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I loved my job.  In fact it wasn’t a job to me.  It was more like a vocation, I enjoyed getting up on the morning and going to work every day, even cold Monday mornings in the depths of Winter.  I just loved it.

When I finally realised that I couldn’t manage physically to do my job properly I resigned.  I had to be realistic.  I owed it to the people I worked with, to the children I taught, to their families, I owed it to myself. At the time I tendered my resignation I was recovering from sural root nerve surgery and while I was recovering a bone had sheared off my knee cap when I stretched one evening in the bath.  This meant that walking was becoming more and more painful, I was having ongoing hip investigations to try to find the cause of the pain and excessive movement in the joint (which I now know we’re daily subluxations) and major reconstruction was in the pipeline to stop my knee dislocations.  I had recently been diagnosed with Charcot Marie Tooth Disease which explained things a little and I also with ME (although I never agreed with this I thought that there were other things at play). Realism was something I had no choice but to embrace.  Thankfully, with a happy one year old at home, emotionally, it definitely made the transition from career girl to stay at home mum a little smoother.

So 10 years on, three children later and with Ehlers Danlos Syndrome, Autonomic Neuropathy and POTS connecting the dots of my weird and varied medical symptoms I’m learning to get on with it. As my children grow and the youngest is old enough to be in full time school (although she’s not) I’m often asked questions surrounding work.  I rarely give  an up front answer to these questions, I brush it off with responses like ‘I like being a lady of leisure,’ or, ‘there aren’t enough hours in the day,’ when honestly there isn’t enough time to explain….

Don’t you want to work?

Let’s take yesterday.  I’m not in a flare of symptoms particularly at the moment, just pre menstrual and I’ve had two migraines in the last week and a half even though I take preventatives.  I couldn’t surface from bed, it’s was hard, really hard and the first thing that I was aware of when I opened my eyes were the flutters in my chest as my heart missed beats.  But my son had to be at the bus stop half an hour later so I forced myself to get up.  My knee was subluxing immediately, so I limped to the loo.  My jaw got stuck open while I was brushing my teeth.  I was nauseous – all day, I had a slight tremor, my breathing was labored, I just felt off.  I went about the day as normal, like I always do.  School runs, church, shopping, cooking.  By 6 pm I was really struggling, my pain was elevated and completing the simplest of tasks for the kids required soooo much energy.  I decided a bath might help.  My daughter kept me company making her loom bands sat on the stool in the bathroom, (her OT would be pleased!) A bath often  helps with pain but as I got out I just saved myself before fainting.  As I sat on the bathroom floor recovering I decided to talk to my daughter about what to do if mummy passed out and bumped her head.  This is important as we often have a baby gate closed at the bottom of the stairs to stop the dog from coming upstairs, which she can’t open.  We now have a plan, she took it in her stride.  I helped her to finish her loom bands and got my daughter nicely tucked up in bed, the boys bathed, HW sorted then collapsed on the sofa.  By 8pm I knew that the rest of the evening was written off.  I still felt sick, shaky, weak, breathless and I couldn’t find my words or think straight when having a conversation with my husband when he got home.  As we got in bed he hugged me and popped a rib, to add to the jaw, shoulder blade, knee, hand and big joe joint that have subluxated/ dislocated throughout the day.  Thankfully I fell asleep quickly.  Tomorrow is always another day.

So of course I want to work I loved my job and studied hard for my career.  I did not choose to be at home, my body made my choice for me.

Aren’t you going back to work?

At the moment my daughter has to attend school part time because her body can not cope with the demands of school across a whole week.  She becomes fatigued, really fatigued, to the point that her body hurts all over.  You know that feeling that you get when you are getting over the flu, where your whole body aches, where your skin feels alive and tender to the touch, your tissues bruised.  That tired.  She also gets pain.  She’s so bendy it’s like her body is held together with chewing gum.  This makes normal things hurt like holding a pencil, walking, damn, even sitting can hurt.  I often get calls to collect her from school early, particularly in the summer when the heat makes that chewing gum becomes even more stretchy.

I would need a very flexible employee.

Don’t you get bored at home?

This January we have had lots of hospital appointments as a family. The lengthy clinic appointments at tertiary hospitals take up the best part of a day with traveling.  I’ve been seen at the National Hospital for Neurology and Neuroscience at Queens Square, and the Princess Royal University Hospital in Kent and one of our children has been seen in clinic in the Neuromuscular Unit at Great Ormond Street.   Between them the children have had seven Physio sessions, including two at G.O.S.H and one at Stanmore Orthopeadic hospital.  One of the kids has had a lengthy OT assessment.  I’ve been into one school twice to help with the introduction of daily Physiotherapy and have had telephone conversations with another.  I’ve also spent time chasing up the wheelchair that my daughter was referred for last April (it’s now the beginning of February, that’s 9 months and counting)  It’s been a positive start to the year, things are getting done, provision is in place but on the flip side those three clinic appointments alone have triggered 6 more referrals and blood tests.  It’s never ending!

Staying strong takes time and energy.  For me this is a weekly Pilates class, daily physio and a walk with the dog. For the kids its weekly dance classes, swimming, table tennis and generally staying active in addition to their Physio and OT exercises and learning to touch type.  All of us need to stay active, it is imperative with EDS and CMT, being strong holds us together, literally, and staying conditioned can reduce the symptoms of dysautonomia.  However, doing too much can soon flare symptoms, particularly pain, cause more fatigue or trigger autonomic neuropathy.  It’s a fine line and the signs that you are crossing that line are subtle and hard to spot, particularly to the untrained eye.
Co-ordinating all this – there usually isn’t the time to be bored.

Would you need to train again?

I think that lots may have changed in the classroom in the last 10 years, interactive whiteboards, iPads, data, performance related pay.  The heart of teaching though surely that hasn’t changed too much, the reason teachers get up and go to work every day, it’s all about the children, to inspire the next generation of learners?

Personally I have grown in so many ways over the last decade and I have so many more skills to offer now than I did back then, many I did not dream of possessing before I began to navigate my family along this journey.  I can chair a meeting.  I can emotionally remove myself from the task at hand to get the best result.  I can take minutes. Write reports.  Communicate with and co-ordinate different teams to work together.  Mediate when things aren’t going to plan.  Be assertive to get a result and also show gratitude when people are doing their jobs well.  I have trained in the law and attended conferences.  I can be a nurse, physiotherapist and occupational therapist (and wear all the hats at the same time). I can converse with most medical professionals technically (who would have thought how handy that biology degree would be). I’ve been a volunteer, school governor, and have become a published writer.  I’ve surprised myself by enjoying public speaking.  I have the organisational skills of many top PA’s.  I still teach my children (all of them but particularly my daughter when she isn’t in school) but I’m also an educator (in a much wider sense of the word.) The most important skill though, I’ve learnt to advocate for myself and my children.So who will supply the reference for all of this? ; )

I may have been unaware of my destination when I embarked on my career in teaching but look at what I’ve gained along the way… and I haven’t reached my destination yet.

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