Dealing with disruption

One of the biggest factors, for me, in dealing with a chronic illness is the life disruption factor on a daily basis.

The pain, fatigue, self image issues, emotional rollercoaster and depression are all massive players in the life of an endo girl, but the very fact you can't PLAN anything without knowing full well that pain may be hideous that day is a very difficult one to deal with.

Over the years I have missed weddings, important birthdays of dear friends, parties, amazing gigs/events, and of course chunks of time with my precious daughters in recent times.
I have had to cancel work events, meetings, not attend conferences, seminars, and all sorts simply because I am in too much pain to do so. The way that endo affects my life on a personal and professional level is one I am just getting to grips with now, 16 years after it started so you know, these things take time.

I am learning to accept that my life needs to be designed around knowing that plans need to be flexible. Luckily, I have amazing friends who know that if I cancel last-minute it's because dealing with what we had planned is beyond my capabilities for that day. That's not to say I haven't upset people in the past by my non-attendance, and it's a very very difficult thing for me to judge, and one that is fraught with guilt - judging my own limits is very difficult and admitting defeat is even harder.

I am someone who pushes myself in life, strives to do stuff, learn, be, live, laugh, love. When endo takes over and the pain and associated tiredness means I cannot do my run for the day/see my friend/attend a meeting/ do anything other than sit in bed with painkillers, it's a very hard thing to give in to.

By "giving in" there is an associated undercurrent of failure.

The feeling of failure saps confidence. Failure chips away at self-esteem, at strength of character.

I am currently doing my best to go with the flow, and my partner and I have devised ways of making this much easier - remember, having endo and working for yourself is one thing, having endo and little girls to look after is another.
We have an honesty policy - if I say I need help ( and believe me, it has taken a LONG time for me to be able to ask for it), then we cut the need to apologise/explain/dither and just get straight to the practicalities. Booking extra hours at nursery, Miles going to work slightly later or working flexi hours so he can have the girls, calling family so they can come and help.

The entourage of help that's needed for me to go back to bed and deal with pain has so often made me feel guilty, worthless, weak.

The fact is, endometriosis pain is a reality. A regular, irregularly patterned, reality. I know it will come so trying to pretend it won't is futile; I know it will hurt so being constantly disappointed is futile; I know it will pass sooner if I rest and don't stress about it, so stressing is futile.

Essentially, as someone who likes to be in control of my life, I have had to let go of the reigns here. I can only control how I react to the effects it has on my life, and since stress makes the symptoms worse I am dong myself a disservice by making my acceptance of it difficult.

I often worried in the past about how my need to change plans affected people's perceptions of me socially and professionally. This is a tricky one to deal with as no one wants to look unprofessional, but equally meeting a new client/attending a meeting when I am throwing up with pain isn't an option either.

For me, I find honesty is the best policy. Obviously, this blog is out there for the world to see so everyone knows I am "flawed". I am open and out there about not being superwoman.
I am honest with business associates and clients so they know the reason behind me being unable to answer a call or meet up at that point in time. Where possible I have a plan b, so someone who can be my dep and able to go for me is something really useful.

I often now hold meetings via Skype which saves a lot of travel time and worry about coping with pain for a while day to get somewhere - I can deal with an hours "face to face" chat a lot easier. Technology is a lifesaver.

In most cases when I am honest, people know someone who has endo. After all, 1 in 1 women suffer so it's not as rare as you might think. Every time I bare my soul about it I am raising awareness, albeit at the cost of my professional image maybe.

The thing is, in many ways endometriosis is a disability. It disables my life. Not always, not daily on a horrendous scale but it is there. And it has to be recognised and dealt with. Hiding it leads to mental anguish, more pain and stress, and a life that is not living within my capabilities.

Judging how far to push myself is always the thing I struggle with. Can I run today? SHOULD I run today, will I feel better afterwards or worse? Do I need to rest or am I being lazy? Its's a constant act of juggling the scales, but one thing is certain, once I have overdone things, as I often do - I certainly know about it and have to take to my sickbed/sofa for longer. Not a great choice.
So there we have it. If I have cancelled on you, now you know why. If I cancel on you in the future, now you know why.
For me, it's all part of living with endo, and learning to be strong in my self belief. I need not apologise. It's just who I am.

DD xx