A murderous scream pierced my sleep, and I woke, my heart pounding, every sinew tense as my brain scrambled to register which of my children must be in trouble. And then I realised the howl was coming from my own mouth, it was me screaming like I was on fire, and I couldn't stop. The agony that wracked my body was unbearable. It felt like my skeleton was being burned by acid, melted, hot and agonising. I was swollen, with distended limbs, every breathe causing me to cry out, my head dazed by pain. It was winter 2006, and this was my first severe attack of Rheumatoid Arthritis.
For those of you who don't know, Rheumatoid Arthritis (RA) is unlike other forms of arthritis in that it is an autoimmune condition that behaves in the body like civil war, so that the body attacks itself. To protect the main organs from an over-zealous immune system, the body cleverly deflects the attacks towards the joints as the safest 'shock absorber', often causing irreparable damage, inhibited movement and always, always pain.
I had been so well since getting into addiction recovery in the 90s, but recently I’d had a couple of difficult years with symptoms that had been variously diagnosed as metatarsalitis, gout and even a virus with as many solutions, none of which had worked. I had suffered miscarriages (which I now put down to the overactive immune system annihilating everything that it couldn't identify as its own), I felt ill all the time, and I really struggled energetically, which was very unlike me. Finally a simple blood test proved the diagnosis, and my world was turned upside down. I faced a future made so tiny by pain that I could barely face the prospect of living.
It was devastating to my family and my beloved children who were abandoned by their mother at no fault of her own when they were just 6, 4 and newborn, from an illness none of us knew anything about. Literally overnight I went from being a fully active hands on mum with boundless energy to being bedbound for nearly 9 months. For a while I believed I would never walk again, and considered life without ever seeing the inside of a forest again. An odd idea, and strange how powerfully that loss struck at that time. I lay in my bed, with my limbs awkwardly laid out, each one supported separately to minimise the pain, I couldn't tolerate even the sensation of the lightest sheet on my skin. I gritted my teeth and insisted my children didn’t avoid me with their sometimes clumsy touch as there was no way I ever wanted RA to come between us. I would lie there with big fat tears rolling down my cheeks, unable to wipe them away as the pain to move my hands was too great. I couldn't brush my teeth, brush my hair, scratch my skin or use toilet paper, I couldn't walk and I could barely breathe without crying out. I felt reduced to nothing.
In times of relief I would stare at the ceiling, listening helplessly to the world go on around me, or welcome the distraction of a phone call, if someone would hold the phone to my head. An old friend, also in recovery, suggested I applied the 12 step model to my illness. I felt like screaming because this was different. It wasn’t like addiction, it wasn’t my fault. Rheumatoid Arthritis had a deadly grip of my body and I felt there was nothing I could to do. But as I lay there engulfed in my despair and self-pity, my body held hostage by pain beyond anything I had experienced, (and I had had three natural births!), I began to roll the idea over in my mind. What I came up with challenged my attitude, and I realised the profound nature of powerlessness. I recognised the resentment I held towards my body for betraying me. I began to consider what it might mean to surrender to help, to accept the reality, to be kind and supportive to myself, to be curious and to remember what I was grateful for.
I also realised that I was still blaming myself for my addiction.
I tried everything including acupuncture, massage, Chinese herbs, adjusting my diet, extremes of hot and cold stimulants; I considered bee stings, used hot wax pots, was on around 80 mg of steroids and fistfuls of pills including chemotherapy drugs as I crawled through every painful hoop required by NICE guidelines.
At the same time my attitude began to change. Instead of feeling hopeless and defeated, I applied myself to really considering the concept of surrender, not to the illness but to help. I began to consider my experience as if on a clue finding mission and I was the puzzle. Instead of hating my body for betraying me, and feeling terrified of the damage I could almost see as my wrists felt like they were eroding away, I began to create visualisations based on an old video game I used to watch someone play, whereby I would helicopter drop Red Cross parcels to the points of my body in pain and send them love and forgiveness instead. And I listened, inwardly, for the messages I hadn’t heard before.
I took the pressure off my body to perform, to be someone I was not. I engaged in trauma therapy using EMDR techniques as a way to release the negative messages that I felt otherwise flying around inside me like smashed glass. I forgave myself my mistakes, I listened to the little voice within and I tried to be kind to myself as I knew I needed me in my corner if I was going to beat this. I was patient but determined. I took the meds as prescribed and with gratitude. I prayed. I rested. I wrote gratitude lists in my head. I stared at pictures of myself when I was very small and I sent her love. I practised visualisations that were supportive and affirming to my body and myself. I set myself small physical tasks each day and I gave myself the time to achieve them and always logged my process and reported it back to the consultants around me. I realised early on that although I could get advice and support from people who are trained to treat this illness, ultimately it was down to me, and I wanted freedom and recovery, one more time.
It took me just over a year to walk again, shortly after which point my husband got sick and was unable to work. To financially support the family I opened Charter, a logical extension of my former therapy practice, just as the 2008 banking crisis hit. With bits of my body braced with concealed metal straps it was hard, and I had to focus. The hours were long. The work was demanding. The commute was grim. My husband was sick. My children were vulnerable. It was a lonely time, but all that I had learned and knew and believed carried me through ‘one day at a time’, ‘what you think of me is not my business’, ‘keep it simple, stupid’, ‘one foot in yesterday, one in tomorrow, and you p—all over today’, ‘just do the next right thing’, ‘ we can do what I can't’, ‘let go and let God’, ‘it works if you work it, so work it you're worth it'. That was 11 years ago.
Like addiction, RA affects mind, body, emotion and soul and a successful recovery needs to address all areas. For the mind I recommend daily meditation, positive healing visualisations and stimulating mental distractions, like work! It’s important to manage the physical side carefully using medication under a consultant, a growing discipline of self-care ie massage/acupuncture, healthy eating, gentle but regular exercise, enough rest and sleep, and for RA the relief of metal joint support straps. The painkillers did not tempt as they would only serve to numb my mind leaving me a victim, trying to control and avoid the pain. Instead I have sought a recovery that allows me to face it and to attend to all areas of my being. I have learned now how to manage that pain. This attention I pay myself helps me emotionally too as it feels caring, not neglectful or afraid any more. I employed the experience and skills of therapists who I respect and trust, and to this day have a close-knit group of friends who I share openly and regularly with, as acceptance and the resulting curiosity has been vital to my well-being. Resentment is the enemy of a free spirit, with all the conditions it demands, and letting go is key.
RA changed me and I’m grateful for it, as I am to my addiction too. They've caused me to stop, to remember to be grateful, deepening my appreciation of life, and to commit to self-care as a way of life. They have delivered me with peace.
So many people say to me that they don’t know how I do it – ‘it’ being under pressure 7 days a week, running a business, commuting, being a single working mum of 3 teens, managing a chronic illness…but it is possible, rewarding even, and the 12 steps remind me I am not a victim: that part is my choice.
Although the pain even to this day is constant, its manageable. If I have a flare up, which only happens in rare times of immense stress, I listen to the messages, apologise to my body and make living amends – if I don't listen, it shouts louder!
Sometimes it really is that simple: if you've got an illness, take the medicine gratefully. What works works, and if we can have the humility to follow direction kindly and with curiosity, even if its desperation that drives us, I believe we can set ourselves free.
Founder and Clinical Director and Addiction, Parenting & Relationship Expert, Charter Harley Street
Mandy Saligari MSc MBACP (Reg) SMMGP NCAC (accred) is an addiction, parenting and relationship expert with a strong media platform. From her outpatient clinic, Charter Harley...