Finding Your Personal Pathway Forward - there is a life post diagnosis (you will find it and it will find you)

After being diagnosed with SS it is difficult to believe that you will find acceptance of your condition.  You will also find your own pathway forward and a way to navigate the journey ahead.  For most of us processing the grief at the loss of our old life, health, career, financial security and family/friend interaction is immense and takes some time (even years) to adjust to.  In fact this is an ongoing process and we can revisit those feelings and grief from time to time.  It most painful grief does have its own timeframe as you adjust to your new normal.

It is common to shed friends very quickly as some people do not have the capacity to deal with someone who is unwell and who become a person they don't recognise.  Amazingly as you find your own pathway forward and become comfortable with your journey you will find there are many awesome people out there (you are one) who are also going on this journey.  As the 'old' friends leave, these new supportive people come into your life.  Believe!! This does happen.

Your life has been turned upside down.  What to do - how best do I manage this.  These are the most common questions I have been asked and also asked of myself. It is a bewildering time and sometimes brutual when you are dealing with (sometimes) abrupt medical practitioners when you are emotionally fragile.

You can help yourself by becoming familiar with the medical terminology surrounding your condition, by building relationships with your medical team (who are now part of your A Team) and focusing on one day at a time (living in the moment).  Your aim is to be an ACTIVE participant in your health journey.

For all of us SS people, our carers, family and friends this is an unfolding process and how we deal with this is the one thing we can control during our health journey.  We have stared down the pathway to our new normal.  I life the following quote (but am unable to attribute it back to the author)

You will travel through the land of rejection and you will find your home but it wont be where you left it
[anon]

I have been lucky in finding some amazing people through the local ME/CFS support group in my area.  It took me nearly a year to find these people but I kept looking and kept knocking on doors to see what would unfold - I really do believe that the right people come in around you when life becomes difficult.  So I encourage you to keep looking out for your 'amazing ones' - they are there.  I call our group the 'tired tarts' because we all suffer from extreme chronic fatigue  although we have different conditions.

So my fabulous ones, keep looking, keep looking after yourself, couch surf, bank that energy and spend it wisely and more importantly live for the day and moment.

I wish you all well, you amazing people.  Go gently,  Sandra xx