“The hardest thing is balancing the possible future with living life now”
I was diagnosed with MS in 2018 after several years of experiencing symptoms including shooting pains and pins and needles.
At first I thought it would just go away, it’d be fine. But it didn’t – and I started getting carried away on Google, thinking it could be brain tumour or something. So when the doctor gave me the MS diagnosis, I was actually quite relieved.
The MS symptoms I live with
Now, I live everyday with pins and needles in my hands. When I get agitated I have them across my face and skull. I can get tired at times and on occasions I have ‘lost’ my right leg, it kind of fell away from under me. That’s only happened a couple of times.
Something that bothers me is dying to go to the toilet for a wee - which can come from nowhere. The MS Society have a "I have MS" card that you can show if you need to use the toilet. I got one of those for worst-case scenarios. There have been situations where I’ve been rushing into a petrol station off the motorway with the card in my hand! But no-one’s ever challenged me so I haven’t had to use it.
Making the decision to continue having a family
After my diagnosis there was a period of worry – what does this mean for me and my family? I was married with one child when I was diagnosed. Me and my wife spoke at length and made the decision to have another child. My view is that anything can happen in life. Nothing to do with MS, I lost a parent when I was very young. Although that’s left a huge void, my father brought us up as a very happy family. Anything can happen.
Being a dad is great. The best thing is seeing your kids happy, seeing them learn and grow. The challenges as a dad with MS are that I can be very tired at times. Then I can feel guilty if I have to have a wee nap and I feel I should be helping my wife.
But as parent with MS, I think it’s important to look after myself so I can make the most of the time with my kids.
If I take that rest then I have the energy to be with them, rather than feeling I’m dragging myself through the coals and battling on.
Finding a balance between family, work and MS
The employers I’ve disclosed my MS to have been very supportive. Before I first told my employer about my diagnosis I’d built it up in my head… and then it was fine. I am fortunate to be well versed in employment law, so I do know the protection that comes with an MS diagnosis. That felt like a safety net, that I couldn’t be kicked out into the street. But I’ve seen online and in social media groups that not all employers treat people as well as they should.
Read our infomation about work and MS, and your rights at work
My previous job was good and I loved everyone there. It was also very demanding. I made the decision that it wasn’t working well for me in life. I wanted to have the balance to be able to relax more and not run myself ragged and affect my health. My wife and I sat down together and looked through our finances and what we could and couldn’t do without.
I made what you could say was the brave step to become self employed. I was very worried about it at the time, but it’s actually worked out fantastically well for me.
Right now I’m working just as hard as I’ve ever worked. But I know that I can tail back if I’ve got an issues health-wise. It’s better for my health, my wellbeing and my family.
Living with the uncertainty of MS
With MS, I feel I’m waiting for the uncertainty of something that might never happen. So, in my head I balance should I be focussed on paying my mortgage off faster for the sake of the family, at the detriment of going on nice holidays? It’s trying to get that balance of what might come in the future but may never happen.
It is not just myself that is affected by this illness and it is important to share when I’m experiencing symptoms so I can work through them together with my family.
Initially on diagnosis I felt a great deal of guilt on being a burden to others, while keeping it to myself wasn’t helpful at all. I’m fortunate to have a very supportive and understanding family who are on this journey with me.
You want to live life to the fullest, don’t you? But I’ve got to think of others and that unthinkable day that might come. It’s all about balancing looking after my family long-term with actually enjoying life with my family right now, just in case that opportunity lessens in the future. I think that’s the hardest part of it all.
We're here for you
Not having the answers to your questions can be scary. But you're not alone. Contact our MS Helpline for free, Monday to Friday, 9am to 7pm except bank holidays.
It’s free to call from landlines and mobiles within the UK. What you tell us is confidential and when you call us, it won’t show on your phone bill.
#LetsTalkMS
MS is unpredictable and different for everybody. This MS Awareness Week (25 April-1 May 2022) we shone a light on uncertainty and MS.
We shared stories from our community about dealing with uncertainty.
Get in touch to share your story.
