September 12, 2022|Kim's Blog|
Disabled and down but definitely not out – A story of hope after a year

How would you feel if you were suddenly diagnosed with a progressive, incurable, debilitating and potentially disabling disease? How would you cope with the sudden onset of a physical disability and all the mental stress it causes? They say that life happens when you are busy making other plans. I found navigating my business through Covid tricky enough. So physical illness was one black swan I simply didn’t anticipate. So I’m going to be candid and share my personal journey on being disabled and down but definitely not out. Maybe others who face a similar situation will find some comfort in reading it. Disabled and down but definitely not out – A story of hope after a year.

Where I was before this happened

My personal values have always been: intelligence, integrity and independence. When people were asked to describe me they would comment on my boundless energy and enthusiasm, my professionalism, my positive attitude to change and my prolific output. My consulting, coaching and writing (that’s seven books so far) – in the UK and overseas – was focused on developing and motivating people to achieve their potential and for their businesses to flourish.

I’ve always been blessed with good health. I was super-fit. I’ve done martial arts, Pilates and yoga for years. I was a frequent flier at the gym. I walked at least five miles a day, completed around four fifty-minute work outs a week and went dancing regularly. I journeyed around the world – often as a solo traveller. I sometimes sat quietly on a riverbank to pursue my passion for fishing. I was a healthy weight and my alcohol consumption was significantly below the Government guidelines.

My kids had (finally) flown the nest and were established in their careers and lives. I lived alone in a large semi—detached house with a wonderfully peaceful garden, two small dogs, a cat and some fish. I was excited by the future and the next phase of my life.

I had plans to continue to grow my consultancy business, complete the final stages of my training as a psychotherapist/counsellor, more travelling and finally the prospect of enjoying some “me time”. Life was full. Life was full of possibilities. Life was good.

Onset of the disease – September to November 2021

There was no real warning. But I remember a day in July 2021 on a trip to London Zoo. I was limping a bit. I put it down to overexertion at a workout. I pushed through the niggling pain and walked many miles around Central London. I didn’t realise that it was a harbinger.

At the beginning September 2021 my left knee really played up – it was swollen, hot, hurting and didn’t want to bend. I could hardly walk.  Yet I couldn’t sit still. Fortunately, my son is a former physiotherapist and he presented me with a funky red spotted walking stick. So I took some painkillers, kept calm and carried on. After a couple of days the knee pain eased.

But then my right hand was painful and failed to work properly. I assumed I’d strained it using the walking stick. Three days later my right hand recovered but then my right knee stopped working. After a few days the pain and stiffness eased. But then my left hand swelled up painfully. It felt like an unseen malignant force was surging around my body – stopping regularly to cause havoc at each joint.

So I sought seek medical advice. The lingering Covid situation meant that it was five weeks before I spoke to my GP. By this stage, I had a long list of times when different bits of my body didn’t work and where I had been woken in the night by excruciating pain.

She was very concerned. Probably more so than I was. She congratulated me on stoically waiting five weeks for the call but advised that my symptoms suggested it was an emergency and I should have pushed for an earlier appointment.

She arranged a physical examination the next day, blood tests the day after and a series of x-rays and ultrasounds the week that followed. Thank God for the NHS! She felt that whatever was happening may have been kicked off by the Covid vaccine and she urged me to complete a yellow card report.

As the test results came in, it didn’t look good – so she referred me to a consultant rheumatologist at the local hospital. I received an appointment within two weeks. I counted my blessings as I knew that Covid had caused havoc with NHS waiting times and resources.

Meanwhile, managing every day tasks became increasingly difficult. For example:

  • Painful knees that refused to co-operate
    • I was walking like a 90-year-old – hobbling slowly along the street. My two dogs looked bemused as they were used to speed-walking around my local town. Neighbours stopped to ask whether I was OK.
    • Stairs became my enemy – going up was tricky enough and coming down almost impossible. I realised that public transport is much less accessible than you think.
  • Swollen and painful feet
    • My treasured collection of boots and shoes became just that – a collection. My swollen and misshapen feet refused to go into anything except battered old trainers.
  • Pain, swelling and loss of the use of my hands
    • I couldn’t use my hairdryer or hair straighteners – so I resorted to my natural curly style. I had my longer locks chopped into a more manageable bob.
    • I couldn’t tear open the cat food sachets. And using scissors to open them was also tricky. Hungry cat!

Diagnosis and deterioration – December 2021 to March 2022

On 30th November – hardly able to walk – I met my consultant. I’d managed to get my hands on some strong painkillers that also reduced some of the inflammation (over-the-counter remedies such as Ibuprofen had no effect and prescribed medicines such as Naproxen were equally ineffective).

I told her that my (former physiotherapist) son had given me some exercises to counteract the muscle damage I had done trying to walk with painful knees. Apparently, my brain had switched off my quad muscles!

The Consultant examined all the results – and ordered another battery of tests including an MRI (not something I want to experience ever again). She gave me the news that I had Rheumatoid Arthritis (a progressive auto-immune disease for which there is no cure), gave me a steroid shot and prescribed some heavy-duty medication.

There were numerous frightening warnings with the medication. And the news that they were likely to take at least three months to have any effect and provide relief. To say I was shocked was an understatement.

Some people who knew about RA said I should hold off taking the medications. This was well-intentioned advice – they knew that often RA medications can create serious side-effects and often only work for a few years. And then you need different and stronger treatments. And sometimes you run out of options. At this stage I still thought that my determination and willpower would get me through the pain and immobility. How wrong was I! I have discovered that mind over matter doesn’t always work.

In the run up to Christmas, things got pretty bleak. For example:

  • Going up stairs (and I don’t have a downstairs loo) was slow, painful and now involved ungainly movements on all fours. I reluctantly stopped going out for fear that I would embarrass myself having to tackle steps in public.
  • Getting into and out of the bath involved the risk of falling over and injuring myself further. Yet standing in the shower was equally precarious. At times, I had to ask my daughter to visit and sit outside the bathroom, regularly calling out to check I was OK. My mobile phone is now always within reach when I’m in the bath.
  • When you can’t hold a toothbrush or squeeze toothpaste from a tube, you learn how to clean your teeth with mouth wash.
  • I was unable to wear trousers as they caused constriction on my knees and an intolerable level of pain and immobility. I took to wearing skirts and dresses (and suffering cold legs as tights were also uncomfortable) and bought some wide-legged trousers on-line.
  • If you can’t chop an onion, your cooking options are limited. I have since discovered the joy of frozen chopped onions.
  • You only fill the kettle with enough water for one cup of coffee. Because otherwise you can’t lift it and risk scalding yourself in the process.
  • The fatigue was overwhelming. I wanted a nap at 3pm. I was falling asleep at 8pm in the evening whereas before I would rarely go to bed before midnight. Yet when I went to bed, sleep eluded me as I failed to find a position where my legs and hands were comfortable.
  • I found myself crying in pain at the end of the working day. I was hardly able to get off trains and into taxis as I battled my way home from client meetings in Bristol, Cheltenham, Birmingham and Manchester.
  • I lost over two stone in weight – and went down two dress sizes. At first I was pleased with the weight loss. Then I started to look old and frail and too thin. And I was incapable of getting out to shop to buy new clothes.
  • The constant tests and health monitoring continued – every two weeks at the hospital for blood tests, blood pressure monitoring and weight checks. And I was copied in like a bystander on a flood of technical letters between my consultant and GP.

There were some real low points

  • Watching helplessly as my adult kids prepared and cooked Christmas lunch as my hands weren’t working so I couldn’t peel vegetables or lift anything. On Christmas night I gave in and started taking the Methotrexate. You have to take it with folic acid to prevent hair thinning and hair loss as it’s a cancer drug.
  • One evening, having to ask my dinner companion (a former client) to cut up my steak in a top London restaurant so that I could eat it. And then only by using a fork.
  • Half-way through trying to cook myself an evening meal, I had to pop into my neighbours to ask her to open the tomato sauce for me. Gadgets to assist with opening jars didn’t help.
  • Unable to step up to put things into high cupboards or reach items and books on top shelves, things started to get a bit cluttered at home. I bought some flowers to cheer myself up – only to realise that I couldn’t reach the vases.
  • Screaming in pain during the night with my hands hurting so much I wondered whether it would be less painful to have them cut off. Wandering around the house in the middle of the night – drinking cups of caffeine-free tea – and praying to God to make the relentless pain stop. Being shocked at intrusive thoughts that my life was no longer worth living.
  • Embarrassment in stores as my hands didn’t have the dexterity to get my purchased goods into my bag or to remove my purse to pay the bill. Feeling guilty for keeping the staff and other customers waiting.
  • I couldn’t change the sheets on my bed – my hands didn’t have the strength to lift the mattress. I had to ask my daughter and daughter-in-law to visit and help.
  • Needing to go into a local town but avoiding the bus as I wasn’t sure I could step up onto it. Then worried about there being a lack of seats and the need to stand up when I knew my hands wouldn’t be able to grip the handle to stop me falling over.
  • Not being able to take my dogs out for a walk as I couldn’t attach the leads to their collars.
  • Taking ages to get into an Uber to transport me to hospital and worrying about the loss of income for the poor driver as he waited patiently. Starting each taxi or Uber journey with “I’m sorry but it may take me a while to get in as my legs don’t work properly”.
  • Looking stunning (allegedly) when I joined my friends at a rare attempt to go out dancing. And suffering the humiliation of having to use the glass-sided disabled lift – in full view of everyone – to get up to the venue.
  • I couldn’t carry a bucket so my fish didn’t get cleaned out for ages. They swam around in what looked like murky green soup for a while.
  • Trying to work on a critical work document when my hands and wrists were immobilised with swelling and pain. Pushing on to try to continue before giving up and applying ice to improve movement.
  • Failing to unplug laptops or other appliances from power sockets as my hands had no grip.
  • No longer being able to go fishing – my hands didn’t have the strength and dexterity to set up my rod and lines and there was no way I could handle the fish I caught without damaging them.
  • Struggling to move my rubbish and recycling bins to the front of my drive so they could be emptied.
  • Seeing the horror and pity in people’s eyes as they watched me struggling to get out of a chair or to stand up.

Despite my incredible resilience I started to get miserable and down. I wondered whether I would be able to continue to work. And without work I would have no income. Then I wouldn’t be able to pay the mortgage. Then I would become homeless.

I started to wonder how I was going to look after myself – and at what stage I might need permanent and regular carers. Or whether I would need to go into a care home. So much for my personal value of independence. My mental health started to suffer and I feared I was slipping into depression. As my mood declined, so I kept myself away from family and friends. And isolation increased those negative thoughts so it was a downward spiral.

You feel so helpless when you can no longer rely on your own body. RA is an auto-immune disease which means your body is attacking itself. How do you fight your own body? You can’t blame your own body or get cross with it as you might with an invading virus or cancerous growth. And you know that whenever the pain is bad, the inflammation is doing damage to your joints. Most likely irreparable damage that will cause even worse disability. So you worry about it even more. And you know the stress will make the whole horrid cycle worse. It was awful.

As a psychologist, Mental Health First Aider, Trustee of a mental health charity and trainee counsellor I was aware that my mental health was suffering. I knew I had to take action to prevent a further slide into depression and worse.

My immobility issues meant I was unable to travel into London for a weekend of my counselling course. And, as attendance is one of the criteria for successful completion and accreditation, I started worrying about whether I would be able to complete the training programme and finally qualify. Another potential loss for me as a result of the disease.

The 1st February was truly awful. I had hardly slept the night before as I had pain in both knees and hands. So I was exhausted. I was still suffering from that pain – despite almost overdosing on painkillers – and my hands wouldn’t operate my PC. I was due to deliver an online training session.

My technical co-host was concerned at the way I looked. I burst into tears admitting that I was feeling sick and almost unconscious with pain. I said that I feared I wouldn’t be able to deliver my usual level of energy to the delegates. Yet I desperately wanted to avoid letting the client and the delegates down. She was a real Sweetie and suggested without hesitation that we postpone the session – which we did (my thanks again to the delegates who were gracious about the disruption to their busy calendars). I am astonished and proud to report that this was the only instance where my health prevented me meeting my professional and work commitments.

A local friend answered my emergency call and drove me to and from the hospital. Another friend came over that evening and made me a cup of tea while he prepared some food – as I had been unable to feed myself that day. I started on my second treatment that day – Hydroxychloroquine.

Sometimes it all got too much. The ongoing dispute between my GP and Consultant at the hospital about who was responsible for my medication became ridiculous – system incompatibilities meant not all of my records and tests could be shared. On one occasion I was so stressed at the prospect of running out of meds – and being passed back and forth between GP and hospital – I simply cried. My usual resilience was gone. On that occasion my son stepped in and called the hospital for me and I then had to interrupt another work day to go and collect the meds from the hospital.

There were, however, some small moments of victory after that day – despite the continued pain and immobility:

  • Managing to mow the lawn – although it took about three times longer than usual
  • Being able to iron a shirt – and then tackling the rest of the ironing
  • Learning that most of my favourite restaurants have accessible loos that don’t require you to go up or down stairs
  • I purchased a light weight and cableless vacuum cleaner – why didn’t I do this years ago?
  • My two small dogs starting to go down the stairs one at a time – sitting on each step and waiting for me to lower myself down (Bless!)

Recovery and a return to normal – April 2022 onwards

It was on a routine trip to the rheumatology nurse for a check-up at the end of March 2002 when things started to improve dramatically. Some six months after my serious illness began. I was asked to wait to see the Consultant.

I explained that I was still taking the strong painkillers (Diclofenac) three times a day that neither the Methotrexate nor the Hydroxychloroquine seemed to be doing much to help. I explained that whilst my knees were a little better – and that I was walking three miles a day – stairs still challenged me and my hands and wrists were worse in terms of pain, grip strength and dexterity.

Until that conversation with the Consultant, I hadn’t realised quite how low I was. The brain fog, the constant fatigue, the disrupted sleep, the inability to use steps and the negative impact on my self-confidence, mood, hope and energy…

I realised I was close to tears as I asked her “Is this as good as it will ever get?”. And I remember her saying “No, I think we can get you feeling a lot better”.

She prescribed a third treatment – Sulfasalazine – another medication that takes three months to start having an impact. But she also prescribed a strong course of steroids – Prednisolone.

This stuff is amazing because the moment I started it I was able to dispense with the painkillers. The fatigue, pain, brain fog and immobility disappeared instantly. I felt like my old self again – full of optimism and energy. In fact, I had even more energy than usual and felt like the lead character in the film “Limitless” – working, socialising, tackling chores around the house and yes, even a return to the dance floor!

As the steroid dose reduced, I had some minor knee discomfort but nowhere near as bad as it was before. So maybe all the medications were starting to take effect. I was even confident enough to book an overseas holiday in August and a trip to the Middle East some months later.

I have discovered that many people I know also suffer from this dreadful disease – and yet manage to live a relatively normal working life – for example: the former Managing Partner of a large law firm, the CEO of a leading higher education organisation and an author and world class motivational speaker.

There is, of course, a risk that disclosing my disease may prevent clients or others from establishing or retaining contact with me. But my desire is to be brave – to share my vulnerabilities as urged by the marvellous psychologist Brene Brown. But most importantly to raise awareness of the millions of RA warriors who fight this disease every day of their lives.

By the middle of June I’d finished the course of steroids. There were only minimal limits on knee use and I was back to walking 10,000 steps a day and doing everything that I did before the onset of the disease. I had exercises for my knees and legs from a physiotherapist and also from a specialist hand physiotherapist.

In August I travelled to Sardinia and had a marvellous holiday where I walked and swam and did pretty much all that I would usually do on holiday. It was a turning point as I felt that I was back to normal and independent again. Work has returned to pre-Covid levels and I remain a fully functioning and participating member of society. People only notice a difference when I am somewhat less than elegant as I stand up from a chair or tackle those pesky stairs.

Lessons learned

Over the past year, I’ve learned some powerful lessons from this illness:

Gratitude – I am much more grateful for everything now – for my family and friends, the home I live in, my work, my studies, the clients who continue to use my services and even the birdsong and the sunshine. Each day I am grateful when I wake up pain-free, clear-headed and mobile. More than anything, I am grateful that I live in the UK where the NHS is literally a life-saver.

Self-care – I am more conscious of the need for self-care now. I ensure that I eat properly and regularly, that I get enough sleep, that I pace myself during exercise. I maintain my boundaries and say “no” sometimes when in the past I may have allowed myself – in professional and personal life – to become overburdened.

Positive attitude – I have not spent time fretting about “Why me?”. I am obviously one of the adaptive third and when faced with adversity and change I look to the future rather than the past. Psychologists know the importance of a positive attitude (in fact, the positive psychology movement focuses on this).

Things happen for a reason – Covid had a dramatic impact on my business. Like other businesses, I moved to online working. If I hadn’t done this I would have had a much tougher time when my pain and immobility were really bad. Remote working made digital training and meetings more acceptable – so the impact on my work of the worst disability was reduced.

There’s always hope – No matter how bad things get, there’s always hope. Your mental reserves might be tested but things WILL get better and you CAN succeed.

Awareness of disability – During this time, I also developed huge admiration for disabled people who encounter and overcome the millions of tiny challenges that they face every minute of every day of their lives. Some people are diagnosed with RA in their teens and twenties – I am inspired by their ability to make the best of things, fight limitations and systems (and attitudes) daily with good grace and live a full and productive life. Some manage to raise their kids while suffering almost impossible pain and immobility. I am in awe of them.

And I reflected that many diversity and inclusion (D&I) initiatives focus on topical and important subjects like ethnicity and sexual orientation. Yet disability still causes some embarrassment and awkwardness. I wonder whether, in the future, I might devote some time and effort to raising awareness and increasing the attractiveness of being more inclusive of disabled people.

So, my journey continues….and it typically looks pretty normal. Not all disabilities are visible. My illness does not define me.

Helpful resources

Thanks for reading!

I would like to thank my father and my amazing adult children for their constant love and support – they are always there for me and always helpful. And I would not have survived without the close friends who rallied around and made sure that my efforts to become a recluse were thwarted.

I would also like to thank my clients – many of whom didn’t know about my battle with this awful disease. But they noticed when I limped into a room or opted for a virtual meeting rather than my preferred in person presence.

But I told some clients – and I even offered to step back from my work with them so they could hire an “able bodied” consultant. But they were all overwhelmingly supportive and stuck with me. This is not an exhaustive list of my clients that stuck with me during the dark days – but they are truly businesses that embrace diversity and inclusion:

  • BDO
  • Bishop Fleming
  • BPE
  • Cambridge Marketing College
  • Dutton Gregory
  • haysmacintyre
  • MBL
  • MHA MacIntyre Hudson
  • Managing Partners Forum (MPF) 
  • Pennington Manches Cooper
  • PM Forum
  • Propeller
  • Remit
  • Taylor Hartnell Cook