I have wanted to write this for a long time. I simply have lacked the words to express my journey with my invisible illnesses and mobility issues. You know I write better than I speak.
Since I was first diagnosed, I have been grappling with the changes that needed to be made and the hard decisions. With additional lupus diagnosis, the possibility dying sometimes crosses my mind; every blood test or every flare causes anxiety. I have appreciated your advice, what I needed from you was to listen, not speak christianese, but allow me to do me. I am not your friend or someone you know that got better! Healing is not linear just as we are not the same, we are individuals right down to sub-atomical level. One of the hardest things to face is that you have limitations!
As time has continued, I have been quieter. I have learnt to be more independent with my emotional wellbeing. It reminds me of “far from the maddening crowd”. The world is too noisy!. I want you in my life, and I am your greatest cheer leader, even as I reinvent myself. Many of us spend more time at home dependant on the effects of the disability. If we are on the high scale of pain, we give up careers. Every day is hard, we wake up with pains you cannot imagine even with the best mattresses, but our brains have experienced trauma and sending wrong messages.
As COVID 19 set in, I shrugged my shoulders because shielding is a way for life for many. Part of managing this life comes from being sensitive to noise. I have brain fog and sometimes struggle to remember things even in conversations. It leaves me feeling useless and anxious. I have to choose when to return calls as conversations often drain me. Our joints, muscles and different side effects from our medication mean we are chasing the Consultant Rheumatologist and the GP who often are dismissive of us.
Going out is like planning a war. Do you have all your medication? Did you rest yesterday? Have you facilitated time to rest tomorrow? Where is this place is the music loud? How many people will be there? How long will I be there? Then we say No we cannot make it, we have feelings of shame and guilt.
As diaspora I have no family, who do you turn to? Friends move on with their lives and families! Even with some sort of support you are along in a flat trying to find a way to move through the diagnosis. We have done EMDR therapy, CBT, Counselling, and any other therapy which we hope will help us. The NHS has had austerity cuts and sometimes the doctors have gone.
We need to withdraw; it has nothing to do with you. We need time to breathe, to rest and regroup for another day. We want to be with you, but the journey is ours alone. Thank you for the extension of help you give when you can, but the greatest gift you can give me listen, to me and lets meet over coffee or a movie, you give me reason to leave home. On a funny note, I work better in the evenings, so I am up at 4 and work until late in the night because my body is okay then. There is hope.
I am lonely but I am not alone as I have a great family. I love my introversion as you known I am intense. I truly hope you can embrace the new me as the old Nimo has gone. Don’t look for her.