By Dr, Sally Shaw
Ever been called a 'control freak'? Have you been annoyed by that label, because if people just understood that your way was in fact, the best way, the world would run a lot more smoothly?
It's just that you like to know the plan. You like to be able to anticipate three steps ahead, and have already figured out a plan B, just in case. And potentially a Plan C. Ok, and maybe a D. Thinking ahead to possible obstacles, and accommodating them, means that you have a firm sense that whatever comes your way will be fine, it will be prepared for, and indeed, overcome with ease. Sure, they can label it 'control'; we might refer to it as 'prepared', 'thought through', or dare I say '#winning'. You might be quietly confident knowing you have a good grasp of what's ahead, because you like a plan, and you make sure you stick to it.
Nothing like a diagnosis of Multiple Sclerosis to rip that sense of control right out from under you. Don't get me started on the impossibility of Plan B and C at this point. You can't even structure a solid Plan A right now, given the neurologist can't give you a satisfactory answer to 'What does this diagnosis mean for me next month, next year, or a decade from now?'. As you are not sure how MS will affect you yet, you are hardly able to scope out a solid strategic plan moving forward. Where are the goal posts? And indeed, how are you meant to cope with, and plan for, the fact that they don't just change position once, they seem to be constantly moving?
Very quickly MS can feel like it's taking your control away. Not just control of physical factors like moving an arm or leg, but control over invisible components like energy levels, ability to work the hours you want to, levels of concentration, and even your motivation to want to do things. It can be difficult to name. It can be really difficult to explain to others (you do, after all, look so good). But this lack of control feels so foreign to you because it challenges your self image. You're not used to being this person. Some will try desperately to control the things they cannot control (I don't need a walking stick), while others will give up and fall into the trap of why bother? (exercise isn't going to cure it). Truth be known, you can still be a control freak... You just have to pick your battles and then by all means you should go hard!
The starting point? My advice is to identify and examine all the bits you 'want' to control (psychologists can be a great help here!) and then determine and focus in on the areas of life you 'can' control.
Knowledge is Power
Adherence to health promotion behaviours like getting enough sleep, stopping smoking, increasing exercise, eating well, taking the right medication for you, and reducing stress levels, are really important considerations when living with a chronic disease. However, taken all together, thinking about making all these changes at once can be a little overwhelming.
Arguably, the easiest place to start is accessing the right information, and becoming better informed. Ever heard of the saying 'Knowledge is power'? With knowledge, comes a sense of control that you are doing all you can, that you are making the right decisions, formed upon sound evidence-based information.
It makes sense that people living with MS who are informed about their disease are more likely to make educated decisions and adhere to treatment. Having a greater understanding of information relating to your health increases the chance of better health outcomes, as you are more likely to work productively with your health care professionals in a team approach, choosing the best options for you, knowing what to expect, managing side effects, adhering to health promoting activities, and keeping communication lines open.
I recently worked with a client who had just seen her neurologist to discuss options regarding treatment following a sustained change in her symptoms. When she raised a particular treatment that she had heard of, he told her that she had 'missed the boat' on that one. She said to me 'I didn't know about the boat. I didn't know I could have got on the boat, let alone that it was leaving at a specified time. If I had have known about the boat, I would have loved the option to have considered getting on it'.
Can you imagine how disempowering that conversation with the neurologist made her feel? I feel like I've 'missed the boat' if the Myer stocktake sale ends before I could get there... Not sure I would use the same term to let a patient know they no longer have the option to access treatment now; treatment that could have prevented further disability if they had have accessed it earlier. But I digress...
Knowledge is power. People with MS need to stay ahead of the game. They need to be strategic, they need to know what's going on, they need to surround themselves with experts who they can trust, ask them educated questions, and they need to expect informed and expert opinion on which to base their decisions. Knowledge is often the key to feeling as though we have control in whatever situation presents. So in terms of harnessing your inner control freak...? Do it. Build the knowledge so you have the power to make the best decisions for you.