As I’ve waited, my mobility has got worse
The last year with the pandemic has been a hard one especially when dealing with MS. All my care changed drastically. No longer did I have any in-person appointments - people only agreed to see you if they deemed it an absolute emergency.
My mobility has changed noticeably. My left foot drags behind me, constantly feeling numb. There’s the sensation of pins and needles.
My balance is off. I keep falling over. I’m willing my legs – I’ll be walking and my left leg’s not coming with me so I’m like: ‘come on left leg’.
It’s hard to get appointments with my MS team
I’ve spoken to my neurologist twice. There’s a two hour window where they can call. You sit there waiting for the call – and there’s a panic, what if I go to the toilet and miss the phone? They’re not going to call back.
And when you do speak it’s a brief five minute chat. How much can you fit in within five minutes? How much do you even remember when appointment time comes?
It’s the same with the MS nurses. They’re lovely – indeed sometimes brilliant – but I felt more connected with them before the pandemic. Now it feels like there’s a wall between us.
If I phone them I have to call more than once. You speak to the secretary who asks why you’re calling. You’ve got to explain yourself and make sure your reason is good enough to even be put through to your MS nurse. And if they don’t see it as a good enough reason then you’re not a priority.
Getting the energy to chase appointments
When you have MS and you’re feeling fatigued it can be really hard to get the momentum and energy to contact people. It’s stressful. You’re almost your own PA and sometimes you don’t have the energy for that. I have to write things down because sometimes I’ll speak to people and I won’t remember. Or I’m not fully explaining myself properly because of my MS.
The more tired I am the worse it is and my words come out slurred. That’s all my MS symptoms playing out because I’m either stressed or fatigued.
Things have been on hold for the last year
I’m currently not on meds. I started Ocrevus before the pandemic and the anxiety of being immunocompromised caused me to turn away from treatment while the pandemic was in full force.
Read our information on coronavirus and MS treatments
I’m starting it again soon. But while I’ve not been on a disease modifying therapy I’m not a priority - at least that’s what it feels like.
I asked for physio but I’ve been waiting all year. As I wait my body gets worse along with my mobility. I stretch daily and on my strongest days I’m doing seated yoga but with no noticeable improvements. I need a MS specialist physio but instead I’m trying to learn to become my own.
Not being able to show how MS is affecting me
I want to physically show a physio what’s happening with my body so they can suggest things I can do. Maybe yoga’s not the thing. Maybe I should be doing something else as well, maybe there’s something else happening, maybe I need a drug – I don’t know until someone can assess that for me physically.
My body is in a different place in general. That affects my mental and physical health. I need to feel lighter in general.
The government need to listen to us
I think the government need to do better on neurological services. We need to benefit both the neurologists and the patients. There’s not enough things in place to help healthcare professionals do their job more efficiently. And the government need to create that.
Unless they’re willing to listen to people’s experiences things won’t get better.
UK governments need to act
Last year, 8,000 of us signed an open letter for our Neurology Now campaign, calling for better access to MS and neurology services. Now, we’re joining up with other organisations, because we want to see progress towards people with MS getting the vital support they need.
Delays to life-changing treatment and care, and a lack of mental wellbeing support can’t continue. Help create real change and sign the petition today.
We updated this blog on 08-06-2022
