People Who Aren’t Me

So far I’ve blogged about me, me, me. As though all the positive changes in my life have been down to me, working alone. Yes, I work hard, I’ve learned, I’ve adapted, I’ve made sacrifices. But that’s only (not even?) half the story.

Where I’ve been incredibly fortunate, and what has made the single biggest difference in turning the darkness in my life into light, has been people who aren’t me.

I’m not going to do a shout-out to everyone I know (you’ve all helped me enormously, know that), but from the very early days of my health crisis, I knew I could rely on family, friends and colleagues to be there. Sure I felt isolated by my pain and by finding it so hard to articulate what was happening in my body, but deep down I knew I had people who loved me. Specific examples have stayed with me: my husband’s simple, unquestioning acceptance of what I was feeling; my parents willingness to take me in and care for me so my husband could go to work; a colleague crying with me; the friend who texted me with words of love and support just when I needed them most (she saved my life, that girl).

And those who weren’t there at the beginning, who didn’t know me BEFORE. My daughter, first and foremost, who (apart from bringing such light and love into my life) taught me that, despite everything, my body that lets me down in every other possible way could still create life. The friends I found in hospital who really GET IT; the friend, who having never even heard of Ehlers-Danlos Syndrome before meeting me, worked with me to raise funds for EDS UK; the friend I made at the library when we bonded over chronic illness, parenthood and polka dots; those who put their names on a letter to the local council about disabled access; those who take my daughter out for me when I’m too ill and exhausted to cope; the friend who spends an hour trying to leave because we’ve just got so much to say to one another and the lovely lady who took me in and gave me cake when I scattily locked myself out on my birthday.

These are the people without whom I would not be the me I am today. Wow. I’m the luckiest person I know.

people who aren't


Voluntary work saved my career – and my sanity

I was just 14 years old when I decided, having seen a documentary about rehabilitation and head injury, that I wanted to be a Speech and Language Therapist. Every educational decision, from that point, I made with this goal in mind; my GCSE and A-Level options, my work experience choices and of course my University application. In 2001, I graduated with a BSc in Speech Sciences and a licence to practice Speech and Language Therapy. In those days, there were plenty of vacancies for SLTs and it was not difficult to find a job. I wanted to work in London to be near my boyfriend (now my husband) and I applied for and was offered a post in a vibrant and exciting part of London with a fascinating and diverse paediatric caseload and a friendly and supportive team. And I LOVED it. I was doing the work I adored, with these amazing kids and their families and the most fantastic, inspiring colleagues. I was stressed and overworked but it was as though I breathed Speech and Language Therapy and there was never a dull moment. When I became ill, my managers and colleagues were super-supportive and, although they and I had to make many adaptations to enable me to continue to work, I took enormous comfort from the fact that I could still make a difference and add value to the team.

In 2011, things changed both within the organisation and the wider economic and political landscape. My immediate managers and colleagues remained supportive, and I had the backing of the Occupational Health Department, but I was put under increasing pressure to improve my sickness record – something which I could not do. Not only did this inevitably have a negative affect on my already fragile physical health, but the depression I had been managing for many years reared its ugly head once more and I became consumed by terror. My overriding fear was of losing my career. Of course, the financial implications were huge, but more than that I was scared of losing such an important part of myself, my sense of self-worth and identity. Who was I, if not a Speech and Language Therapist? I didn’t know how to be anything else.

With all of this going on, it also became apparent that my level of functioning was now so low that I required 24-hour care which my husband was unable to provide whilst also working a full-time job and taking care of our daughter. With heavy hearts, we put our flat on the market and moved in with my parents miles away.

Shortly after this, I was forced to apply for retirement on medical grounds. This was granted in November 2012. It seemed that, just 11 years in, my dream career was over and a part of myself was gone forever.

At around this time, with a vague idea of ‘becoming more involved in our new community’, my husband and I went to the Annual General Meeting of the local Playgroup (which our daughter was now attending). We hadn’t known what to expect, but found ourselves responsible for reviewing and updating the Playgroup’s policies. I came away from the meeting with the pleasant feeling of being useful again – maybe there was something helpful I could do after all. Over the next few months I enjoyed this activity. I liked having a work-related purpose, going to meetings and getting to know my fellow committee members. Gradually, my husband was less involved in the role as I took on more and more and my confidence grew. I kept careful records of what I was learning and gained enormous satisfaction from recognising how many of my SLT skills were relevant here. In September 2013, I put myself forward as Chairperson of the committee and was duly elected.

Since then I have also volunteered as a reading-helper at the local school and held fundraising events with friends in aid of Ehlers-Danlos Support UK.

And the very best news? Thanks to working so prominently in the local community I have been asked by the school to carry out voluntary work as a Speech and Language Therapist! So, from September, I will be returning to the career that I love. Not in quite the same way of course, but I am thrilled to be regaining a part of myself I thought was lost. And I’ve found a whole load more parts of myself that I didn’t even know existed.


Why resting is such hard work

One of the hardest things about having a chronic illness is needing to rest so much. Doesn’t sound so bad? We all enjoy a little R&R right?

Sure, but enforced rest because your body has ground to a halt when your brain’s still raring to go is no fun. When you have stuff to do, when people are depending on you. When you made a promise, a commitment and then a bunch of chemicals, proteins, genes, whatever, decide for you that it’s just not gonna happen.

And then, once you accept you’re just going to have to lie down, you surrender to another labour: trying to get comfortable. Chronic pain does not make this easy and with Ehlers-Danlos Syndrome, there’s barely a position where some joint doesn’t end up out of alignment. If longer periods of rest are required, muscle stiffness and weakness becomes an issue and a kind of mini-rehab has to be undertaken before you can get up again – gentle stretching and repositioning of joints that have ‘popped.’

I used to spend these rest periods frustrated; resenting my body and begging it to just step up and do what it’s supposed to. At the same time, I would dissociate from my body and perceive it as a cage, trapping me into an inert, passive existence. Rejecting my body in this way meant I was at war with it. With help, I have learned a different way. A psychologist introduced me to Mindfulness which allowed me to connect with my body again, to accept my symptoms as being part of myself and to feel compassion for my body in its pain. Now I work with my symptoms rather than against them. I take comfort in knowing that when I’m resting, I am taking care of myself and I’m teaching my little girl to prioritise taking care of herself and her health. I hope, a legacy of love. why resting i s such hard work (1)

A new labour of love

My world turned upside down in 2006 when I became very unwell and disabled – seemingly out of blue. It turned upside down again (but in a good way) in 2009 when
my gorgeous daughter was born and again in 2012 when I became so ill I was forced to retire from my beloved career in Speech and Language Therapy and follow a different, and at first, very scary path.

Since then, I have learned to live this ‘new’ life and adopt it as my own. It no longer feels as though I’m living someone else’s existence by mistake and that at any moment it will all go back to how it used to be, or should have been. I’m no longer defined by just one aspect of myself – my health.

I’m a person, I’m a woman, I’m a mother, I’m a wife, I’m a friend, I’m a sister, I’m a daughter, I’m a business-owner, I’m a chronically ill person; I’m a person with a disability. It’s hard, but I have learned to fulfil all these roles with love for them, others and myself.

This was my first blog post, A new labour of love.A new labour of love