Life, love and the pursuit of toilet roll.

To those struggling today, and feeling sad or abandoned, or estranged, or have never known their dad or lost their dads, I send love. To those dads who have lost children I send love and strength. Please be kind to yourselves today.

To my dad, my hero, my friend, my imagination buddy, wierdo, warrior, resilient kind, beautiful, strange, furry, hilariously quirky, oddball- I will always and have always adored you. That will never change. It’s a privilege to be your daughter. ❤️

Flare plus period means I have declared striking action. I can’t think or move properly and said about 31 different swear words already today… so I am declaring my bed and bedroom a safe space and I am not going to move except to pee and take more painkillers. 💊 🪧

#chronicillnesslife #healthflare #flareup #chroniclyme

My checklist.

Did I speak too much, did I say too little? Did I come across as anxious? Did I laugh? (my coping mechanism) Did I look grateful? Did they read my notes? Did they actually look past previous diagnosis?

Chronic illness life

A new order of a tiny proportion of the stuff I have to take daily. Have to admit unpacking those boxes, bags, packets etc always makes me sigh and remember how life was before I was a spoonie.

Lots of water - coz not drinking enough leads to chronic long lasting and ‘have to sit on ice like a penguin’ type UTIs

Plus some flowers from my husband to make me smile.

Oh and a picture of my Lyme warrior cabinet just to give you a glimpse into my world and because the volume of what I have no longer fits in a box, I had to snaffle a whole cupboard to myself. and my mixer…😁

🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️

I will be back writing and blogging as soon as I can. I miss you all. Sometimes it’s all you can do to do what you can do, and unfortunately writing has had to take a back seat. I truly miss it though and am very sad my brain won’t co operate enough to form hilarious coherent sentences on paper… soon I hope.

Love and light and hope to you all xx

You have never known strength until you have had to live it everyday.

Keep going warriors.

Larry

Firstly let me just say if Lyme disease was a place, it would be on fire, people would be running around looking for the sole fire extinguisher within 300 miles, everyone would be shouting at each other and yelling at their own reflections, windows in shops would be broken, puppies howling, babies crying, and all the residents would hear a loud alarm go off at 12 midday sharp, and upon that appointed hour, all who were outside would be chased by a very angry, hungry bear… for an hour…Oh, and none of the letterboxes would have house numbers on them, and every time you opened one it would fire a torrent of peas at you… I truly hate peas. In my opinion, they are the scourge of the vegetable kingdom and should be avoided at all costs.

I think Larry came to become my longstanding houseguest about 10 years ago. When I got bitten after bathing my now husbands dog. She had bounded joyfully into a dirty water lake and I had the honour of making her smell less like a gym sock. Whilst making sure Amy the dog got the best bath/spa treatment ever, I got bitten. By Larry. Hiding in Amy’s fur. Clearly he thought that residence de soggy dog fur was not upmarket or suitable for him, and he saw my uncovered pale leg as a step up in accommodation. Whatever the reason, he decided to bed in, take off his many shoes, and start unpacking his IKEA flat pack furniture whilst simultaneously calling up his buddies and organising a non stop house party from then on. I didn’t know it was Larry at the time, but what I did know with all certainty, is that I had 3 massive bullseyes on my leg, and my legs were starting to swell up like two overfilled sausages. The dog by the way was fine. Of course.

I hotfooted it to A&E after feeling like my legs were going to burst open. The only thing that would stop my legs exploding was a dose of IV hydrocortisone. I felt awful as well. Like I had caught flu and someone was using my body as their own personal thermostat. I think I had a few days antibiotics, I also know that I came out of A&E and went to a job interview a few hours later… after being pumped full of hydrocortisone and enough painkillers to stun a rhino. I can’t tell you anything about what happened during that interview, but for some inexplicable reason I got the job. Maybe they appreciated the wide eyed, dragged through a bush look. Maybe that’s the way to go for all future employment opportunities.

I actually asked to be tested for Lyme disease during my last hospital stay. My spine had decided it no longer wanted to be inside my body, and in my opinion was trying to forcibly escape. It had gone into a permanent spasm, and even though I thought I could massage my way through the pain, I ended up curled up in a ball, swearing, writhing on the floor and cursing the fact my door keys were in a place which was not sadly floor level. After I was admitted to hospital taking every single painkiller they offered me, and coming with new and fun exciting swear words to describe my pain level during ward rounds, my beloved husband and equally beloved and savvy mother had done their research and decided that I may have Lyme. At this point I had almost shouted house on the ‘Chronic illness’ bingo card, and I got the feeling that if they could, they would push my ‘please sit here and tell me what’s going on swivel chair’ through the door and out of the ward into the mouth of an awaiting dragon. They almost certainly viewed me with a mixture of exasperation, perspiration and furrowed expert brows. “It’s Fibro” they would tell me confidently. “It’s not” I would respond with my head in my hands… “course it is” nodded Doctor number 5…. “So you erm you know, keep doing what you’re doing and we will refer you to our head guy” only to find out it’s a broom in a cupboard. So I was apparently tested… begrudgingly… I can only imagine by Dr broom handle because when they discharged me, still gritting my teeth and unable to stand properly or move my neck, they basically yelled after me “it’s not Lyme byeeeeeee.”

Spoiler alert yes. Yes it bloody was. 10 years after this sodding Larry came to stay and continuing to decorate my insides with vibrant colours and exotic furs. Someone finally helped. By this point I was struggling. Now I deal with pain fairly stoically. I also deal with any of my many chronic illnesses with humour and positivity. It’s my coping mechanism. But I had points where I would be inwardly and outwardly cursing the b**ard who invented stairs because I would be losing my balance and turning into a human vibrator because my hands would shake. It also appeared that the entire bloomin internal Jess body orchestra had started off their winter season by playing flight of the bumblebee, using every single nerve point in my body as piano keys. They must have got rave reviews, because they have continued their repertoire to include brain fog concerto, and the hibernation symphony in C. And immune system knock out piano solo in D minor. Thank goodness for German labs, thank goodness for my wonderful Lyme specialist, thank goodness for my tenacious Mum and stubborn husband, for getting all the research together, for fairly sternly encouraging me to make the appointment and finally making me get tested.

I was so sure it wasn’t lyme. So,so sure. In fact when I got my super positive results for Larry, (who has now branched into his singing career singing all the hits along side his back up singers; co infections Bartonella, Babesia and Borrelia), I was in my friends car, going to dinner blissfully unaware everything was going to change. I remember vividly getting the email, and then subsequently going into a garbled expletive filled rant explaining to my startled friend why previous Drs have all the nouse and common sense of a grilled aubergine. I then looked at my report and my blood cells looked like furry creatures. Misshapen, fuzzy, furry looking alien blobs. I don’t know anything about what blood cells are supposed to look like under the microscope, but I can safely say they are not supposed to look like they are alive. Larry and his trio had had a field day over the past 10 or so years, it looked like he had grabbed my blood cells and then proceeded to try and sculpt them into another shape with all of his feet. It was horrifying. Truly horrifying. How the hell could they have missed it?

I am now acutely aware that Lyme is completely overlooked in the UK, and also in other parts of the world. It is misdiagnosed, mistreated, misunderstood. Research is underfunded and drs are woefully ignorant of the symptoms. Mine were and I am now a passenger in Larry’s super fun happy rollercoaster ride of pain, brain fog, gut issues, hyperactive or completely catatonic immune system, skin issues, joint issues, pain and fatigue. And there’s no sodding toffee apple at the end of the ride as a reward. It goes on and on until I am completely nauseous, confused, full of rage, tears and vertigo. It effects every cell, every muscle, nerve, neuron, and because it wasn’t picked up and treated, it’s now in the chronic stage, which is an absolute minefield to treat.

I am one of the millions of warriors living with IBD. There’s numerous symptoms and when I say it’s life changing it absolutely is. Imagine having to scrutinise what you eat, drink, your own symptoms, what medications you take, the sleep quality you have, what your bowel movements are like, pain management and monitoring, if you are bleeding, if you are constipated, exhausted, the constant weight changes, the look out for infections, changes in symptoms, immune system responses, the memorising of toilet stops on a journey/ day out, the constant battles with our drs, in some countries the battles and fear over insurance issues, care costs, medication costs, the fear of accidents, the surgeries, causing some to require intervention and colostomy bags. The anxiety inducing emergency and regular hospital admissions and the constant fear that it could unmanageable. This disease kills. This disease alters lives, this disease is maddening, scary, fear inducing, causes anxiety, depression and loneliness. And yet this is happening to millions of us. Invisible but devastating. I am one of them.Today we raise awareness and stand together. Warriors always. I have met the most incredible, kind, selfless, brave, warm, compassionate beautiful people on this journey to understand my form of colitis, and IBD as a whole and they continue to fight battles of gargantuan scale. So never judge someone. You never know what a person is going through underneath the surface. Be kind always and use today to find out a bit more. Much love and light to you all.

Thank you for getting me my lagua

Thank you for always making me laugh, every day, even when I am in pain,

Thank you for understanding me and embracing the way my odd little brain works,

Thank you for always making me feel beautiful through your eyes,

Thank you for your love.

Thank you for your support.

Thank you for your weirdness. Only in this universe would us two complete odd balls could have found each other.

Thank you for your strength

Thank you for your gentleness

Thank you for your hard work, your dedication, you always striving for us.

Thank you for you for your hugs, your warmth, your safety

Thank you for recognising faults and striving to change them and thank you for telling me mine, so I can change too. ❤️

Thank you for being the best team mate and my best friend.

Thank you for stepping up when I cannot.

Thank you for never making me feel less. Thank you for pushing me to do more, because you know I can, even when I don’t.

Thank you for every meaningful conversation and every daft one, and everything else in between.

Thank you for every single adventure we have had, all the car rides we have shared, all the sleepy evening cuddles watching movies we never finish, the beautiful places we have been. for every hard moment, for every beautiful moment we have had, for the tears we have shared, for the uncontrollable laughter, for the meals eaten together, for cleaning even though I know you hate it. For lifting me up, for letting me watch Masterchef Australia, for the thoughtful gifts you give me, for the stupid faces you pull in photos and for so much more. I love you and I am so so blessed to be your wife ❤️ Happy anniversary Kyle Garland my darling husband ❤️❤️❤️❤️

PLEASE NOTE... trigger warning. This post centres on the subject of our baby loss. Please do not read if this is triggering for you.

Full disclaimer…. I don’t know how this is going to go. Just typing this leaves me feeling completely exposed, raw and vulnerable. But I know my body has been struggling, and I know I feel like I am choking, and I think its because I feel I have no voice. My body is hurt, my heart is hurt and health has massively deteriorated in the last 6 months… so I guess this is my journey to healing… Before I begin this blog, I wanted to say this blog subject is baby loss…. Our baby loss.

I wanted to say I know I have been away from you all, trying to heal my heart and body and failing at both. We needed to keep ourselves away and try and heal in our own way, in our own bubble. So for those who have needed advice, support I am sorry. For those who needed me and I was distant, I am sorry. For those who wondered why my blogs suddenly stopped.. I am sorry. I had nothing to give. Nothing to say. Although at the same time desperate to reach out.. I felt stuck.. like when a fly gets stuck in jam.. desperate to escape but bound by its own doing.  My grief is not just mine, but ours – mine and Kyles, and before I start this, any feelings you have towards anything I say are not just mine to hear but my love. My husband. My Soul mate who has held me, supported us, hugged me, been stronger than anyone should be, be resilient and loving and gentle and amazing.

I am genuinely terrified writing this. Truly so please be kind and gentle if you choose to read this. If you chose not to read this because this is a subject close to your heart, I understand. I see you.

Dear baby

From the moment I saw the plus come up on that stick, I instantly felt protective of you. It came up before I had even finished peeing…. Your daddy was thrilled. We hugged for so long. We waited for you for so long. I felt at peace and a warmth in my heart I hadn’t felt before. You were all I wanted. All I have waited for. My journey to be a mum hasn’t been easy. My health has not been good. I felt such guilt over that… I can’t tell you. The fact my body was in such a discombobulated state, my mind as well meant it was impossible to have you before. I took supplements, I saw functional Drs, I took hormones, I did research… I wanted to get my body to a place where it felt safe and one where I could make you a safe, cosy home for you. So, when you appeared, I felt relief and gratitude to the universe. All the money we spent, all the consultations, all the supplements, all the sacrifices, all the worry, all the longing, looking at others families and trying not to feel jealous or sad.. was worth it. We had done it. I am so sorry it wasn’t enough. I am so sorry that my body couldn’t keep you. I am sorry that the universe decided that it wasn’t viable or healthy or right. I am sorry that I wasn’t enough. For those 11 weeks, you were our world. My darling hubby laid his hands on you every night. He spoke to you. Every night I would go to sleep telling you I loved you and ‘to hang in there’. My god you were loved. You were precious. We kept you secret for weeks. I only told my best friends that you were there. I don’t know why. Maybe I was afraid. I didn’t trust my body. I don’t know.

My body has let me down on so many occasions. Drs have let me down on so many occasions. I worried. Probably too much. You were the most precious thing I ever looked after, and I worried it was going to get taken away from us. With chronic illness, its so hard to get a grip on things, to spot changes and anomalies … I wasn’t sure what was what. I worried, I worried that I wasn’t being sick, that my nausea wasn’t strong enough (never in my life would I thought I was wishing for vomiting, but I was)…. I didn’t know that that was a sign you weren’t thriving. I didn’t know. I wish I could have done something…. I wish I could have taken a supplement, or a remedy to change things, to heal you, to make you grow more, to survive. I am so, so sorry. I wish I could have saved you. My heart hurts that I couldn’t save you. I would have given anything to save you… to change the course of events.

It was pre-Christmas time … We went away for our 10 year anniversary. We took us away for fresh air, long walks, fresh air and to spend time in our bubble. And then time in the city. mulled wine smells in the Christmas market, roasting chestnuts, lights, smiles on faces, hot chocolate brewing away, gifts, little artisan stalls. I hope you were still with us then. I hope that our happiness came through to you. I hope you felt every second of our love and happiness. Because we love each other fiercely. We laughed so much…. Even when a gentle 3-mile walk turned into a 6 mile mountain trek (just a gentle meander my ass) and I wanted to vomit out of my eye balls, we laughed and I cried out of exhaustion mainly. The views were beautiful, my feet swollen. We got home, happy and blessed.

You were 10-11 weeks old. The week leading up to Christmas, I knew something was wrong. I felt different. I don’t know how to describe it… emptier and I worried. Every morning I would give you a pep talk, hoping that my words would help you stay strong and healthy… I started spotting… my heart dropped. We ironically had our first midwife appointment and I told her what was happening. She told us it could be nothing, but I think I knew. I knew. You were in trouble. We were in trouble…

The bleeding got worse. I am so sorry. I am so sorry my stupid body couldn’t keep you. Queue an emergency visit to a&e and scans and false hope and then …. A jumble of hazy words… a scene where I felt I was floating above my body full of masked faces, beeping equipment, silences that cut through the air around us… silences that I thought would never end… ‘How far long are you?’ … ‘It doesn’t look like its growing properly’ ‘I am sorry we can’t find a no heartbeat’ a dread to look at the ultrasound screen, terrified I would see a baby and instead feeling a horrified relief that you looked like a dinosaur… I am so sorry I felt that. I think I was so terrified that I would see you fully formed… and you weren’t.  …. My heart stopped. I know it did, I wanted to rip myself in half. I hated my body, my brain, my womanhood for not being enough. For not making a home for you. For not keeping you alive. That’s the thing about miscarriage though, it isn’t immediate. There’s scans and tests, more hope, less hope.. they can’t tell you straight away. You are stretched, pulled in every direction, probed, squeezed, scanned again, examined, more tests… I wanted to scream. ‘ Its not fair’ Am I being punished for something?’

 I am sorry my words and our love for you were not enough. I am angry that it wasn’t enough. I am angry at myself. Maybe if I tried harder, took more supplements. Maybe if I was healthier or maybe if my body was a bit stronger, I could have kept you. So while the world was preparing for Christmas, stockings filled, presents wrapped, Christmas trees decorated, excitement building, carols being sang… we were losing you. The night before Christmas all through the house. Just us… away from the world, trying to pretend that tomorrow wasn’t Christmas.

I lost you violently, agonisingly. I think my heart and body were trying to keep you with me. With us. 10 hours of blood, tears, - feeling like I was being torn apart. They didn’t tell me I would have labour pains for 10 hours, They didn’t tell me, that losing you would be like my body being torn apart by wild horses. They didn’t tell me that we wouldn’t be able to get help. No ambulance, they gave us the wrong ward number. I am beyond angry we couldn’t get help or support but no one came. No one answered, I didn’t know when it would stop. I didn’t think it was ever going to stop… I thought I was going to die So we held each other, just us two, together…. After 10 agonising hours of more physical pain, incredibly strong contractions and heartache then I ever thought possible, you left us..  Just as Christmas day was starting for the world, the world ended for us. I honestly don’t know how we got through Christmas. Our closest people knew. I think I was determined to try and make some kind of memory rather than focus on the sheer visceral pain we were going through. I have had a lot of horrible Christmases. I have had a lot of Christmases of misery and fear and hatred towards my self… and I have worked very, very hard to try and love Christmas again. I don’t want that to go but I fear Christmas this year. I don’t want to be in our house. This makes me very sad.