‘Forcing myself to keep going became a way of life’. One client’s personal story.
Background:
Symptoms started in 2016, when I accepted a new role at work with a huge remit and responsibilities. Due to a number of factors, I felt I had something to prove, and I set out to achieve the impossible.
Each day was a whirlwind of activities, expectations and deliverables. Unable to sleep past 4am, my mind a constant whirlwind of things I ‘needed’ to do. Taking calls late into the evening from overseas colleagues, starting work at 5am to stay on top of the relentless workload, striving to find ways around various challenges; or projects I’d committed to as a school governor.
Filling my ‘free’ time at weekends with family activities or travelling for events or meetings at work the following week – often working 16-hour days sustained by caffeine and chocolate and overwhelmed by guilt at being an absent mother. Pushing myself relentlessly and berating myself if I wasn’t able to ‘solve’ everything.
By 2018, aching and tiredness became my new norm, I just about managed to get through each day. Mentally, lists became the only way that I could function, I had lists for everything at work and home. I’d spend every Friday evening sitting by the pool at my children’s swimming lessons, organising and prioritising my lists for the following week. Feeling a mild sense of panic if something came up that I ‘needed’ to do if I didn’t have my notebook in my hand. Craving quietness and order so that I could ‘get on top of things’.
I continued to push myself relentlessly, ignoring what my body was telling me. Anything beyond trying to deliver what I was tasked with at work, caring for my children, or the most rudimentary self-care were abandoned.
I struggled to sit down or get up, to reach anything low down, or to walk upstairs. I stood up in meetings and went to bed as soon as my children were settled at night to try to overcome the constant tiredness.
I remember waking with dread each day knowing what I need to do that day, in pain and unable to get comfortable or back to sleep. Forcing myself to keep going became a way of life.
I answered queries of concern from those close to me with ‘I’m fine’. I wasn’t fine though, and I knew I wasn’t fine. I was often close to tears, and got through my days by drinking coffee and eating chocolate. Back pain escalated to widespread pain and stiffness, my joints and muscles dull and heavy. Physically I felt twice my age.
Going to the GP
Seeing the GP felt like something I didn’t have time to do, and when I eventually did, her suggestion of signing me off work was met with tears and a whole list of reasons why it wasn’t possible. It took my husband’s input and a rare walk together down the canal to realise that they were right, and a huge sense of relief that I had a short respite from the relentless treadmill.
I returned to work and fitted the medical appointments around my work commitments, treating them like a meeting arriving with a list of bullet points of everything I was looking for answers for.
The diagnosis of Fibromyalgia was met with a sense of relief at having a diagnosis and a reason for my pain and tiredness. In my mind, a diagnosis meant there was treatment and I was keen to get started.
The relief soon turned to doubt and questions as he explained that Fibromyalgia meant ‘hypersensitivity to pain’. I immediately questioned this idea, taking it very literally. I worked in a high-paced demanding environment and saw myself as strong and driven. I felt ashamed at being diagnosed with it, felt those around me would see it as weakness, and tried to justify and explain it to others.
A diagnosis of Fibromyalgia
A flippant remark about Fibromyalgia being ‘known to be a made-up condition in the medical world’ from a Physiotherapist that I knew and respected compounded this view further. I felt like I had something that was considered to be ‘in my head’; yet the pain and tiredness were real.
I know now that Fibromyalgia is a much more complicated condition than simply being hypersensitive to pain. It took 18 months, a huge amount of research, and a repeated diagnosis by others, to begin to accept that I had Fibromyalgia. Much harder to accept is that the fact that there is no magic cure.
Being prescribed medication that made me hazy, sick and incapable of making even the most basic of decisions compounded my situation further, and I sat in tears in medical appointments feeling powerless and frustrated. I’d return home and do hours of research, looking at other scenarios and explanations, seeking something with a proven treatment and road to recovery.
Being diagnosed with Rheumatoid Arthritis was easier to accept. In fact, I was relieved - it felt ‘real’ and credible. Widely documented and researched, it felt like I had a ‘label’ that explained my situation to myself and others.
I tried a number of different medications starting each with hope and positivity, this could be ‘the one’ that was life changing. Dealing with the side-effects was a means to an end.
My professional role and all that it entailed was a huge part of my identity. In 2019 I felt I had no option but to leave after 18 years.
Leaving work and an identity crisis
I didn’t know who I was anymore. I’d lost a huge part of my identity and the way I lived my life (at a hundred miles an hour). I felt powerless against unpredictable energy-limiting health conditions. I spent hours awake in the night uncomfortable and in pain going over ‘what ifs’ and potential solutions/ways forward, considering new careers and how I might be able to make them work.
Planning and organising had always been the bedrock of my life; yet now I found myself dreading commitments and engagements, wondering how I was going to be, was I going to be well enough? Could I put up a positive front? Feeling the endless need to explain and justify why I was no longer working, berating myself extensively if we had to leave early, or actually finding I wasn’t well enough to make an engagement. Dealing with the strong inner-dialogue about how I ‘should’ be going, ‘should’ be staying. More frequently I’d ‘force myself’ to go, be positive, appear normal. Yet at huge cost – leading to a boom/bust cycle.
Moments from that time that remain with me include looking with horror at a display wall of implements that I naively associated with being very elderly, that a well-meaning Occupational Therapist thought I ‘might find useful’; being in a hydrotherapy group with other Fibromyalgia sufferers and striving to position myself in a role where I supported others and chatted with the Physiotherapists rather than relating to others with the same conditions.
Medical appointments were brief and the RA nurse who was my main contact was short and brusque. I often left in tears. I felt unheard with no clear way forward.
“I felt unheard with no clear way forward. ”
Covid brought the introduction of online appointments, and for the first time a release from the pressures of the ‘daily routines’ of daily life. All social engagements and commitments were cancelled I no longer needed to feel the constant guilt of not feeling well enough, released from the requirement to ‘force’ myself to do the things that I felt I ‘should’ do, or deal with the inner dialogue berating myself for not being able to.
Vitality360 Programme:
By 2022, I still struggled to talk about my situation or previous professional life without becoming upset. I had explored options for moving forward professionally but struggled to see how I could make them work with the health conditions I had.
I had started to accept my diagnoses but I was stuck in a cycle of boom and bust with managing my conditions and flare-ups. I continued to strive to find solutions, but realised that medication alone wasn’t going to provide the answer. From my research I knew there were things that I could do, and I had explored various complementary therapies including seeing a chiropractor, various physiotherapists, dietary changes, acupuncture, pilates and aqua aerobics. I started each one with hope and positivity – maybe this was the part of the jigsaw that was missing, maybe this was the solution?
Despite having an interest in psychology, I hadn’t realised the part of the jigsaw that was missing was how I talked to, and treated myself.
“I strive to be the best mother/wife/daughter/friend that I could be to others but I didn’t extend the same kindness to myself. I hadn’t realised the huge extent that my thoughts/feelings and inner dialogue had on my overall health picture. This is where the Vitality360 programme came in. ”
After initial fact finding and investigation, the structure of my programme was defined and determined to be a combination of sessions with a Psychotherapist and sessions with a Career and Employment coach.
Both therapists that supported me were approachable, empathetic and people that I felt understood my situation. The whole process felt like talking to an aligned colleague or friend who would listen, but would also gently challenge my way of thinking to re-frame and consider things in a different light.
Key things I learnt on the programme:
To recognise how much of my sense of self-worth was tied to my previous professional role, but also to recognise the costs of this. Consider this in how I move forward.
To purposely connect my mind and body. Not to dismiss what my body is telling me – to see the value and worth in giving time to myself. Put my needs further up the list. Conversely, to recognise the ‘cost’ of striving through.
To recognise that pacing can be key to having a level of control over my health and wellbeing. Understand that adrenaline can mask pain, caffeine can mask exhaustion (both of which were fundamental to how I lived my life). Recognise the boom/bust cycle.
See the value in rest and pacing as a way of ‘putting energy back in’.
To keep how I treat myself at the heart of everything that I do. Recognise the conflict/ challenge of this. Understand the concept of thought-diffusion – challenge, step back and re-frame thoughts.
Give myself permission to ‘get things wrong’.
Create concrete boundaries based on what my body needs. To accept that this will feel uncomfortable and to recognise the cost on my health of ‘pushing’ and ‘striving’ through.
To try to be kind to myself – to avoid ‘I must’ and ‘I should’ in inner dialogue, remember ‘who other than you is saying that you should do this?’
During flare-ups – recognise that my window of tolerance is thinner, and that I am likely to have heightened sensitivity physically and emotionally. Focus energy on feeling better. Give myself permission/time to ease off the pedal and recover.
To see the benefits in grounding exercises and breathing exercises and actively incorporate this into the routine of my day so that it becomes a habit.
In moving forward professionally:
To recognise which aspects of my career have been positive and areas that I could build on in the future, ideally in areas that ‘make my heart sing’. Reposition my CV and job search accordingly.
To consider what is realistic and sustainable and that it may be about ‘stepping stones’.
Re-frame my inner dialogue and prepare for conversations about working with energy-limiting health conditions using terminology such as: ‘I can offer you….’ Or ‘I’m not available until…’
Drawing boundaries and not feeling the need to explain.
Where I am now after the rehabilitation programme:
I now realise the huge value of therapy. Medication and exercise are important in managing energy-limiting chronic conditions, but the part of the jigsaw that was missing was recognising (and truly believing in), the value of pacing and self-compassion/care.
The sense of powerlessness over what are unpredictable conditions has been replaced by a feeling that I do have some level of control by pacing myself, listening to my body and actively demonstrating self-compassion and care.
I now realise that although life will never be the same again, the life I was living wasn’t healthy or sustainable and didn’t make my family or me happy.
Having chronic health conditions is of course challenging, but it can also be a catalyst for positive change.
“I now feel able to approach my professional future with hope, focusing on the positive aspects of my professional experience and hopefully finding a role/roles where I can make a difference and add value (and by adding value - feel valued). ”
I will strive to continue to incorporate the tools and techniques I have learned on the programme into my everyday life.
I’m very grateful to have had the opportunity to have been on the Vitality360 programme and hope that others will have the opportunity to benefit too.