Matt would like to thank everyone for supporting him with his tough challenge, he says it kept him going to the end.
Thank you to those for donating, it means so much to him, and us. You guys are just great.
Tomorrow is world IBD day, this time last year I had just avoided life changing surgery whilst pregnant and severely flaring.
Thanks to all of the NHS support, research and drug availability this year I’m sat in the comfort of my home with my baby girl. There is no cure, so I am grateful of every pain free day that comes my way.
So whilst I’m sat at home with a warm cuppa my better half Matty is on his way to do something amazing for Crohns and Colitis and World IBD day.
Matt and his work team are attempting to climb 24 peaks in 24 hours to raise money for the cause. This challenge covers some of the toughest terrain in the UK, ascending 13,986 feet in total, climbing Scafell Pike – the highest peak in the UK.
If anyone is feeling generous and wants to support Matt by donating pennies to crohns and colitis then please follow this link 🙂
I will update after the weekend and let you know if he managed to complete the tough challenge ! (with pictures)
Thanks to everyone who can donate to this charity – it makes so much of a difference to real lives and families , like mine 🙂
Show your support – wear purple !
April 6th 2016. I felt my little baby kick for the first time. Still yet to know whether baby was pink or blue I felt my tummy doing flips and somersaults, whilst lying flat and rigid in a loud, noisy and claustrophobic MRI scanner. I could barely walk or hold my head up, I was choking on the nose tube and I’d been in pain for weeks. I can’t remember much of the room but I can still remember that feeling.
In that desperate moment I knew it was going to be okay. She was telling me to fight.
I don’t think I would have got through that week without her. The worst and the best moments of my life.
The first time little Isla properly waved ‘hello’….
The reason I post tonight is because I found this cute poem I wanted to share. I must have saved it at the time. It definitely kept me going, brings back lots of emotions and warm tears for sure. Strength, hope, courage and terrible fear but despite that a little bit of determination.
Mummy can you feel me,
I’m wriggling for you,
I can hear you say you love me,
Mum, I love you too,
Very soon you’ll meet me,
And kiss my little face,
I will feel your warm skin,
And admire you for your strength and grace.
Mummy are you ready, my life’s about to start,
I will hold your little finger,
But you will hold my heart.
Just when I think I’m invincible and the world is good it comes back and smacks me in the face. Reminding me that it controls me, I don’t control it.
Just as I’m building up for a summer of fun and the prospect of returning to work I get a reminder that some days are just, well, crap.
The last seven days have been tough, all of the usual symptoms have started to return. This coming weekend is a year anniversary since I was admitted, pregnant with Isla. God, if I had known then I would not see the light of day until the month of May I’m not sure how I would have reacted. Alas, a year on, we are here and I am very grateful of that, but why is the month of March and April always rocky? Spring has sprung, its the season of new life and my body seems to just want give up. Kinda backwards eh?
Anyway, I have a little life to look after now, so there is no room for feeling sorry for myself (well maybe just a bit). Motherhood is a hard as nails job on the best of days but yesterday’s trip to the hospital with child in tow followed by the essential weekly food shop nearly killed me. I guess a liquid diet doesn’t exactly have the same get up and go as a mug of caffeine with ten chocolate digestive biscuits.
So, I’ve been assured the magic medicine just needs a tweak. My eight week regime needs to be brought forward to six. Apparently patients who have already been on biological medicine tend to build a resistance a little easier. My infusion is this week, so I’m just doing as little as possible to get me in the chair. However the Remicade branded drug has been changed by the NHS and therefore my hospital to Remsima, a new, cheaper version, they call it a biosimilar. I hope cheap, doesn’t mean less effective, that would be the cherry on the cake so I pray this isn’t the start of the end 😦 I am not ready to feel like I’m running out of options.
Okay, slight exaggeration I’m not running out of options, I’m just panicking and miserable. Someone’s just turned down the dimmer switch and the light needs to just go back on. Pronto.
We shall see. I have a lot riding on these next few days.
Oh, and I’ve just realised it’s my first post of 2017. Oopsy …. Happy New Blog year to me 🙂
So it’s Monday 14th November , 13 weeks post c section and I’m back in the sexy green hospital socks, backless gown and tagged up around my wrist. I have carried off this look so many times I’m thinking I should invest in my own personalised gown rather than an over boiled one, softer on the skin!
I feel less anxious this morning than most hospital admissions, whether that’s because I’m not in desperate pain as such or that this minor surgery is planned I don’t know.
I feel a cheat a little though, cheat because I’m booked into a lovely private hospital, I’ve ordered my lunch and set up in my own little room with a view. I’ve decided to go private because, in all honesty the waiting lists are so long at the moment on the NHS I wanted to get ahead of the game, be well for Christmas (hopefully) and have work done before I flare again. (I know that sounds defeatist but I have to be real, Mr Crohns is never far away). So I have to be prepared. However all the good work the hospital up the road as done for me , the team and the nurses I feel like I have gone to the dark side. Ha. at least I’ve freed up a space for some poor soul to have NHS work sooner I guess.
So, wish me luck. Whilst you’re all at work I’ll be indulging in a heavy dose of general anaesthetic and pain relief … eeeeee floaty!
Happy Monday x
Apologies in advance if I offend any eager beavers, one man bands or self employed sales reps deluded and pressurised by some one above you in the sales pyramid or however these business models work.
I commend you all, I really do. There is nothing worse I can think of than being brain washed by these sales companies wanting you to sell their wonder products. It must be hard to keep motivated and get your business off the ground.
However, I have to say, you people really get on my wick. After the millionth sales pitch via Facebook I can no longer keep my opinions to myself, smile sweetly (or emoji smile!) and politely decline.
1. Aloe Vera is NOT a cure for crohns. It might help your IBS , but do not get me started on the IBS is NOT IBD debate.
2. I do not want to meet you for a coffee and discuss your products. You know nothing about my disease (if you did you would start by knowing caffeine aggravates my bowel anyway). You are praying on me because somewhere in the small print on these products they ‘claim to’ really help. They don’t . And they taste like crap.
3. If Aloe Vera was a cure I would have just bought a bottle instead of injecting myself with biological medicine , or enduring infusions made from rat DNA . I should have just called you, wish I’d known this before I checked into the NHS hotel and end up hooked to a plug in the wall for months on end.
4. Aloe Vera versus my lovely special chocolate shakes = errr no contest , chocolate shakes win. Any day.
5. You never bothered with me before ? Although, you seem to REALLY be interested in me now … oh please … don’t pray on those who spend enough money on prescriptions anyway. You don’t know what you’re selling. You don’t really care let’s face it as long as your order book adds up at the end of the month.
6. You are not a medical professional. There is also no medical evidence to suggest any of it is any good. Aloe Vera applied topically can help things like sunburn, eczema etc. I don’t disagree… but ingesting the stuff should be done cautiously with crohns patients.
7. Aloe Vera is a stimulant (the sales pitch used the word ‘cleanse’… yeah like laxatives cleanse… hmmm let’s see) … I don’t need any bloody bowel stimulants … thanks.
I think I’ve made myself clear. I’ve tried every recipe in the book… probiotics , turmeric, exclusion diets, I’ve even drank tree bark… yep that’s right BARK … (still not sure why I thought that would work) however I still cannot avoid the plague that is bowel inflammation.
Please do not waste my time, you offend me, such little knowledge in the effort to make yourself a quick buck. I am only interested in those selling wicked pain relievers (guess most of that stuff would be illegal huh?!) or a new large colon..
Yours sincerely ,
Sally Ann Rice … Aka. Miserable Aloe Vera hater and all those associated.
Not Aloe Vera !
P.s. I have nothing but love for Avon Representatives (gotta love an Avon lipstick or two ) or the occasional door to door sales pitch regarding a new paved drive or double glazed windows. (For the record both are just fine for now but you never know huh?!)
So last week I got my very own radar key, the gateway to all the locked disabled toilets in public places in the U.K. As part of being a Crohns and Colitis UK member the charity kindly posted me one out for free.
Apart from the key being HUGE, it’s a comfort to have it for those just in case moments. I mean, for sure I always consider myself ‘able’ so I don’t tend to think that I’m allowed to use the disabled toilets, which is silly really, I’ve always felt like I’d be watched or judged. I guess that isn’t far from the truth , as most people would see what appears to be an able bodied women just taking liberties (probably) !
Anyway, we will see if I get any reactions as I casually open the locked disabled doors with my magic key in my time of need. To be honest though, in my time of need I probably won’t give a s@&t what anyone else thinks anyway 🙂
I have been really pleased lately to see so many blogs and social media statuses pop up and talk about taboo subjects. It seems to be more of the ‘norm’ now for people to express themselves over social platforms so freely, the content being more of a personal nature.
I love this. Like, social media is so toxic at times for us all anyway. Of course, admittedly, we all put up the better looking pic of ourselves, sometimes do a bit of editing here and there plus a filter change so our usual pasty selves look a little more ‘glow’. Let’s face it we let people know what we want them to know, is all façade and showmanship at the best of times. Yes, we want to let the haters know how good life is without them, or old school friends that we are weekend millionaires, or whatever you have to prove, it happens you’re lying to yourself if you have never done it! Or okay, if you are not doing it yourself you are probably facebook spying on others and contributing to the overall audience! So to see genuine posts , brave statuses and blogs from different members from groups I’m in I find personally so refreshing. What I’m not saying here is that I take pleasure from reading some of the content, because I don’t thrive off others misfortune clearly , but it is comforting abeit scary to see so many battles are being fought daily. And. For once. social platforms do have their uses.
When I started blogging this year it wasn’t because I wanted the whole world to know my business, or that I wanted anyone to feel sorry for me or attract attention. (I hardly wanted to advertise my sick face with sexy tubes coming out of my nose!) However, it was simply because I was lost and scared , more scared than I had ever been for a long time, carrying a baby and not knowing what would happen. (And my my we all say it but hindsight is a wonderful thing sometimes if only I could go back to me in May knowing what I know now).
My writing was a little comforting release in a dark hospital room at nights, which from a mental health perspective started to make me really ill. Forget the physical problems the drugs changed me a lot, my personality and thoughts were so erratic that channelling myself made a big difference. The confidence you loose when you can’t make yourself a cup of tea for three months is scary. I really did regress in so many ways because that’s what hospital does to you, you loose your life, independence and basic human rights (it felt like at times) because for me, I personally couldn’t survive unless I was plugged into some sort of machine.
The suprise that anyone read what I wrote made me feel happy that people felt a glimpse of my pain, if anything purely for education about how vile the flip side of life is when you haven’t got your health. Although I couldn’t face many people physically and least virtually I felt like I had people around me supporting me. The lack of control frightened me, a control freak with no control. Recipe for disaster. I never actually thought I’d get better ever, so to now be blasé about my life, worry about what I have or haven’t got, live wrecklessly or focus on the wrong things is something that has changed completely because I refuse to go back to that place.
So as I now read others stories , anything from chronic dieases, shock accidents, bullying or mental health I read with a different view that these people aren’t doing it for the fame and name in glitzy lights it’s medicinal, it’s a release and actually sometimes writing I think is better than drugs. (Although I did find that I have more of a poetic flare when I was wired on the mental stuff). Shouldn’t joke, it’s so true though!
Okay I’m not saying writing is better than insulin for a diabetic … I mean the drugs we reach for or are prescribed as a crutch to help improve mental wellbeing like the need for antidepressants for instance might be lessened, if you feel like you have released whatever is on your mind you are sharing the burden, making yourself more confident and feeling less alone with matters than you think you are the only one dealing with, which of course sadly isn’t true.
It’s obviously not for everyone being so open… it still makes me very shy when I see people I know, or don’t know, who probably now know a lot more than I’d bargained for about ‘me’, my silly thoughts and some of the embarrassing ailments that come with crohns. I’m better on paper than I am verbally , but then I bet most people are. I should have continued to do what I did when I was ten years old and write a diary entry for every day for a year… it did me some good then, even if my entry’s were as basic as going to the park or having issues with my brother, 1995 was a good year on the whole, pretty problem free! I literally can tell you what I was up to 20 years ago with a little flick through my book, such discipline at a young age! However .. back then my words were like ‘I am sick I can’t play today’ … in today’s world I’d probably need three pages to express myself, oh how I’ve come on over the years.
I guess I’m just reflecting as Monday 10th October was World Mental Health day and it prompted me to think about what I’ve seen lately. Behind whatever suffering, people usually are battling some sort of mental health issues. Doesn’t have to be because you’re ill, modern life is bloody tough for us all in so many ways. The strongest people don’t cope, it’s a fact, they are just better at hiding it that’s all. There are a huge spectrum of disorders, fears and phobias out there, we are all different. If you can talk about it, however you feel most comfortable you should be proud, it’s a strength … I am and will never look back 🙂 it’s not completely curative but it’s a start.
Well here I am parked in the corner of bay D, ward 620. Most people bring magazines and a handbag of some sort. I have a pram, a baby bag, my bag and enough bottles and hot water to ensure we don’t get caught short on milk time and enough spare clothes just in case we have any explosions on our day out! I have lost the meaning of travelling light … if I could plug in the bottle making machine I would have probably brought that also.
I’m on infusion number five … thank god because the last couple of weeks I’ve been a bit ropey. You forget what it’s like to feel poorly and in pain until it comes back and punches you right between the eyes, or the bum in my case! However I can’t complain so far so good, it seems to be working to a point.
Infliximab infusions I have decided are a bit like a reward scheme … the more you have the shorter they get. Okay not as prosperous as my nectar points or Boots Advantage card maybe but getting told that I only have to spend two hours hooked up instead of three is a bonus. Mostly because as the time ticks my clockwork baby will need feeding spot on the four hour mark, she will not compromise so I’m already planning the logistics of leaving the hospital to my next point of call without having to sit in the car for ever feeding the little billy goat clocking up car parking charges.
Baby is not too impressed with today’s itinery ….