Two years on living with MS: testing my resolve

A couple of weeks ago a photo memory of me flashed up on my phone, seemingly well and happy on holiday with my family. It triggered an immediate and very emotional response in me. I grieved for the person staring back at me in that picture, the woman who had no idea of the medical diagnosis that would change her life just a few short days later.

Why I’m writing about MS on World Mental Health Day

Two years have flown by in the blink of an eye, but in many ways it feels like a lifetime already. When I wrote my first blog post in April 2023, I was in a good place. I had come to terms with my diagnosis and had found hope in the form of the Overcoming MS charity. I was re-building my new ‘normal’.

15 months on, I’m still in a relatively good space but have faced a number of additional health challenges, particularly over the last six months, which to be honest have really challenged my stalwart resolve on many levels. Today, on World Mental Health Day, the theme is “it’s time to prioritise mental health in the workplace”, and it feels like a good time to share my own lived experience of this.

The physical impact of MS and treatment

In March this year, I developed a painful skin condition on my hands and feet. Over the course of a couple of weeks a rash spread and dermatologists diagnosed several types of psoriasis, for which I began a series of photochemotherapy sessions.

Sadly, this only made the issues worse and a few weeks later I was hospitalised with erythrodermic and pustular psoriasis covering 90% of my body. This was followed by daily and then weekly visits to dermatologists.

Five biopsies and countless medical appointments later, with incredible support from my dermatology and neurology teams, I have been diagnosed with Pityriasis Rubra Pilaris. It’s a rare and long term inflammatory autoimmune skin condition, likely caused by a reaction to the monthly infusion of Natalizumab, the MS medication that I am now so dependent on to keep me well ironically.

Swings and roundabouts

Unable to stop my monthly infusions due to the alternative MS medications not being as effective for my type of MS, and unable to start taking Methotrexate, a form of chemotherapy/ immunosuppressant commonly used to address this type of skin disorder due to the health risks of being on two immunosuppressants, I was left with one other option. I was prescribed a drug called Acitretin, a high risk medication which comes with a ‘black box warning’ and some horrible side effects.

I now have blood tests every three weeks to monitor my liver function (which has been damaged as a result of multiple medications) and I have developed drug related alopecia. Thankfully, I previously had a good head of thick hair, so it’s not too noticeable yet! However, my skin has improved, so swings and roundabouts.

MS and my mental health

Due to my status as ‘a complex medical case’ I have now been referred to a medical panel for consideration for a very expensive, alternative treatment. It is highly unlikely I will be accepted, but I’m keeping everything crossed - watch this space…

The health issues of the last six months have undoubtedly affected my confidence and challenged my resolve. People often say to me ‘oh, but you look so well!’ That’s because I get up and put on my ‘armour’ (clothes, make-up, smile) and for the most part I try to make light of my issues because that is my own personal coping mechanism. The shiny facade doesn’t mean that I carry my load lightly, I can assure you that behind the scenes it's not all unicorns and rainbows. My family and closest friends have seen and supported me through my darkest days, for which I will be forever grateful. I’m also lucky to have a supportive employer, and a wider support network including my colleagues, former colleagues and medical professionals.

I manage my own symptoms in the best way for me. Most of the time this means putting on my armour and seizing the day, however I do have to listen to my body now and I’m less afraid to ask for help when I need it. I do worry that if I dwell on the negatives for too long they will consume me, but I’ve also learned to accept that it's ok to have bad days and to lean into those feelings when I need to, in the knowledge that my support team will keep me afloat and lift me right back up again when I need them to.

Thanks for reading,

Liz x