Since I started my blog eighteen months ago, I have shared so much of our lives with you all. I have found it hugely therapeutic to put down in words all of the weird and wonderful thoughts in my head, to document our highs and lows, and share the ups and downs of life as a Mummy of five. Last year I shared with you that I had some on-going health issues, and wrote how I had been having some tests, and yet what I haven’t shared with you is, that for the last three months, we have been coming to terms with some life changing news. And it has been really hard for me to keep that to myself, all too aware that, should I share the news on my blog, it could find it’s way back to Lewis before I was ready to tell him myself. And now? I am finally ready to share the last three months with you, or indeed the last two and a half years, and although I have no idea where to start, I guess for those who don’t know my story, the best place would be at the beginning….
In 2014, just a few weeks after having Harry, I was really poorly. It came from nowhere, like I had been hit by the flu, and it completely floored me. With four children, three under three, it was really tough going and, despite the fact I did not recover as expected, I powered through because that’s what us Mums do, right? A few weeks later I started with some strange neurological issues, numbness, pins and needles, burning and buzzing all over my body, and soon they developed into some really scary issues, a loss of vision in one eye, black-outs, weakness down one side of my body, a substantial amount of weight loss, and I knew that I needed to see a doctor, and fast.
After my initial doctors appointment in August 2014 I saw countless neurologists, a cardiologist, a rheumatologist, an endocrinologist, an ear nose throat specialist, a gynaecologist, a haematologist and an orthopaedic surgeon. I had five MRI scans, three CT scans, several ultrasounds, X-rays, endoscopies, angiograms and countless blood tests. I saw more ambulances, hospital beds and surgery waiting rooms than I care to mention, visited four different specialist hospitals and was seen privately as well as through the NHS. And every single one of those specialists was unable to find a cause.
Over the course of two and a half years, various things flagged up – high liver enzymes, poor kidney function, high cholesterol, anaemia, a raised Hba1c, a mitral valve prolapse, bulging discs in my neck and spine, and a whole host of other issues, none conclusive enough to diagnose me with anything specific. I had countless possible diagnoses thrown around, ranging from ME to MS, and yet nothing concrete and, most importantly, nothing treatable. Countless times I was told by my GP that I was suffering with post natal depression, that it was all in my head, that my anxiety had spiralled out of control and however much I told him that my symptoms were very real, I did, at times, question my own sanity.
And yet with the symptoms worsening, and a CBT referral helping none, I was fobbed off with a cocktail of drugs, anti-seizure medication for the nerve pain, something to help me sleep and a ready supply of pain-killers. And for months my symptoms waxed and waned, flaring up and settling down, never knowing how I would feel from one day to the next. But over the Summer, when my symptoms were actually at their least, I developed a new issue – tinnitus. The most unbearable, constant, high pitched ringing in my right ear that left me unable to switch off, let alone sleep, and yet again I was referred back to the ear, nose, throat specialist. It was decided that I would need a second brain scan to rule out an acoustic neuroma, a benign brain tumour that grows on the acoustic nerve, and on a beautiful sunny day in mid August, as I slid into the MRI tunnel, all too familiar with the procedure, I couldn’t help but wonder how my life was about to change.
By the end of August, after an amazing weekend at a friends wedding, where so many people commented on how well I looked, and ironically when I had felt well for the first time in months, I had a routine appointment at the hospital to discuss my allergies, another issue which had risen seemingly from nowhere.
Sat there, on my own, the specialist explained that my MRI results were in and that, although there was no issue with my acoustic nerve, there had been some changes to my brain since my previous scan. I listened, my heart beating out of my chest, as she told me that I now had a number of lesions which, combined with my symptoms, gave a 95% certainty that I had Multiple Sclerosis.
And I had sat there, feeling dizzy and nauseous, my head spinning with a hundred different thoughts, a thousand different fears, but most of all, the question that broke my heart, how will I break this to the children? I listened as she explained that I would now be sent back to the neurologist who would need to do a lumbar puncture to confirm the diagnosis, but, given the scan, it was very much a certainty. And as I walked back to the car, too numb to even cry, I had rang Gaz at work and, for the first time, said the words out loud, “I have MS.”
And thank God for Gaz, who had sped home as fast as he possibly could, wrapped me up in his arms and held me as I cried, as I let all of my worries and fears spill out with angry, confused sobs, “Why me? After everything, why me?”. Because although life doesn’t work that way, given everything we had already been through, it just felt so desperately unfair. And lay there in bed later that day, when Gaz had taken over with the children and sent me up to get some rest, I had wept into my pillow at the enormity of the situation, at the over-whelming sense of sadness, and the fear at what the future held.
It may sound strange but, afterwards, when Gaz took the rest of the week off work to be with me, we had one of the best weeks we’ve had in a long time. We spent our days at the beach, in the park, eating ice creams in the sunshine, and we laughed, a lot. And in those moments we imagined that life was still the same, that nothing had changed, despite the fact that everything had changed, and as a family we were closer than ever.
The following week we paid privately to see a neurologist, unwilling to wait the six months on the NHS, who agreed that we were looking at a diagnosis of MS but offered us the option of a lumbar puncture, something which Gaz and I both felt was necessary to be completely certain. The following weeks were a blur, just waiting for the appointment to come through and plodding along as best we could. It was incredibly hard to hold it together each day for the children, to protect them from the reality of our lives, to keep smiling and assure them that everything was just as it should be. And Lewis, at twelve, who knows me better than anyone, would hold me tight at bedtime and tell me, “Promise me that you don’t have anything serious,” his eyes searching mine, “Promise me that you’ll be okay.” And I had promised him that everything would be fine, that the doctors knew what they were doing, and that anything serious had been ruled out months ago. And afterwards I would pray that I didn’t have to let him down, or, for the first time in my life, break my promise.
I can’t tell you how hard it was to get through each day, to go about our daily lives as though everything was fine, chatting away with the school Mums about PE kits and reading books, to the lady at the check out about the latest two for one offers, to my parents away on holiday in Spain, unable to tell them the news while they were so far away. And yet somehow I made it through September, through those heartbreaking mornings when Eva cried on repeat and I wondered how she would ever cope with me being poorly long term, through our half term holiday when I questioned whether I would be well enough to travel in the years ahead, through Halloween and Bonfire night, one day at a time, slowly but surely coming to terms with my diagnosis.
And I think as with any diagnosis, you go through a process of grieving for the life that you had planned and begin to prepare for the life that fate has dealt you. And that was hard, to imagine that I may not be around for the children, or at best unable to care for them in the way I would want to. I felt incredibly guilty to think that I would become dependent on Gaz, a man who had fallen in love with me as my partner, not as my carer, and even in those early days I worried that I would become a burden to him, and to my children.
As the weeks dragged on I was lucky to have the support of some amazing friends. Friends who have been there for me to lift my spirits, make me smile, feed me cake and to hold my hand on the days when I struggled. And Gaz, my eternal optimist, who kept me going with the reminder that 95% wasn’t a certainty, that somewhere, someone out there had to be in that 5% of people who had MS type lesions but did not have MS. And I loved him for that, for never giving up hope, even when I long had.
In early November Gaz and I made the journey to the hospital for my lumbar puncture, and I won’t lie to you, I was absolutely terrified. I had heard such terrible things about it, how it was the worst procedure a person could endure, how the pain of childbirth didn’t even compare, and how traumatic others had found it. And so lay there on that hospital bed, my knees tucked up to my chest, the doctor and two medical students behind me, tears streamed down my face. But, yet again, Gaz was there to hold my hand, to keep me calm and talk me through it, and as he rested his forehead against mine and whispered how much he loved me, how proud he was of me, and how it would all be okay, the needle went in and fifteen minutes later it was all over.
The worst part for me, as has been the case for two and half years, was waiting for the results. I kept myself busy where possible, holding the children that little more tightly, making the most of getting out and about, staying as fit and well as I possibly could, and reminding myself that modern medicine had come on leaps and bounds. But at night, when I lay awake in the early hours with that ringing in my ears, I would cry all of the tears that I had held in that day, allowing the smile, that I had forced for the children’s sake, to drop, and for the hundredth time asked myself, why me? And by the end of the month I finally came to terms with the answer. Why not me.
And so I can’t even begin to tell you how scared I was when the envelope fell through my door this week, the much awaited report from the neurologist, the moment of truth that would change my life forever. With shaking hands I had ripped it open, my heart beating out of my chest, and I had stood there, the world spinning around me, as I read the words, “Oligoclonal bands which are usually present in patients with MS, are negative in the spinal fluid.” And after three months of holding the weight of the world on my shoulders, I had actually laughed out loud, an overwhelming feeling of relief, and the realisation that the nightmare we had been living was finally over.
Of course afterwards, when the initial joy had worn off, I realised that the nightmare wasn’t fully over, not really. There is still the undeniable fact that I have lesions on my brain, which poses the question if it isn’t MS, then what is it? And perhaps the hardest part is, we may never really know. Our bodies can react in so many different ways and who knows how three babies in two years took its toll, or if I will ever fully recover. I also know that I will have to have regular brain scans to check on the progress of the lesions, the worry being that if they multiply then a diagnosis of MS will need to be re-assessed and in that way, this will always be hanging over our heads. But if there’s one thing I have learned, this last three months, it’s that you can’t live your life that way, always worrying about tomorrow, trying to second guess the future, worrying yourself stupid about something that may or may not happen. Life is so short, and none of us can predict what tomorrow will bring.
Because actually, and this may be hard for others to understand, this last three months and everything we have been through, was possibly one of the best things that could have happened to me. As a sufferer of chronic anxiety I have wasted far too many years worrying, panicking, and sweating the small stuff, none of which was ever important. I have had such a warped view of self-image, going through countless stages of loathing my body, when I should only ever have been grateful that it worked. I have allowed far too many of my own negative thoughts to impact on my happiness, and if there’s anything positive I can take from this it is the realisation that none of that matters. At the same time it has re-affirmed what I already knew, that hard times will always reveal good friends, and that is nothing short of the truth. If I can find a positive in these last three months, it is the discovery of what is important, and who is important, and I go forward from here surrounded by the best friends, the best family and the best attitude that life is well and truly for living. And this feels like a second chance to really make the most of it, every single moment, good and bad.
So what now? Two and a half years down the line, still no answers and still no idea what the future holds. Well for now, for today, I plan on getting outside, enjoying the fresh air, running around the park, a little one in each hand, and coming home to a family who I love and adore. And tomorrow the same, and the next day, and the next day, until one day when I am old and grey, with Gaz by my side, surrounded by my children, and hopefully by grandchildren, we can look back on this time as just another bump in the road.
Thank you to everyone who has been there for me, particularly over the last three months, you know who you are.