One of the burdens of an invisible illness is that it only affects you. The weight of the now and future of it all is heavy and all consuming but adjacent to you, sitting right next to you, is absolutely fine and dandy. For now, I can hide my condition and I choose to keep my diagnosis a secret for many reasons but as the years pass and the challenges keep coming, it does get harder to stop myself from blurting it all out in the heat of the moment. A bit like this;
“Look, I’m going blind! With each passing year my visual world gets smaller, my freedom and independence are slipping from my grasp and the unimaginable horror of one day knowing what and who I will no longer be able to see, makes me feel like I’m being buried alive! My anxiety is manifesting physically so I struggle daily just to feel some semblance of normal. Some days it’s barely enough to function. So back off! Back all the way off with your non issues. Keep walking with your tiny dramas. Jog on with your charmed life! You are beautifully clueless and that’s fine but please do it someplace else!”
I never say that but as bad as it sounds, I sometimes think it. Much like the cells in my retinas, my ability to relate to my peers and at times my family is dying. Don’t get me wrong, I don’t wish this on anyone and I don’t blame anyone either – there are just times when I feel adrift from ‘normal’ life and ‘regular’ people.
The concept of boundaries isn’t new and many people, especially those who are prioritising something in their life, are putting them in place. It’s not comfortable. At times it’s very hard, particularly when you are having to distance yourself from those who intentionally or even unintentionally make you feel bad about yourself.
But it is essential.
I have to cope with a lot and in order to continually do that, I need to put the odd shield up and walk confidently in the knowledge that saying no sometimes, is perfectly acceptable.
During half term the sun shone and people in their droves, were hopping on planes to jet off to somewhere sunny to shake off the stress of their day to day. Amen to that! Everyone needs a break. For me, it was that time again…it was optician time. My daughter and I headed for our check up. I only had one thought circling my mind.
“Please let her be okay. I don’t care what’s happening to me, just let her be okay”.
Despite the dread, I made it light and fun. We met up with my mum so she could take my girl for brunch after her test, so that she wouldn’t have to witness the kind of conversations I have to have thanks to Retinitis Pigmentosa (RP). She sat confidently on the seat and passed every test with ease. My optician leaned back, looked directly at me and said,
“She’s fine, absolutely no issues”.
We both knew the significance of that and after I ushered my daughter from the room, I waved them off and returned to the clinic and cried. My optician is wonderful and understands the weight of this disease. Remembering that I was once told I was fine, only to have that cruelly snatched away, never leaves me. I will never be carefree again. That part of my brain, my heart, my being – has gone.
My prescription had not changed much. We talked about managing bad days or in some instances, not managing them. He said it was completely normal to have off days, as pretending to be ok all the time is exhausting. We hugged and I left. As I walked along the high street, I composed myself ready for brunch. Every 18 months it’s the same ordeal but my shield is still intact.
Well sort of…
Mentally I’m stoic but physically I’m ticking and twitching all over, brushing it off while my daughter tries cherry coke for the first time. Thankfully, she doesn’t appear to be a fan. My “No fizzy drinks in the house” rule is fabulously uncontested. She never developed the taste for it. I have an entire conversation at the table with my mum without saying a word. Her granddaughter is fine and her daughter is…another 18 months along…
Work, school and life runs alongside all this with no gaps. Light fills my home, songs play all day on the radio. I still sing and dance around the house. My daughter joins in when she’s home. We even dug out the disco lights over the holidays, pulled down the shades and had a full on bop. The old me is still inside somewhere, she visits when she can but not like before.
I’m forever changed now and as I said previously, I will never be carefree again. This means my body is always under some form of stress. Light on some days, crushing on others. Each day is different. A roulette with no real win.
With a stressful few weeks approaching I’m considering extending my boundaries a little further out. Anxiety is part of my daily life and I have to ask myself,
“Why would you intentionally invite more in?”
Last month when my Father in law descended on us with his wife, brother and family I knew I had made another mistake. I find them very difficult to get on with but pull out all the stops to make them feel welcome regardless. I brought lots of mini desserts and drinks so they would have a selection to choose from. They spilled out into my garden to take photos. As I stood there watching the various pictures being taken, I would be lying if I said it didn’t sting a little, when I was left out of all of them. They wanted photos with my family, just not me. They have been like this for years, however being ostracized within the walls of your own home, cuts a little deeper.
I maintain this course for my daughter, so that she can have a relationship with her grandparents. Also because I know how much abuse I would get if I put the breaks on their visits. I think I’m doing the right thing but it’s a painful trade. Not only am I stirring up past childhood wounds but I am now giving myself fresh new ones to make peace with. With more of my husband’s family travelling over from Australia in a few weeks, I can’t help but feel a bit sick.
The old people-pleasing me would just keep going, diligently pushing through, afraid to say no. I would always give in to the larger personalities and louder voices that make up my husbands family but if I’m honest – I have nothing left. This may be perceived as weakness to them or an opportunity to project their opinions on to my life. The simple truth is, I just don’t want it anymore.
Time to test those extended boundaries.
Wish me luck.