Birthdays and Belly ache

So my son turned 14 yesterday. It seems so crazy, like only yesterday he was the adorable little chubbster above. They grow way too fast.

He enjoyed two birthday cakes, one from us and one made by his Nan and lots of great presents, including a kindle fire, some technics, lots of money (he’s main request,) and some games and books, including a challenging puzzle book for very clever kids, compliments of his Godmother, that bitch I know, Sam. (Note: she wasn’t impressed by me calling her my friend Sam, so from now on I shall come up with a whole host of new titles for her, such as the one above.)

The day was going really well, even though my mother completely ignored my request that she come earlier rather than later, as we had things to do. She’s good at that.

Kye was building his Ducati technics motorbike, Dan was watching TV, and I was reading my book and was having only mild bursts of pain. 

Dan had even lit the fire, as it was pretty chilly in the morning. 

Mum came and we all chatted and Kye opened her pressie, a build your own robot hand kit, and she pop some candles on his cake, we did the whole happy birthday song and Kye blew out the candles, which caused Dan to Christen the cake corona cake, before he dished it up and we all had a piece and very good it was too. Although I cringed as both Terry and mum started feeding bits to Millie and Ludo. Bloody chocolate cake too! 

Thankfully because they know I don’t like them doing that it was very small pieces but still, it really annoys me, which is why Terry does it. He just that sort of person. 

Had I have tried to argue though he’d have snuck them much bigger pieces, I know, because he has done it before.

There poor dog Holly who is the sweetest little thing, is a walking barrel and god know how much her life has been shortened by all the crap they feed her and being a cavie x she’ll devourer anything and everything. 

They also have a little yorkie x who thankfully is pretty fussy when it comes to food and so has managed to avoid becoming a walking barrel, unlike poor Holly anywho, back on topic. 

So mum and Terry were just leaving when my stomach started to churn and I got the feeling that I needed to poop. I’ve been waiting since Tuesday for a poo, devouring laxatives trying to shift the blockage being cause by the intestinal stricture. I knew by shifting that I would ease the awful pain I had been in.

So then safely out the door, I waddled on unsteady feet to the bathroom and sure enough the exodus began and of my God, the smell, it was enough to wipe out the entire population of week. But I did not care, at last it was all coming out, at last I was going to get some proper relief, or so I thought. 

What followed however was far from relief, I was besieged by wave after wave of agonizing stomach cramps, so bad, death seemed preferable. 

I have to admit, it was so bad I was starting to think A&E was my best option. 

But it was Kye’s bday, I couldn’t do that on his birthday. So I determined to tough it out.

I swear it was like someone was trying to rip my insides apart, and in the end I had no choice but to sleep, a quick nap I thought, just to get me through the worst. It was about half 5 at that time, so to sleep I went and a sleep I stayed till half 9 , just half an hour before bedtime. 

And when I woke, things were no better. Another toilet break, with more of the stinky stuff, and then bedtime. 

Walking was agony, lying down on the bed, agony! 

I couldn’t believe how much pain I was in. Then I wake up at 4 am. 

My stomach feels still and quiet and I think it has mercifully stopped, but nope, as soon as I go to get up there it is again. 

God help me! When is this gonna end, because the Infliximab doesn’t seem to be doing anything, and every time I think things are improving it comes back with a vengeance. 

But what do I do? Do I call the doctor or my IBD team at the hospital, because since I got my diagnosis neither has been all that much help. 

People who have Crohns, say just go to A&E, that that’s the only way you get the help. But I don’t want to be stuck in hospital for God knows how long just so they can pump me full of pain killers, I’d rather be at home with my family, waiting for the pain to ease, which so far it always has given time. 

I just want them to figure out a medication that’s actually going to work, like the steroids did. Because I’m really not sure how much more of this I can take.

So yep, I’m struggling at the moment, really struggling. And I’ve no idea where to turn for help! 

I guess I’ll just have to hope the pain eases up today. 

Well, that’s it from me for now. 

Love and hugs

Joss xx

Book thoughts, The witchling’s girl by Helena Coggan

The blurb: In a quiet street far from the river, with an ancient tree growing through its walls and floors, is the House of the Dead. There lives the witchling: healer, midwife and conduit between the world of the living and the world below. A witchling must give up her family and friends and spend her life alone, tending to the sick and carrying the dead down dark tunnels to the underworld. 

Haley was born with the gift of death-magic, and at the age of seven her mother abandons her to the witchling to be raised as her successor. But as Haley grows older and learns her craft - as invading armies pass through her town, people are born and die on her floor and loyalties shift and dissolve around her - she finds it harder and harder to keep her vows and be the perfect and impassive healer.

But if she can’t, it will be her downfall - and that of everyone she’s not supposed to love ...

My thoughts: Imagine being seven years old and abandoned by your mother, to the most frightening person in your town. 

The longing to return home, the fear of your new surroundings and the strange person who now rules your life. 

For young Haley it must be devastating. And Helena Coggan weaves a realistic portrayal of this young girls anguish and rising curiosity as she begins to accept her fate. 

While also weaving an intriguing fantasy world, that merges seamlessly with the characters within it. 

My heart went out to Haley and Miriam, both thrust into a life they didn’t ask for and didn’t want. Torn from their families and expected to care for people who feared and shunned them. 

Forced to suffer abuse, for what must have felt more like a curse than a gift. Simply because they were born different. Something, I think many readers could relate to in their own many varied ways. Be it poor eyesight, that means they require glasses, a disability or illness, or an accident later in life, that disfigures, even something as uncontrollable as the colour of your skin or your sexuality. The world is afraid of that which they deem different. As if that difference may somehow infect them if they let it come to close. And Helena illustrates this beautifully in this book. 

The towns folk need the witchling’s and the witchling’s girl and yet instead of being grateful for them as you might think, they try to ignore them, pretend they are not there unless they have need of them. As if they are a dirty little secret, not to be acknowledged. 

And the persecution continues for Haley throughout her life, as she is forced into one bad situations after another and grapples for some small pockets of happiness, even if it means breaking the rules. 

It’s a heartbreaking story, that keeps you guessing with its many twist and turns and has a whole host of well developed characters, that capture your heart and have you rooting for them and for change. 

I really enjoyed this one and would highly recommend it. The only downfall of the book was that at times it did drag a little, but it was so packed with action these moments never lasted too long. 

Please note: I received this book from Netgalley in return for an honest review. 

Also please bare in mind that due to my Crohn’s disease I now struggle with pretty bad brain fog

Among other things, which means I sometimes muddle words or names, and forget how to spell the simplest of words (so frustrating) so apologies for any errors in this or future post, It was not/is not intentional, 

Health check

It’s been a rough few days, I have a pretty bad impaction and have been told it may be an intestinal stricture. It feels like my insides are twisting and the pain is awful. 

I’ve been dosing myself up with laxatives hoping to flush it through but so far, have had no luck. 

My energy levels are incredibly low. So much so I will probably need to nap soon. As I write this I am struggling to keep my eyes open.

This is the most tired I have felt since Tuesday and my actual infusion. I’m not sure why, as I work at 5am and that’s only half an hour earlier than normal. 

The weather here is awful, poring rain and pretty cold. I do not envy Dan having to be our in it. 

People have also started panic buying again, I guess they are all worrying that another lockdown is coming.

I think they may be right. 

Well i’m off to snooze.

Love and hugs Joss. Xxx

Book thoughts, The dressmaker’s gift by Fiona Valpy

The blurb: A gripping story of three young women faced with impossible choices. How will history -and their families- judge them? Paris,1940. With the city occupied by Nazis, three young seamstresses go about their lives as best they can. But all three are hiding secrets. War scarred Mireille is fighting with the Resistance; Claire has been seduced by a German officer; and Vivienne’s involvement is something she can’t reveal to either of them. Two generations later, Claire’s English granddaughter Harriet arrives in Paris, rootless and adrift, desperate to find a connection with her past. Living and working in the same building on the Rue Cardinale, she learns the truth about her grandmother - and herself - and unravels a family history that is darker and more painful than she ever imagined. In wartime, the three seamstresses face impossible choices when their secret activities put them in grave danger. Brought together by loyalty, threatened by betrayal, can they survive history’s darkest era without being torn apart?

My thoughts:  I struggled to get into this one at first, although I can’t be sure if that was because of the book itself, or because I was in a pretty bad place, pain wise with my Crohn’s at the time. So I feel like this is one I will need to go back and reread at some point when, I’m fairing a little better. 

The fact that I do want to go back and reread says a lot for this book though, and I actually devoured the last half pretty quickly and was touched by the character’s strength and determination, in the face of horrendous treatment and seemingly insurmountable odds. 

This authors character development wasn’t as strong as I would have liked, the three seamstresses personality’s do seem to bleed together quite a bit, with little to really distinguish them. And Harriet seems a little pointless to the story, until the last few chapters, where she is used to highlight the struggles of women in France in world war 2 and the effect their trauma may have carried through the generations. 

That said though I do feel that this book carry’s a beautiful message and one that I found very relatable and uplifting, given my present battle with Crohn’s and the horrible chemo, they are pumping into my body. 

In one of Harriet’s chapters, as she is piecing together all she has learned we read “Claire and Vivi showed how much the human spirit can endure: brutality, cruelty, inhumanity - all of these can be borne. It is the loss of those you love that is unbearable.”

And she is right of course, we are capable of enduring far more than we ever imagined possible, and it’s through these trials that we grow and become stronger. And Fiona (the author of this book) seems to have an incredible grasp of human nature, the ways we doubt ourselves and the way in which despite those doubts we are able to over come seemingly insurmountable odds. 

And the three seamstresses all show this in their own way, as each one battles feelings of self doubt, guilt, and remorse, while continuing to fight to survive, in a cruel and inhumane world. Putting themselves at risk over and over again, as they fought against the evil that was all around them, doing seemingly small things, that made a big difference, not necessarily to bringing the end of the war, but certainly to a few of the battered souls who found themselves caught up in it, and desperate for salvation. 

As is expressed again  in one of  Harriet’s end chapters that reads : “They were ordinary people, but the extraordinary times that they lived in saw them step up to become extraordinary too. No matter how tough it got, no matter how dark the night, they never gave in.”

In today’s modern world, it is hard to believe that we could endure and survive as they did back in the 1940’s. The recent world pandemic of COVID - 19 , certainly hasn’t portrayed the human race in the same light as those facing the horrors of world war 2. We have moaned and complained, at simply being asked to stay at home, and wear masks, not caring that our selfishness may put others at risk. While our ancestors, waved their loved ones off to war, not knowing if they would ever see them again. And the women stepped up and worked in munition factories and the land army and went across into Europe and desperately fought to save the lives of those sent to fight for us, enduring things we can’t even begin to imagine. 

But I like to think that Harriet is right when she says “I know I have a little of her courage. I know, if I am called upon, I will stand up, as she did, and turn to face danger. I won’t run away. I will fight for what is most important. For life.” 

And that’s the reality isn’t it, for every bad person out there in the world, there are thousands of ordinary people who are capable of extraordinary things. And as history has shown, it’s those ordinary people who can change the world. 

And it’s that message of hope, strength and love that Fiona hammers home so well and which makes this book a beautiful and heartwarming read. That reminds us of what those who came before us sacrificed, in order that we can now live in a world that is no longer suffocated by the hateful minds behind the atrocities of world war 2.

And though we can never truly erase all the evil from this world, as Fiona shows by illustrating the hate in Harriets own times, through the terrorist attacks that plagued France and the rest of the world, not so many years ago, we are, as a whole, bigger and stronger than that evil and that is why it is so important that we never forget. 

So yes, I recommend that you not only read this book, but share this story with others, to keep alive what all our ancestors sacrificed for us and future generations. To help those struggling in whatever form, be it to fight for their rights, or for life, as they battle physical or mental illness, or through the loss of those they love, to stay strong and keep on keeping on. 

I will certainly be reading it again in the future, when I can fully absorb it in its entirety. 

Love and hugs Joss xx

P.S. apologies for any errors I may have made in the writing of this and any future posts. My Crohns and the chemo medication I am on, can make it difficult for my brain to function  properly, meaning I muddle words sometimes and misspell things among other errors. 

So please bare with me and know that I am trying my best  and remember to stay healthy cause the alternative sucks XX 

Recovery

    Well I had my infleximab infusion yesterday and it went okay. They had a lot of new nurses training, and that meant things didn't go quite as smoothly as they normally do. 

    Things were much slower for a start, it took an hour for them to get my cannula in, but I didn't mind as they were doing there best and they have a lot to learn. I couldn't hope to retain all the information they have too. 

    Then when they were trying to put in the cannula, there were issues. The first needle she tried, she said felt like it was blunt, the second wasn't going in right either, then one of the trained nurses realised where she was going wrong and showed her. Still though she couldn't get the vein and for once it wasn't because my veins were being difficult as the the trained nurse said they were really nice and clear. 

    In the end the trained nurse tried and got it in first time. But by this point I had about 8 stab points on my arm. Bless her thought, the nurse in training, kept appologising and I told her she didn't have to that it was fine, but she still did. 

    Then it was another hour before they had my premeds ready to go, and half an hour while the trained nurse helped her to work the machine, to get it pumping everything in right. 

    I can't lie I was clock watching like crazy, Dan hates the city and trying to find stuff to do while he waits and so I am always keen for things to move quickly. But after the premeds there were delays again, with getting the infiximab started and by this point I knew it was going to be a really long day. 

    I talk to them about my hair, and some other issues I was having but was just told it's all normal reactions to infliximab because it is a Chemo drug. 

    I was also told they were upping my doses, because the bloods they took at my second infusion weren't showing enough of an improvement, so the symptoms were likely to get worse and that if this didn't work they would have to try a different chemo drug. Yay!!! 

    I really hope it doesn't come to that, I'm just starting to get a handle on all this ones lovely little surprises. 

    So I got there for 10 and didn't leave till about 3pm. The infusion only takes about 2 and a half hours at the moment. So on a good day I would have left about 1, but it's okay, like I said before, everyones gotta learn sometime. And where would we be without our lovely NHS and all the wonderful people that choose to work for them. 

    So how am I today? Pretty tired but thats normal, a bit unsteady on my feet, and getting my ass kicked by stomach pain, cause I had a sneaky big mac yesterday. Until now I had been sticking to filet-o-fish, cause I knew that doesn't cause me problems but yesterdays infusion went on so long, I was like screw it I'm having a big mac, even though I knew it would be sorry, not sorry, until today. 

    But honestly some days you just get so fed up with it all, you just couldn't care less. And I wasn't a hundred percent sure what sort of reaction I would have to a big mac, as I've not had one since I've been poorly, but given my crohn's tends not to like, salad, or beef, both of which the big mac contains, it was a pretty safe bet it wasn't gonna be good. Still it tastied amazing! I shall relish that one though, cause I won't be rushing to have another lol. 

    Today I've mainly been napping and going careful. I'm not really up to much else to be fair. 

    But I just wanted to pop on and let you know how it went, but I shall head of now, as Tweeters is kicking off as he wants his food topping up. 

love and hugs all and remember to stay healthy, cause the alternative sucks! 

Preparing for infusion day

So tomorrow is infusion day, this will be my third infusion of Infliximab. I’m not feeling so far today. I’ve got a lot of stomach pain and noise and I’m feeling pretty tired. 

My prep day is usually spent making sure I’m all ready for tomorrow. For me this means picking out what I want to wear. It needs to be a top with sleeves that can be rolled up comfortable or no sleeves and a cardigan or something that can be easily removed on cold days, once I get to my infusion. 

I’ve worn my fav top for the last two infusions which is a nice loose fitting top with a star on it, which I can roll the sleeves up on real easy. But I’m feeling like this time I need to wear something different, as I don’t want them thinking I just live in that top lol. 

I also need to make sure my power bank, phone and kindle are charged, seeing as I am currently reading a book on my kindle. 

My power bank is largely a back up because my phone battery burns up quickly when I am using 3G or 4G a lot. 

I also try to get anything done, like replying to any of my penpals, before the infusion, as I can be too tired for a few days after, to be able to do this, at least with out loads of spelling mistakes and me constantly repeating myself, damn mind fog. Currently I just have one reply to do so that’s not too bad. Although I’m not sure it will go all that better today, than tomorrow given how tired I am at present, but I’ll give it a go. 

And of course housework, gotta get that all caught up. Again not too bad, the kitchen just needs a once over, and I want to clean out tweeters cage and  all his perches, that was meant to be done yesterday but I was not doing well yesterday for pain, so gotta make sure it gets done today, not that it’s filthy or anything but I just find it easier to do it when it’s only needing a light clean, because if I only did it as often as they say you are meant to, it would be so much harder. 

See they say you only need to change the sheet once a week and do a whole cage clean and disinfect once a month. Where as I do the whole thing once a week, because it makes it really quick and easy to do. Which is a must for me. So two fairly easy cleaning jobs to do, I’ve miraculously managed to get ahead of the game for once. 

I keep debating whether I should do the shopping today or not as well, we order online from Asda and this needs to be done by 10pm tomorrow or I lose my delivery slot. I hate doing the online shop, so probably better to do it today, than tomorrow, just to get it over and done with. 

My appointment is a morning one, so I don’t have much time to get things done before. Especially as it takes almost an hour to get to the hospital. 

I need to try and drink plenty of water today too, as this apparently makes it easier for them to get a vain, when they put the cannula in.

Although so far they have been great at that, getting it first time, every time. But I guess they do a lot of them on a daily basis, so must be pretty skilled at it. 

I also need to write up my little list of things I need to discuss with them so I don’t forget. Main thing at the moment is how rapidly my hair is falling out. 

I’ve also been getting a weird rash on my face, normally it’s worse on my cheeks and they get very hot. But I think that’s about it this time. 

I woke up this morning with my tongue all peeling again too. It’s so gross! 

Since I started the Infliximab I get this a lot. I already discussed that with them though. 

So that’s the plan for today. That and to try not to nap, I hate napping, I feel like I am wasting so much of my day when I do. And it takes me so long to work through everything as I’m so bloody slow now I can’t afford to waste any time. 

I also want to try and get a couple of quarts read on my current read, The dressmakers gift, by Fiona Valpy, as I’ve been approved for my first Netgalley requested book,  The moon is missing, by Jenni Ogden. 

With Netgalley you have to build up a good rep, for reading and reviewing books quickly if you want to get accepted for more. So as I haven’t used it for a while, I need to build mine back up again. I was pleasantly surprised to find that I did still get accepted for a book I had requested only yesterday, so quickly. I thought I might get a few rejections first, given my inactivity. 

I felt really bad when told my friend about Netgalley back when I was using it a few years ago. As she requested a lot of books but never got accepted for a single one. 

She doesn’t blog or anything like that but she is an avid reader. So I’m not sure why she wasn’t accepted. 

Any who, I can’t keep wittering away here as I need to get started on my prep. 

Have fun all,

Love and hugs Joss xx

It’s been a long time

It’s been a while since I posted, I’m not gonna fob you off with loads of excuses, the reality is, I just didn’t feel like it and wanted a break from blogging. I didn’t expect it to be quite so long a break, but that’s life I guess. 

So what’s new, well I recently received a diagnosis of Crohn’s disease, that’s been interested. 

I’ve spend more time at the doctors and hospital than I ever imagined I could, or would, and am currently on loading doses of Infliximab, it’s not a very nice drug and is making my hair fall out. 

That’s probably been the most distressing part for me so far, but I am slowly coming to terms with it and have purchased a really pretty wig, to hide the damage and in a lovely pale pinky purple, purple being the fight colours or awareness colour for Crohn’s.

I find myself with a lot of time where I don’t have the energy to do much, so have plenty of reading time again, so I’ll be reading and reviewing books on here again. As well as using it as a place to vent about my health, because we all need to vent sometimes. 

My next infusion is Tuesday, this will be my third infusion and after this one the next will be in 8 weeks time and then I’ll have them every 8 weeks. The loading doses which is what I am currently on, are a bit different. They go week 0, week 2 and week 6, which is the one on Tuesday and then we get onto the every 8 weeks routine. 

The infusions are okay, I feel a bit tired afterwards and get some muscle weakness but that only last a few days and I am told once it starts working, which can take a while, it will make a huge difference to how I am feeling, which I really hope is true because the pain isn’t much fun right now. 

We’ve got a couple of new family members, Millie our little rescue Cairn terrier, she’s the most amazing girl, so loving and cuddly but a little weirdo lol

 And Mr Tweets aka Tweeters who is a little canary, he’s so sweet! 

Sadly we also lost my Harley de, he was 18 when he passed and it broke my heart as he has been with me all his life, even before he was born, as his mummy was a part of our family. I was devastated as he was my world.

We’ve still been doing our vintage rallies with our miniature steam engine, Trampie aka dotty.  Except for this year of course what with COVID. 

I’ve lost a LOT of weight dropping from 38 stone to 21 stone. Still away to go but the one plus of Crohn’s lol. Although it wasn’t all Crohn’s, I did work pretty hard myself cutting out all the junk. 

Sadly, thanks to Crohn’s I still get a puffy face sometimes, which sucks. But I only get this some

Of the time and hopefully the more weight I lose the less it’ll bug me. Fingers crossed. 

And I’m no longer a smoker!!! Check me out. Okay so it wasn’t really by choice, again the Crohn’s, but still smoke free. And loving it. 

We also have a new caravan, this time with a fixed bed, sooooo much easier! And we love it. 

Kye is doing great and has now been diagnosed with CU and Aspergers. But knowing what is going on has been so amazing and has meant we have finally been able to get a handle on his conditions and help him to manage them. 

He’ll be turning 14 next week, how crazy is that! 

Dan is great too, he has been helping my friend Sam with renovations at her charity, hilltop animal haven. They had to sell the main house in order to keep the charity going so he helped her clear land, put in a septic tank, solar panels and a wind turbine and situate two static’s for her, one for her, the dogs and birds to live in and one for all the cats. 

It was a long project and a lot of work but she is all moved in now with the animals and they are all doing great.  And he did all that with rushing me too and from hospital and doctors appointments, he’s such an amazing and caring guy. 

And I’ve been doing a lot of drawing! 

Harley and Nibz (the cat) are complete but hooch still needs a bit more work. (The rottie) 

Well that’s all for now, I’m sure I have missed loads of stuff but if you have any questions feel free to ask and I will do my best to answer them. 

Love and hugs, as always 

Joss xx