A Diagnosis, a Reckoning, and a Reset

You might have noticed the page being quiet, me not answering questions.

One week ago today, I was diagnosed with MS.

In many ways, it’s still very surreal. I’m writing this blog to share but also to help me process and get my thoughts down on paper. Today is probably the first day my thoughts have been in any way coherent since, but I’m still only working on partial capacity. Brain fog and headaches have been a constant in the last two weeks. My sharing is selfish in many ways, trying to blast so everyone just knows all at once and avoid the repeated explanations, and also explain why I’m taking a pause and a restock right now.

Two weeks ago, on Wednesday, I woke up not feeling right. I’d had a really great productive day on the Tuesday, gotten loads done on the course and I was feeling great about it. Woke up Wednesday just feeling a bit hit by a bus. Was messaging my summer course support group who were giving ideas to get myself going but just really struggled. Got a few bits done that day, a couple of recordings done, but it felt like a bit of a write off for productivity despite me having used a valuable EPV day for it. Summer Programme email came in and the planning docs, so did some summaries, but definitely didn’t feel like my best work.

The next day, Thursday, I was back to work. I still wasn’t right but it was what it was. It was Sports Day. Spent a wonderful day at the pitch chatting to parents, kids, staff. One of those lovely remember-why-you-do-the-job days, except my vision wasn’t fully right, just a bit blurry around the edges, and the headache was hanging in there. It wasn’t bad enough to call in sick though.

We moved on to Friday and I was getting an early morning train to Dublin for a professional learning day with ET Principals before our Educate Together AGM on Saturday. I love AGM and it didn’t really come into my head not to travel. I felt tired on the train and started wondering had burnout started to sneak up without me realising how close it was. I ranted a bit on the train about the Department and did the email template to complain about Summer Programme (go send it if you haven't yet) and threw up a question box. I enjoyed the day even though I really wasn’t quite right, and AGM was lovely as always on the Saturday, though I was a little wobbly when I stood up to speak on a motion. Enjoyed the chats and seeing people I hadn’t seen in a year. I did what you do, you just power through, until I got on the train home. That’s when the exhaustion hit and the “I’m definitely not right”. I popped up on Instagram that I wouldn’t get to the question box, very not like me. Got a couple of messages from friends asking if the symptoms from Wednesday had shifted and when I said they hadn’t, 'gently' encouraging that I go to the doc.

At this point I didn’t take it seriously. I thought I was tired. I thought it was the travel. I thought maybe it was burnout catching up with me.

So, that Sunday morning, when I was feeling absolutely wiped, I thought it was more of the same and the travel on top catching up with me. I knew I had a half in, half out meeting coming up on the Monday, and didn’t want to miss that, so planned to go to the doc after that. Then I messaged a close friend, asking for her to say it was okay for me to skip that half in, half out and go to the doc instead. The madness of it looking back.

With her encouragement, and that of the summer course gang, I went to the Vhi clinic instead of waiting for Monday. They referred me to A&E for assessment. I was allergic, felt the exact same as when I’d done the same back in December and nothing had come of it. But I went.

I sat in A&E from 4.30pm Sunday to 5am Monday when they decided to admit me for further testing. The doc wasn’t sure, she couldn’t see anything specific, but wanted me to get an MRI to be sure, so admission it was. I sat on the hard chair until 7am until they could move me to a trolley. If I wasn’t exhausted before, I certainly was by then. My no sleep added to the feeling that this would be another nothing and I’d just be told I needed some rest. I’d decided I’d take a few days off anyway.

I spent Monday on the trolley with nothing done bar the initial neurology test checking for power etc. The doc in passing said something about “6th nerve palsy”, an eye not going out fully, but that was it. No further assessment or tests that day. They said I’d be in for a few days because there was a queue for MRI. There were no beds, so I was on the trolley all of Monday. Still convinced the MRI was just precautionary and no real knowledge of possibilities. Symptoms still felt fairly minor and a little bit like I was probably overplaying it. Was messaging friends and my team to say I’d be out a few days. I messaged my Chair to ask if we should consider postponing the DP interviews which were down for the Saturday, and we said we’d make a call on the Tuesday or Wednesday. I was living in denial land, with my only focus being getting a bed so they could do the lumbar puncture, getting the MRI done and getting home.

The night’s sleep on the trolley was bliss, relative to the chair. I zonked despite the hallway noises.

Tuesday morning the MRI guy came and we got that done. I was convinced we were en route to being done. They had to wait for a room to do the lumbar puncture. It was that afternoon they found a room. They brought me in, the doc that was going to do the lumbar puncture was there, and then the consultant neurologist came in.

“The MRI is showing inflammation on the brain, consistent with MS. There are lots of treatments for MS these days, not like 20 years ago. Did you have any issues around pregnancy? It’s likely that vertigo episode in your first pregnancy was actually MS. You’ll get an appointment for the clinic. The MS nurse will pop in tomorrow. Do you have any questions?”

Hit by a truck. Wait, what?

This all happened in about two minutes. I didn’t even know what questions I could or should have, I had no idea about MS, what it meant, what it looked like.

And then the consultant left.

The more junior doctor was all apologies and asked if I wanted to go ahead and get the lumbar puncture done now or come back later. I told him just get it done. I cried silently during the procedure, not even really knowing what I was crying about. I felt the weight of having been told something serious and everyone acting like it was such big information, but with no real background knowledge for it to make sense to me. So I lay there, my brain spiralled, but without enough information to spiral beyond this is a big deal.

That doctor was lovely and explained a bit more. There were a number of lesions on the brain that showed up on the MRI, so they knew this “relapse” wasn’t the first. That’s fairly typical of MS. They need to test the fluid from the lumbar puncture to fully diagnose MS, but that’s the most likely. I still didn’t know what questions to ask but I had some bits to start researching.

So I called my husband. Broke the news. Texted the friends I’d been texting all day. Texted my DP. Suddenly things looked a bit different from my assumption of a few days off and then back to normal.

Immediate treatment was inpatient three days of IV steroids. I was in hospital until Friday. A physio assessment and some chats with the MS nurse, both of whom were wonderfully supportive and reassuring.

I appreciate the significant challenges in our health system, but at minimum hospitals need visual timetables. The utter lack of predictability in there is mind blowing.

What I understand now is that this was a relapse. The steroids were to bring down the inflammation from this episode. There will be long-term treatment, once I go to the clinic in 6 to 8 weeks, to avoid future relapses and lesions. Then there’s management of chronic symptoms, and current things like the power in one leg when tired. Diet, exercise and rest, sleep, and prioritising those above all the other bits going on in life.

And suddenly, the last year started rearranging itself in my head.

On reflection, I’ve spent a year feeling not quite right. A whole string of seemingly unrelated things wrong with me. It felt like life really did go downhill around 40. I’d a couple of falls last year, I had issues with numbness and pins and needles down my arm and leg. I went to hospital with this in December and it was dismissed as a bulging disc. Was diagnosed with a bulging disc leading to pain in neck and back, so lots of physio for that. I’ve had a loss of power in my left leg when it gets tired for a year now, which was put down to the fall and muscle weakness.

There have been so many things that made life harder in the last year or more that never seemed connected. When I did end up in the doc with them, and I am slow to go, it always ended up dismissed. I never took it seriously, never really advocated for myself in it. I regret that now.

Chronic tiredness has always been a part of my life, another symptom I wasn’t aware of, but I was coping, life was generally good.

In some ways, knowing this isn’t new was reassuring. It gives an explanation for many things that have always been for me, chronic fatigue in particular, and takes away some of the guilt that came with it at times. It’s also good to know I have been dealing with this and life has still been really good. Yes, I need to be more purposeful and avoid future impacts, but everyone was at pains to emphasise MS doesn’t have to change your life significantly negatively long term. The old perception of it being hugely disabling doesn’t have to be the case. Things just take a bit more thought and understanding.

The gym can’t be optional any more, meal prepping has to happen.

The big one that I’ll need to be really purposeful about is stress. The nurse was at pains to emphasise how much of a factor stress is in ongoing symptoms and relapses. There’s a lot of reflection on that, and how over the last year there are things, work related, completely out of my control that I’ve allowed cause stress and hold a space in my brain.

There are many things in our roles as Principals that can cause stress. Some of that is unavoidable, but much of it is shaped by the headspace we give it. Be that systems-level issues, building issues or specific to context issues.

It’s amazing how quickly a clear perspective shift can happen. How quickly I could look at things I’ve allowed to cause me significant stress levels in the last year and go, nope, we’re done with that now. Stuff that, when put into the context of is this worth actual impact on your physical and mental health in a tangible way, the answer is a clear absolutely not.

Some stress in a leadership role is inevitable and unavoidable. Some professional stress and tension is normal and even healthy. But what Principals generally carry, and allow ourselves to carry, is not. We know this, the research backs it up and IPPN have been abundantly clear on it. And yet until this week the incentive wasn’t there, the perspective wasn’t there to get a handle on it.

There’s an incredible clarity that has come with the diagnosis, even through the brain fog.

I have two choices. I make this Principal job actually sustainable, I manage the workload, the hours, the stress, and I walk the walk I’m constantly talking about, or I find a different job.

I love my job. It reminded me of that too. So it’s time to get serious about walking the walk. It’s time to nail sustainable and move towards flourishing leadership, because it’s the only way I can keep doing the job. So now it’s non-negotiable. I’ll share as I work through it, but next year’s goal for me is clear. I know I can achieve a huge amount when I put my mind to something, so now it’s time for this to be that focus.

What does that look like, what are the next steps?

Immediately, it’s recovery. Lots of rest and sleep and recovery. It can take 3 to 6 weeks to fully shake the symptoms of a relapse, so I’ve a bit to go. Looking forward to when the brain fog clears.

Then, the rest of this school year will be primarily taken off to recover and plan next steps. I may be back a few days here and there, but my DP will be acting up primarily for the rest of the year. Funnily, the MS nurse met me for about 20 minutes total and said, “I feel you might be the type to try to just get back to normal and back to work quickly.” She read me right, but I’ve made promises.

The rest of this year, the primary focus is recovery and getting into habits for the coming year. My incredible DP and school team have also been clear. They’ve got this. All that work we’ve done on developing leadership capacity is getting a run out.

I’ll have an appointment about long-term treatment in the next 6 to 8 weeks and start the long-term meds. The goal is to stop relapses. I need to get into routines around meals, fitness, my day to day.

My immediate plan, and plan for the coming year, is to strip things back. Work wise, go back to just the job, and let go of all the many add-on things I also do. They are often things I really enjoy, but for now strip it back. Then, as I fall into the new routine, add back in some things that bring me joy.

Instagram is one of those things, it brings me joy. The chats, the question boxes, the interactions. I genuinely get lots from them. But I’m not going to commit myself, and I know it’s only to myself, to weekly question boxes or summarising all the key circulars. Maybe we’ll start with monthly boxes and maybe it’ll just be the circulars I really care about. Lots of people can and do do summaries. I’ll definitely be touching base and keeping in touch and getting the joy I genuinely get from helping people. But just minding my capacity.

I’m going to work on passing over the subbing WhatsApp groups I run. I’ve stepped down from my INTO branch committee. I’ve pulled out of a couple of focus groups. I’ve pulled out of the couple of weeks of Summer Programme manager work I do. I’ll take a break from being a mentor for the year. I’ll start with no webinar plans and build some in if I have capacity. I’ll pick my joy and pick my value instead of saying yes to everything, which is my current norm.

The summer course will go ahead. The content is primarily done and there are just a few interviews left that friends have offered to help out with to get it done. I wasn’t the one admining for the actual course in July anyway. I will pop up the non-EPV version too for people who just want the content. It will pay for a nice holiday to process the new reality, as we just had to cancel holiday plans for June and July, which really brought the new reality home this week.

This has been an absolute ramble, it is very much a case of me processing as much as sharing.

One absolute privilege in what has been a very difficult week is the absolute envelope of love I’ve been surrounded by. My husband has been my absolute rock and will continue to be as we navigate through this. The kids are trying to understand. This book has been wonderful: https://www.mssociety.org.uk/living-with-ms/resources-and-publications/publications-search/what-ms-me-childrens-book. They are surrounded by incredible love and care from their schools, which I’ll always be grateful for. They held them so tight in a time that they were so uncertain and scared while I was in hospital and now as I’m home but exhausted.

My colleagues in school have been nothing short of exceptional. The messages, the reassurance, the support for one another. All just wanting to assure me that they’ve got this and I don’t need to worry about anything. It’s not the run-in to early retirement my DP was hoping for, but how incredibly lucky I am to have her, and the rest of the team.

My colleagues in my phone, who texted me through the hospital days, have been on call for school people, who have sent me just the distraction voice notes to keep me sane through some long days.

My family and my friends have been incredible. From people who haven’t seen me for months on my football team, to the ones I’m messaging every day. Everyone has been incredible and the offers of help and support will never be forgotten.

I have been surrounded in a cocoon of love all week, I’ve felt the village and I’m so aware of how lucky I am to have it. There have been moments of being very down with a “but why me”, but so many more moments of “okay, this is what it is, let’s do this”. I’m sure it will keep bouncing, but I have the most incredible people in my life.

I’ve learned a lot in the last week, some with regret, some with hope. Advocate better for ourselves. Trust friends when they say you’re not right and follow up. Coulda woulda shoulda never helps, sometimes you need to wallow a bit. The right people around you can make anything feel possible.

This is shit, but let’s do this. Hope ye’re okay with being dragged along with me.