The World of Now: Health and safety in a time of shielding

The World of Now: Health and safety in a time of shielding

How are you?  I’m fine.  Am I really?
I don’t know.  
I’m scared.  I’m calm.  
I’m strong. I’m vulnerable.  
I’m positive. I’m inert.  
I’m mindful. I’m distracted. 
I’m relaxed. I’m watchful. 
I’m lucky, blessed, privileged, loved, supported.
I work. I walk. I talk. I eat. I try not to drink.
Nature, family, chocolate bring joy; dogs uncomplicated physical contact. 
I enjoy my small world but yearn for its expansion.
But I deny myself thoughts of the bigger world, the future world, the spontaneous world, the unlocked world.   
Because when will the world be a place of safety?  
Where will that place be? 
How even will this new world be? 
Everyone is uncertain. Waiting for instructions.  
But instructions don’t help if you’re vulnerable. 
You can go out, but will you?
Your Health and your Safety are in your own hands. 
Your future a series of personal micro-decisions.
Risks assessed and managed with every action, every interaction, every gate post touched, every parcel delivered, every stranger approaching, every thought of gathering again.  
So, unanchored, indecisive, uncertain, distanced, we focus only on the Here and the Now.  
With no safety in numbers for the vulnerable, no net to catch those around us keeping us safe, no blanket to envelope us, no pair of pristinely clean hands to help us put safety first, can we allow ourselves to look to the future?
We must pass through an uneven world of the safe and the shielded; safe spaces redefined.  
And then we will return to healthy spaces, life filled with hugs and happiness, friends and futures, uncomplicated chance meetings.  
We will be healthy, happy and safe.  
This Will End. 

I probably had my first episode when I was 21 (1984!) - odd tingling in my right hand, then nothing until an episode of swallowing difficulties in 2000,  Investigations revealed nothing definitive though MS was mentioned, skirted around and dismissed.  

I was finally diagnosed in 2005 (aged 42) after a period of altered sensations starting at my toes and creeping up my body culminating is the familiar MS hug.   I saw my GP who arranged a scan but was relatively unconcerned putting my symptoms down to a recent holiday in the sun.  She was happy for me running a competitive 5K as planned that weekend. During that run - in July! - the altered sensations turned to tingling and the tingling turned to numbness. WHAT WAS HAPPENING?  By the time I approached the end of the race I could not feel anything from my chest downwards.  I was terrified and literally running scared.  

Since then I have been really lucky; you would not be able to tell I have any neurological impairment at all.  I have symptoms which I kept to myself (including but not limited to mild cognitive and mood issues).  In 2013 I gave up my job to become self-employed.  I wanted a less stressful time and I also began disease modifying treatment from Beta interferon injections (causing major depression and suicidal episodes), through Tecfidera to my current Fingolid/Gilenya.  As many of you will know Fingolimod works by 'trapping' lymphocytes in glands to stop them circulating in your blood stream and prevent them from crossing the blood brain barrier.  Good for MS prevention, bad for fighting a virulent virus! I asked my MS team if I should stop the DMD to 'release' the white blood cells into the blood steam to enable protection.  Apparently not.  If I do I risk 'rebound relapse'.  

So here I am, in lockdown.  I am isolating in the West Country, with a garden, I'm living here with my husband who has become my hunter-gatherer. And I am working from home. So again I am very lucky.  

My poem arose from my daily dog walks, where I arrange my thoughts.  I began reflecting on whether I felt safe, and well. The anxieties I express in the poem focus on uncertainty and doubt, on the constant what-ifs and lack of certainty.  But hey - what's new MSers?! As clare80 says in a recent post on ShiftMS  - though its tough, much of what we are dealing with is familiar (though from a different source).  So as Clare80 says - We've Got This!!