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Don’t Lose Yourself to MS

Reading time | 4 mins

If I had read the title of this post even just a year ago, I would have rejected it.  “Too late for that!”, I’d have thought.

Because even with the amazing support from family and friends throughout my MS journey so far, I couldn’t stop feeling less of who I once was. Less than good enough. I thought everyone around me felt the same, but the truth is, I was my own worst critic.

Some of these feelings are true: I’m not as organised as I once was. I’m not the detail-minded, super-focused person I used to be.

Thankfully, other troubling thoughts have proven to be untrue: I am a good enough mother, wife, co-worker, photographer, blogger etc.

In the past year I have really focused on getting my thoughts and feelings in check and putting self-loathing back in the box where it belongs. While it’s still a work-in-progress I have come a long way, and would like to share some of the tips I’ve learnt so far. 

I am enough in my work life

Yes my work life has changed since my diagnosis, but not as severely as I first feared it would. Yes, I am not the detail-minded individual I once was. I am more forgetful, and I struggle to keep focus for long periods of time during calls and meetings. By being open with my bosses and work colleagues and by making some small adjustments, I have found a good and workable balance.

To combat my forgetfulness and short attention span, I write EVERYTHING down. I even send myself emails, if I can’t write in my diary.

My colleagues are very aware of my MS. I am open and approachable about it and always happy to answer their questions. Some of them even read my blog! For me, it plays a huge part in feeling in charge of my own ability to contribute to the team.

I am enough as a parent

My son was five when I had my first, and most severe, MS episode. Today he knows that I get tired, sometimes trip up, struggle with stairs or uneven ground, and that noise sometimes becomes too much for me.

Yet, we have found many ways of being active without it being too taxing on me and I no longer worry about being a good enough mother to him. Credit is also due to my husband for taking on the rough and tumble – being the soft play accomplice and the one running behind my son’s attempts at riding his bike.

Of course being active is not the only way you can be a good parent. I’m still the listening ear, the source of cuddles, the homework support and his unconditional cheerleader.

Don’t let the things you can’t do make you feel anything less than a good parent. That’s what makes a great parent and costs little energy, or money.

I am enough as a photographer/blogger/insert your own hobby

I love photography and I love to write. Taking photos gives me a reason to get out in nature, attend events and constantly strive to learn to get better at it. Writing on my blog is extremely cathartic and helps me process my thoughts. Writing about holidays or days out helps me remember and look back on times when I felt good and happy.

As much joy as I get out of both, it can also bring out my negative voice. It tells me that my photos could be better, and my blog has been neglected for a month. In the past, I would have worried about this, but I simply don’t anymore. I tell this negative voice to be quiet.

Of course, my photos could always be better but I’m constantly learning, and I remind myself of the amazing comments I have had from others. Readers of my blog have told me how much my writing resonates with them. It doesn’t matter to them that I don’t churn-out posts on a daily basis.

I am enough as a spouse/partner/lover

I found this area of my life the hardest to deal with. When you are diagnosed with MS, your partner is too. So it is inevitable that a relationship, going through anything like this, will change. It brings a lot of uncertainty, a change in dynamic, fear, doubt and a period of mourning your old way of working as a couple.

I struggled with a number of things. Gaining weight due to lack of exercise, losing the ability to be spontaneous, hearing myself complaining constantly of being tired, not always tolerating the noise of a family household very well and constantly worrying about the future.

It made me lose all my confidence, feel unattractive, grumpy and boring – not exactly good “wife material”.

As time went on and we both learned about the condition and our new normal, we have found a new groove and a new understanding of each other’s struggles with my illness.

First and foremost my husband needed time to adjust and grieve. His love for me hadn’t wavered, it just changed. I am reminding myself that being slim is not the only way to be attractive to him. With his support and me learning to be positive, we are carving the next chapter of our relationship. Slowly but surely, we are finding each other again.

The takeaway

An MS diagnosis can turn your whole life upside down and you may feel like everything has changed.

But give it time! You can be yourself again. You are not a burden. You will find a new path. You are enough. It takes time to get there and the process can’t be rushed. Use this time for you and those around you to adjust, learn, accept and finally, embrace your new lives.

UK/MED/20/0037 February 2020