It’s almost three years since my ME relapse. Relapse for me meant going from what I considered to be fully recovered to virtually housebound again.
I lost my career as a Speech and Language Therapist to ME. My Boss told me not to leave it too long before I returned to the profession and I had no intention of leaving it longer than I needed to. That was twenty years ago…
My early days and nights were spent in bed. My Occupational Health doctor couldn’t have been more wrong in assuming I was just looking for a way out of work. I was ill and desperate for help to get me well and to contribute to society again. Even in the dark endless days and nights stuck in bed, I needed to ‘do’ something.
Sadly, the prejudices and assumptions against chronically sick and disabled people haven’t improved over the decades. The political agenda feeds the media appetite for the sick to be seen as malingerers who are work-shy scroungers that are a drain on society. Whether you access the benefit system or not it has perpetrated profound social divisions with emotional consequences. The true cost of those that rely on benefits is immense.
Initially the days and nights merged into a one as endless sleep blacked out any potential aspirations but more waking hours only brought more frustration to ‘do’ something again.
It took time to adjust to the new reduced version of me. Everyone with ME has to go through this painful process and I admire the countless numbers who have lost successful careers and rediscovered themselves as writers, artists, volunteers, or who use their limited, precious energy supporting and advocating for others. Indeed I have full respect for anyone who goes through chronic illness. Just getting from one day to the next can be a challenge enough.
I gave office support for my husband. Initially 20 mins a day was all I could manage before I had to return to bed. However, over time this developed into a full PA role. They weren’t conventional hours that I worked but I fulfilled my contracted hours and my husband was always incredibly understanding and supportive. We were a good team and in 2010 we started our own business (SajeImpact). I had been virtually fully fit (99%) for several years by this point and the future possibilities seemed limitless again.
By 2013 all those possibilities were engulfed by my full blown relapse and I was back to square one again. Recovery seemed slower and cognitive difficulties more pronounced, but I was able to follow a long and undulating road of slowly piecing life back together again.
It’s true that you learn to appreciate what you’ve got when you thought you had lost it. It’s also true that new opportunities arise through loss and I am grateful for the people I have connected with and lessons I’ve learnt along the way, not least through my Ignite discipleship course last year.
Volunteering was my focus for this year. It seemed a good half way house for me. I could give without fear of over-committing. Just as things were really getting going I had another unexpected bolt from the blue! This time, thankfully, it wasn’t a relapse but a job opportunity!
The job was a temporary fixed term contract as a PA for an organisation that I’m passionate about and an individual that I hold in high esteem. On paper, I met the criteria and was more than qualified to do the job and after prayerful consideration I applied. I thought I had nothing to lose. How wrong I was! It wasn’t until my application was submitted that I realised how much I had to lose! Working from home alongside my husband is one thing but going to work to fulfil contracted hours is quite another.
I had been feeling around 80% well for a good year with careful pacing and frequent rest but I still had lots of mini flare ups. Was that well enough? How do you know when you’re ready to return to work? Would the new challenge make things better or worse?
I also felt very vulnerable. I didn’t even tell all my immediate family about the interview. The me on paper oozed capability but the physical me screamed liability! Both were 100% true yet seemed irreconcilably apart.
I knew I had to be 100% honest in my interview about all my difficulties and limitations. I only wanted the job if I could be a genuine help and not a hindrance but I could offer no guarantees. I was so honest I almost questioned what I was doing in an interview room myself!
Preparing for the debrief phone call was agonising. I knew there were other good candidates but in my head it all came down to whether someone would see me as an asset or a liability and it felt a fragile place to be.
The phone call came the following day and we were straight into weather pleasantries so I started to prepare myself for the inevitable, gentle let down. The expected words didn’t come and I was offered the job! I then realised I hadn’t prepared for this response and I think I managed a blubbering, tearful thank-you although I can’t be sure!
The feeling was incredible. This wasn’t about having a job. I realised in that moment it was about being validated. Despite knowing my limitations and understanding the risks, they were still prepared to take me on and support me in every way they could to help me to do the job to the best of my ability by safeguarding the risks. I couldn’t have asked for more.
Many people reacted to the job offer at face value. It was after all just a part time PA role to cover maternity leave. I laughed off comments such as “about time too!” and I discovered that many people thought ‘working from home’ was just a euphemism for ‘lady of leisure!’
None of it mattered, I was ready to pop the champagne and put the bunting up! For those that knew and understood my journey, loss, struggles, disappointments and frustrations, they knew what this meant and shared my celebrations and it felt good.
Speech Therapy is still a long way out of reach for me physically. (I still find intense speaking and listening particularly exhausting) It may be that I never return but I’m grateful for new opportunities.
Working 5 days a week will probably push me to my limits and I know all other commitments will need to be reigned back in again to allow me function as well as I possibly can (including blog posts!) At least this time there will be an end date that I will have control of.
Despite the risks I’m excited about the new challenge, going OUT to work, and being part of a team again and I just pray that my body behaves itself for the next 9 months! At some point, I’ll keep you posted with how I got on!