A week in the life 

It’s been a really busy week, made up of School runs, hospital appointments, ferrying the girls around, , and trying to get back into a gym routine, nothing manic, just getting back on the bike and being guided on how to get my fitness back somehow!, think it’s going to be a long journey but positivity is key!

Hospital appointments have had us in three in different hospital venues,  Ruby had an ophthalmology appointment which went well, then on the same day I had a check up about a non head related problem, which again went well.

This week brought a visit me a visit to Endocrinology,   Which I dread this shouldn’t really be the case, should it? I know I’m very lucky to be seeing a specialist (I realise others don’t get this luxury), but it’s always so demoralising. I’m always made to feel like I’m not doing enough to make myself better,  I know there’s very little on offer for me bar continuing to lose weight, Or a LP Shunt, so I was in a foul mood the whole day  the closer it drew near the worse I was, and didn’t those close to me know it  but this was due to my previous experience which  hadn’t gone too well, with it generally being a lecture on losing weight and gastric banding.  However I should not of been so hasty with my worries  as this appointment was actually really good, it’s just a shame the evening was ruined as for the third time during this illness an unpleasant man aggressively shouted at me in front of the girls about using a blue badge when none of us were actually disabled  🤷‍♀️! I give up.

So onto the really exciting part of my week today I ventured to a shop that’s been on my radar for a while, I have wanted to go for some time eagerly following their progress and watching them grow from afar on social media, and because everything I see online – I need (must have)

The shop in question is a fantastic shop called Belle Modelle, http://www.belle-modelle.co.uk when you enter the shop you are greeted by a wonderful array of colours, with so many beautiful items of clothing, home accessories, jewellery, shoes and bags, and not only that you receive such a warm welcome on your arrival from the gorgeous proprietor Leila Gregory.  


Now as many of you know, I’m partial to a new shoe, (what lady isn’t) and there were plenty to choose from, a wide range of colours and sizes, wedges, sandals, brogues.

I found a fantastic pair of Dolce and Gabbana Inspired embellished slides called Daisy stud slides. They are so comfortable! 

There is a good selection of clothing, so many summer outfits, again a good range of sizes available, this year we are seeing the Pom Pom taking to the shelves, colourful, fun and cheerful, so I couldn’t resist this lovely lightweight poncho – which will be making its debut at Glastonbury next week, I chose the grey colourway, they look fab on! 

So for those fashionistas out there I highly recommend a visit to this shop, it was well worth the wait for me, I’ve wanted to go for so long and I’m glad I did, everything was bang on trend, with something for everyone and if you cannot get to the shop then hit the link and do some online shopping http://www.belle-modelle.co.uk/index.php use code KABM10 for 10% off your order.

(Disclosure: This post was not sponsored, I received a complimentary Poncho to try out. I wasn’t required to write anything good, but I genuinely think this business is fab and would love to see their business grow even more .)

Retail therapy is always the way forward, it’s an effective way to improve your mood and excercise control over your environment, it can help with the transition  from negative to positive emotions, so go on what’s stopping you! Happy Shopping.

Have a lovely weekend 

ASIBTAF ❤️

Dear Kev,

Dear Kev
I said to you just this morning, I didn’t know what to blog about as I’m sure people are bored of me droning on about my illness, you said write it about something else for a change then.

So I thought I would write you this, we met properly way back in Sherborne in 1999, as you know I thought that you were a total tit, you approached me drunk, waving a carrier bag in your hand and a pint of Guinness in the other, you apologised for the look you were going for that day, but you had to buy this tshirt to replace the one you had spilt Guinness down.  Now this was not the first time we had met, we originally met in your home town in a pub, where back then you and your friends thought you were the top totty of town, and I was,  in your words “Gobby with big boobs” and not worth talking too! I can remember Lucy trying to get in your car, and you being very displeased at her actions as your car was your pride and joy, I used to watch you cruise around town in your white VW Convertible with your tunes banging out wishing I could be in it, only to be too young, too gobby but in my favour a good pair of breasts!

Fast forward a few years and we go back to that night in Sherborne, the tables had turnt, I am now worth talking too, but the feeling is not reciprocated, I thought you were too drunk, too old and too shy for me! But you didn’t give up, and we finally started our blossoming romance with a smooch or two in Pego (Pego those that know me will smile, and those that don’t, Pego was The Pegasus Club,our local small nightclub where the locals went on a Friday or Saturday night until 2am for a dance, stick to the floor, make new friends in the loo, drink and to check out the talent, many a relationship started at Pego, we all have many happy fun memories made in there, sad to think it’s now an empty boarded up shell.)

We went on many dates, and I just wasn’t sure, we were such opposites, you were quiet, shy and gentle, plus you drank way too much – which I later realised was as you said because you had no reason to stay at home, I was young loud, confident and out there, and a into Young farmers (the group rather than any random young male farmer!!)

You were established in life as a builder, you had a mortgage, a nice car, and I was just starting out, I was really scared of commitment as I had never really done so before, and just continued to mess you around  so you finally gave me an ultimatum – commit or go away and never come back, I chose the latter, I remember going home to Mum and Dad saying you had shouted that at me, crying my eyes out thinking you were such a knobhead, and them saying I shouldn’t see you again if you were like that.

6 months later I missed you, I missed you every darn day from that night you told me to go away, but I was stubborn (yes I know I still am), I missed you that much I would make my little brother come with me to stalk you in my Rover 25  poor Mike would be doing laps round town unaware we were actually following you around, then thankfully, out of the blue you text me on my birthday “Happy Birthday love Kev.”

A few nights later  I tried to contact you I rang, I text and nothing, just answerphone, I was with Sharon – whom I must say played a big part in this love story as she was generally there willing me on – we waited and waited –  finally you called me back, it was late but I didn’t care I had to see you and met you down moor lane bridge lol.

From that night onwards we were never apart, I guess I realised that you were a definate keeper, you may not be a man of many words, but the beautiful  words you have said I will treasure in my heart – for example on our wedding day you said –  you were the most beautiful person I had ever seen (and then you added I thought the wrong woman walked in haha)  I had to write that in as I was crying at the time and it made me laugh, which is what you always try to do, make me laugh,  we must be the only couple that cry with laughter because one time as your going off to work you stop, kiss me good bye and say I’m counting down the hours until I see you again!  any other woman would be find that a loving gesture but all we could do was laugh.

Now Kev not to say we haven’t been through some dark times we have, we have known what it’s like to hit rock bottom, for you to have no work, me have to borrow money from my parents to feed and cloth the girls, we had to sell my beautiful ring (un beknown to me my gorgeous parents brought it back and you paid them weekly for some time then presented it to me on my birthday – my heart burst that day I genuinely thought I would never see it again) to pay the bills.

We have argued, even got to a point where we wondered if we had future  – and we can’t change the past – I know We have both been in some bleak places you after losing your lovely Nan, me with the god awful depression after our second child was born, Losing my Grandad and recently with the IIH but you and my parents have got me through it, I am sorry that recently I told you to leave me, and that you should find someone better than me, someone who wasn’t ill, overweight and a pain in the arse, I thought you deserved a better life, one where your not always working to provide for us, because I cannot work, one where I’m not being whisked off to hospital – which I know crucifies you, you try and hide your feelings and until last September it made me think you didn’t care. (I know you do)

Last September you accompanied me to a Lumbar Puncture, you had never been with me before it was one of the good ones, I remember thinking you looked traumatised when you left me, but seemed ok the next day.

Two weeks later we had a night out, with our closest friends,  the alcohol made all of your true feelings come out –  everything came out, it upset me so much to see you broken, and how you said that Lumbar Puncture had made you realise you wished there was something you could do to make me better and that you generally feel helpless, do you know what Kev you do something to help, your there everyday when I open my eyes, you make me laugh, you are a fantastic Father to our girls,  you drive me crazy at times, your time spent in the bathroom makes me want to scream, when you forget things it drives me demented, when you can’t keep to the speed limits I literally want to karate chop you, but I want you to know I appreciate all you do, you do work so hard, we never go without and you know what else Kev in your own words like you said to me last week, Kirsty I do love you,  you know , always have done and always will- this is enough for me Kev your love, caring nature and sense of humour. 

So Kev when I’m being a complete bitch raving on about something that’s not really worth kicking off about – generally it’s when your driving my car, been in the bathroom for an hour or making me watch Sci- Fi, remember this –  we are team, and though I cry, whinge, can be hormonal, demand chocolate,  we have come through so so much and I thank you for being you, the other half me and I thank you for persevering all those years ago because you have made me who I am, wife, Mother family member and friend.

In the words of Whitney – And I will always love you.

All my love 

The Gobby one with the big boobs.

Embrace what makes you unique.

So apparently one in four British adults is obese, according to the UN Food and Agriculture Organisation, prompting fears that the UK has become the “fat man of Europe”.The UK has the highest level of obesity in Western Europe, ahead of countries such as France, Germany, Spain and Sweden, the report says.

Obesity levels in the UK have more than trebled in the last 30 years and, on current estimates, more than half the population could be obese by 2050.

Source: The State of Food and Agriculture 2013 (PDF, 2.44Mb), United Nations Food and Agricultural Organization.

I am that one in four person, I hold my hands up to it, I’m Kirsty and I’m obese, most of my adult years I have been overweight and struggled, though I have been fitter and healthier and happy with how I looked, how I felt, and naturally I long to get back to those days, I wasn’t a size 10 or anything but I was happy, I was a bit more body confident , throughout my adult years my body shape has changed frequently, and my husband has not once commented negatively, he loves me unconditionally, love handles and all.

Back then though it was a really dedicated journey to get to where I wanted to be, Most days  I was up and out of bed to the gym at 5.30am before Kev went to work, I had the best personal trainer you could ever ask for (thank you SB), she did my meal plans on a 6 weekly rota and she beasted me, but you know what I loved it!  The photo on the left was at Kevs 40th and on the right before I got ill in 2015 😏 I was strong not skinny lol. 

My personal weight issues go right back to secondary school, when you see this photo what do you see?

Hopefully like me you see a group of healthy and happy teenage girls? (I am back second from left) However people – ok boys at school didn’t see me like that, more often than not I would walk round with something stuck to my back saying ‘wide load’ or I would have derogatory comments from said boys. So from a young age I assumed I was “fat”, it didn’t matter how much my parents told me I was a normal healthy weight my brain was implanted with the fact I was overweight, I think this is so sad because looking back, I wasn’t I was “normal”.

I think there is such pressure in this day and age to achieve perfection, I have yet to meet one person (apologies if I have) who says to me – oh yes I’m so happy with my body image, it seems we are not,  we always wish for a change of something, I know I have said to friends who are tall, slender and stunning, how amazing they look, how I wish I had a figure like that.. to be told that they too are unhappy with their body, it would seem most of us have body insecurities, and it’s so sad but I totally understand, I have two daughters, and I tell them they are both beautiful and I encourage them to embrace their bodies, I try my best not to say I’m on a diet, I try to say that I’m healthy eating to help my head,  Sometimes one of them asks me what I think about her body shape, I have and always will tell her it’s just perfect like her. It’s a struggle enough for our children to grow up in this day and age with all that occurs plus threats of what society says we should look like via social media, all I wish is for all of our children to be happy with themselves, to love what they have, not too worry about body image, like I did.

I ask myself why do we feel so insecure  about our bodies, why do we wish we had bigger breasts, smaller bottom, or if we could be a stone lighter/ or even heavier and we all want that washboard stomach?
Historically, the ideal female body was strong and full-figured, (god I love this) as seen in icons such as Marilyn Monroe. But we have to remember every body shape is different, yet even as early as the 1800s, when painful, health-impairing corsets were used to accentuate the breasts, hips and buttocks, women were expected to strive for a specific ideal of beauty.

Below is taken from an article in the Daily Mail

Only 3% of women in the UK are totally happy with their body and 73% think about their size or shape every single day, a new survey has found. The survey of 5,000 women, commissioned by REAL magazine, found that 91% of women were unhappy with their hips and thighs, 77% were dissatisfied with their waist and 78% said they had cellulite. Three-quarters of British women were unhappy with their shape, 71% with their weight and six out of 10 said their body image made them feel depressed. Some 65% of those surveyed felt their life would improve considerably if they were happy with their body. 

Word has it, that we culminated our body image worries from catwalk models, tv, and the fad diets, that have seemed so appealing at the time because we too could lose 5 stone in 3 months if we drink a milkshake, (then you have the hard work of keeping it off) but the actual point here is that trying to create the ideal body shape shouldn’t be our ultimate aim anyway – we need to stop judging people by their looks in the first place.

Can we just take a second to remember that every single person is beautiful in their own way, if you think someone looks good tell them – think how you would feel from a positive comment, go on make someone’s day, they may look lovely, have a lovely smile,amazing make up, smell good or my personal fav – amazing shoes lol – tell them,  my Mum will be reading this thinking that I should practice what I write as her shoulder has been wet many a time from tears due to my own body insecurities.

For me it’s thought that my IIH will improve if I continue to lose weight, so far this month I’ve been back in hospital twice, I thought perhaps it was because I must of put on a lot of weight, as I hadn’t had weigh day for a while – no I had put on a pound from the last weigh day, I can honestly say I’m not happy with my appearance so yes my weight loss journey is for me to feel better mentally and physically.  As I’m sure most women (or men) can relate to this, I’m one of these people who gives it my all at the beginning – I’ve done slimming world, Gillian McKeith, Dukan, Herbalife, Cabbage soup,Slim fast, ADF,  you name it I’ve done it – I dedicate a few months too it then I remember just how much I love food,  cake, chocolate, fish and chips – the list is endless, my willpower sucks, I want to give massive shout out to people who do stick at it, I have one old school friend who has lost 10 stone and she totally has my upmost respect such willpower and determination!

But I’m saying it loud and clear I need to refocus make my body healthier and my mind positive, I have to do this for myself, Kev and my children, I almost feel selfish by not trying harder to lose weight as if its my fault my IIH is not improving because of it.  But it’s so hard when I can’t excercise like I did, I’ve tried HIIT, Kettlebells and classes during one of these times my  intercranial pressure raised so quickly I wasn’t sure how I was going to get home,  without droning and whinging too much (sorry) even walking at the moment is an effort with my new Diamox dosage so I am literally just taking each day as it comes.

So my weight loss journey continues – for a healthier and stronger me, I can dwell on the past Kirsty who was fit and healthier or I can focus on the future to a healthier Kirsty by busting IIHs arse and to everyone out there dieting, excercising, having surgery, those who are comfortable in their own skin or fighting an illness  – you are all amazing each and everyone of you,  may you too feel gorgeous and banish any insecurities, instill the positivity to our children also because we will stop worrying about our looks when society stops telling us that they’re all we’re worth. Let’s all of us focus on that first!

Have a lovely week

ASIBTAF 💖

Fight the fight 

So the inevitable happened, the thing that most sufferers of IIH, (Idiopathic Intercranial Hypertension) dread the absolute most – The Lumbar Puncture, I knew it was looming over me, high pressure hanging over my head like a huge dark grey cloud, I have tried to ignore it, pretend it wasn’t happening, carry on with life as normal, but I guess there is only so long you can pretend that your ok, I know I shouldn’t do it and I should of had my LP back late February but with all that was happening already in our life, it just wasn’t the right time.

Saturday evening my head hurt a bit, by the early hours it was unbearable, I tried paracetamol, ibuprofen and when I could take it no more – Codeine, none of which worked or touched the pain, this was by far the worst pain I had ever yet to encounter.

I made the phone call to my Mum at 7.45am,(she is my LP partner!!) by 9am I was in A and E,  I am always so dubious about having an LP, I know most of you will have read my last experience and it was not one that I ever want to repeat, it’s always at the back of my mind when I need one.

Due to the amount of pain I was in, I was given morphine and admitted, the first lot of meds didn’t help, thankfully though the second batch did, and I the pain subsided, I CANNOT fault the care and attention, I had during this admission, I knew that the LP would be coming at some point in the day, Kev and the children came in at 6ish, I had hoped that it may have been done by the time they were visiting.

Now anyone that knows us well, knows that you can rely on Ruby my youngest to brighten your day, she is a ray of sunshine, and can make you smile on your darkest of days – imagine Mum, Kev, Maisy and Ruby sat around my bed, I’m led in bed wishing I was at home when Rubes comes out with one of her I think potential best corkers. – 

Mummy what’s a condom?

Maisy looks like she is going to die of embarrassment, Kevs eyes are popping out of his head, Mums trying her best not to laugh, and I can’t believe my ears! 

Maisy says um excuse me but I was like way older than you when I found that out – I can’t actually believe you just asked that Ruby, can you believe her Mum? Urhhh god  she finishes by rolling her eyes .

I have to think quickly, and say Rubes I’m not sure this is the time or the place to discuss this in the detail that’s needed, but you use them to stop you having babies, she looks at me confused – where do you put it Mummy? Kev looks at me as if to say well you started to you need to finish it, again I say could we talk about this when we are all home together not in this ward, Ruby has that cheeky glint in her eye, looks at Kev and says Daddy have you used one or does Mummy? By now my poor Mum, is biting her lips off holding her laughter in, Maisy is looking at Ruby like she is going to strangle her, and Kev looks at me for back up,  Rubes I say, look they are used to help you if aren’t wanting to have babies yet, (there was no way I was adding STDs into the equation yet) and yes the Daddy generally uses them, again Maisy is looking at her sister with the look of please let the floor open and swallow me.

I feel I have to ask Ruby why she has asked me this question, to which 

I have Bruno Mars and Maisy to thank.. , well Mummy she says – Maisy heard a song on the radio on the way here,  Maisy said this song is so rude listen he is singing I’ve got a condom in ma hand can you believe that Dad? Kev adds well I did think it was wierd, now let me tell you the actual song lyrics 🙈

Hey, hey, hey

I got a condo in Manhattan

Baby girl, what’s hatnin’?

So slight misinterpretation by Maisy, but defiantly a moment that brought laughter and humour when it was needed by Ruby. 

My Lumbar Puncture  started at  9.10pm with my amazing Mum by my side, Kev and the girls in the day room, (they were not leaving until it was done) and it was done with kindness, continual consideration for my needs, lots of reassurance,  a Doctor that made me feel at ease even though he had worked at 13 hour shift, he was emphatic and carried out what he needed to do profesionally, the pressure was high, and sadly it took until 10.20pm to remove 26mls of fluid generally I have around 10mls so this was my best yet!

I am relieved it’s done, no idea really when the next one will be needed, but hopefully it will run as smoothly as that one, I feel ok, no low pressure headache, but I do feel washed out, and if I’m totally honest struggling this week, I’m going through that whole why me, why have I got to go through this, I feel guilty writing it or even thinking it when there are people fighting for their lives, or enduring painful cancer treatment, it’s not often I let it get to me, but I can’t see any light at the end of the tunnel, I can’t think one day this will be gone, there is no miracle cure, part of me feels like it’s won,  then theres the part of me who has the most amazing supportive husband, parents, family and friends right behind me supporting me all the way, their love pushing me, their positive words echoing in my mind. 

Maybe I have need to feel like this to regain my strength to start up the fight again, – well that’s what I’m telling my self and as I look at all that I have, I know I am truly blessed and ever grateful.

To all who remain by my side – I adore you all.

To everyone who wishes me well, and takes time to contact me – I am so grateful, it means so much.

And finally –  IIH you can’t keep a good girl down …..

Loads of ❤ ASIBTAF xxx

Not all disabilities are visable…

Sorry I have been quiet… two words that don’t usually go together – Kirsty and Quiet lol, have had lots going on, trying to sort various things that life seems to be throwing at me.

Today I had to take my eldest daughter to an appointment near Southampton, having been there before, I hoped I would park nearby as I had done previously my head (Idiopathic Intercranial Hypertension)has been playing up yesterday and again today,  I won’t lie I’m shattered both physically and mentally.

Mum, Maisy and I get to the destination, pull up and park in the parking space which is on a road, with boxes provided so you know where to park, I put my blue badge in the window, get out of the car, walk a few steps and hear a voice shouting,

Is that a blue badge in the window?

All three of us turn around to see a man approximately in his 60s stood by the car,

I reply ‘yes it is’
He then looks at the three of us with disgust and says ‘ So which one of you exactly is the disabled one?’

Me like a startled schoolgirl – put my hand in the air and said ‘me’ he shakes his head at me with disbelief, in my head I act out the scenario of me screaming at him ‘sorry what is  your problem is it because I appear to have all my limbs or is it because I’m not in a wheelchair, do tell me why you feel the need to question and shout at us like we are committing a crime’ but of course I don’t I stand there with my hand in the air humiliated, red faced, at this point though this is where  my trusty side kick /lifetime protector steps in – Mum – she politely but firmly asks if he would like to see the badge and the photo, he just looks crossly at us and gestures to wave us on, she looks ready to explode.

Whilst this has been going on, another gentleman has witnessed all of this and kindly steps in, he shouts from across the road ‘excuse me sir, it’s a parking space anyone can park there, and it’s none of your business what is wrong with her, the  rude  man disappears and the kind gentleman shakes his head, apologising for the behaviour of the other man, ‘I can’t believe I just watched that, or that it happened!.  Mum thanked him for his kindness and we went on to the appointment.

The sad thing is this does happen, for me that was the second time, the first time was in a supermarket car park, an elderly lady was really angry with me, I was on my own, had just pulled into the space and she banged on the window shouting at me to let her look at the photo on the back of the badge, telling me I looked perfectly normal and to move as she needed to get to an appointment.

I may be nearly 40, I may look ok bar the eye bags, but not all disabilities are what you look like, how you act, or how you walk , and anyone who knows me well knows that I wouldn’t use that badge unless I really really had too, but to the person who shouted at me/us today, you will never how much you offend me, how your words echo in my head,  how you make me dread putting my badge on the dash board,  If you knew what I actually went through to have the badge, how embarrassed I felt at the assessment I had to attend, you might of thought before you shouted and disbelieved me, I hope you may think again before you shout at someone else!

This happens to so many people all over the country, and it shouldn’t,  our disabilities are all individual to us, and it’s so sad.

I feel let down by some of our society today , that my daughter who I teach to respect her elders, care for others had to witness that, but what I do know is she will grow up with the realisation that we are all different, disabilities come in all shapes and forms and she will hopefully  never judge.

It wasn’t the first time it happened, and I’m sure it won’t be the last – but let’s spread the word :-

Not all disabilities are visable ❤

Have a lovely week

ASIBTAF 🙏🏻

Tiredness and Mumming it! 

At the moment people ask :how are you doing? and I reply I’m good, actually I am absolutely shattered, I would make a good advert for the smokey eye look, without the actual make up, whilst having a cuddle with my eldest last night she looked at me and said do you know your eyes are black, not just at the bottom Mummy but all the way round and used her finger to go around my eye lol.

I literally dream of going to bed then waking at a reasonable hour even 6am looks better than 3.30am, I try to stay up later to maybe help this but have trouble keeping my eyes open, this is part and parcel of the IIH, most people with this condition will have trouble sleeping, or some may want to sleep all the time, I do feel shattered with it at times but generally don’t sleep in the day,  by 9.30pm I’m done, the Insomnia comes in cycles so I can have some really good weeks of sleep, then I can have some really pants nights sleep, I am a woman that really needs her sleep or I turn into one of those emotional women literally teetering on edge, looking like something from the walking dead, and either growling or wailing.. and on this healthy eating plan would kill for chocolate!!!

Dr Edward Suarez, associate professor in Duke’s department of psychiatry and behavioural sciences said following a lack of sleep study on both men and women

“The study suggests that poor sleep – measured by the total amount of sleep, the degree of awakening during the night, and most importantly, how long it takes to get to sleep – may have more serious health consequences for women than for men.
“We found that for women, poor sleep is strongly associated with high levels of psychological distress, and greater feelings of hostility, depression and anger. “In contrast, these feelings were not associated with the same degree of sleep disruption in men.”

Well men are the lucky ones, because this morning is one of those mornings where you scroll through social media and cry like a baby at the various tear jerking videos, or you read another blog, full of kindness and meaning, for me I read a post by Part- Time Working Mummy that was done yesterday, about being a mother in varying ways, usually I have a good chuckle at her posts, today I cried.

I think the post she has written relates to us all in someway, because we have all been one of those Mummy’s.

https://www.facebook.com/PartTimeWorkingMummy/

These past two weeks with  lack of sleep makes me analyse things more, mainly my motherhood skills, or otherwise known as the ‘Mum Guilt’ being a mum to a teenager (she will be 13 this year) is a journey in itself, but knowing that your illness effects both of your girls that guilt sets in even more, I am that Mum that try’s to get through each day hiding how rough I actually feel from them, painting on a smile so they will both go off happy each day whilst actually I want to hug the toilet from the nausea I get some mornings, or when they have a tantrum or argue with my husband or  I, I don’t completely lose my shit because I’m so tired lol, I am the Mum who wants my eldest to enjoy her School life, and not be worrying about me,  where I am and if I’m feeling ok. 

I am the Mum that plans a lovely day out, a train trip to Bath with both of my girls,plus one of their friends, then gets half way into the train journey I have a massive IIH headache, how I made it around that day I will never know, the worst point for me was the shop Lush, the girls had lived for this  moment, I was trying to live through the bloody moment, all the smells just made me want to be violently sick, never have I been so glad to get back on a train, but wondering why I can’t even have a day out without my IIH interfering. I know the girls don’t miss out but you want and hope to be on top form having fun don’t you? 

I am the Mum that lies in her hospital bed, wishing to get home as soon as I can as I know my girls will be crying for me at home, even with constant reassurance from family and friends they panic I won’t come home, this is heartbreaking in itself.

But I am the Mum who does her best, the best I can do at the moment, and that is all of us doing the best we can, we are all amazing men and women with amazing children, you know you have done good when they are smiling and happy each day, yes the day may throw in some grotty bits but we handle it the best we can.

As I usually say  kindness unites us all, I have had so many messages about this blog, I can’t thank you enough for the kindness, most saying I’m so brave, you know what though we are all brave we are all warriors of some sort, illness, family, motherhood, fatherhood,business,  life and more, I had never even heard of this condition or anyone with it before my diagnosis, so all I want is to bring some awareness to it, and to help other sufferers who may need some reassurance.

We can and will beat this, and with the kindness and love I have around, how hard can that be.

Have a happy healthy week

ASIBTAF ❤

Wife and Mum first, IIH warrior second. 

You know those weeks where you doubt yourself in everything, it’s been one of those, I have been told many times by various people you are never given more than you can handle , but who actually knows what we can all handle? How do ‘they’ know our limits? 

Sometimes living with IIH pales into insignificance when you have a role as a mother and a wife, you can’t just think about yourself (selfishly) , you have to be that supportive figure to them, offering reassurance, kindness, love and nurturing them best you can.

It’s been a hard week for varying reasons, and my illness hasn’t actually been one of them, so this is postitive in itself. I am still continuing with my acupuncture sessions which are going really well, this week we progressed to 15 needles so I somewhat resembled hell raiser lol, but I think it is having a positive effect as the pain at the moment is not so intense, which for me is amazing.  Also this week I have had an appointment at the Doctors, for a blood pressure check, as there was some concern about how high it was, and whether it needed treating, (my blood pressure will be high if my brain pressure is high) BUT even with the stresses of the week, which I will go into later, my blood pressure gave a really good reading which we are hoping is due to the weightloss and healthy eating regime! So more positivity right there.

Now as with so many of us, money is the cause of such stress and worry, money is the root of all evil so they say!  As I’m not able to work at the moment I feel there is extra stress on my husband Kev, working hard six days a week to provide for us all, which he does barely grumbling, Kev is a builder, he has his own business, working closely with another builder, together and individually they have produced some amazing houses from scratch  with varying price ranges, houses I could only dream of living in…. so unfair lol, but after Christmas they started on a new job,  where they had been recommended to the client.

I can’t say too much for the fear of slander etc etc, but after doing extensive work, the client has taken it upon himself not to pay,  not pay – do people actually have any idea of the recupussions when they decide I’m not going to pay – the stress it causes, the anger, then the self doubt, all of this I have witnessed from Kev, hearing him toss and turn in bed worrying about the money we havent had, then turning the light on to discuss it again because he just can’t understand it, he has done this job since leaving School (he is now 45) and never has he not been paid, never ever, he and the other Builder are in disbelief, as the client has now changed locks etc so they can’t get on site, so it has been a week of reassuring him that I think he does a brilliant job, and that this client is a giant knobhead, that no one should make people doubt themselves, and we might have to put this one in the fuck bucket and move on.

And move on we will, together we have got through so much, yes money makes life easier, but we are all alive and still together, we have now learnt he has done this to several other builders, let them do the work then kick them off, the sad thing is I doubt he is led in his bed worrying about how to pay his tax bill or his household bills, he is probably led there smug that he has pulled off yet another scam, I am a massive massive believer in Karma, and I say what goes around comes around.  Kev has moved onto a new job, money will catch up, and I said to him, you have a home, two daughters who adore you, a loving family,food in the cupboard, thankfully bills are paid and you have good health, don’t give men like that a second thought. 

Whilst all this has been going on, this week we have also had the roller coaster ride of parenting thrown into the mix, definitely a journey that we as parents all have to go through, a journey of highs and of lows, happiness, tears, anger -actually every emotion going is probably the best way to explain Motherhood.

Kev and I go through this journey together to bring our two gorgeous girls up but along the way, we have the best family and amazing friends by our sides offering their help and love, who could ask for more? Oh and so I’m told hahaha wine and gin help! 

I would not change it for the world 
I hope you have all had a happy and heathy week.
For me this week I have definately used my mantra -A smile is better than a frown 

Lots of love ❤

ASIBTAF 

Brain problems

Monday morning, and off to the place I seem to reside the most…Hospital. My Neurology appointment with my Neurologist Simon Shields, who has been through this journey with me, he diagnosed me with IIH back in July 2015.

Without giving off an air of negativity, when I have appointments with him it’s as if he expects me to tell him what we are going to do next, rather than vice versa, each appointment I explain how the last 3 months have been, generally they  are pretty much the same!!, pressure pain, lumbar puncture, eyes tests, repeat lol, we discuss the dosage of Acetazolamide (also known as Diamox) that I am taking, this drug is a carbonic anhydrase inhibitor used for glaucoma, some types of epilepsy and fluid retention. It reduces CSF production in most patients. However the side effects of taking Diamox , include  tingling of the fingers and toes are the most common, on  high doses I find that my side effects are horrendous I literally cannot function, I feel like I am walking everywhere in thick mud, I have palpitations, sheer exhaustion just walking around the corner, and extreme tiredness like you can’t imagine, this seems to be the only drug on offer for sufferers of IIH, I read that we all pretty much have the same side effects which day to day can be debilitating. I take a dose now that means I can manage each day and most importantly manage my family life, a higher dose may help me more,  but I have no quality of life whilst doing this, so it’s a catch 22, either spend each day in bed comatose or be on less and suffer the threat of Lumbar Punctures.

My progress on Diamox is  monitored closely and I  have regular blood tests to monitor the levels of electrolytes (eg sodium and potassium) and the levels of blood cells in your blood.

Back to the appointment, we discussed the eye appointment if last week, he said he thought the visual field test was only a small negative change, and he would discuss with the ophthalmologist what she thought,(case of déjà vu as she said I should discuss with him!!)

He also brought up maybe we should go down the shunt route, now I can never understand why he does this, it’s as if he doesn’t remember I have already been to an appointment at Southmead, an appointment that I went to with my husband, both of us  full of optimism, I was scared but happy that this may be the answer to my problems obviously no one is excited at the prospect of brain surgery but nonetheless if it helped I would do it.

That day marked probably my lowest point of having this condition, both of our hopes, positivity and almost excitement that I might get better, shot down in a millisecond.  After waiting what seemed like an eternity for the Surgeon to appear and take me in to discuss surgery in the future, we sat there almost in shock as he explained there was no way they would operate on my brain to put a shunt in, as my ventricles are to narrow for a shunt, I don’t think either of us could believe what we were hearing, he explained that they would only do this if my sight was literally going, as it would be to save my sight, but they couldn’t do it now as it would mean I would be really unwell with infection where the shunt would rub, he was really dismissive and almost shocked we had been sent to him, I can remember bluntly saying ‘so what I’m stuck like this forever’ to which he replied ‘I can’t answer that’.
I came out of that room and my heart broke, for any of you that have visited Southmead you will know its a very large space, a space where my crying echoed around the building, Kev hugging me tightly his face etched with disappointment. I cried all the way home, being selfish in someways I guess, thinking that I was stuck with this crappy condition, why did I get stuck with it, what did I do so wrong to end up with it, I remember being even more selfish thinking for a split second that I’d rather not carry on like this.. a thought I’d never repeat, the bollocking I got from Kev for saying that even though it was just words will stay with me. You have to think of the positives I have two amazing children, I have an amazing family, friends who would do anything for me, and actually a caring happy community to live in, as mentioned before all of these contribute to making my life a much happier one.

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So after reminding him of this, he still said maybe we need a second opinion, so I said in 6 months I would agree to this, but first let me lose some weight, (by the way I have lost more and now 8lbs down) then I would consider it,  he agreed that would be a sensible idea, we scheduled another Lumbar Puncture for the end of Feb/beginning of March which he will do, I actually feel ok when he does them, so that didn’t fill me with too much dread!!

So though it feels like we never move any further, it’s all steps in the right direction, I am really lucky that my neurologist is usally a phone call away, and I can if I’m really unwell get an appointment generally quite quickly I know other sufferers have to wait for months, a LP will help, and the only person who can help with other things is me, I’m the one who can help myself, by taking my meds, follow a healthy eating programme and remember that though I hate the pain, I’m not dying, I am actually blessed with my life!

Have a lovely day wherever you are
Lots of love ASIBTAF 😄

Eye Eye..

It’s been a funny old week, I’ve been to Darlington and back home to Somerset within 24 hours, I have learnt that it’s very very cold in that part of the world, however the taxi driver informed me “It’s not even proper cold yet love” as lovely as the fleeting visit was I must remember to be properly kitted out should I visit again!

My beautiful big girl has been going through some tough times at school, school have been amazing but it’s been an experience I never want to repeat for her or me, and am hoping it all passes soon.  I feel like I am definitely winging it on the Motherhood front.

My beautiful youngest has developed some god awful virus that seems to have affected her breathing, therefore making her lung syndrome that she has make itself known, presenting her with a wheeze, so I seem to follow her round with the inhaler at the ready!

Yesterday I had to attend an IIH related hospital appointment. 

Ophthalmology – I attend these appointments every other month, ophthalmologists can play a vital role in the initial management of IIH. They are often the first to see IIH patients and may then work in concert with a neurologist to monitor treatment, regular visual field tests and comprehensive dilated eye exams are recommended to monitor any changes in vision. I feel thank ful that I am closely monitored and have a lovely Ophthalmologist Dr Robertson.

A number of vision tests may also be performed, including a comprehensive dilated eye exam to look for signs of papilledema. I have papilledema more so in my right eye, but as time has gone on with this condition I now have it in the left.  In intracranial hypertension, papilledema most commonly occurs bilaterally, causing a swelling of the optic disc, it may progress to enlargement of the blind spot, blurring of vision, visual obscurations (inability to see in a particular part of the visual field for a period of time) and ultimately total loss of vision may occur. ( My worst fear)
The  doctor uses an ophthalmoscope (a light with magnifying lenses that is used to look into the back of the eye) to diagnose papilledema. I can’t tell how much I hate this part and to all those with me on this, I feel your pain when we have to have the drops that enlarge our pupils so that they have the ability to see behind through the eye, they sting so much! And if you forget your sunglasses for when you enter outside its pain like no other lol!


 Visual field testing is done to evaluate your peripheral vision. This testing measures the area of space you can see at a given instant without moving your head or eyes, and on this occasion I have failed my test,  this will need to be discussed with my Neurologist, I actually have an appointment with him on the 30th, so no doubt it will be a topic of conversation, leading to yet another delightful Lumbar Puncture no doubt, I say that in the wrong tone as I know how important the Lumbar Punctures are in helping and keeping my sight.

So it wasn’t my best eye appointment to date but I personally think I failed the visual fields as the previous Lumbar Puncture was a success, so hopefully if I have another then it will mean I have a better visual field result, and no real cause for concern. Fingers crossed

Hope you all have had a lovely week.

Love ASIBTAF ❤️

Weigh day happiness


As some of you may already know, I have been under quite a lot of pressure from many medical professionals to lose weight, as there are various theories that weight loss in patients like my self with idiopathic intracranial hypertension (IIH) reduces intracranial pressure (ICP), eases headaches, and improves papilledema.

Naturally I would want to improve all of these symptoms, I wouldn’t wish the pain I get in my head on my worst enemy, so of course I want to lose weight.

Before I was diagnosed with IIH, I loved nothing better than going  to the gym, working out, lifting weights, sessions with my PT, and cycling.  I would cycle miles for charity, my  long suffering friend Lucy wholeheartedly would support whatever venture I presented her with, many a route we would take and get lost but always find our way home!

For me excercise was the key to my weightloss, I followed a healthy eating plan and did some form of exercise 5 times a week, it helped me mentally and physically. I loved it, previously I had done every diet you can think of , Slimming world, Atkins diet, Dukan diet, Slim fast, but I had finally found something that worked for me, I was happy.

Being diagnosed changed this for me, I found that any strenuous excercise just exacerbated my symptoms, my head would pound,  I would become dizzy and weak. Not an ideal situation to be in, and thus becoming a viscous circle of eating, maybe even at points comfort eating then not burning off what I was eating as I previously had been.

I love food, I love cooking, but best of all I love my Mums cooking, she is known for making amazing cake, cake that I felt made me feel better when I ate it!! When you feel really ill, you don’t think about diets or healthy eating, you think about how dreadful you feel, take your meds to try and get through each day, not about when you can next get to the gym.

So my weight went up, along with that came the various medical professionals advice on losing weight, so off I would go and try to lose weight with no avail, I tried shake diets in desperation of shifting weight before the next Neurology weigh in/appointment, which worked but even losing nearly two stone I had no recognition for my efforts. Though it was a healthy shake diet where I could snack and eat a main meal, it was decided that it was too high in certain ingredients therefore not helping my head pain and I was back to square one.

So as mentioned in my previous blog I unwittingly went to a Dietitian who has put me on a healthy eating plan from the British heart foundation , before this visit I was very much like :-

“Seize the moment. Remember all those women on the Titanic who waved off the dessert cart.” – Erma Bombeck

Now I am literally sobbing at the cake counter, waving at chocolate like it’s my long lost friend, dreaming that the peppermint tea I’m drinking for the fourteenth time that day is actually a full fat Latte.
However I am eating well every day, healthier, eating plenty, initially feeling guilty at how I could eat all I was eating and seriously lose weight, but two weeks in, today was weigh day AND

I’m 6.5 pounds down…

For someone who really struggles to lose weight I was so pleased, I’m hoping this continues, I KNOW my motivation for this won’t change, I want to see if it helps to alleviate my symptoms.  In my research there are mixed stories, some people have lost weight and slightly better, some are significantly better and others have lost half their body weight whom are still the same – really poorly.  In idiopathic cases, weight loss can bring about a remission and therefore should be encouraged. But in other idiopathic cases, weight reduction does not make a difference. If I don’t try I will never know!

I am dedicated enough to do this, and #thisgirlcan!  I have amazing support from family and friends,

Excercise wise – studies show laughter actually is a form of exercise. Taking a moment to relax and have a laugh about those inevitable slip-ups helps the body release endorphins, or natural opiates. Studies show they both play a role in management of pain and induce a feeling of euphoric calm. So I am going to keep laughing adding in some swimming too maybe!!

Off to find a lovely apple…..

Have a lovely evening

Lots of love ASIBTAF ❤