At the beginning of Lockdown in March, once my sheer horror and fear of it had subsided somewhat, I was quite hopeful, positive even.
We were all in this together and the whole world was suddenly available at the touch of a laptop key. Everyone I had ever tried to explain the feeling of being ‘stuck at home’ to – due to MS and the treatment I had for it – now knew what I was talking about.
Excellent, so far so good. Progress?
And so it continued – local groups sprang up, offering much-needed help and support. The TV, internet and newspapers assured us we were Never Alone and I truly hoped disability rights and awareness would finally be advanced by decades, now we were all in the same boat, unable to access even the most basic services.
Now we are in June though, and I’m increasingly anxious. I’ve been fortunate to only work with one other person in a wide open space throughout this time, as well as having my University student son move back home for the duration.
However, for the last two weeks there has been a subtle but noticeable shift.
Unable to access supermarket shopping slots when I needed them the most, I’ve been queuing, waiting and working up the courage to face my MS nemesis. Before the pandemic, shopping in real life was a total no-go area for me, but now it is a necessity.
The first problem are the queues; I simply cannot queue without a walking stick or leaning on something. The second problem is the weather. I can’t deal with the heat, or Uhthoff phenomenon. Once in the shop, I’m pushed forward by the people behind me who probably wonder why I can’t decide what to buy. They jingle their coins in their pockets, sigh loudly and shift from foot to foot in an exaggerated fashion. Or they just brush past me, muttering vile insults under their breath.
My hands tremble, I lose my balance (impossible to use a walking stick and carry a basket simultaneously). Once at the queue for the checkout, it’s the same. We are of course rushed through after waiting in line and I drop most of the shopping I’m buying. I try to explain, but they’re busy and the queue behind me is growing as is the animosity.
Two weeks ago I had to ‘prove’ my disability to a man outside a supermarket, who was in charge of the queue. He had a high-vis jacket and a fat book of rules. After a loud, public conversation, and showing my MS Society card which states I have MS, plus my son’s NHS staff card, I was grudgingly allowed into the shop. The same thing happened today – I was harangued by an elderly gentleman who wondered why I was being too slow through the shop’s newly-introduced one-way system.
I can’t do it.
In many ways, I feel more disabled now than ever and I wonder why we are not being heard in amongst the conflicted messages from government . Casting my mind back to my diagnosis in 2012, I had the same fears, and without knowing it, I could kind of blend in, just about. Now, that’s impossible. My anxiety levels are rising and everyday things I once took for granted, with a huge MS exception, are almost out my reach.
So I stay in my house and study and chat to my son. My boss picks me up and takes me home again. My world is very small, despite my large Zoom window.
Once it was my MS treatment which shoved me onto the sofa, now it’s the world.
So sorry to hear about your problems. No way should you be like that! Is it not possible for you to get a priority slot at one of your local supermarkets. We did, just by registering in gov.uk as being extremely vunerable and sending an email to the supermarket. Also there are many local groups which have been set up in all areas where people are only too willing to help out by going shopping and collecting medicines. Another option, get a mobility scooter, my husband would be lost without his! Take care and stay hopeful, I just hope this crisis will pass soon!
My sister has been really kind, dropping me over food every week that I can just pop in the microwave. I just wanted to still remain a little independent, but the whole shopping situation is getting worse, not better in some ways. I think before we all felt we were in it together but now people are bored of the rigmarole! X
Even with lockdown no one can still understand what isolation means for people who are disabled and are housebound, virus or not.
For ‘normal’ people lockdown will be a thing of the past, an inconvenience to their way of life. I’m not talking of the unfortunate people who, due to the pandemic, have lost their jobs, (that must be soul destroying), but of people who have been working at home or furloughed and still have their jobs.
When it is over, hopefully soon, people will forget how bored and ‘stir crazy’ they became and pick-up where they left off. They won’t give any more thought to disabled people than they did before. Nothing has changed!
I completely agree – I really did think something positive could come out of this pandemic, but as time goes on, I think you’re right, people will forget what it was like to have to stay at home. X
Hope you’re well Barbara we now have a weekly Asda shop, the only supermarket who gave me a slot as I’ve been effectively shielding but not required because Rebif isn’t an immunosuppressant, I’ve been out the house x3 in 13 weeks, I’m sorry you had such crap to prove your disability
Same here! I also had emails from most of the supermarkets saying I was priority, but it was extremely difficult to access the slots, like so many other people. X
The lack of independence is really robbing me of my self confidence as time goes on. I cant return to my job in a school even with a specific risk assessment as MS nurse has said not to use public transport at all right now and I use 4 buses a day for work . Bladder issues mean my anxiety ,about going shopping, is sky high when factoring in the queues . I walk the dog around nearby and that is it . I know I’m in a better position than many but I am finding myself sinking emotionally! Your post made me feel like someone else understands
But that made me sad that others are feeling like this .
It’s so important we share how we feel during this time – I’ve been bottling up my anxiety re. MS and lockdown and it felt really good to write about it and also to talk about it with my boss and son. They’ve both been so lovely. But it’s definitely affecting my confidence in being out and about and my independence. And as for public loos!!! It makes me mad. Surely they can be re-opened with an attendant in place?
I really hope you’re doing as well as can be expected during this weird, worrying time. X
all rings true Barbara .. and this backs up your experiences https://www.disabilitynewsservice.com/coronavirus-disabled-people-have-been-excluded-and-marginalised-says-report/?fbclid=IwAR1BmiFcOD6NHYQsTkYK4wNSGEgmZ2z5-gZX3Xcj25c8dXPcyo9wZSApeBs
This is a great article, thank you so much for sharing! X