Multiple sclerosis and hormones

Laura Stonehouse’s hormones turned her life upside down when she hit peri-menopause. Here she tells her story

Over the years living with multiple sclerosis (MS), I’ve learnt that sometimes, things can be unpredictable. Not just because of the nature of the condition, but the unrelated things you were expecting to happen can take a different turn. Let me explain. When I first started writing this for New Pathways, I thought I had got to the end of one chapter. I’ll start with my original post, written two months ago.

My journey to an MS diagnosis had been over a decade of random, seemingly unrelated symptoms and unfair self-assigned labels. Lost peripheral vision in one eye? It’s probably the pregnancy. Can’t feel it when I touch my tummy? Probably a trapped nerve. Calling everything ‘freezer’ or ‘blueberries’? Probably a bit stupid. Can’t get out of bed? Lazy, fat, depressed, useless, mad.

Missing the signs

When Facebook notifies you of memories, I can look back on those posts with self-compassion. One from 2009 caught my eye the other day – I’d said, “I think I can feel my fingers again – finally light at the end of the whatever-this-was tunnel!”. Innocent times. Buckle up, Buttercup, I want to tell my 2009 self, that’s not sunlight at the end of the tunnel.

The diagnosis finally came and I had a label – highly active relapsing remitting MS. So many appointments, so many letters, so many long walks around mazes of hospital departments I didn’t know existed. A counsellor helped me adjust to the shock, grief for a future I wouldn’t now have and overwhelmed feelings around the bombardment of information and appointments.

Starting treatment

My first round of Lemtrada went well, although it did cause what later became thyrotoxicosis. A series of counselling, with someone experienced in life-changing conditions, steadied me before the second round and after a very long wait, a thyroidectomy followed. Despite this, Lemtrada was a game changer for me and halted the MS in its tracks. Not a cure but no further progression. I became very aware of my symptoms and can manage most of them by making tweaks in my day-to-day life – I’m unapologetic about needing time out every day to just sit and be. Asking for help when I need it is something I’m now comfortable with.

A few years later nouns began escaping me again, everything seemed emotionally triggering, everyday household tasks were overwhelming, my digestion was on a hair-trigger, constantly bone-tired, not sleeping, boiling-hot, anxious – I felt joyless and lost. I was questioning every symptom – was this the MS worsening, the wrong thyroid medication, IBS or some new awful disease? I slipped back into labelling myself ‘lazy’, ‘stupid’, ‘mad’.

Hormonal clues

One day, whilst crying over something trivial, I realised my tears were like the hot tears of rage that accompanied my mid-teenage years. Hang on, was this hormonal? I saw my wonderful GP (whilst crying, as this seemed to be my default position) and poured out the madness I seemed to be in the grip of. She said these were compatible with the peri-menopause and explained about the newer body-identical version of hormone replacement therapy (HRT). Within weeks I stopped crying! The HRT took a couple of months of trial and error to get to the right balance of oestrogen and progesterone but I’ve not looked back. However, there was still the slight tinge of wondering who I am now? Is it all downhill from here?

Mental health MOT

I returned to person-centred counselling again as I needed a mental health MOT to process who I was starting this new phase of my life. I met online with the counsellor I had worked with between rounds of Lemtrada as she had experience counselling peri-menopausal women. It was such a relief to have the space to be entirely myself, not putting on a brave face for those dependent on me. I can now say I’m optimistic about what comes next, I trust myself to know when something isn’t right with me, I’m fairly relaxed about my MS future and I can label myself Laura without any further self-critical adjectives. I’m still me!

That was me a couple of months ago and things were looking up, right? I could call myself brave, resilient, and happy! I had started practising qi gong every morning and evening. My sleep was improved and my outlook was positive. But everything was feeling a bit physically wrong again. I went back to my default questioning, is it MS? Is it the thyroid medication? Is it IBS? Is it something new for me to learn about and manage? The GP and I came to the conclusion the HRT wasn’t agreeing with me, so while I need some further investigations (more appointments) I stopped the HRT. My first response to the GP was ‘But what about the crying?’. My thyroid medication restricts my choices of both medical and herbal options.

I’ve tried a few things out, I trust my feelings to judge what is and isn’t working. Currently, I’m depending on peri-menopause vitamins, qi gong and, my failsafe option, I’ve had a therapy MOT. Excitingly, I’m no longer crying. Current labels are still brave, resilient, positive, and relaxed but also engaged with life, and happy. I’m awarding myself a diploma in the Life and Feelings of Laura Stonehouse, which I have passed with honours!

My top tips

Do have a look at the qi gong resources on the MS-UK website. There are seated options and although I have previously enjoyed yoga, the qi gong has fewer fixed poses if you struggle with balance. I like the free feeling of the practice. I can get myself terribly distracted if I’m pressured to empty my mind and meditate but qi gong seems to accept me as I am now, which strangely quietens my mind far quicker.

We’re all different. There’s no one perfect way of ‘doing’ peri-menopause. What works for your friends and family may not work for you and that’s fine. If you listen to MS experts for advice about MS, then why not listen to the greatest expert in you – it’s you!

Talk to your GP if you’re struggling with symptoms. Mine said, “You don’t have to put up with things you’re struggling with,” which was a reassuring sentiment when I suspected I was going mad.

Talk to someone. It’s an old adage, but things are better out than in. Feeling sad about this life change can be an entirely normal reaction. If you’re wondering, ‘Who am I now?’ then exploring these feelings with a qualified counsellor in an accepting, non-judgemental space can give you the support you need to adapt and thrive in this next phase of life.

The peri-menopause and post-menopause don’t define you, much as MS doesn’t define you – they’re all just parts of the unique person you are. You’ve come so far – you’ve earned your ‘Me’ diploma.