Ruby –  Crazy, Funny and Brave

So a few people who follow my blog have asked about Ruby and why she has hospital appointments in Southampton, apologies for those of you who do know, but there is a little update!

Ruby was born by elective c- section in March 2007 weighing in at a whopping  10lbs 11ozs, after delivery she was not breathing as she should and was whisked away, I can remember lying in the theatre begging for them to tell me she was ok, and them saying she needed a bit of help to breath but would be fine in a few hours, I can still  recall the empty feeling of not being able to hold her, and ringing my Mum to say I’d had her but hadn’t been able to cuddle her or have any skin on skin contact, some might say I had missed out on the initial bonding with my baby girl, but for those of you who know Ruby you know she is the most loving and tactile girl you could meet, never far from my side!

That evening Ruby was back with me, and my second journey through motherhood began, I remember looking at her thinking how could I be this lucky a second time, this beautiful bundle of joy, little did I know what would lie ahead of us.

Ruby wasn’t a particularly easy baby, she cried a lot, she cried night and day, there were smiley happy times don’t get me wrong, but it would happen that the days would become as long as the nights, and I knew there was something not right with her, call it mothers intuition, she had right from birth this horrible crackling sound inside her chest , where sometimes her voice resembled Darth Vaders voice , feeding would be hard as she would feed then be sick, with a mucus coming back with it,  I mentioned it to my health visitor who agreed that something seemed amiss, so I booked her in with my Doctor who was great and said to try some antiobiotics, now this happened several times, chest infections again and again each time the medicine would work, then it would all reoccurr, so my GP said about seeing a Paediatrician in our local hospital, which we did -intially they thought she had Cystic Fibrosis (waiting for the results were the longest hours of my life)  once they knew it wasn’t this they were quite happy and as much as they checked her over and looked at her, would say she was fine, they would just say we will see her again in 6 months.  We had endless trips to A and E for steriods or a nebuliser – I cannot tell you the nights I’d be on the road in the early hours to get her some help because she couldn’t breath properly.

The first 16 months  of her life were really hard, I felt like I was failing her, like no one, bar family and friends would listen to me, I remember sitting with my health visitor saying that I couldn’t cope, and that I was sure something wasn’t right with her,  to which she replied that she thought I had post natal depression and that Ruby was actually ok, she said I had to think that Ruby had been checked by professionals and they hadn’t found anything, but come on as parents  we know in our gut when there is something not right, I probably wouldn’t of admitted at the time I had PND but I was unwell with it (in denial), but that’s a story for another time lol.

I stuck to my guns and went back to my incredibly supportive GP, I cried and cried, telling her that as gorgeous as Ruby was, there was something wrong, even though she was reaching all her milestones, I knew she was struggling, I pleaded with her to help me, and she suggested that  we try another hospital, another consultant,  together  we decided on Poole Hospital, Dorset as Dr Gary Connett is a specialist respiratory paediatrician  who visited there once a week from Southampton General Hospital. 

This for us a family was a massive turning point,  I remember our first visit there as clear as day – I can relive the day moment by moment, we turned up and Ruby was weighed and measured, they then took her sats – I knew something was wrong when the Nurse left the room and got  a Doctor who then asked if they could take Ruby as her sats were really low and she would need some extra help, she was given a nebuliser, after this we met Dr Gary Connett who said that he thought Ruby really was quite unwell, he wasn’t sure why or what  was causing  her to be so  poorly  but he could identify a few things just from how her chest was rising and falling, her skin, her nails and her past history that I previously had explained,  no one ever wants to hear that their child is unwell especially when you don’t know what it is that is wrong, but just 5 days later, I watched Ruby be taken off to theatre I know I’ve had my fair share of crap but that moment was probably one of hardest, my heart was breaking, it felt like she was in surgery forever , and I felt such guilt (Mum guilt hits again) that she had to go through that and that I wasn’t with her.

The thing is even with her ailments and what she went through,  as she got older she would be so happy, smiley and trusting, and everyone loved her, she used to bring laughter to most situations and to be honest she still does.


Whilst in theatre Ruby had a Bronchoscopy, they also removed various cells from her lungs for testing to see if this was the area causing concern.

It took some weeks for the bronchial lavage cell counts to come back, I was at work when Dr Connett rang and I knew he would have some answers for me, I was so anxious as he explained  that the bronchial lavage washes had grown a group of Group A Streptococcus, Some strains of group A streptococci (GAS) cause severe infection. Severe infections are usually invasive, meaning that the bacteria has entered parts of the body where bacteria are not usually found, such as the blood, lungs, deep muscle or fat tissue, in Ruby’s case her lungs, he also said that he had a diagnosis – Middle Lobe Syndrome,  whereby recurrent infection can occurr in the right middle lobe, which has poor collateral ventilation and which is prone to recurrent aspiration and infection, this would explain why we had consistent improvements after antibiotics, but never sunstained due to only being short term doses, also this had caused a cough variant Asthma. 

Finally an answer, an answer that rocked us all, but meant we could help her and finally start treatment, and ensure she had a better quality of life.

He also informed us that severe GAS infections may lead to shock, multisystem organ failure, and death. (Early recognition and treatment are critical) So her treatment began immediately a continuous antibiotic, Bubble PEP Physiotherapy ( this is process to help remove a build up of phlegm/secretions from the lungs) she loves this – blowing through a tube to create a mound of bubbles, huffing and coughing! We also started two inhalers Flixotide and Salbutamol.

So this all started back in 2009, and here we  are now just last week having the six monthly check up in Southampton, Ruby still has the same wonderful consultant, Dr Connett, who treats her with so much care and respect, she thinks very highly of him and each visit they catch up like old friends,  He always wants to hear her latest footballing achievements!


Sadly this last visit wasn’t one of her best, within 15 mins of being there she was on a nebuliser, as her lung function was not as it should be, Ruby never moans, she carries on with life with such enthusiasm and as I mentioned before humour – that you can’t always tell when she isn’t firing on all cyclinders, however she has been struggling a bit the past few weeks, more tired, more out of breath so it was good that she had the visit to be observed and see what we needed to do next, not every visit is like that, most show her moving forward but every so often we take a step backwards , and I try not to let it worry me (who am I kidding) because I know she is strong – a warrior like her mother lol , for the next few months we have to up her meds, give more inhaler before sport, and when the cold winter weather hits, get back on the antibiotics, if you met Ruby you would be none the wiser to what is going on in the inside, she seems to have endless amounts of energy probably from the copious amounts she eats!!

It’s not been easy for her growing up and yes she will still now scare us half to death needing the odd  ambulance ride to A and E but you know what she will still be smiling at the end of it all, she never lets it get in her way of enjoying life, she is brave and beautiful with a twinkle in her eye, and Kevin and I couldn’t be more proud!

Our Children take us to places in our hearts we didn’t know existed! 

Have a happy and healthy week.

ASIBTAF 💕

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

Glastonbury 2017 

So it’s a few days  after the Glastonbury weekend and I’m sat in the Doctors to get some strong pain relief for my head, I wish I could say I partied hard like usual, or that I visited my favourite Silent Disco but the pain didn’t allow, to be honest if I hadn’t had to work my shifts I may not of even made it there at times.

 Trying not to feel sorry for myself as the pain is so intense I need to get it sorted, and I feel it’s like the final straw, the one thing I really look forward to, and IIH robs me of it yet again, this is so unfair, I even used my stick which I have to say was a god send (thanks Hart mobility ).

I must say though there were definate Glastonbury festival highlights for me, with the added bonus I can remember it all as I couldn’t drink lol, my husband and I, as I mentioned volunteer there as Fire Stewards in the John Peel Tent, so have the added bonus of backstage wristbands, but this year I was also given Disabled Registered Access, which initially mortified me, as I in my mind I like to think I am still the old Kirsty who loved a visit to the Rum Shack and dancing til the early hours but it was amazing we had access to areas we hadn’t been to before which was great for us it felt like a whole new festival we met the totally gorgeous Fearne Cotton and had to have a cheeky photo, as I do love Fearne, equally as gorge Sienna Miller said the girls were gorgeous, much to the three girls pleasure (the girls only came in on the Sunday).


Not only did the passes allow us access all areas, but it really helped with getting around, the short cuts were much appreciated! Our shifts were really busy the busiest we have actually ever experienced, we were on shift when the Killers were on it was total bedlam, I think they overestimated just how popular it would be, as in the end all exits to the John Peel were blocked with Security, people were so desperate to get in, people begged Kev and I to let them in by paying us sums of money, it was really sad not to be able to help them, most were really lovely with the exception of some, one famous footballer who shall remain nameless threatened Kev will flooring him unless Kev let him through the fence, and became really aggressive, he did leave Kev alone but did end up having an altercation with the security guy which was quite frightening to watch, people were desperate and would do anything it would seem to watch them,  and I hate to say it they were AMAZING..

This was the first year I had worked shifts with Kev, it was nice to be together and working together as a team, all be it harrowing at times lol, when not on shift  we enjoyed some fantastic bands one of my highlights were a duo from my younger years Altern8, anyone else remember them?, wearing their boiler suits and masks It was a great set, also amazing and worth looking up Showhawk Duo, loved every second of their set – brilliant, I think they will be on a bigger stage in 2019! 

So I wasn’t a huge fan of Foo Fighters, Kev and my friends are, so naturally had to watch them, and they totally rocked, I really did think they were awesome, definitely converted!!

Overall more memories made with my gorgeous friends and family, dealt with some really friendly people, some not friendly, helped people who may have taken a little too much of a certain substance, dealt with a bag scare that turned out to be a child’s bag of wet pants, and generally had a lot of fun with everyone, I’m sure I’m not the only one but it did feel with the main acts that the crowds were more excessive than usual, whether this is because it was good weather and everyone which was out and about which of course is only natural or because there was more people than in the past I’m not sure but at times it was too much for me.. is this a sign I’m getting old?.

Health wise I did suffer, I was on various types medication which we had to leave site to get, it made me so frustrated that events I look forward to get ruined by my head kicking out the pain, I try to be positive but of late it really gets me down.
More so when on Wednesday I speak to my Neurologist, to arrange a Lumbar Puncture, who says to me, “I have just realised when I saw your name, I was meant to discuss with the surgeons about you having surgery wasn’t I?, I’m really sorry I have forgotten to do this”.  You all literally have no idea how frustrated this makes me,  I know I should admire his honestly and yes I realise how busy every one who works within the NHS is don’t get me wrong, but when you have been sat waiting for a letter to come for the past few months, it really doesn’t do much for me trying to be optimistic in attitude, to me I had been focusing on this as perhaps an end to the pain, but sadly nothing had actually been said to anyone, hopefully now I’m fresh in his mind there will be some action taken! I can only hope.

To those of you who were also there I hope you are all slowly recovering from what is otherwise known as the Glasto blues and that you all made loads of amazing memories, feel free to share with me your best and worst bits, and to those almost 21 million people (20.9m) who watched Glastonbury on the TV from the comfort of your sofa – I hope your weekend was awesome too.
Big ❤️ ASIBTAF xxx

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.

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

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 ❤

Remember kindness makes a difference.

I’m 3 days post lumbar puncture, still suffering slightly with a low pressure headache, but my pain, is mainly radiating from my back.  I had my ‘new patient’ appointment with my new GP first thing yesterday, which went really well, the Dr was really supportive and said though she didn’t know much about IIH, she would try her best to support me medically through my journey,  she said we would work together to see what works, which was really reassuring (positivity yay)she thinks a nerve may be damaged in my back temporarily due to LP, but should heal up soon, am hoping so as I feel like I’m walking like a duck!!


Later that morning, my brother and I attended the funeral of a friend of our family, she was well known, much liked/loved by so many, she was a very special lady, back when I was 15 she employed me every Saturday to do odd jobs, enabling me to pay for the School Ski trip, I would cycle ten minutes up the road to her house spend two hours with her, then two hours with house opposite, they were happy times each lady a wealth of knowledge (there were 4) , when I was with her, we would cook, garden and clean together, her cooking was lovely, one of my favourite memories is making her well known sausage rolls,  best bit for me was sampling! She would tell me about her childhood, her work career and I remember thinking how much she must of had to come through,but had that motivated her to  be all that she became? she was born in Germany and, because her grand mother was Jewish, her Austrian/German parents sent her to England for her own safety in 1939, hoping that one day they would all be reunited, sadly though her mother died in 1943, and her poor father was in a concentration camp,  she arrived on the kinder-transport, and was then homed with Dr Barnados, where she was educated and found work, a friend of her employer at the time, helped her to pursue her career in nursing, she trained in Southend General Hospital onto Charing Cross, from here she went to the Strand, it was here that she was the ENT Sister in charge of three wards and operating theatre for 16 years, she moved to the village I lived most of my life in, in 1972, where she eventually became Matron until 1986 in a local town hospital. I learnt yesterday that she had no memory whatsoever of  the time she was put on the kinder-transport at the tender age of 11 and sent away, I look at my eldest thinking she is not long past that age,  how heartbreaking for both parties that must of been,  that must of been why she had erased it from her memory, but did that make her the kind, caring lady she became? 

It was said yesterday

People will remember her totally dedicated care, not only of her patients, but of everyone she knew.

This is so true, she did care for us all in different ways, how wonderful to be remembered for being kind and caring.  I will always remember her, may she rest in peace.

If one person remembered me for an act of kindness how fulfilling would that be.. the reasons for being kind are innumerable

  • Being kind feels good
  • Kindness broadens our perspective
  • Kindness helps people feel respected and less alone
  • Kindness softens our heart
  • Your children will follow by example (thanks Mum and Dad)
  • People will want to spend time you
  • Kindness is free


I myself have recieved so many acts of kindness in the past 48 hours (if the truth is known every single day) , from my beautiful family, wonderful parents, brother, fabulous friends, each one daily checking on me with texts, messages, emails, cooking and waiting on me (thank you Mum,Dad and hubby)

A friend bringing me flowers ‘to brighten my day’


To people speaking to me as they walk to work with a cheery hi, then another friend stopping and asking if I needed a lift because she knew I was in pain and it was raining.

All of these small acts of kindness mean so much, since becoming unwell  I am grateful for each and every one I receive.

Think how happy a day can be when kindness touches it x
Lots of ❤️ ASIBTAF