colitisandme

[colitisandme]

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

[colitisandme]

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

Keep going warriors.

Love and light to you all xx

[colitisandme]

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.

So nearly 6 months post diagnosis, here I am fighting. My ‘friendly drugs cabinet’ looks like a pharmaceutical wonderland. My schedule is bananas in regards to what to take, what to eat, what to bathe, soak, marinade, brush, rub, drain… I am on a concoction of functional medicine to try and will Larry and his trio into submission, I drink funky teas, I watch what I eat, what I drink, how I sleep… it’s hard work. The routine is hard work. I am tired, I get fed up and sick and Ill and sick of being ill. It is hard. It is relentless. But I will defeat that crafty son of a b**** and banish him out of my body. Because the choice otherwise is too much to bear. I refuse to lose. I refuse to let them have their own way for any longer. So yes it is exhausting and expensive (because Larry and his trio are not treated on the NHS) and yes my treatment cabinet is bursting at the seems, and yes the results from mould exposure means there is more to do, but I am officially serving Larry and his friends with their eviction notice. They are not welcome anymore and I urge anyone who may think their symptoms don’t fit the usual ‘diagnosis mould’ then please stand up for yourself, follow your gut, seek a second opinion, third opinion even. Be your own advocate. You are not alone. We are in this battle together. Don’t give up. I will draw up the eviction notices and you can bring snacks and placards. Let’s do this. After all our our disease may be invisible but we sure as hell are not.

[colitisandme]

World IBD day 🌏

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.

[colitisandme]

#chronicillness

[colitisandme]

This week has been tough. Really tough. For those who don’t know a few months ago I was diagnosed with Chronic Lyme (undetected by doctors/ anyone with eyes) for 9 years+. 😒😒😒 How they missed it I have no idea, even after a supposedly conducting blood tests etc… but they did. So amongst finding out that not only do I have Lyme (hugest positive indication on the tests ever, without a sodding horn sounding) I have also 3 YES 3 Co infections which are even more dangerous than the Lyme, oh and a sprinkling of microtoxin for good measure. 😣😣😣😣 Its been a lot to deal with. As well as navigating the horrible realisation that essentially I have been poisoned every day for 9+ years … I have had no idea it was happening. In December my Dr finally had a plan to what we were going to do, how to treat everything, the seriousness of everything, having to hold off starting a family because it could cause my body and my baby to become very ill, all the while, trying to also cajole Colin Colon (IBD) Phyllis (Fibro) and who I now call Carol (chronic Fatigue syndrome) into behaving and not throwing massive temper tantrums every 10 mins. 😒😒 oh and also trying to treat re-occurrent UTIs because my poor bladder feels like a over inflated balloon. 🎈 So this week, I started THE TREATMENT PLAN! And it has completely knocked me for 6. 🥺🥺🥺 I am so so tired, sore, bloated, achey, rashes on my body, blooming acne, SORE ACNE, dry scaly skin, sweats, pain… (so attractive) I have come up with an entire set of made up swear words to explain how I am feeling, and even taking a shower has left me leaning on the tiles, contemplating my life’s choices! I am so glad my darling husband has put together a spreadsheet so I know what the hell I am taking because my medicine cabinet looks like a Boots wonderland, and quite frankly I haven’t got a scooby what the hell I am supposed to take and when… (bloody brain fog) so please please be patient with me whilst I navigate my new normal… it’s going to be a very full on 12 months. ❤️

[colitisandme]

This popped up and it made me smile. This resonates with me so strongly and is incredibly poignant for me and kyle this Christmas… it’s very hard dealing with grief and so many different feelings, when you are auto programmed to feel ‘holly jolly’. Sometimes you can’t. We are not robots. We are processing our loss, our ongoing grief, our trauma, so please be gentle with us as we navigate this festive season. ❤️ 🌈🌈🌈🌈🌈🌈 Be gentle with yourselves and each other. #flareup #loss #grief #invisibleillness #chronicillnesswarrior

[colitisandme]

Well it was obviously getting a bit boring in my body so my body decided to turn up the danger and excitement just a little bit so… move over, Phyllis, (Fibro) Colin, (colitis) Phil and Burt (lung nodules) and (not so jubilant welcome to Larry Chronic Lyme disease and his 3 cuddly co infections! 🤦‍♀️🤦‍♀️🤦‍♀️🍋🍋🍋 I am guessing Larry and his cuddly pals love interior design because he seems to have rudely decorated my cells with his own unique art designs… and continues to rip down existing wallpapers to add his own features and painting style. I tell you now, I don’t like him, his arrogance, his haphazard art designs or the way he has made himself at home in all my cells, blood, plasma, brain, white blood cells … he’s also set fire to my immune systems pants, making it run about, whist on fire, in a blind panic bashing anything (god or bad) that it comes up against and subsequently setting it aflame… but I guess he and his friends have been living the life of Riley for 9+ sodding years…. Well Larry and pals you have very much outstayed your welcome don’t get too comfy … you are in for one hell of a fight! 🤦‍♀️🤦‍♀️🤦‍♀️ 💪💪💪💪#chronicillnesswarrior #chroniclymedisease

[colitisandme]

For anyone struggling with their own mental health, or knows someone who is struggling with their mental health, please be kind. To yourself and to others. You never know what someone is going through. Mental health does not discriminate, it can devour and dominate lives. I had my own breakdown a few years ago where I mentally and physically burnt out and it was the loneliest time of my life. Remember you can’t always tell who is having mental health battles, as it’s often invisible and often the people who need the most help don’t want you to know they are struggling… and from my own experience I didn’t know how bad I was feeling until it was too late to prevent it… I have also have loved ones who have battled depression, anxiety, mania and it’s a really hard battle… There’s a poem by Stevie Smith called ‘Not waving but drowning’ and it highlights that you never know what someone is going through… this poem breaks my heart because someone really close to me told me that’s how she felt… through the whole of her life. 😢 so let’s just all look after each other a little bit more and also ourselves ❤️❤️❤️❤️ #mentalhealthday2022 #selfcareisthebestcare #mentalhealthmatters #loveeachother #lookoutforeachother #mentalhealthawareness

[colitisandme]

To my darling husband,

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 ❤️❤️❤️❤️

[colitisandme]

[colitisandme]

loss

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.

After we lost you… my body didn’t cope at all. My mind was hurting, and I think my body hurt as well. My poor brain couldn’t cope with the trauma of that Christmas Eve and I wasn’t very well. I think the trauma over those 10 hours, and the no support or outside help gave me some PTSD. The next week was a blur of appointments, scans, numbness, longing, grief, self-anger…. And I still feel those things. Now 6 months on, my heart still hurts, I have had near panic attacks when the closest people to me spoke about their excitement about their own babies for over an hour…  a mere few weeks after we lost you and I am sorry I didn’t say something. My body has been turned inside out. My immune system has plummeted. I have had covid, I have had shingles, I have had PID and other infections… I feel like I am on a roller-coaster and I can’t get off. Its never ending. I am sorry I haven’t grieved properly… I am sorry I haven’t written about you sooner. I am sorry we haven’t told people about you and how we lost you and how much we are hurting and how I am heartbroken and aching for you. I am sorry I haven’t shared my pain with my loved ones. I am sorry I couldn’t speak about you and the joy you gave us. I don’t know why… I don’t think I could bear it. People just expect you to get on with it following a miscarriage. There’s no rule book, there’s no guide to grieve and I think I failed at it spectacularly. I am stubborn and I am resilient, and I thought that would carry me through. That it would be enough, and we could go right back to trying again. But my body as usual has other ideas and is imploding. Spectacularly. once again forcing me to confront my fears and be kinder to myself. I think I need to think about you more. About every little flutter you gave me, the protection I had for you, the love we had for you. How much joy you gave us. One day we will have our family and you will be part of it. You are always with me and always will be. I love you my dear baby and if our love could have saved you would have lived forever.

[colitisandme]

Lymphocytic colitis… it’s what I was diagnosed with. microscopic colitis is a member of the IBD family, characterised by inflammation in the colon and by getting frequent watery diarrhoea… many suggest that its partly caused by the immune system going bananas. it’s diagnosed by biopsy from colonoscopy. There’s so many other symptoms. When mine started, I was going to the loo 15-20 times a day, had joint pain, stomach pain, urgency, couldn’t tolerate food, water… I was exhausted, I had stomach spasms. It’s a disease that is massively misunderstood, horribly misrepresented, and has very little media attention, presence and conversation. It’s misunderstood by our own drs. It’s considered rare, yet 1000’s of us silently suffer. 😩 we get little representation… but we are part of the IBD family. We are all in this together, and our lives are impacted by this illness. Symptoms are harsh, treatments few, We are many. Let’s keep talking and sharing and supporting. 💪💪#microscopiccolitisweek #lymphocyticcolitis #badguts #poorlybowels #ibdwarriors #ibdawareness #wearenotinvisible

[colitisandme]

Side effects of shingles medication vs actual shingles…. It’s like flu/stomach flu on top of nerve pain and feeling like death. Shingles the gift that keeps on giving. Sitting on the sofa with a pounding headache, aching all over, ice on the back of my neck, trying with all my might not to vomit… Sodding medication. Sodding shingles! 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢 #medication #medicationsideeffects #shinglesvirus #nervepain #ick #feelingill

Side effects of shingles medication vs actual shingles…. It’s like flu/stomach flu on top of nerve pain and feeling like death. Shingles the gift that keeps on giving. Sitting on the sofa with a pounding headache, aching all over, ice on the back of my neck, trying with all my might not to vomit… Sodding medication. Sodding shingles! 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢🤢 #medication #medicationsideeffects #shinglesvirus #nervepain #ick #feelingill

[colitisandme]

You are brave. You are important. You are precious. You are incredible. Even though it hurts, even though your eyes are sore and bloodshot, even though your bones may ache, and you feel soul achingly tired. Even if you are dreading your next drs appointment, or phone call to organise your next meeting. Even if you are lost for words, lost yourself and waking up fills you with fear for what the day may bring. I WANT YOU TO KNOW YOU ARE AMAZING! You are enough! You are loved and important and should be so proud of yourself. ❤️❤️❤️ one moment at a time warriors, one step at a time, moving forwards 😘💪👏❤️

#youareenough #youarethebest #youarenotalone #chronicillnesswarriors #amazingpeople #proudofyou #forwardsteps #loveyourself

[colitisandme]

For anyone struggling, for anyone whose heart is broken, for anyone who feels alone, lost, scared, bewildered and like the world is sitting on you and you can’t breathe…. I send you love, I send you light, I send you hope ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️ #hope #lovematters #lightinthedarkness #nevergiveup #mentalhealthmatters #yougotthis #lookafteryou #reachoutforhelp

[colitisandme]

Self care, don’t care.
Before I start this blog post, I want to say last month was probably one of the most exciting months of my life as I became a finalist at the Wego health awards 2021 for Rookie of the year category. I could not and still cannot believe that my blog, Social media page and general posts resonated so strongly with you lovely lot and is recognised so highly by Patient leaders across the world. So thank you. That night and the excitement I felt throughout the whole of the month is something I will never forget. I love you all. 😊
So, the reason that I have not posted a full blog for a few months is … well honestly like I have felt like over cooked spaghetti. You know when pasta is cooked to long, and it all gets sort of mushy and stuck together, people avoid it, make appreciative noises when you bring a plate of it out, and when your back is turned, they stuff it behind some sort of pot plant or when it becomes so claggy you could use it as some kind of DIY alternative for tile glue. Well yeah, like that. I think the thing that started it was the realisation that I would have to go out into the world after lock down – back to work, seeing people, whilst still trying to stay safe and well and not feel like wallpaper paste. It was also the scary realisation of how Phyllis has very much become a permanent fixture in my life and how my mobility and general staying ‘uprightness’ has got worse in a year. Suddenly the safe cocoon I had built for myself, and my husband was obliterated. I suddenly became very wary of others, especially large groups of people with faces. The walk that I could complete which would take me to the bus stop a year ago became this game of Russian roulette to see how impossible it would be to carry myself, a bag on wheels and walk in a straight line on a 60mph road with no pavement, and I was pretty sure there was a higher than likely chance, if I fell over, I would get rolled on by a vehicle or 6 coming in the opposite direction and I would spend the rest of my life in 2D. Pre fibro, I used to be able to hop in a ditch with care free abandonment, waving merrily to all the passengers in the cars going past, letting the cars whizz past me in the knowledge that I was safe and sound (albeit muddy) but oh Mama those days are long gone. Since Fibro makes me feel like my legs are tied together with bungee cords and my reflexes are not up to par, hopping anywhere would require me to be lifted up on a trampoline by a team of 4, said team pressing me up and down in unison in some kind of bouncy motion, then hoisted up by winch, until a team of workers could create some kind of solid landing platform for me to land on. However I fear the reality of me trying to leap out of the way as a car comes screaming towards me, would cause me to losing my footing and end up arse over face, in a ditch covered by twigs, moss, grass and last nights remnants of KFC, then trying to scrabble out of said ditch, swearing, removing, chicken wrappers out of my hair, apologising to the squirrel I have just rolled on. All whilst some twat face leaned out of a car window, absolutely wetting themselves at the sight of this mad Stig of the dump like creature covered in mud and tears, stopping only to take a video of me for their social media page. Then once I had managed to dig my way out of said ditch and on two feet, I would have to drag my poor bruised, hair straggled self to a bus stop filled with suspicious people all wondering why I look so dirty and smell of chicken and suddenly have 3000 views on you tube. That thought is stressful. All those tasks I didn’t have to worry about whilst safe in my little bubble, became now something extra to worry about and I have to admit I have not coped with the change very well. As well as that my darling husband, (yes we still like each other after a year of us both working from home) suddenly started a new job, a better more shiny job, and I didn’t see him as much. I missed him, in fact I still miss him. I lost my lockdown buddy and suddenly the world became much more difficult to navigate with chronic illness, and I retreated into my shell like a sad turtle, not sure how to re-integrate myself back into society. 
I know I have not been alone in my thoughts. I met up with one of my darling friends a few weeks ago, and she confessed she had been struggling over lockdown. Her feelings very much echoed my own, except I felt all the things she was feeling now the world was opening up again and so I wondered why? Why now when we have the choice to go out more and explore and be free, dance in the sunflowers with our hair blowing in the wind, why now am I feeling like the feeling of going out fills me with dread and anxiety? I think it’s the feeling of losing control. In my bubble, I had complete control of my own actions. For one whole year, I went out about 6 times throughout the pandemic. I created this lovely, safe, nest for myself and my husband. It was comforting and familiar. Now I feel like I have lost that. I have returned to the office where I work, I know because I am alone in my house I need to do things to upkeep my own mental health and now feel like I have to go out. Its this horrible catch 22 situation where I feel nervous leaving the house but then sad if I stay inside. There’s no safe space for me anymore, plus I had to fully confront head on the effects of fibro and the chronic fatigue syndrome a year on.. One person asked me ‘ So, why were you able to do….. and not able to now?’ and my answer was ‘BECAUSE ITS BEEN A YEAR SINCE I HAD TO AND PHYLLIS IS NOT HAPPY WITH THE NEW ARRANGEMENTS’ followed by ‘Please by all means if you have any grievances, take it up with her I am sure she would be delighted to answer any complaints you have to why I am suddenly not able to walk without looking slightly drunk/ lob sided, speak without repeating myself, and losing the words for toast but be please be aware she likes to swear and bite’ …. and that’s why I feel like over stretched cheese. 
So I have had to regroup…. and quite honestly, I am not there yet. It is hard. I am falling into a rut where I am struggling to leave the house or get out of a very stale routine. I have become reliant on my ‘comfort things’ to help me get me through my rough days…. An abundance of tea, MasterChef Australia, MKR, Disney and pyjamas (whilst at home) and I feel like I have lost my Jess spark and not sure how to get it back. I know I am going to have to put a lot of work into self-care to get me back on an even keel, drastically reduce my tv time drastically, start arty projects again, go and see real people with real faces, stop glaring at strangers not wearing masks, follow a routine, say my self-affirmations once again, listen to mindfulness exercises, complete more meditation…. Its going to be hard work. But I refuse to lose myself again. So, if I am quieter than usual, or seem a bit lost, It’s because… because well I am a bit lost. This new world is hard to navigate whilst juggling fibro and LC and CFS and sometimes I just want to drop all my juggling balls and quit the circus. So, for a little while I am going to focus on Jess. And gently supporting myself to feel like me again, one step at a time. I know Phyllis is going to hate me and with all the change I have spent more time on the toilet than recommended dealing with Colins ever changing habits and demands…. But its something I need to do, and for others trying to step back into the world after all this upheaval and unease, I just want to give you a big hug. You got this. Whether you struggled through lockdown, or are struggling now out of lockdown, please be gentle with yourself. One step at a time and if you need to regroup and recharge, then you do that. I am going to try and speak about the way I am feeling and encourage you all to do the same. After all, with this ever-changing world of chronic illness, symptoms, medication, appointments and this new normal, then its important we all support each other because we are all in this together.