I wasn’t born with a disability, nor did I have an accident. In fact I was a relatively healthy 29 year old who’d just had my first baby and was adjusting to motherhood and looking forward to the future.
In the months after giving birth (May 2016) I had worsening back pain, which was constant, stabbing and affected daily life. Every month passed and the pain didn’t disappear, it progressively got worse. Every month I spoke to or visited the GP about the pain multiple times, often every other week. Every month I was told it was to be expected, aches and pains were the norm as I’d not long had a baby, every month I was given varying doses of painkillers which didn’t help, I’d either be doubled over in pain or spaced out barely functioning. I self referred to a physiotherapy unit at the local hospital and although they did try to help they eventually discharged me due to not knowing what the underlying cause was.
After hounding the GP for the best part of 6 months they eventually referred me to an Osteopathy practice. There was talks of epidural injections, the possibility of a spinal block, but these things didn’t materialise and instead my spine was just physically manipulated at the few appointments I had, leaving me in agonising pain and unable to lift my six month old son. I was told to rest that this pain was possibly a slipped disc and that it would likely ‘see to itself’ in time. That time never came. The pain instead grew and became completely unmanageable, my bladder and bowel function was non existent, I lost all sensation in my left leg and then my right leg. At this point I was rushed into hospital for blood tests, physical examinations and MRI scans. It was discovered that my Cauda Equina nerves had been crushed by a number of massively herniated discs and I would need emergency spinal surgery to prevent any further damage. It wasn’t clear how long these discs had been compressing this series of nerves or how severe the damage would be following an operation. I had never even heard of Cauda Equina Syndrome, let alone knowing what the nerves controlled or what the prognosis for recovery was. I was terrified. Scared for the spinal surgery, scared for the future and ultimately scared that the damage was permanent.
Following the surgery I was still in pain, but this was to be expected as there had been discs, facet joints and more removed from my spine. I tried to move forward the best I could but I wasn’t able to return to my old job, the pain was still present and I still wasn’t able to pick up my son. This remained the same for the next 10 months when I reached a state of acceptance that I’d be stuck using crutches for the foreseeable future, stuck having to self catheterise due to the nerve damage to my bladder and the damage meaning I wouldn’t be able to empty my bladder ‘normally’ anymore. I returned to work in a new role where I spent the next 18 months muddling through still in pain but at least feeling like I was moving forward. I even managed to start going to the gym in the hope of building up some strength again. This happened over the period of August 2017- December 2018. I felt that I’d turned a corner and was adjusting well to my new ‘normal’; but in the December of 2018 things began to change again for the worse. The pain was growing once more, the amount of downtime between activities was growing, I’d been here before and I was concerned.
In the January of 2019 I returned to work after the new year break and instead of feeling relaxed and ready to work I was in agony, my ‘good leg’ (the right leg I still had sensation in) was getting numb, my bowels had stopped working again and I knew something was wrong. I was sent from my department in the hospital straight to a&e where I had the same tests and MRI as before but all they found were prolapsed discs not warranting immediate surgical intervention and I was sent home awaiting referrals to other departments. Neurosurgery didn’t want to see me as it wasn’t something for them to become immediately involved with so I was passed on to the pain clinic. The pain clinic is designed to help those with long term pain with medication adjustments and often mindfulness exercises. I didn’t need mindfulness, I needed help. But I persevered with their appointments, saw a consultant in pain management who diagnosed Cauda Equina Sequelae, Complex Regional Pain Syndrome as well as failed back surgery syndrome and piriformis syndrome but I left feeling deflated as his suggestion was to just up my medication and see how it goes. I didn’t want to wait and see, I’d been in a constant state of wait and see thinking for the last few years. I then saw a specialist physiotherapist who was concerned by the continuing pain and changes in bowel and bladder function and sent me for another MRI in April 2019 which again showed disc changes but not something requiring immediate surgical intervention.
Now in June 2019 I’m awaiting my first appointment with a Spinal rehabilitation specialist, I can’t say I’m feeling full of hope. I feel lost in a system, passed from pillar to post, full of medication which isn’t helping and isn’t getting to the bottom of the issue. I feel like im trapped in the body of a 90 year old woman not one that is expected for the 32 years I’ve lived. I don’t know what the future holds. I don’t know if this time next week I’ll have a solution or even this time next year. I haven’t adjusted well to these changes and as with any disability there is a grieving process. I’m grieving the loss of my independence, I’m angry that I took being able bodied for granted, I regret not taking better care of myself. The last stage of a grieving process is acceptance, whilst I may have reached that point previously it feels that at present I can’t and won’t accept this new me. I want to be how I was, I want to act spontaneously without the masses of planning required to carry out even the smallest task. I want to not feel such resentment and anger at myself and my situation. I want to shake this crippling anxiety and low mood but most of all I don’t want to feel like a burden. But despite all this negativity I still get up,get ready and face the day the best I can. I still try to live as ‘normally’ as I can, often pushing myself to the point of exhaustion. It’s not easy but I’m not giving up, trying my best and having hope is all I can do on my worst days.
I don’t speak for every one with a chronic condition or disability and I don’t try to. This is one person’s account of adjusting to an ever changing lifestyle and the challenges that chronic conditions and disability bring to everyday living. Who knows maybe in the future I’ll have to post another blog about my experiences of living with these conditions and maybe I’ll have adjusted better by then, but for now this is a truly honest account of the struggles of just getting by. No matter how hard this struggle is I have to remind myself of the positive aspects; I’m spending time with my son which had I been ‘well’ I wouldn’t have, I’m closer than ever to my loved ones, I’ve rekindled interest in activities I’d not been making time for, I’m finally going to be finishing my degree. All huge positives that perhaps if I’d have been ‘well’ I wouldn’t have had chance to do. Sometimes we’re so caught up in life we forget things we enjoy and what makes us ‘us.
Things are far from easy right now but perhaps these things happen to help us discover our true purpose and push us in new directions. Maybe we’re just unlucky. All I know is that I’m learning to live my best life despite difficulties and I’m not letting these chronic conditions steal anymore of me.
#IAmACaudaEquinaChampion #WeCanDoHardThings
For more information on the conditions mentioned visit: The Cauda Equina Syndrome Association and CRPS uk
Where to begin? I’m Hannah and this is the beginnings of a blog I’ve spent a long time thinking about and an even longer time putting off.
Konnichiwa Kitty 