Turning 40

As I enter my last ever full week of being in my thirties, I feel a mixture of emotions, I think there is some disbelief that I have got to this point already, 40 – those two digits that you either dread or embrace, but first and foremost for me it’s the thought that I will be officially middle aged!

If you had told me when I turned 30, that by the time I turned 40, I would no longer be working in the job, that I had started when I was 16, no longer living in the place I had spent nearly all my life, I would of seriously laughed in your face, I had my whole life mapped out or so I thought!

As I say I had worked with Children from the age of 16, and continued doing this until 2014, working with small children was so rewarding, I/we worked with some remarkable children with whom I hold so many happy memories, but this is another contributing factor that adds to me feeling old – seeing most of them passing their driving tests, getting married or even having their own bundles of joy!

I’m a great believer that every thing happens for a reason, and though I didn’t really want to leave Horsington, without a doubt it was meant to be, relocating was hard and I found it really hard to adjust, even though I hadn’t moved far, it felt like a million miles, I thought I would never settle here, I would not make any friends, and definitely not fit in – again this was far from the truth, I won’t lie it took a while but I do finally feel settled, and so lucky to have met some of the most loveliest people, people whom I have met will be part of my and my families lives forever, people who I know I can call and they would be here in an instant. If we hadn’t of moved, how would we all of coped with my IIH, my then job, my Mums constant support – she would not of been able to do this as we worked together, this would of meant Kev would of had to supported me more and not able to work therefore we would not of had any income what a downward spiral that could of been. The pathway to 40 has been that of a winding one, I’ve learnt so much about myself on the way, good and bad times, I’ve learnt what it is to properly grieve, to battle depression, to support my Dad when recovering from a horrendous Stroke, to relocating to a new location , to manage a chronic illness, raise two beautiful children, be a good friend and try to sustain a good marriage.

I’ve learnt to face so many fears, when people ask me, how do I feel about reaching 40, I answer truthfully – relieved, yes I am relieved to have got here, during my hospital stay when I was diagnosed with IIH, a Doctor came to me one morning and sat beside me, he said to me, I’m afraid we have found something untoward on your brain scan – a blood clot, I couldn’t really take it in, so I asked him – I will be ok though won’t I, to which he replied – we hope so, it was those words – we hope so – that crushed me, took my breath away, as dramatic as it sounds my life literally flashed before my eyes, all I could think of were my girls not having their Mummy, Kev, my parents, this was the moment I thought my life could actually end, I was petrified – thankfully I immediately had the relevant meds to stop anything occurring in my brain and it came to light that the scan was inconclusive, but from that day I promised myself I would never take my life for granted, some of those days in that hospital were my darkest, the pain in my head was like nothing I had ever experienced, I remember trying to stay awake as I thought if I go to sleep in this much pain I would never wake up, my poor Mum, me sobbing to her I was convinced that it was going to kill me, those days without a doubt changed me, they made me a better person, I’d like to think it made me more compassionate to others, made me appreciate people and life more, it has definitely made me stronger, I try not to ignore my emotions but realise that feelings aren’t facts, it has made the small pathetic things pale into insignificance, enjoy every day, sure not every day will be an amazing one but we need to make of it the best we can.

One thing I wanted to crack before I was 40 was some weight loss and I’m happy to say I’m on the right path, nearly 3 stone gone – it hasn’t yet but I’m hoping it brings some relief to the IIH – maybe after my next LP in a few weeks time, there may be a positive change.

I may not have achieved everything that I wanted to by the time I was 40 but I have an amazing family, beautiful friends, a roof over my head and I have my life, now the saying goes Life begins at 40…. and I literally cannot wait for the upcoming weeks ahead there is so much in store and with all of my most favourite people.

On that note I will leave you with my new mantra as said by Lucille Ball

“I’d rather regret the things I’ve done than regret the things I haven’t done.”

Big ❤️ASIBTAF

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They grow so fast.

As a Mother, Wife and sufferer of a Chronic illness, there are times when I feel completely overwhelmed, a million things running through my head, the majority of them questioning my parenting skills, I never realised or should I say thought,  how much the girls growing up would affect me.

It’s very bittersweet them growing up isn’t it? I can remember those night feeds willing them to sleep through the night, yearning for a whole 8 hours sleep, loving those times when you would pop them for a daytime nap so you could catch up on jobs, or sit with a cuppa that didn’t go cold, still now there are days when I’d love nothing more than for them to have a nap when they have a day of bickering even though they are 13 and 10 years of age,or remembering that feeling of euphoria as we became no longer bound to the eat, sleep and pooh schedule that as babies we were tied too.

So this week Maisy became a teenager, 13 whole years of age, that was hard enough to cope with, then I received Ruby’s application to secondary school – and out of the blue, I suddenly missed when my babies clung to me, the all day eating sessions, the middle of the night cuddles, the early morning smiles, first words,  the cute podgy toddlers learning all about life, those days however scarily don’t seem like that long ago, it’s like we have fast forwarded to here and I am presented with two independent, strong minded and beautiful girls.

The week presented a mixture of emotions, how on earth can Ruby be going to secondary school next year , she still seems so young to me, I know I’m totally overprotective of her, I don’t even let her walk to School on her own yet despite her protests, I think this is because of all she has encountered in her little life I wrap her in cotton wool, but also it makes me feel I’m still doing my Mum duty of the School run, holding her hand when she allows whilst I still can. I am not ready to be made redundant of my Mummy duties yet…

Maisy entering her teenage years – how on earth did that happen? I looked at her opening her presents and I couldn’t of felt any prouder, yes she has probably had the worst year of her little life, and yes she may struggle from time to time, but when I think how far she has come, I know that she will hopefully continue to flourish, but it doesn’t stop you worrying does it, at the beginning I think we are so naive about just how much we will worry about our bundles of joy, and that worry never eases – so I’m told by my own Mother! 

One evening this week, following on from the various excitement, I mentioned to Kev that I wasn’t feeling myself, In my own words I said I felt a bit wobbly (mentally) as I totes have wobbly bits on board lol.  

He asked why – and I said in three months I’m 40, our children are growing up way to fast, I’m stuck with a bad head, and muscles that are giving me hassle, and I think we should have a baby…. never have I seen him   a) look at me like I’ve gone totally mental b) move away from me as fast as a rocket.

Those of me who know me well – know that a Baby would never ever happen due to a lady op a few years back – hence the look of confusion on my dear husbands face, he responded with the following 

A baby Kirsty a baby if you want a baby it will be with another man, not me that’s for sure – god I was laughing, he was hilarious,  He carried on with im nearly 50, I can’t cope with the three of you let alone a baby – anyway we can’t have anymore children.  I obviously was joking and to be honest his reaction was highly amusing, totally worth the passing comment.

So how do we deal with the transition of our children becoming gradually more and more independent, part of me wants them to stay little forever, to keep their voices small and their worries simple.

However I think we should just continue to enjoy them as they are now.. and be glad for who they have become because we have transformed them from that pink or blue squealing bundle of joy to the person they are today.. everything they are comes from you… how proud are you?

And yes I’m  knocking on 40, the quickest way to age is to be miserable, I’m wishing that I was younger but regretting the passing of time is a sure way of accelerating the aging process, the best way to age dynamically is to enjoy life, all that we’ve learned and gained along the path to midlife. 

It’s simply a new phase of life, I need to embrace it and go with it 💕

Have a happy and healthy weekend 

ASIBTAF xxx

I get back up..

I’ve mentioned several times about families, friends and the amazing support network I have, there are times when we probably take for granted exactly what and who we have, life throws many an obstacle at us and we all have varying coping mechanisms, it’s part of life to experience ups and downs, and we want to be with people who understand us and can be depended on when we go through a tough time, we need people who are honest with their answers when listening to us, there has been research that has shown, that having a support system has many positive benefits, such as higher levels of well-being, better coping skills and a longer and healthier life. Studies have also shown that social support can reduce depression and anxiety. Some people do best having large support group, while others need just a small support system. Giving and receiving support from others is a basic human need.

There may be people in life who say they don’t need anyone and that’s their prerogative, I am however needy I need a support network, I need those friendly vibes, I need people to bring me back down to earth  now and again, I need people to tell me it will be ok, I make no excuses for myself – I can be a right miserable mare who can only see the worst case scenario at times and that’s why I need my support crew to put me back on the straight and narrow.

A week ago I received the phonecall from my Neurologist to say that the surgeons had said no to a shunt in my back, he said he himself couldn’t understand why they had said no but he couldn’t go over them as they were my second opinion, so the shunt would of done the job of a lumbar puncture  that I have every other month in reducing the pressure as and when needed, but apparently the back ones cause a lot of problems and are a last resort, only used if your sight is failing – I’m blessed that though my right eye has some permanent damage my sight remains ok, which is a positive and my eyes are checked every 2/3 months but it’s still hard to hear, after he had said that,  any words that he was saying to me were falling on deaf ears, I was crying to him asking what exactly was going to happen to me now – I would be stuck like this forever – had he any idea of the pain I was in at times etc etc (sorry moaning again). Poor man just didn’t know what to say except – Kirsty I’ve booked you in for a Lumbar Puncture with me next week – talk about adding insult to injury lol.

Now for me I knew I had been holding onto the fact a Lumbar Shunt might be the answer to my prayers – so that phonecall destroyed me – without sounding like a drama queen – I hit rock bottom right there and then, this makes me feel guilty reading/writing it because I know there are some really poorly people out there fighting horrendous illnesses and I feel selfish, but I did – and this is where my support network came into play Kev shot out of the shower to hug me tightly – Mum was round like a rocket to console me – she knew with her mothers intuition I needed her,but there are times when your own selfishness takes over and nothing anyone says or does can help how you are feeling inside, just that everpending feeling of doom hanging over your head like a black cloud.

I ranted to my friends, I posted on Instagram, the response was amazing (You are all best by the way) support from every which way, I wonder if people realise the impact a simple uplifting text has, or the kind act of giving a bunch of flowers and telling you that you are amazing really has, or the empathy received when you ring a close friend  and cry so much before you can actually speak to them – there they are listening and gently reassuring you because it’s all got to much.

I won’t lie I WAS and FELT until today hell on earth emotionally and physically, I was fed up because my LP was looming, which actually went well, and because I felt like there was no end to the IIH.
We don’t just need our support for illness we need to share our  support in our day to day living, I would like to think that I try to be there for who needs me!

When you have people looking out to you, your support – be it family, friendships, people via social media, some of whom you may have never met, you should feel blessed, I know I do, I’m grateful to literally everyone who likes a post, who reads my blog, who send me postitive vibes – you make me stronger, remember a strong person is not the one who doesn’t cry, a strong person is the one who cries and sheds tears for a moment, then gets up and fights again.

Massive thank you as always!

❤️ ASIBTAF xxx

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 🙏🏻

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 ❤️

Pain in the back – Lumbar Puncture day!

Now as you all know I’m trying to go down the positivity route, but after my experience yesterday it’s a struggle, however today is a brand new day, I have a wonderful family and friends who love and care for me, this is what keeps me going through this IIH shitty experience.

So yesterday I finally gave in to the fact that I needed yet another Lumbar Puncture, the house was clean and tidy, the girls were ready for school and I had  mentally  prepared them for what was going to happen, I had done this from Saturday, gently explaining that I was not feeling great, that the procedure would help alleviate my symptoms, and that we would all be better for it. My husband had even done the grocery shop in preparation (a) because I physically felt to ill to do so (b) because he wanted to head to screw-fix!! So for the first time in a long time he did the shopping, spending considerably less than I ever have!

So in my mind I could leave them all fed, watered and relatively happy, my parents picked me up at 7.30am, I said my goodbyes which is always so hard for the the three of them, my husband especially (he literally followed me round the house as I tried to get ready looking forlorn and helpess that he has to go to work)and for the girls however hard they try to I know they just don’t understand what is really happening with their Mummy.  

I arrived at A and E looking and feeling like death, went through the usual pleasantries of triage then a bed. See below my lovely bed, there is actually bare sponge exposed there so god knows what I’m lying on! But at this point though my Mum is fuming I’m actually asleep!

I had a really lovely A and E Doctor, she was kind, considerate and caring, rubbing my hand each time, proudly had some codeine brought in for me, she said in her lovely accent (I wasn’t sure where she was from) “Darrrrrling have you had your pudding”,bearing in mind I’m half asleep, not quite with it, I looked totally vacant at her so she repeated it again rolling the r  in Darling, no sorry, still a vacant look from me, and a mystified Mum in the background! “Darrrrrling have you had your tablets I am saying” she replies “ah yes I say yes thank you”she rubbed my hand and off she went, I never knew tablets were called pudding lol.

This article is from the Daily Mail:-

And Dr Taj Hassan, president of the Royal College of Emergency Medicine, warned: ‘Meltdown is an emotive term but what is undoubtedly true is that emergency departments and hospital staff are absolutely working at their very limit – and that’s not sustainable.

‘NHS staff are incredibly dedicated, but they are human beings and they can’t carry on working at 110 per cent with hospitals full, emergency departments overcrowded, and ambulances queuing up for prolonged periods 

Yesterday you could tell that the above is true, apart from the the sweet A and E Doctor, there was literally no more kindness or compassion, now I know what you could be thinking, does this woman ever just not moan about her condition or her appointments, the truth is I promise you I try to go with open mind, positivity and most of all I try to be grateful, grateful that people are trying to help me, as I’m sure I could be portrayed as the woman who is always moaning or ungrateful, however I can assure you I am not.

Next I’m told by a male nurse I’m to have an ECG, again I was asleep so woke up to him pulling up my top and slapping the pads on, and me being thankful I had a decent bra on, not one of my white now dark grey holey ones. I was then told I would be moved to Ambulatory care unit where I would have my Lumbar Puncture, never in my various A and E visits had I been put here, so this was a new experience, plus I have never had a Lumbar Puncture within hours of arrival, so brilliant Mum and I thought..

Now I won’t lie I absolutely hate Lumbar Punctures, to be fair who would like them lol, but I know they reduce my symptoms greatly so know it’s what is needed.  

Quick explanation on a LP, from the NHS website.

The procedure:-

In most cases, you’ll be asked to lie on one side and to curl up, with your knees up and your chin in, so your spine is curved. This helps to separate the bones in your spine, allowing the needle to be inserted more easily.

Sitting while bending forwards is an alternative position, although it’s not always suitable.
An antiseptic solution will be applied to the skin at the base of the spine. A local anaesthetic is then used to numb the area of the lumbar puncture site. If a child needs to have a lumbar puncture, medication may be given beforehand to help them relax and keep calm.
The doctor (or sometimes a specially trained nurse) will insert a special spinal needle between the bones at the base of the spine and into the spinal canal, penetrating the membrane containing the cerebrospinal fluid (CSF).
Occasionally, you may feel a sudden, sharp sensation in one of your legs if the needle tip touches one of the nerves within the spinal canal. This is only a brief pain and it will indicate to the doctor a need to adjust the needle’s direction.
Once the needle is in the correct position, the CSF will begin to drip out. Usually, the CSF pressure is then measured by attaching a length of plastic piping to the needle to see how far up the tube the fluid rises. This is called manometry. You may be asked to cough or strain while this is being done and the doctor may press gently on one side of your neck, to check that the CSF can pass freely between your head and spinal canal. 

Following manometry, samples are usually collected in sterile containers. Only a small amount is normally needed for testing, but more may be removed if the doctor needs to reduce the pressure within the head.
Once the procedure is complete, the needle will be removed and a small plaster is applied. The whole procedure usually takes about 30-45 minutes, in most cases.

I have had a few of these now, some amazing experiences where I am okish after and sadly two that left me so ill was bedridden for two weeks, literally only able to crawl to the toilet, this is because of something called a low pressure headache, now this in itself it often worse than the IIH, so my Neurologist kindly made a plan, that I should if possible lie flat for as long as I can after, I usually stay in overnight then home the next day or so.

This is what works for me and my body, we all learnt this is how I respond better to a Lumbar, I have always explained my fear of them, explained what happened to me after them and the procedure I’m meant to follow. I have always had a kind gentle person carrying out the procedure, never the same person, but nevertheless they have always listened, and been empathetic.

So I’m in the cubicle waiting for the Doctor, who is almost like a whirlwind, she comes in, neither of us catch her name she then does a physical examination checking my mental alertness and my coordination and balance, she checks for numbness or weakness in myface, arms, and legs; confusion; and trouble speaking and seeing clearly, she does it so fast I can barely think what she wants me to do next, it’s like I’m on fast forward doing dance moves.

The trolley comes in with the LP kit on, so  I broach the fact I’m a bit nervous, and I get a short sharp, “well don’t,I do do this all the time you know, I am competent”

So I reply with “oh gosh I was not implying you weren’t sorry I just wanted you to know I’m a bit nervous”. Mum broaches the the aftercare bit we are both looking nervous, “is Kirsty able to lie flat for a few hours as per norm”and explains previous situations, and the fact that’s the protocol from the Neurologist.  Well you would of thought we had asked her for her own blood, “uh no, that won’t be happening she will be fine to be up and about immediately after, you can wait in the waiting room in a chair but no there is no need for her to be led flat, go home and lie down, I do these all the time everyday and people do not need to lie flat”,almost rolling her eyes at me,  so now I’m crying the wimp that I am, because I’m scared and now I know when its over I’m up and out the bed and in a few hours will be in excruciating pain, she hands me a tissue and says” let’s begin shall we”

The procedure begins, my knees are up to my chest, and I’m practically kissing my own boobs, trying to man up not cry, she only hits a nerve a few times which I am thankful for as it’s so painful, conversation starts about the condition between the Doctor and a student Doctor about the IIH, and how this LP will reduce CSF etc, then the corker hits mid LP, me being brave, head in bosom…

“So Kirsty are you going to try lose weight? What would work well for you do you think?”

Mum looks horrified, no reassuring words  from the Dr, the usual are you ok, your doing well, not long now etc just – so fatty you need to shift a few pounds (my interpretation)

Well what works well for me well let me see – her buggering off and me never seeing her again would work quite well, instead I feel crimson with embarrassment, eyes stinging holding in the tears and ignore it.  Cue – Mum, who gently explains before this illness I was a gym bunny, I had a personal trainer, I cycled miles for charities one being that b hospital, I was fit and healthy, and sadly at the moment excercise was not a choice, as it made me so ill… Silence from everyone.

Sadly though the LP was done, she couldn’t measure it properly, she told us that she didn’t know what she had taken off, and whether the reading was true because something had blocked it probably a bit of blood, so it was done but no idea of true readings -fanbloodytastic thanks love! And true to her word straight after, the bed head was up I was upright and she was gone, Mum and I sat there shell shocked, me scared of pain due to approach, back throbbing and Mum I think because yet again, she was disappointed in how we’d been treated.

And off we went, Dad collected us and I went to stay with my parents, obviously the children and my husband were overjoyed I was back there,it was lovely to see them so relieved that we hadn’t been parted for long, lots of lovely cuddles and kisses.  Around 6pm the pain kicked in, and I’m managing it with pain killers and lots of fluids, I’m hoping it will subside soon, as I lay here the following day reflecting on it all, I feel sad I was not listened to, and that I know she may have been stressed, under pressure or being that much younger than me she hasn’t had as many life experiences, maybe she was having a bad day,who knows, but do you know what it makes me more determined to smile or show kindness to people who need it, no matter what age, race or gender, if they look sad, upset, worried – smile more, give a kind word, ask if they are ok.

It’s costs nothing to do so.

Loads of ❤ A smile is definitely bloody better than a frown xxxxx

 Foggy Saturday 

This is the view from my window today, no glorious sunshine, no chilly frost, just this foggy dismal day, it’s a day that makes you want to snuggle up on the sofa  with a blanket, watch a film and eat rubbish, the skies are grey and dismal not dissimilar to how my eyebags are looking at the moment.

Following on from the Acupuncture I had on Thursday, I have been absolutely wiped out, I’m not sure if it’s coincidence that I may possibly need a Lumbar Puncture or it’s as Vicky the Physiotherapist said I could feel quite tired after, tired is an understatement, I feel like I could sleep forever! I think I need to investigate whether I should feel this tired for this long, but as I say it could be a culmination of things, either way I have my STRONG top on today and that is the focus word of the day!


https://www.thefmlystore.com/collections/women/products/black-oversized-strong-tee
I hate days like this when it’s dark and murky, it literally makes my crave crappy foods to eat why is this? I blame the weather but I think I feel like this daily lol, however in my quest to regain my life and possibly reduce IIH symptoms, I am 5 days into my new healthy eating plan and apart from today of wanting to eat anything in the cuboards, it’s gone well.

I’m finding it hard to comprehend that it’s ok to eat 7 yes 7 starchy foods in my day, though the portions are small I feel paranoid at eating so much! Thinking that surely I am doing it wrong throughout the day, you may remember a few blogs back, I ended up at a weight management clinic, this is the diet they have asked me to follow.

My day consists of the usual 5 mandatory portions of fruit and vegetables, this I have always done with ease, then to the 7 starchy portions so this is bread, rice, cereals, potatoes, cous cous, bagels, crumpets etc, well at 11am when I’m tucking into my low fat bagel I have such guilt thinking how on earth will this work when I have more starchy things to eat? We then have to fit in 3 portions of milk and dairy, my daily soya milk takes up one of these, then I usually have a yogurt or a matchbox size piece of cheese!! 2 portions of any sources of protein  meat quorn etc, 2 portions of spreading fats, oils, dressings, sauces and finally you can have a 100kcal snack which may be high fat/high sugar foods or even alcohol.

The 100kcal snack today is not going to cover the cakes, biscuits, or king size dairy milk I want to sink my teeth into, today my mantra STRONG is coming into play, I will NOT eat any of these things, because

  • I want to become healthier
  • I DO NOT need Chocolate (quietly sobs)
  • I  want to get better
  • I will stay away from the kitchen
  • I can do this (still sobbing) lol

Seriously though I know to get anywhere I have to stay strong and motivated, today I’m probably just overtired, and it’s kicking in that I’m not eating the lovely (crap) foods I was over the festive period, where I went with the motto eat drink and be merry or in my case eat eat and be merry!!!

I will be posting updates on how the healthy eating plan goes, the scales have been removed by my Mum from this house, so I can’t scale hop like I usually do, this in itself is an addiction I have had to beat, going cold turkey from the scales, so with that and sugar withdrawal it’s all going on!

https://www.bhf.org.uk/publications/healthy-eating-and-drinking/facts-not-fads—your-simple-guide-to-healthy-weight-loss
This is the link for those of you interested in my healthy eating plan, fingers crossed for me it works!

Hope your day is a happy and healthy one.
❤ ASIBTAF xxxxxx

My start of January positivity!

Today was my first hospital appointment of the year, taking on board that my new approach is to attend them with more positivity and make a more concerted effort to leave my negativity in the past.

My side kick for the day was my oldest (still on her school holidays), she is a brilliant companion, helping me around, making sure we have a toilet stop before we head to where I need to be, “you don’t want to be needing it when you are in there, do you Mummy?” As she ushers me in, she is like my second mother so caring and considerate of all my needs lol.
I am under the illusion that I am heading to the physiotherapist department for some help with my balance, think I have touched before on my balance and spatial awareness e.g judging depth of stairs, steps, curbs, or the floor feeling like a swimming pool, but mainly when my pressure is high I tend to become really unsteady on my feet, wobble off balance, vear to the right, unfortunately for me I can look drunk, without a touch of alcohol passing my lips!

When I say under the illusion, it is what I was told when they rang me to book me in, I was taken for my intial new patient consultation, and Vicky the physiotherapist explained she would be helping me all she could to reduce my IIH pain and to see what could be done for my balance, she was lovely, perhaps this was my positivity kicking in but I felt like finally someone was doing something that could work or reduce the symptoms at least, but when she pulled the Acupuncture word out the bag, I couldn’t of been more happier, back last November I was lucky enough to meet up with someone else with IIH, someone who understood my daily grind, she was also able to enlighten me with things that helped her, and Acupuncture was one of those things, so I mentioned this to my Neurologist who said the waiting list was around a year and to expect a long wait, he said he would refer me, so you can imagine my excitement when Vicky said she would be doing it today!

Vicky told me that one  of the great advantages of traditional Chinese medicine is that it has an entirely different theoretical framework based on the flow of energy, or ‘qi’. It is possible that she may see signs of disruption to the flow of energy or blockages which may, from a Chinese perspective, be responsible for a build up of pressure at the top of the body in the head. Some of the classifications in Chinese medicine thought may appear simplistic but often accord with how people experience their conditions – ‘feel like I’m sinking inside’, ‘feel like my head is about to explode’, and so on. The clear understanding of the various flows and how they are disrupted can often point to systemic problems which treatment may help to alleviate.

As the needle came out of the packet, my loyal side kick looked utterly horrified grabbing my hand, caressing it and telling me it will be alright, I immediately reassured her that I would be fine, it doesn’t hurt (I hoped) and that it was to help my head, Vicky too assured her it was nothing to be alarmed about, but she didn’t have to watch, but there was no moving her, she was there, that was that lol.


The needles were placed firstly in my head, I wouldn’t say it was painless but definitely nothing to complain about.


Hands next, I felt quite a dull feeling from the needle in them, strange sensation.


Lastly feet, the left foot I felt nothing really but definitely an odd sensation in the right.


Apparently the needle positioning and how many etc will change with each appointment. But for today that’s where they were, they were left in, all whilst lovely daughter was reassuringly rubbing a part of me she could find that didn’t have a needle in, looking quite repulsed, even more so when I asked her to be my photographer!

Vicky told me I would possibly feel more tired than usual later in the day, but to go with it, and it may reduce my pain slightly.

I can’t say yes I feel amazing, but I can say that my right eye doesn’t feel as sore and pressured as it did previously this morning,  so small positive steps, yay.

I’m back there next week for longer, so will you keep you posted on how it goes.

Do you remember the floating turtle that my oldest was demanding in a previous blog, So Kev and I said she would need to earn the money to buy it, as we had spent enough over Christmas, using her initiative she asked Kevs mum if she had any jobs that needed doing, this resulted in her spending the day with Nanny on Tuesday and earning the money.

So on the way back from the hospital, we popped into Argos and made a purchase.


Some of you may be observant enough to notice that the turtle (the turtle that was the most cutest thing on the planet and she needed it because it was in the sale)IS NOT A TURTLE ITS A 🐸 FROG.

After seeing that the frog was £9.99, cheaper than the turtle, the frog was by far cuter than the turtle in her eyes, I personally think the excitement that she would have £5.00 left definitely swung it for her and the frog is now the lastest addition to the Andrews household!

I think she loves it that bit more knowing she worked hard for that money, and her excitement was a lovely end to our morning out!

  • Day 1 of this years Hospital Appointments ✅ 
  • Day 3 of healthy eating ✅ 
  • Positive vibes ✅ 
  • Frog 🐸 toy ✅ 

I hope your day was a happy and healthy one!

Big ❤ ASIBTAF xx