My multiple sclerosis icks

What is an ick?

‍

Oxford Language Dictionary defines ick as; exclamation used to express disgust. Urban Dictionary defines ick as; Something someone does that is an instant turn-off for you, making you instantly hate the idea of being with them romantically.

‍

When you have Multiple Sclerosis it’s like you are kind of in a forever relationship you didn’t chose to be in. So, you can only imagine the amount of icks, and there is no way out. You can’t break up with MS.

‍

My MS Bestie

‍

One of the best things that has happened since my MS diagnosis nearly 3 years ago is that I’ve made so many connections with people all over the country living with MS. People I would have never met if it wasn’t for this awful disease.

‍

I found my MS bestie through Instagram, and we talk every day about our lovely chronic illness among many other things. It’s really special to have a connection with someone who understands what you’re going through on a daily basis and to be able to speak to them whenever you need that comfort.

‍

I had an appointment a few months ago with a registrar neurologist and when they came to get me from the waiting room she then proceeded to speed off into the room where they were based, I was very slow walking at this point (due to what MRI results have now revealed was a relapse) and they turned round and said, ‘why are you walking so slow?’  I’m sorry, why do you think I’m here to see you?? I currently can hardly feel or lift my legs!

‍

Immediately after the appointment I message my MS bestie ‘You know what’s an ick?’ and explain what had happened. The conversation then went into full ‘doctors icks’ back and forth we got off our chest what gives us the ick when we go for appointments.

‍

OMG when the doctor examines you and they have coffee breath!

OR when you explain all your symptoms and they say – have you been under a lot of stress lately?

When they ask if you’ve changed your diet recently

When they have a stripy shirt and clashing tie

When they have more than one of the buttons undone on their shirt

When they google your medication dose in front of you

When they have cold hands, and they have to touch your tummy!

‍

So, this blog is about ICKS we all have when living with MS or another chronic illness or disability. Something to give us all a giggle and get the little things we have to deal with off our chest.

‍

A space for spoonie icks

‍

When you have Multiple Sclerosis or are living with another disability or chronic illness there is an added layer of stress and worry in your life. Do I have enough meds? Where are my test results? I need time off work for this appointment. I need to save all my energy this week so I can see my friends at the weekend. What if I fall over? What if there are too many stairs when I go to this restaurant? The list goes on…

‍

Living with this causes anxiety and sometimes depression for people with MS. You can look at MS Instagram accounts, influencers, support groups to help. But where is the space for us to moan and complain about the ‘icks’ we have? I asked on social media for my spoonie friends to send me their biggest icks, so here are some of them. Funny and not so funny.

‍

‘Refilling my dossete box every week is my least favorite bit of chronic illness admin – ICK!’

‍

‘The NG tube coming back out (insert vomit emoji here) does that count??’

‍

‘I live with ME/CFS and my biggest ick is when I go to the GP (if I can get an appointment) any symptoms I describe is immediately fobbed off as ‘oh that’s just your ME’.’

‍

‘The shame in handing your groin swab back to the nurse.’

‍

‘I have had it a few times where I fall on the walking test and they say 'why did that happen?'...silly me.’

‍

When I look for support with my MS, I have a few close ‘chronically ill’ friends who I know I can moan, joke and laugh about it to. For me, my mum has always taught me ‘you have to laugh or you’ll cry’ and most of the time even though I cry (a lot) I find this is true. 

‍

I struggle to look at inspirational Instagram accounts filled with quotes saying ‘don’t give up’ or ‘MS warriors’ because the truth is sometimes we might always look brave to others but we don’t always feel it. It’s not a true reflection of what living with MS is like. I don’t want to be an inspiration or a hero sometimes a gal just wants to be heard!

‍

I don’t like to receive sympathy as I find it quite awkward but sometimes I really want to just have a bloody good moan. But where is the space within the community for us to do that? Sometimes a support group, but then you might get the ‘have you tried this’ or ‘I find this helps….’ When really you just want an ear and someone to say, ‘I’m sorry that sounds rubbish’.

‍

If you are anything like me you might struggle to moan because you don’t want sympathy and you are very hard on yourself and think you have to be strong and get through it. But it’s important to find space where you can feel comfortable to do it as having a moan really helps and it usually ends up in having a giggle! (even if you are laughing through salty tears).

‍

I have started a thread on shift.ms for a space for our icks and our moans without judgement so if you want to share your MS icks or have a moan or a giggle at everyone else’s icks. Please feel free to comment @Sarahemily.

‍