Today I would like to welcome Hannah to the blog, one of my lovely followers and fellow home renovators on Instagram. At the age of just 23, Hannah was diagnosed with Multiple Sclerosis (MS). Here she shares what led up to her diagnosis and how life has been since then. And most wonderfully, this is a LOVE story because her partner Luke shares his side of the story, too. As always, I’m so grateful for everyone’s commitment because it is such a personal subject to open up about. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
We Are : Hannah & Luke, mid 20s
Home Is: North Yorkshire
We Do: I work in Private Education helping people complete government funded qualifications. Luke works as an energy assessor for new build properties. (Think Chandler Bing on Friends, a transpondster?)
Find Me: Instagram
It all started the summer of 2017, and no this isn’t a remake of summer of 69.
I had horrific eye pain and had no idea what was causing it, after a few days of just trying to sleep it off and blaming it on being drowned in work, I went to the doctors. A few appointments later I was sent off merrily to the emergency eye clinic in York and honestly just expected to be told my glasses prescription had changed. I’ve worn glasses since I was 2 and this wasn’t uncommon.
What I did not expect was to be told at the age of 23 that I had optic neuritis and be sent for an MRI that would later identify that I had Multiple Sclerosis (MS), likely the Relapsing Remitting kind. I was told I was ‘lucky’ that it was this strain because there was treatment options, not cures (there is no cure for MS) but treatments. I went home and cried. Whenever I thought about it, I cried. September 2017 was rough.
Now I’m not saying that becoming disabled is the worst thing in the world, it is absolutely not, but when you’re at an age that you are starting to plan your future and you get hit with something like that, it’s really hard to swallow. It becomes all you think or talk about. You feel really lost and don’t know who to turn too. The good news is that there is all kinds of resources online that help you realise you aren’t alone – this blog being one of them.
I had 2 more severe relapses in the space of 4 months, one leaving me unable to get out of bed without throwing up and meaning my lovely other half washed my hair for me when needed and helped me get dressed. My eyes had stopped moving together, known as diplopia and everything was in double vision. Its not really a time in my life I would like to repeat.
Luke and I have been together now for 7 and a half years but I really couldn’t imagine anyone else being there for me like he has. He is my rock.
I’ve had 2 rounds of Lemtrada now (a milder version of a chemotherapy drug) which has helped quite a bit, I still use my wheelchair when I know I’ll be on my feet for some time and I have a floral stick (because let’s make it fashion). I struggle but I also have really learnt to live in the moment, or at least we try too. We don’t know how or when my MS will get worse or when the next relapse will happen but we do know that we can make the most of what we are going through.
We’ve been doing up our house since the January after I was diagnosed. Buying a renovation project during such a difficult time felt mad but it’s meant we’ve been able to make it our own in so many ways. I’ve learnt to adjust how I help and I am starting to learn that I need to rest and I cannot do everything, but that’s fine too. We often discuss what we will need from a future home, potentially wheelchair accessible or the ability to have a stair lift installed. I was so tied up in our home feeling ‘medical’ that I often passed it off, but there is so many amazing things you can do to a home and you know what, so what if these things need to be installed? If they help, they help!
So at 26 I’ve become much more comfortable talking about my illness, accepting that this will have an effect on me and realising that people will judge. People will often assume I’m parking in a disabled bay when I don’t need it, giving the side eye watching if I take my stick out of the car. Watching me put together a wheelchair whilst I’m stood up, because if you can walk why would you need that? These people simply need educating, to understand that disability can look like anyone and that you shouldn’t judge a book by its cover.
The hardest thing about Hannah’s diagnosis was how unexpected it was. Hannah and I had been together for around 5 years when she was diagnosed and were living with her parents, saving up for our first home together. I think the fact that we were living with her parents when we were told she had MS was a big help for Hannah and also myself. I knew I had to be strong for Hannah and i tried my best to be a shoulder to cry on and I kept telling her everything would be okay, but I was scared. I was worried about the future as I had no idea what MS was, what the long term effects were and how it would change the way we live. So having her mum and dad to help with the pep talks was so helpful.
We looked into MS at length to understand it more and how it can effect each person differently. Some days Hannah would be okay, with no real issues. Then a few days later she would be bed bound unable to keep food down. It was a very difficult first few months seeing her struggle, but I was overwhelmed by how strong Hannah was being and how she always tried to keep a brave face when talking to family members and even doctors. She is definitely a person that doesn’t want to inconvenience anyone and feels that its easier just to say she was fine even when she wasn’t.
Hannah was assessed for a blue badge which was granted to her as we found that walking was becoming a more tiring and exhausting task, and something that she has been struggling with. So when we pull up into a disabled bay we often get stared at by people nearby. As MS is an invisible illness and by just looking at Hannah you would not know she had a disability. It really surprised and infuriated me at the amount of tuts and stares we get from people. One thing you never think would come along with a disability at the age of 24 is the judgement of other people. I feel it does come down to awareness and education. I think that recently there has been a big push in raising awareness for invisible illnesses so I hope that this will help everyone understand a bit more about them and make them think before passing judgement on anyone.
2 rounds of treatment in 2018 and 2019 have really helped stabilise the flare ups Hannah was having, and fingers crossed it will be a steady road for years to come.
I’m so proud of Hannah and how she has handled this rubbish hand that she has been given. She is so much stronger than she thinks she is. She really wanted to write this post to try and help people in a similar situation know that they are not alone and that there are others going through very similar things. Just because Hannah has gained a disability, she hasn’t lost a single thing about the kind, beautiful and funny girl I fell in love with.
Thank you so so much to Hannah and Luke for sharing their honest story as a guest poster and sharing their thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Hannah’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.