The Good… The Bad… and The Ugly

This post takes a look at the good, the bad and the ugly of living my life with EDS and CMT to date while navigaing my children through their journeys with invisible illness.

That you have to prove how bad everything is to get support.  You have to have countless meetings to get any provision in place at all and have reports produced describing your children at their worst.  The reports don’t talk about their beautiful smiles, how kind they are to others, that they have a wicked sense of humour.  Reading it black and white, just how ‘bad’ they are is soul destroying.

That pain is invisible.  Pain is invisible, you may see my pain if I am having a particularly bad day and I can’t hide it on my face (I’ve had years of practice!) or I have a joint strapped because it is sore after a dislocation or won’t stay in place.  You may know that my daughter is having a high pain day when she uses her wheelchair. Other that than you won’t see.  For me and the children, pain is an ever present feature in our lives to some degree.  People take for granted that we are OK because we don’t mope about but we have learnt to accept a level of pain as normal and live our lives to the full in spite of it.  We are good at that.  The invisibility highlights a real need education, particularly with those people working with my children, to help them to understand the very real impact that pain has emotionally and physically.

Ignorance.  People are ignorant, in so many ways.  Ignorant that illnesses can be invisible, ignorant to the facts, ignorant to think that I don’t know my children better than anyone else, ignorant to think that I will not fight for us.  I try not to focus on ignorance, I do not have the power to change peoples opinions nor the energy but I have been known to channel it and use it in more positive ways; education (both theirs and mine) and to increase understanding.

The system. In my experience the ‘systems’ aren’t always set up to help families.  I’m not talking about the people working on the ground within these services at school or in the hospital but the constraints and rules that they work within and how the different services integrate with each other.  Everything is difficult, needs chasing, fighting for, navigating.

School.  At times I have felt like I have been at the bottom of a very steep mountain, in flip flops, in the rain, with a very long climb to get to the top.  Right now I’m ascending steadily, I’ve changed my shoes and the sun peaking through the clouds.  I’m sure the weather will vary from time to time but I’ve packed all the appropriate clothing, I’m prepared.

Schools often struggle with children with invisible illness, when children look ‘OK’, particularly when it doesn’t affect their cognitive ability or immediately impact on their health (for example not giving insulin to a diabetic), rare disorders can be misunderstood, where do the children fit? Because of this families struggle, to communicate their children’s needs, to raise understanding, to know where to look to get the information about support or provision.  Too often parents do not know what is available within the constraints of the law.  Lots of things get in the way; the ever changing guidance, staff being up to date on the changes, communication, understanding, work load.  It saddens me that many many children will not be getting the full education that they are entitled to or will need to be home educated to balance their health and their education needs.

NHS.  The nature of the NHS means that with a multi systemic condition like EDS or when you have two or three rare conditions in the family then you will be seen in many many hospital departments, often in different hospitals. Communication between everyone is patchy at best.  Clinic letters don’t copy everyone in and if they do aren’t always read.  You have to have a handle on everything.   Be the captain of the ship.  In a family where many family members are affected you will have to skipper many vessels at the same time.

The sheer amount of appointments.  There are many many different appointments at different hospitals on different days.  With four of us being seen at at least 7 different hospitals, in many different departments within those hospitals managing this can become a full time job.

Balance.  Balancing good health – without obsessing about it…  Having a life – without overdoing it… (and for the children) A good education – whilst still ensuring that their health and life aren’t impacted on too much.  It’s a fine balance with many, many factors that can tip the scales in the wrong direction.

Talking about our children at their worst.  You have to be prepared to talk about your children at their worst. This is hard as a parent, you want to celebrate all of their strengths and tell everyone how brilliant they are but to get the correct medical and educational provision in place you have to remove your self emotionally and tell it how it is. Describe the bad days, the pain, fatigue, the falls, the dizziness, the brain fog as if you are talking about someone else child.  You have to advocate.  Then you go home and give them a big cuddle and be their mum again.
Being known as that parent. This comes with the territory.  I am most sure that my reputation proceeds me!  I am certainly on the ball now where my health and my children’s health is concerned.    In the past I have given too many people the benefit of the doubt and it didn’t work, it was my fault entirely I wasn’t assertive enough and in the long run the only people that suffered were my family. Now I am super clear what our needs are, what provision we need medically and my children need educationally and am more than willing to help in any way with education, training, physiotherapy or occupational therapy equipment etc…

Anything that goes wrong I follow up immediately and always say thank you when someone is doing their job well and working hard with my children.  I think that it is important to show gratitude.

Real friendships.  I don’t have the time or the energy for lots of friendships, nights out with people I don’t know well, I don’t socialise an awful lot.  However the friends that I have I value and love with all my heart, they know me warts and all and our relationships are based on far more than health.  They are true friends.

Calm under pressure.  I have a real ability to stay calm under pressure.  To assess a situation, decide what to do then act.  Afterwards I may fall apart but when I need to step up I do.

I don’t sweat the small stuff.  I think this comes from having a lot to deal with every day, my body simply can’t run on a high state of alert all of the time.  The little things in life don’t wind me up or get me down because I haven’t got the time or energy to worry about those sort of things.  I can appear to be very laid back.  I’m not at all, I’ve just learnt to prioritise what I worry about and not waste energy unnecessarily.

Family.  I have an amazing family who I love more than anything in the world, I have learnt to recognise and appreciate how fortunate I am and treasure them all.

Mindfulness.  I appreciate the time I have to walk in the park, smell the fresh air, watch the leaves change colour and the seasons change, to take the time to let my children’s smiles melt my heart.  It is important not to miss the little things.

Education.  You are never too old to learn new things!  I have learnt so much because of my health and about each condition that I have.  I can keep up with most physiotherapists my anatomy knowledge and talk medically in consultations with the doctors.  I have completed SEND law courses and have attended many conferences.   I have truly learnt, not just a FB education and in this process I have also discovered so much that I didn’t know about myself.  I am also learning new skills blogging, I had never done anything like this before, in fact a year ago I’d never sent a tweet!

Individual practitioners.  There are many individual teachers, teaching assistants, therapists, doctors, that in spite of navigating systems with us, (one that often just puts obstacles in the way) manage go the extra mile to make sure our journey is as straightforward as possible.  They listen, communicate, make that extra phone call at the end of a long day, remember to call us back with an update when they say they will, write fantastic reports.  Most of the time these people just believe that they are doing their jobs and that is what makes them special.I know.  My children are all affected differently with the symptoms of EDS, CMT and dysautonomia.  I have lived with all three of these conditions, undiagnosed, for the best part of my life but even though I had no name for the way I was feeling growing up it was real.    So for my children I just know.  I know how they are feeling.  I believe them.  I can see it in their eyes without grilling them or constantly having to talk about it.  I know how to make them feel a little better and I can be their advocate because I understand.

Sharing journey.  I have decided to share my journey with EDS and CMT.  To bare my soul to the world on FB, Twitter and on the blog.  It seems strange to most people to share the intimate details of your health but I struggled for so long coming to terms with what my illness meant for me that I feel that it is important to help others.  So far this has been a truly positive experience I have connected with and helped people from all over the world and the feed back from the people that read my posts is amazing and lifts my heart.  It is the big reason why I write.

Acceptance.  I accept who I am warts and all.  It has been a journey and a process that I have had to go through to get to where I am today.

Happiness.  As I approach my 40th birthday (I know, it’s crept up on me!) I can honestly say that I am happy, truly happy.  With who I am, the way I live my life and the people I choose to share it with.  What is your good, bad and ugly when managing things day to day?