On this ANZAC day in Australia I sit and reflect on the sacrifices so many people have made in the name of war. I salute the veterans throughout the world, especially those close to my heart. But it also makes me reflective of the silent war people with CFS and pain fight daily. My own reflections on this last weekend are below:
The Silent War of CFS / ME & Electrosensitivity Pain
Despite being in almost constant pain on top of living with CFS / ME, I don’t want my loved ones to worry about me. So most of the time I put on a happy, smiley face and no-one would know the extent of the pain I’m in or how tired I am. But sometimes it gets so frustrating having people think I’m happy and healthy when inside my head I’m screaming in pain.
In trying to find this balance I tend to do my crying and “falling apart” in privacy. My daughter unfortunately bears the brunt of my frustration sometimes, but I mostly hide it from her too. It makes others feel so helpless when I am sick, tired or in pain and I am so over being the catalyst for my loved ones feeling helpless and hopeless. One may argue it’s their choice how they feel, but I know what a challenge it is to see someone you love suffering and being unable to help them. My first marriage was a casualty of this phenomenon. I don’t want any more casualties.
The Trap of Smiling Through The Pain
But the trap of putting on a cheery face despite pain and fatigue is that the people around you buy the story. The fact I use computers, watch TV, drive cars and send texts leads people around me to the false assumption that I no longer get severe headaches from these activities. I rarely complain about them these days. Largely I see little point in complaining as it makes the other person uncomfortable and me feel like a whinger. I assume the people around me know I still have the pain, but I don’t realise that in the absence of any complaints or physical signs of distress they often simply forget I’m not totally healthy or presume I have recovered.
And I guess most of the time I’m not “suffering” because suffering is a context, a frame of mind, and I don’t usually play the role of a “sufferer” or define myself in that way. But sometimes, like today, I can’t deny I am suffering due to the pain and fatigue.
The pain today has made it very difficult to enjoy a family celebration I was looking forward to. On top of that it has caused me to be forgetful, and have difficulty concentrating, which then has seen me do stupid things like drive across town to retrieve a bag I thought I had forgotten, only to find it had been in the car, unseen despite a number of searches, all the time. This is partly due to my lack of focus, which is a part of my habitual/genetic/who knows?! nature, but I can’t help thinking the pain distracts my concentration abilities.
So Tempting to Give In …
Today part of me wanted to curl up in a ball and just cry, and have my loving family wrap their arms around me as I’m sure they would have. I wanted to fall apart and feel safe to do so. I wanted loving arms around me telling me it would be OK. I’m so tired of being strong. But what’s my alternative?
I’ve seen the alternative. It’s called depression. Or at least in my case it was. When I let myself feel sorry for myself – quite legitimately I must add – and allow the barriers to fall down, eventually I go into full-on despair. Most of the time hope is a pipe-dream, but it gets us through. When I have let go of hope and given in to despair in the past I have fallen into a pit – a deep, dark pit of depression. I don’t want to go there again, so the “strong, smiley” facade is a better option.
Needs Must …
On Thursday I sat with a fellow Mum and discussed how myself and some other friends could support her through the nightmare of having lost her four-month-old baby son to Sudden Infant Death Syndrome (SIDS). We had cooked some meals for the next few days, but I was asking her opinion on the idea of us providing regular meals on a roster for a while. She was remarkable. She told me how incredibly grateful and overwhelmed she was with the support she was receiving, but she is also concerned that if she gets used to others making meals for herself, her husband and their four other children, when it eventually comes time for her to start making meals again she might not cope. She’s afraid of getting too far down that she can’t get up again.
Once I would not have understood this brave lady’s thinking and would have dismissed it as someone trying to be unnecessarily independent. But no. I understand her. It’s the feeling I have about collapsing in tears today at my family gathering. I have no doubt my beautiful family would have been nothing but supportive. They have been many times before. But if I let the walls downs and the tears out in front of people who will then want to take the burden off me and nurture me, I fear not being able to get up again.
In the past when I’ve allowed people to see me so weak and helpless they have then, in the future, looked at me with pity and treated me like a weakling. I don’t want that again. If they see me as strong they treat me as strong and I see me as strong. If they see me as weak, they treat me as weak and I see me as weak.
Strapping On The Internal Armor
As a mother and entrepreneur with CFS /ME I can’t afford to give in to the pain and pity or my daughter and business suffer. And I suffer.
If I fall apart then who will be there for my daughter? She needs me to be as consistent as humanly possible. That doesn’t mean never breaking down in tears, but it does mean not letting the tears take over. My love for my daughter is stronger than any pull for me to give in to the pain, grief, fatigue or whatever. That takes something. But I’m willing to generate that something in order to be the best Mum I can be.
When I generate myself this way I feel myself putting up an almost physical armor. You can’t see it, but the term “galvanizing myself” comes to mind as I feel a constriction in my torso like strapping on armor. It’s that “just get on with it”, bracing-myself-for-battle feeling that gets me through day-to-day when I’d much rather retreat to my bed or bath tub. The term “suck it up princess!” comes to mind too, as there’s always that sharp inhale of breath as I coach myself to soldier on (interesting how many war terms I use when describing this – armor, battle, soldier on!).
Build It And They Will Come …
What I need around me are people who expect more of me than I sometimes think I can manage. If people around me see me as fragile, delicate, vulnerable or weak then I will be tempted to step into that role. But if the people around me think I’m strong, independent and coping well, then that pulls me to step into that. That is how I create my own reality.
Sometimes the mismatch between the way I feel and way I portray I feel can cause me angst, but I know it’s worth it. If I have a lot of worried people around me they will be waiting for me to fall, but if they are confident in me and I cultivate their trust in my ability to handle my life in all its pain and pleasure, then they will be expecting me to win and so will I.
I’ve worked very hard to get to the point I’m at. I’ve fallen many times and pulled myself up. And if it means, to stay up, I have to suck it up and smile through the pain so that all the people around me think I’m full of energy, pain free and thrilled with my lot in life, then so be it. They say “fake it till you make it” right?!
How do you go with this battle/balance? Let me know in the comments section
Keep Smiling (my motto despite the challenges of it!!)