Being ill sucks at the best of times and yet being ill when you’re a parent? There really is nothing worse. You have no choice but to carry on as normal, to deal with whiny, demanding children who insist on clambering all over you, screaming and shouting and preventing you from doing the one thing you feel like doing – getting some sleep!! You still have to maintain some kind of order and hygiene standards around the home, feed the children, make sure that they are bathed, dressed, ready to face the day….even when you’re not!
Sometimes when you are particularly unwell, you find that others flock to help you. Your parents see you coughing, sneezing, croaking and ask, “Is there anything I can do to help?”. Your partner may see you crouched over the toilet, too nauseous to move, and offer, “Do you need me to stay at home today?”. Friends see you looking absolutely dreadful and tell you, “Let me help you with the children”. But sometimes you can feel so poorly, worse than you have ever felt in your entire life, and there is nothing at all to physically SEE. Infact, you can look the picture of health and nobody has the slightest idea of how awful you feel.
And it’s ironic that in a world where we share so much, where we upload our innermost feelings to Facebook and Twitter, share personal photos and updates on Instagram, when it comes to things that are pretty major in our lives, that are actually quite life-changing, we tend to share so little.
I have a secret that I have shared with just a handful of people in my life this last 14 months. A secret that was not deliberately kept from others but the fear and the uncertainty prevented me from finding the right words to say it out loud. A secret that has sent me on the bumpiest, scariest rollercoaster I have ever known and that actually, has probably been the toughest year of my life so far. And to look at me, you may never have guessed it.
Last July, when Harry was just a few months old and people were commenting that I have never looked better, I fell ill. It started with a fever, a sore throat and swollen glands, I ached all over and I was bone tired. And I just couldn’t shift it.
Within a couple of weeks I was struggling to function, I lost a massive amount of weight that I could ill afford to lose, developed worrying neurological symptoms such as continuous pins and needles in my hands and feet, numbness, shaking, black outs, difficulty swallowing and I was in so much pain. Everything hurt, from the top of my head down to my toes. I was in agony, twenty four hours a day. And with a new born, and three other children to care for, it could not have come at a worse time.
At first the GP suspected that it was simply a flare up of my fibromyalgia, an existing chronic-illness that I have lived with my whole adult life which causes wide-spread pain, joint stiffness, fatigue and a long list of ailments. A “fibro flare” can appear from nowhere, knocking you off your feet and causing a whole host of medical issues and so in that way, despite having never experienced this level of a flare before, it seemed like the logical answer. My GP suggested that we ran an MOT of blood tests to be on the safe side and booked me in for the results in two weeks time.
When I received a call from the GPs receptionist just two days later, I was surprised to hear that they wanted to see me that same afternoon. Knowing that appointments are like gold dust and that it is notoriously difficult to see your chosen doctor, I started to panic a little. As I sat in the waiting room feeling more poorly than ever, my imagination ran away with me,
When it was finally my turn, my GP explained that there was an issue with my white blood count and it was a major cause for concern. When I pushed him for possible causes he told me, very matter of fact, that it could be a simple virus or we could be looking at something much more serious such as leukemia or other blood cancers. He booked me in for repeat blood tests the following week, explaining the importance of waiting several days to get a true picture of what we were dealing with, and said he would see me with the results the following week. As I left the surgery I felt as though I had the weight of the world on my shoulders.
And for the following week I worried myself sick. I was unable to eat, sleep or think about anything else. I cried my way through each day, looking at my beautiful children and wondering whether I would still be around to see them grow up. I spent a ridiculous amount of time on the phone to my best friend seeking reassurance, telling her all of the terrible things I had read on Google and my incessant worry that nobody could feel THIS poorly without there being something seriously wrong.
So I cannot even begin to explain to you the relief I felt when two weeks later my GP told me that my results were “on the up” and in their medical opinion, I simply had a very nasty virus.
When I continued to deteriorate as the weeks passed, I started to worry that there was more to this than “just a virus”. Some days I was unable to do a simple task such as making a bottle for Harry, dress the children or even wash my hair as my hands had taken on a life of their own and my fine motor skills were totally compromised. I became terrified of lifting Harry incase I lost control of my grip, having to learn new ways of feeding him propped up against a cushion, and longing to hold my baby like all new mothers do.
My GP did every blood test available. They checked all of my organ functions, my thyroid, vitamin and mineral deficiencies, inflammation, disease, infection and a whole host of rare conditions that I had never even heard of. And as each one came back normal I continued to ask myself, why do I feel so ill??
Weeks later when I was struggling for breath just climbing the stairs, when I was experiencing palpitations continuously throughout the day and my circulation was increasingly worsening, the GP sent me for an ECG. The results, again, came back normal and my GP told me that this was all a “post-natal issue” and that my body would settle down as Harry approached his first birthday. I remember sitting there, in floods of tears, telling him that I couldn’t possibly wait that long. I told him repeatedly that I felt as though my central nervous system was under attack and he told me to stop worrying, that I was fuelling my own anxiety and becoming obsessive about my health.
I seemed to be living a double life. By day I would plaster on my “Happy Mummy” face and force myself to playgroups, to softplay centres, play games with the children and by night I would collapse on the couch in floods of tears, take more painkillers and long for a day when I didn’t feel so ill. It was exhausting, both mentally and physically and the fear of what was causing me to feel so ill was worse than all of the symptoms put together.
One morning while out driving with the three babies in the back, I lost all vision in one eye and it was one of the scariest moments of my life. As I pulled over, absolutely terrified, and rang Gaz to help me, I realised that something was seriously wrong.
That day, after an emergency appointment with the doctor, he finally referred me to a neurologist and said that the likelihood was that we were looking at something like MS.
I spent the next few weeks, rightly or wrongly, on Google, reading accounts from other sufferers that I could well have written myself and I cried, panicked and exhausted myself to the point where I was an absolute wreck.
By the October I finally saw a neurologist who agreed that given my symptoms, my age and on examination, we needed a brain scan to rule out MS or the possibility of something more sinister. And with an appointment for six weeks later (don’t you just love the NHS?) I could think of nothing else.
Just two weeks before Christmas I sat in the waiting room, having taken a Valium for courage, and awaited my turn. And as the nurse strapped me into the MRI machine I wondered how had we ended up here? How had my health deteriorated so rapidly to a point where I felt so weak, so poorly and felt such pain? And that thirty minutes in the tunnel was one of the longest thirty minutes of all time. I lay there, trying to control my breathing, knowing that if I moved so much as a muscle we would have to start all over again. SO I closed my eyes and I counted in my head, played silly word games and planned the weekly shop. And when it was over and I emerged, drooling and staggering as the Valium had done its magic, Gaz drove me home where I slept for five hours solid.
As Christmas approached things were worse than ever. I developed strange shaking sensations, constant buzzing in my arms and legs and loss of sensation down one side of my body. I had episodes where I could not stop shaking, was becoming increasingly forgetful, times when my vision would worsen and my legs would give way. And where as I should have been looking forward to our first Christmas as a family of six, in the back of my mind I continued to ask myself, could this possibly be our last Christmas as a family of six??
I remember putting up the Christmas tree in the lounge, lovingly hanging the decorations on the tree and wondering, would Gaz know to do this for the children next year? Would he get the tinsel to bauble ratio just right? Would he make sure that the children’s first Christmas without me was more special than ever? Would he tell the children that mummy was the brightest star in the sky as they placed their own star on the top of the tree? And I sat there and I cried my heart out.
With the results of the MRI hanging over our heads and the constant feeling of dread and worry, on top of feeling so dreadfully ill, I somehow had to put on a smile and make it through Christmas. As we sat down to a meal that I couldn’t even eat, I smiled and I laughed and acted as though everything was completely fine but inside I wanted to lie down and sleep for a thousand years.
The day before New Years Eve I received a letter that I instantly knew was my test results. I held it in my hand and knew that this piece of paper could potentially change our entire lives. And with shaking hands I opened it up and read, “The recent MRI of your brain was unremarkable”. And I laughed and I cried in equal measures. The sense of utter relief was immeasurable and yet I was thoroughly insulted that my brain was unremarkable!!!
The initial relief at the negative MRI was soon followed by more worry and concern that if it wasnt MS, then what was it? After repeated visits back and forth to the doctor where I was struggling not only to function ,but now losing the basic ability to swallow, I was sent to an ENT doctor who performed an endoscopy and told me that my throat was entirely normal. I was then passed on to a rheumatologist who examined me and said that in his opinion the fibromyalgia was not the root cause of my illness.
With every specialist I saw, every consultant who examined me and every test result that came back normal, I felt as though nobody had a clue what to do with me. And eventually, my own doctor reached the end of his tether and told me in no uncertain terms that my symptoms were all entirely down to anxiety. He told me he was refusing to send me to another specialist, outright refused to perform any more tests and said he would be happy to up my antidepressant medication and refer me to psychological services. He told me that this was PND, that I had severe anxiety issues and that I should “take up a hobby”.
And I felt as though I was hitting my head against a brick wall. I WAS anxious. I was so bloody anxious I couldn’t think straight. I had been ill for so long and nobody seemed to want to help me. I learned very quickly that it is very hard to get anyone to take you seriously when you have a history of mental illness. My GP was happy to blame my weight loss on my previous battle with anorexia, despite my protests that I was eating, and the other symptoms on anxiety and depression. I saw the look on their faces when I told them I was ill, the roll of their eyes, the frustrated twitch of their mouth, the thought in their head…”Here we go again….”
And by this point my relationship with Gaz was really suffering, not only was I feeling ill 24/7 but the stress of the entire situation had a huge knock on effect on our marriage. We were working very hard to protect the children from the enormity of my poor health, Lewis literally had no idea whatsoever, and yet pretending that everything is fine is so exhausting and there were times when I would take out my frustration and anger on the one closest to me – Gaz. I felt that he didn’t understand just how poorly I felt, that he too was fooled by the smile, that in some small way he thought perhaps my GP was right.
And I have never felt so lonely in my entire life.
It was such an isolating time, not being able to tell people what was wrong and yet outwardly appearing to be okay. Concerned friends questioned whether I was eating enough, people commented that I looked tired, and yet nothing out of the ordinary for a busy mum for four. Nobody knew that I was in agony every second of every day, that the neuralgia in my face had pushed me to some of my darkest moments, that some days just getting out of bed took all of my strength and staying upright was a challenge. Had it not been for my children I feel that I would have got in my bed, pulled the covers up over my head and given up. Those four beautiful faces kept me going through the hardest of times.
The following few months saw a change in my bloods and eventually my doctor stopped mentioning anxiety and finally sat up and listened. I was diagnosed with Chronic Kidney Disease, high cholesterol, type 2 diabetes with raised liver enzymes and yet when I asked if this was the cause of all of my problems, I was told that this was un-related.
Over the next few weeks I had a full abdominal ultrasound, a liver scan, a pelvic scan and was screened for ovarian cancer. I was bombarded with information, of “maybe”, “perhaps” and “we’ll see” and the worry of it all left me in pieces. When I got the all clear, again, I was finally sent back to the neurologist for a final opinion as my doctor eventually told me, “You are a medical mystery”.
And last week I finally saw him, the most lovely, kind-hearted, experienced neurologist who listened as I told him how horrific the last 14 months have been, who sympathised with the battle I have had to get the correct help, who patted my arm and passed me a tissue as I cried over just how poorly I have felt for such a long time.
And after all this time, he gave me an answer.
I have post-viral neuropathy and ME.
The virus that I first started with back in July 2014, when my white blood count was so frighteningly low, had attacked my nervous system and as I suspected, it had caused extensive damage. I had no idea, but the nervous system controls everything – not just your brain and your nerves, but your breathing, your swallowing, your digestive system, your organs, your motor skills, all of the things that had caused me such massive problems for the last year. He told me that it is unlikely I will recover from the damage that has already been done, that we can control some of the symptoms with anti-seizure medication, pain killers, diet and exercise and yet there is no way of knowing how this will improve or deteriorate over time. And ME, a condition which I may or may not recover from, which he explained could flare up, as my fibromyalgia does, during future illnesses, which could leave me bed ridden one week and feeling a little brighter the next.
I thought that I would feel nothing but relief at finally having a diagnosis and yet I just feel such a mixture of emotions. I feel saddened that I have spent 14 months living with the fear of the unknown, missed out on so much with my children, particularly Harry, as I have felt far too poorly. I feel angry that I could not get the help I needed from the NHS without such a huge fight, that my GP so easily blamed it all on “anxiety” and made me, and my family, question my own mental health. I feel frustrated that had my GP been more on the ball 14 months ago, the damage to my nervous system may have been minimal and would not have left such long term effects. I feel let down by so many people.
And while its reassuring to know that actually, I’m not insane, its hard to know that I will now have to live this way, potentially, forever. I now have to find ways to adapt my lifestyle, make changes to benefit my health whilst monitoring my kidney disease and my ever increasing hba1c levels.
And I don’t share this with you all for sympathy, for “Get well soon” wishes or for offers of support. I share this with you because actually, when I share so much of my life with others, it would be wrong of me to omit something that is now a major part of my life, and my future.
Through all of this, I have found that people are very quick to tell you that they know what you are going through, that they can sympathise with you as they once had a bad back, a sore foot, their next door neighbours second cousin had a nasty dose of the flu. I hear that perhaps I would feel better if I took a multivitamin, if I had an afternoon nap, if I “didn’t think about it as much”. And it’s so insulting, it belittles what I have been through and it offends me deeply that just because you can’t see that I am poorly, it doesn’t make it any less of a condition.
Chronic illness is so misunderstood and yet affects so many. It can take on so many forms, leave some sufferers totally debillitated and others able to lead a relatively normal life. When I speak to sufferers of chronic illness they all tell me the same thing, it is SO hard to speak to people about our ill health as the reaction is quite often an incredulous, “Well you don’t look ill!!!” or most commonly, “It could be worse!”.
So now the people I plan to surround myself with are not the ones who ask me, “Are you better yet?” as they see me playing in the park with my children, laughing and joking with my friends or walking the dog with my husband. I have learned that the ones who I need, and who shall remain in my life, are the ones who can share in a good day and offer their love and support on a bad one. The ones who ask me, “Is there anything I can do?” when I am struggling, who offer me a hug, a hand or a simple text. The ones who celebrate each pound I slowly gain, each bit of strength that I claw back and each genuine smile or moment of happiness. The ones who tell me, “I am always here for you.”.