We go years and years, doctor after doctor, consultant after consulant never getting any real answers and only becoming more poorly.
You have family and friends becoming bored and fed up with your health slowly becoming worse and having no answers. How and why can you still be sick?
The thoughts of loved ones, the questions they ask and the phrases they say are not said in the aim to hurt or upset. They, like you don't understand what is going on and why.
They, feel frustration and anger often lashing out with hurtful words; snap out of it, what's wrong today, why now, what can't you do that, you look awful do you realise, if you just do this you will be fine, get yourself right.
These words and sentences though now we understand were said out of concern at the time they are bullets to the heart, you manifest over them for hours. Crying yourself to sleep over what has been said as you yourself don't have the answers or know what to do to make everything ok. Now you know you couldn't possibly make everything ok - your body is at war with itself and you are chronically unwell. Your illness is something you will have to work on, work with and deal with for the rest of your life. Not something you can 'snap out of' or sleep off. You didn't ask for these diseases and you are not to blame.
Even knowing the facts above the years of misdiagnosis and the comments made in that time, the endless hours of self-blame you tortured yourself with have taken their toll. That is natural. Nobody expects that something so life changing not to effect you and with that you have the years of being dismissed, ignored and blamed for your deteriorating health.
So how do I accept and heal my 'self-blame' mindset ontop of everything else?
Understand all the little treasures you get to feel and experience everyday. That you do deserve and should enjoy feeling and experiencing them.
Buy yourself a notepad that you use everyday to write 3 things you are grateful for in that day.
This is a really tough one. One I struggle with immensely. How can you love yourself when your body is at war with itself and the damage that is carried out daily slowly changes you and you feel almost a different person. You grieve the you, you used to be prior to this hell. So how can you love this new version. The version you, you hate and frankly don't really know.
You have to focus on the deeper beauty. We all get wrapped up in outter beauty- looks, skin colours, hair, bodies etc. Society and social media are to blame for surrounding us with images, articles, references and programmes focusing on this topic. We forget inner beauty, the deeper charms. Outter beauty fades, chronically ill or not we all lose our looks. Inner beauty is for life. You can't alter it, have plastic surgery on it or cover it up. It is the real you!
That inner beauty - nobody nor any disease can take from you! It also defeats time.
So this is what we must focus on.
What do you love that defines you!
- kind heart - a kind heart that has the ability to make everyone smile, brings joy and gives people kindness that they can never forget.
- determination - the drive to succeed in your goals & dreams. To never settle be a person to fight and keep fighting to succeed.
- brave - everyday you face your fears. Big or small ( going to a big event or simply being able to face one person ).
- positivity - being positive depsite being within a rather negative time.
- smile - your gift to smile. A smile can make anyone's day.
isn't someone who loves
their outter appearance, they often are the people whom are the most insecure
its about appreciating your inner soul, kindness and love. The traits
and passions that make you - you.
Allow yourself to have 'me' time;
We have spent years and years feeling guilty, punishing and blaming ourselves for the pain and suffering we feel. We haven't allowed ourselves the time to recover and re-charge because we have always been pushing ourselves to cover up the suffering and trying to be normal. Living in a state of denial. We can now see the above is emotionally and physically damaging. At the time though when you have no idea what is going on the bad habits of self-punishment become automatic. People expect more from you because you are deemed well enough so you expect more of yourself.
Now, we must except no we are not the same as a fully well individual. Therefore we can't nor should we expect to be able to do what they can. We must accept that we must pace and we do deserve to relax and chill out. We need to.
People will always be offering you a hand. Previously you may have declined, your stubborn heart telling you to 'get a grip' but now we must realise that help isn't a weak thing to ask for. It has many benefits. It will allow you to do more, save energy, relax and destress more and these are the positives we must focus on to remove the negative stigma about help out of our minds.
Explain & be more open;
Express your pain, suffering, treatments and day to day struggles. So people understand what you are really going through. When you put your brave face on, make up, hair done, your best outfit on and you go out smiling people don't see the crying in pain, sleepless nights, the crippling joint pain, the sensitivity to light that is causing it to be hard to concentrate, the brain fog, the struggling to get up from chairs etc.
They see a normal girl stood infront of them.
This is a subject I have found very hard. Nobody wants pity! I definitely don't and one of the strong reasons why ( even now because it's a tough habit to break ) I will paint on the brave face and draw on the false smile so people don't think I am weak, not coping with the pain and so I am not just defined by my ill-health.
A poorly person isn't a cool person.
Now my Mum inspires me to be more open, let down my guard and be realistic.
Many of you tell me how you appreciate me sharing the truth and being more open with you about the struggles I face. Which to, helps me keep being open and I appreciate your support!! Though it's still something I find incredibly hard.
Not only is this a skill to master to help heal myself but also it is something that I need to master in order to raise further awareness and help others.
That fact I must use to drive me.
Give and allow yourself time to cry and realise the pain and stress. It's not a weakness, we have to see it as a strength. That we can still engage with our emotions and that we can allow ourselves to flush out the negative emotions through tears.
Off-loading and often feeling better for it after.
This was a massive and still is, a huge problem and issue for me.
I would spend hours worrying about what others thought and were thinking about me.
Worrying about clothes, hiding my suffering that was painted on my face, being talkative and not boring etc.
That now I just focus on being comfortable, what clothes won't itch, what clothes will keep me warm over what I believe I should wear. I don't have the energy to worry about not having a full face of make up on ( I am not a make up person anyway ). People will have to accept me - for me. There is no point trying or being anyone or anything else.
I have never been false but I am very guilty of trying to hold on to the Sophie I felt I was before all of this and the Sophie that people enjoyed to be around.
Having a chronic illness or not however we all change and adapt that is life and natural.
I have to learn to embrace now. The people who matter will love me regardless.
It's not easy- you have gone through years of sadness and torture, that has come from neglect and been self-inflicted.
We find great comfort in a diagnosis but it's daunting to know you now begin the long walk down a new path. That the suffering won't disappear over night. A diagnosis - one word does not take anyway the pain you feel now or the tiredness years of pain you have experienced.
It's a brand new challenge to prepare for.
With this new challenge you must adapt further and come to terms with the new struggles that lay ahead.
We have fought for years so we know we are fighters and can take anything on.
It's a long process but we have to be our own hero's.
Soak up the amazing support that surrounds you and in time you will shine bright like a star once again.
'Everyone is broken, that is how the lights shines in.' - Ernst Hemingway.
Keep fighting my hero's you are doing amazing.