Emerging Strong From My Chronic Pain Conditions Challenge

This story is about the impact chronic pain conditions have had on my life. I have a rare brain disease called Idiopathic Intracranial Hypertension or IIH. I also have Migraine and Hypothyroidism and have bouts of depression and anxiety.

I’ve worried about an unknown future as I’ve had the challenge of a rare condition and misunderstood diseases. I felt frustrated by the doctors who didn’t listen to me. Knowledge is power so I became my own advocate to find the right treatment plan.

I feel like a strong Mum as I emerge with my story today. However, the reality is that I still face challenges every day. I do still have wobbles and mini meltdowns making occasional appearances but I have the strength to get through it, 

My family and friend’s love enables me to embrace every day. I want you to feel empowered to raise awareness of your condition and challenges you face too. Anxiety is still what challenges me the most so read about my coping strategies here.

Living with chronic pain or illness is different for everyone but by reassuring you and giving practical advice, I hope I can support you on your journey. The solutions and strategies I’ve tried, help me and my family live a mostly balanced life. 

My Life Before Chronic Illness

I met my husband Joel at University when I was training to be a Primary School Teacher. I'd already trained and worked as a nanny and I loved being in the classroom, seeing the children grow. Joel’s ability to draw at midnight was a bonus. 

We moved to Hove when I got my first job, teaching children ages 4-8 from mixed backgrounds. I stayed at the school for 11 years, working with multicultural children, children with special needs and integrating kids with autism from the specialist unit.

Joel and I married in 2003 and had a baby boy a year later. Eldest taught me how different looking after other people's children is than your own, but I was still strict in both roles. I adored being a mum and we had another baby boy 21 months later.

We nearly lost Youngest at birth who was born quickly with the cord tight around his neck. He was taken to the special care ward whilst I was sent back to the maternity ward, surrounded by mums with their babies. I’d never felt a sense of loss like it. 

That night he had a 4 hour seizure and we were told to prepare for the worst. Thankfully he just pulled through but they couldn’t find a cause. It was put down to trauma and 11 days later we came home. We had another 5 day stay weeks later. 

Youngest was given the all clear aged one but it had taken its toll on Joel and I. I developed postnatal depression and severe panic attacks. I asked for help and went to counselling. Since then we’ve valued and always worked on our mental health.  Read this easy to use self help book about postnatal depression. 

The Day My Physical Health Changed

One day in 2009, aged 32, I woke with a sudden sharp pain around and behind my right eye. Standard painkillers didn’t help the pain, which was so severe I cried with every movement. I was signed off work for two months whilst my GP tried to help me. 

I was misdiagnosed with infections and 2 chronic pain conditions before I was finally diagnosed with atypical migraine. I was given strong, preventative medication which my body took months to get used to. I had a phased return to my part time hours.

Although the medication worked I still had low level constant pain, affecting family life and interfering with weekend plans. So I explored alternative therapies until I found a cranial osteopath who helped me live less painfully and our family more happily. 

We could travel again and had many family adventures. The best thing was not being sensitive to sound so I could go to gigs, swim and watch the boy’s school shows. I aimed high and was promoted to an Early Years specialist and Senior teacher.

Becoming A Chronic Pain Sufferer

I started having migraine attacks every weekend. Then in January 2014 I had an attack that wouldn’t ease so my GP did an urgent referral to a neurologist who said my migraine had become chronic. Sadly that pain’s still with me years later. 

I tried to push on but it was unbearable, I took sick leave, thinking I’d find a solution with traditional medication and natural therapies. Over the next 8 months I tried every migraine medication, elimination diets, reiki, reflexology and more but nothing helped.

I couldn’t teach and began worrying about the future for myself and my family. I kept fighting it but the neurology team didn’t seem to care. I’d be upset on the phone to the nurse due to unbearable pain and she’d tell me to talk to my GP about ‘my mood’. 

My tears fell from frustration of being unheard and the unrelenting pain that seemed different to the migraines I knew. So I researched constant headaches and a new symptom jumped out at me; the ‘whooshing’ in my ears was pulsatile tinnitus (PT).

This was the first piece of the puzzle so I joined an online support group. I heard of a PT specialist in Cambridge and boy was that long car journey to see him worth it. He took my situation seriously and suspected Idiopathic Intracranial Hypertension or IIH. 

I had to wait for the tests to confirm this and was told this would be a long process. I was on the migraine medication Merry Go Round, spending months weaning myself on and off of high doses of preventative medicine. Nothing improved my symptoms, although I got a little relief from using aromatherapy oils, especially this Neals Yard Lavender Essential Oil.

My neurologist found out that I’d sought this second opinion and he refused to treat me. I knew I still had migraine so I was devastated. As the months went on, the ‘long process’ felt like forever. The pain lay heavy on me so I became severely depressed.

I was losing my sense of self and felt left to rot. My GP was concerned so ran blood tests which showed I’d also developed Hypothyroidism. This explained the amplified feelings of hopelessness. My life became a chronic pain conditions balancing act.

What is IIH And Could I Have It? 

I started researching the symptoms of IIH, although I knew I didn’t have eye (optic) nerve swelling, called papilloedema. I was convinced I had it despite the headache specialist I saw shutting down my questions about IIH, as I didn’t have papilloedema. 

IIH without Papilloedema (IIHWOP), is a very rare type of IIH. Less is known about it and many Doctors deny it exists. But the Cambridge team were working with other patients with similar symptoms to me so sticking with them was the best decision. 

To be diagnosed with IIHWOP you need brain scans and a lumbar puncture (LP). Your explanation about the details of your symptoms is vital so I needed to document my experiences so I could give the specialists a clear picture of what was happening. 

IIHWOP affects people differently so someone may have some or all of these most common symptoms. They may have additional symptoms too but all impact your quality of life. These are the most reported symptoms - read more about this here.

• Headaches

• Pulsatile tinnitus (PT)

• Visual obscurations - temporary black outs or grey outs

• Blurred or double vision 

• Photopsias - short term flashes of light

I still suffer with the same symptoms I had originally although the intensity changes. As well as PT, I have constant pain in my head, neck and around my right eye. I get very nauseous and have poor mobility; I can get dizzy, black out and stumble or fall. 

I also suffer with brain fog, a type of cognitive dysfunction involving memory problems, lack of mental clarity and an inability to focus. This is linked to all of the chronic pain conditions I have but it has  improved with each surgery I’ve had for IIH. 

IIH has left me disabled and bed-bound most of the time. I used to feel guilty about how this limits what I do but now I live day by day, saving my energy for family and friends. My family is about living a happy life, full of laughter and making memories.

The Challenge To Get Treatment 

My CT scans showed narrowing of blood vessels in the transverse sinus. This is part of the system acting as a conduit for the blood needed to oxygenate the brain. Watch how blood should drain into the dural sinuses through the internal jugular vein.

This means I have restricted venous outflow so fluid builds up in my skull, causing a pressure cooker feeling. Headaches are a symptom of all my chronic pain conditions, so I’ve documented how they affect me to help me get the treatment I need. 

However, getting the treatment for such a rare disease isn’t easy. Nothing was worse than a trip to A&E in late 2014 at the end of an intense weekend after I’d blacked out for the first time. When I finally saw a doctor she would only give me paracetamol! 

My pain levels were so high, I was shaking as my legs felt like jelly.My GP prescribed a cocktail of pain relief, including oramorph, the following day. Of all my chronic pain conditions, IIH was the hardest to control, often leaving me I able to do anything. 

This was a new level so Joel pushed for Cambridge to do the diagnostic tests. I was officially diagnosed with IIHWOP after the consultant listened carefully to how well the LP had temporarily reduced my pain levels, despite my LP result being low.

My treatment plan, however, was delayed for over a year as their trial was under review. In 2017 I had my first of six surgical treatments. I’ve had skull and spine surgeries to create room for my veins and brain stents to reduce CSF build up. 

The Truth About Living With Chronic Illness

The truth is that living with chronic pain conditions tests your limits. We knew it would be a marathon, not a 10k race but I've had to accept that I need walkers, a stairlift, a wheelchair, and my gig ear plugs, to make it possible for me to go out on better days. 

Joel’s my main carer and my boys are young carers for me. I also have a PA here each weekday lunchtime who is like a family member now. She ensures I eat and wash. She cooks, does laundry, keeps things tidy and is perfect company for me.

Joel, myself and the boys have had to adjust how we live day to day with chronic illness in the mix. But by learning how to communicate effectively we’ve developed a stronger bond. The boys have become independent and resilient. 

This is key to being able to thrive despite challenges. We work as a team to develop and encourage personal growth. My teaching skills have helped me facilitate finding solutions by making time to reflect on life whilst being mindful. 

Joel’s always been more spontaneous than me so I've learnt how to make the best of my good days. I still love seeing friends or going out to eat but I have to be aware that all activity has consequences with high pain and sleep disturbances afterwards.

We’ve created new routines to make the most of the time we have. We plan time together, such as family get-togethers and date nights. The boys tell me about their day and Joel and I make time to talk about how we’re feeling. This pays off long term.

I know I’m so lucky to have Joel guide and stand by me through the toughest times and enjoy the good when we can. Chronic pain conditions impact your relationships so you have to make time for each other and find ways to release the stress. 

The Chronic Pain Conditions Lifestyle Lowdown 

Life can change overnight when you develop chronic pain conditions or mental health problems. When that involves family, your relationships change too. My story shows this and how we’ve succeeded by mixing plans with a day by day attitude. 

Some people are diagnosed quickly with fairly common conditions, some spend years searching for a diagnosis. Wherever you are on your journey, it’s vital to learn about your condition and its symptoms so you make informed choices for treatment. 

Any diagnosis leads to questions and concerns about the future. I believe that this is when you need a sense of purpose, especially when facing big changes and decisions. This is why I began blogging about my journey to raise awareness. 

I’ve worked hard on my well-being to cope with the depression and pain that can hold me back. I refuse to let it win so I use distraction tactics. I am creative, I meditate and try to put myself first. Read about how I prioritise my wellness needs here.

My husband struggled with his mental health and as our boys were young we chose to do family therapy. Thankfully my husband and children supported me in the good, bad and horrendous times. We built strategies to build good mental health for us all.

Developing routines and structure leads to healthy communication which has made our family an awesome team. With their support I’m now emerging strong with hope and determination to get through hard times and enjoy the good.

Stay safe
L 💜

P.S I can help you create better wellbeing strategies for living with chronic pain conditions. Download my free well-being planner here to prioritise your needs. If you want to get on a waiting list for updates on my first ever well-being product, please sign up to my newsletter below.

✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬇  Hit one of those sharing buttons or save the images to Pinterest and I will do a bed-bound happy dance - there's an image for you!