Are you feeling better yet?

I had just completed what felt like a mini-marathon session of changing, feeding and burping my son. Both exhausted I was only too grateful when he was finally asleep on my chest. Reaching for my phone I read a text message that had come through ... "Are you feeling better yet?"

I am almost 2 months post Ritixubum treatment and I am feeling stronger. But am I 'better'? And how would I measure 'better'?

My Rare Bear and My Ritixubum

If you break your leg are you 'better' when the bone heals or when your back to your normal daily activities. If you get the flu are you 'better' when you don't need medication to fight the virus or when you stop sneezing? Most medical professionals follow tried and tested guidelines for the above. They give you 6 weeks for a bone to heal and 7 days to get over the flu. They then expect to see you doing things as you would or they asses for further complications and once again set similar follow-up times and goals.

If I think back to my pre-diagnosis days I could complete tasks without worry. I could run the 1500m, climb lions head or drive 2hours in traffic and still be able to walk UCT campus flat. If I measure myself against this, when will I be able to consider myself 'better'? Will I ever be 'better'? Or do I have to accept my new normal? What goal post do I set as my better?

After I was diagnosed I have had great times and really rough times. I've had times when I couldn't stand long enough to wash a load of dishes or even lift myself off the toilet. I have also had times when I could compete in dog agility competitions and carry a healthy baby boy to full term without any complications. But it seems like the dips are getting deeper and I never quite reach the same last 'better'. It's frustrating to always feel like my goal posts are changing or becoming unattainable.

Living with a chronic illness means that part of me has to accept that there may never be a 'better'. While remission is the aim of many of our MG warriors, we may never get there. I may live constantly with the need for help whether physically, mentally or emotionally. However, I was blessed with an optimistic streak which helps me to find the balance and the silver lining.

So what do I answer back? I have seen so many angry tweets and messages from other chronic illness sufferers when they are asked this. Responding out of frustration only isolates me further. I also don't want to be overly optimistic and fake how I feel. However,  if I see it as an opportunity I can help raise awareness.

So I take a deep breath and type the truth. That by Gods Grace I'm stronger than yesterday, but no I'm not better yet.