucky ones. I see how they struggle,
but also see their courage and truth. Since the pain, I find it easier to
imagine myself in someone else’s shoes. Think about where they are coming from.
What made them behave that way. What is the real reason for their actions? It
has allowed me to use that skill to help my business clients and my blog readers.
It has also helped in my personal relationships too.
Honesty
Chronic pain and fatigue have made me more of an authentic
and honest person. While I hide some of my illness to certain people, I am more
honest and open with people close to me. No one likes having those awkward or
hard conversations, but I will, and I do. If I am pissed off, in pain, hurt, upset.
I let people know.
Makes us
stop
One of the themes you will see time and time again is, pain
makes you stop. Many of us were working stupidly long hours, looking after
family and/ or friends, we were maybe studying and dealing with a bunch of other
stuff we shouldn’t have. The burden was firmly on our shoulders. Then one day
your body says…. “no more” and you come to a resounding halt. Life stops for a
while. All those negative and dangerous things you were doing to yourself. That
dream job you were busting your ass off for… that relationship you were fighting
for. All of a sudden, none of that matters because here comes your body to stop
you! It’s tragic I know. And you must morn for the life you lost. You’ll probably
lose several lives during your time with chronic illness. But the positive is,
it wasn’t the life that was meant for you. Those things were not for you. Not
now anyway. If they were, it wouldn’t have been so hard.
Chronic illness, pain, fatigue and anything like that is a
sign something isn’t right. Sometimes you need to stop and take a look around. Revaluate
your life!
Gets rid of
the deadwood & helps us to appreciate
I am already conscious this blog has been going on for a
while, so the last point on my change list is…getting rid of the wrong type of
people, jobs, experiences etc and appreciating what you have left.
Much like the point above. Illness makes you stop and
evaluate your life and what you are doing. It also helps to clearly highlight
the good and bad in your life. Now more than ever you will be able to see how badly
people have been treating you. How they use you. Equally you will realise how
amazing others are. You’ll see how that 60 hour a week job was filling you with
dread every morning and how your true passion and skill can be found elsewhere.
In today’s society we spend so much time thinking about
material things. We must own a house, have an iPhone, drive the nicest car. We
work our arses off… for what? Something that gives us a small amount of
pleasure. When in reality, sitting at home cuddled up on the sofa with our
loved one or our pet, drinking a cup of tea is more than we will ever need. It’s
the little things in life that make it special. It is about happiness and spending
time with the people you love.
Summary
Often it is easy to discount and overlook where we have come
and how pain has shaped our lives for the better. Yeah, it’s all pretty shit!
But without this pain we wouldn’t be who we are today. In my darkest days I
feel alone, jealous and angry. In my best days I feel grateful, strong and
empowered. How can pain be so debilitating, but yet so liberating?
When discussing this subject with a cancer sufferer, we
talked about how sometimes we feel the best thing is to put up a strong front
and fight our body. We feel like it has betrayed us and is punishing us. Other
times we have to stop, we have to rest, and we have to nurture and take care of
ourselves. Just like we would an elderly relative or a sickly child. We just
want to feel comfortable, to eat well, drink fresh water, meditate, listen to
some music or watch crap tv. There always comes a point where we can’t keep
fighting our bodies, but just have to relax. Ease into the pain and let the
ship ride the waves naturally.
In a letter I wrote to my friend titled “a letter to 53-year-old
you”, I talked about how we discount what we have now in search for this future
happiness, future love, future fulfilment, this future miracle or moment when
everything makes sense and the lightbulb switches on. I am a firm believer that
everything happens for a reason. But what if we just took a moment right now to
be thankful? To feel free? To say ok body, I am listening to you and I am here
with you in this moment. We can do this together and I trust you.
