In 2000, I briefly remember my Mum coming home wearing an eye-patch. I immediately asked her if she was a Pirate to which she replied with a chuckle and explained it was so she could focus more on the road when her eye got bad. I know my Mum was struggling with vision in one of her eyes at the time and the fact she had to wear an eye-patch was actually really amusing to me – being only 6 years old. But slowly, my Mum was taking more trips to the hospital for tests and I started to notice something wasn’t quite right. I remember it quite well and to be honest, I’d say the process of my Mum receiving her diagnosis was the first clear memory I have. I remember on one occasion my Dad picking me up from school and bombing it down the motorway – again, as a 6-year-old, I found it so exciting to leave school early to go pick up my Mum. I remember her sat on a wall and struggling to stand up when we pulled in. I asked my Dad why she was limping and he said she needed to have a big needle injected into her spine to see what was making her poorly. I remember so clearly in that moment that my heart started pounding. I became worried and anxious and realised that eyepatches, playing with crutches and speeding down the motorway couldn’t mask the fact that my Mum was really not well. A few days later, she came home with a booklet. ‘My Mummy has Multiple Sclerosis: A guide’. And, that was the start of a very long journey, a journey that would define all of our lives as a family.
More so as a child, whenever anyone asked what was wrong with my Mum and I told them she had MS, they had no clue what it was. As a teenager, more people knew and some people still asked ‘what’s that?’ Now, when people ask, more often than not, they know what it is but I still find myself giving a brief explanation of the condition. So, I’ll give you guys quick snapshot of the illness – which is pretty easy to understand if you read the NHS website - and how is correlates with my Mum’s health.
Multiple Sclerosis (also knows as MS) is an auto immune condition that attacks the Central Nervous System. Basically, the immune system attacks a healthy part of the body, in this case, the brain and spinal cord. It attacks the layer that surrounds the nerves which can cause them to become damaged, resulting in messages travelling along the nerves to become slow and disrupted. It is a lifelong disease with no cure and can cause serious – and sometimes mild – disability. In terms of a cause, it is seen as genetic and environmental but it’s still unclear really. With only 100,000 sufferers in the UK, it is still rare and because of that, completely under the radar. There are 4 main types of MS but I’ll explain the two most common;
Relapsing-Remitting MS – which is the most common form. This is where they experience flare ups and relapse, resulting in new symptoms appearing and becoming permanent. Imagine a roller-coaster for this one
Secondary-Progressive MS – This is where symptoms worsen over time with no recovery. Most of those who experience RRMS develop this. Imagine the roller-coaster dropping continuously with small breaks in-between.
Like explained above, there is so many more explanations through google for the condition if you want to find out more. So, now that that’s out of the way, lets get straight back to it.
As a child, I was pretty clueless on what MS and how it affected my Mum, all I knew growing up was that my Mum wasn’t well, was no longer able to work and needed help as and when she could. Daily chores had more meaning now when we knew we were doing them because Mum couldn’t. My mum was first diagnosed with RRMS which has now developed into SPMS. Over time, she deteriorated in many ways and as a family, we accommodated to her needs and helped out. Eventually, having a Mum that was unwell became normal to me and now I can’t even remember a time where she was healthy – but I wouldn’t have her any other way. The only knowledge and experience I have of MS is living with someone who suffers from it and I’ll be the first to tell you that it really isn’t nice to witness. Even more so when it is your parent that suffers and eventually, the roles are reversed and I found myself helping to care for her.
Many of my Mum’s symptoms have developed and changed over time. When she was healthy, she never stopped, she was a powerhouse caring for me and my two brothers and keeping the house going. Her first symptom was losing the sight in her right eye – hence the eyepatch. Then, she began to lose feeling down her right side. Typical stroke symptoms right? Maybe so, but diagnosis was such a long drawn out process for her that I’m sure she’ll agree with me when I say she was relieved to finally know what was wrong. The next 10 years were pretty much the same in the sense that she would suffer a relapse, be administered steroids, perk up a bit and come crashing back down. Because of the steroids, she ballooned in weight which she then lost, which then resulted in another relapse and this became an endless cycle really. I remember on one occasion when I was only in Primary school, where she collapsed for no reason apart from her legs just stopped working. It was just me and her in the house. Instances like that used to – and still do – terrify me. Eventually, my Dad quit his job to become her full time carer – a move that took some serious balls and unconditional love if you ask me. Time passed and Mum needed a wheelchair more often, she needed help with daily tasks and began to struggle with things that you and I would take for granted. I’m not going to go into a huge amount of details, mainly out of respecting my Mum’s privacy, but to slowly lose to ability to do everyday things was heartbreaking to see, and still is. Lets fast forward.
When I was 16, my Mum sat me down and wanted to explain the true extent of her illness and what it would entail for us all going forward. That was the first time I broke down about it. The realisation of what my Mum was going through and what we had to face in the future absolutely terrified me. Me and my Mum have always had a very turbulent relationship all because we clash way too much because we’re so similar and headstrong. But, there's not doubt in my mind that I would be completely lost without her and she really is my best friend. To be told to prepare for carers, complete loss in mobility, becoming a vegetable… No, it was too much for me to handle. So, after 10 years of pushing her illness to the back of my mind, it became the only thing I could think about and focus on. Being told at 16 that my Mum will get worse at a faster rate and the future is unclear, was heartbreaking.
Fast forward another couple of years and I found myself in a place where I accepted what was going to happen and I felt more prepared for it. Hence, coping better. Coping enough to feel comfortable to talk about about with others, the share it with others in the hope that it raises more awareness about the disease. And boy, am I glad I finally got to a stage where I could cope with it because when they say time is a healer, that doesn’t apply the Multiple Sclerosis.
2018, My mum is 51 and has had this condition for 18 years now. Since the dreaded ‘Secondary-Progressive’ development, I have seen a quicker decline, more so now I don’t live with her anymore. Here’s just a brief overview of the shit that lady has been through and I dare anyone to tell me that she’s not a strong lady. Because, god-damn, if I have an ounce of the strength my Mum does then I’m doing ok.
A mini stroke which went unnoticed at first is what led to the diagnosis of SPMS. Stress is the biggest cause of her flare up and the loss of her mum, my lovely Grandma, wouldn’t have helped at all. Along with that came a diagnosis of diabetes, trouble swallowing food, coughing fits – which are like something out of the exorcist I swear - sleep apnoea and a mountain of tablets a day. My Mum is now solely reliant on her wheelchair to get places, even if it’s just to the next room of the house. Spasms galore – honestly trying to paint that woman's toenails is a task and a half whe she can’t help but kick you in the face. Blood pressure checks, blood count checks, eye checks, checks checks checks. Honestly, she spends so much time with her doctors and specialists that she may as well call them friends by now. She need assistance when moving, washing and dressing herself, going to the toilet. Remember I mentioned the day to day things we all take for granted? Over time, we all know as a family that she’s too far advanced now for any treatment to stop symptoms, but rather make life as comfortable and manageable as possible. We laugh about it every now and then because I know if we didn’t, we’d let the sadness of the situation consume us. Whether she’s slurring her words or forgetting names or her uncontrollable leg spasms – you have to laugh.
You could say that because of my Mum’s diagnosis, she is unable to do what your ‘typical’ Mum can. As a child, we could never go abroad, because Mum can’t fly. But, we had the most awesome trips to make up for it and summers were always such a treat. Many women my age are now enjoying a time where they can go for a couple of drinks with their Mum, days out, nights out, holidays away. I, myself, wouldn’t change my Mum for the world – illness and all – but it does sometimes that we can’t do all that stuff. But, instead we have tea together and laugh about life and that’s enough. The one main thing that really does get to me if that fact that my Mum can’t stand for long enough or has the strength in her arms for me to give her a proper hug. But now, we've adapted it where I just lay on top of her when shes on the sofa and that’s our hug. The best hugs in the world.
MS is a devastating illness. Not just for the sufferer, but for those who have to witness the suffering on a regular basis. The main one who does? My Papa. My Dad has literally gone above and beyond for my Mum since she was diagnosed and I’m in awe of what he does every day. The sacrifices he made to be her carer and I tell you something, the man has the patience of a saint because my Mum’s mood swings are like a tornado is in the room – sorry Mum, you know it’s true! For me, I struggle every now and then. Something will happen that makes it all seem a little bit too real and I seem to revert to being a kid again – upset and confused about what’s going to happen. Deep down, we all worry, I know we do and we acknowledge that but I think we do a pretty damn good job of not letting the bad times, past and impending, to ruin what we have now. Sure, I have my moments of ‘why my Mum?’ and cursing the world for being so cruel but spending your life resenting the unpredictable is a waste of time. I sometimes worry I might develop it myself. With it having a link to genetics and more common in women, it scares me sometimes. But, I’ve seen my Mum do it, I’ve seen her power through and get on with life despite all this terrible disease has thrown at her. And at the end of the day, she has a smile on her face and still stands up again – metaphorically because, y’know :) – after every knock back.
In terms of research, well. They’re trying. They’re trying their best to find a cure. Unfortunately, by the time that happens and if it ever will, it’ll be too late for my Mum and many others. But, it’s a step forward and any awareness raised is a good thing. If you’ve read this post and want to know more about MS, that’s raising awareness. If you’ve read this and have a greater understanding of it, that’s awareness. Any awareness helps and I really do hope that one day, a cure will be found in my lifetime and MS is no longer seen as such a debilitating illness.
Thank you so much for reading and making it this far. I really hope you enjoyed this post as it was my most requested when I asked on my social media! I’m thinking about raising money for the MS Society at some point in the near future and aim to have more people talking about and fighting against MS. Mum, you're an absolute superwoman who inspires me everyday. But, Dad - you're the backbone for us all. I love you both so much.
Until next time, M x
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