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 ❤️

Tiredness and Mumming it! 

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a happy healthy week

ASIBTAF ❤

Wife and Mum first, IIH warrior second. 

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

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

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

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

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

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

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

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

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

Lots of love ❤

ASIBTAF 

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

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 

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

Morning Pain.

Last night my head felt a bit odd, not awful but not right, this morning I have awoken to a vice crushing my brain together whilst trying to push itself out of the front of my face, it’s not a feeling I’m unfamiliar with but it’s one I haven’t experienced for the past 6 weeks with such ferocity, I’ve had the odd light head pain as usual which you know you have but just go about your usual day, this is partially I think because I’m used to having it, I’m sure other sufferers can empathise with me on that, we all have headaches, mild or chronic, some we can manage, some we cannot.

This morning is one of those mornings where I can’t manage it, I don’t think I have moved from the same position for the past hour, if I move the pain just pulses with me, making me nauseous.

Headache tends to be the first symptom: generalised throbbing is worst first thing in the morning and last thing at night. It is relieved on standing (consistent with raised intracranial pressure). It is also aggravated by straining, coughing or a change in position.

Visual blurring can occur, as can obscuration’s such as blobs of black and smoke like wisps (known as floaters), I seem to have these pretty much all the time, There is also double vision, and in some cases sufferers experience visual loss in one eye or both, I experienced this a lot before I was actually diagnosed, I was at work and literally everything went black, as you can imagine this was so frightening, unfortunately this was put down to tiredness by A and E, I was sent on my way then my initial diagnosis was Labyrinthitis this is an inner ear infection. It causes a delicate structure deep inside your ear called the labyrinth to become inflamed, affecting your hearing and balance.

But I couldn’t understand why my head hurt so much if it was my ears, but took the medication which I think was SERC, it didn’t really help, and after a few more trips to  A and E, then a hospital stay I was diagnosed with Idiopathic Intercranial Hypertension, “Idiopathic” means “of unknown etiology” “Intercranial”means within the skull, and “Hypertension”means abnormally high pressure.

And TODAY, IIH YOU HAVE TAKEN OVER MY HEAD WITH A VENGEANCE!

I’m hoping that a some point today you do one, as I have things to do, I’m still sat here wishing you away, Luckily my lovely oldest daughter has taken the smallest to school, I am better not talking or moving my head, and it’s literally taking me word from word to write this (thank god for spell check) but if I don’t explain the bad days, how will people gain a better understanding of this condition.

I’m hoping the pain will ease off at some point this morning, and that there won’t be a trip to my local A and E, I’m sure my back isn’t ready for a Lumbar Puncture just yet, I say I my back but it’s actually my mind, I need to be mentally prepared for one, but if needs be, I would.

So as I sit here feeling guilty that the dishwasher isn’t packed, the washing has not been hung up, that I didn’t take my smallest to school, that I had to cancel my plans with family and friends, I reflect on the fact that hopefully later in the day I will feel better and all those things will still be there, it’s no biggy they aren’t done, that my smallest had a treat with the oldest (they bonded not argued) and it makes me more determined to focus on my journey of getting better, but for now I’m going to try shut my eyes and sleep it off!

Have a lovely day 

Big love ASIBTAF ❤️

Another day, another hospital appointment 

To be honest I have wanted to write this all day, but haven’t been able to start it, I’m not sure if it’s the frame of mind im in, or because I am feeling really tired or the fact that the appointment humiliated me so much perhaps I shouldn’t share it, but you know what, I should share it how else can other people relate to it, or know someone else has been through the same.

So I will share my shitty day with you… it was an early start for my Mum and I as the train was at 7.44am, we had to drive to the station in Castle Cary as the train is direct from there so perfect 20 mins on the train rather than hour or so in the Car, I unfortunately can’t drive too far/long distances due to the damage in my right eye from Papilledema (Papilledema is optic disc swelling that is caused by increased intracranial pressure. The swelling is usually bilateral and can occur over a period of hours to weeks) so tend to just potter locally.

Whilst deep in conversation with my Mum on the journey to the station which is a short drive away from home,  I realise  I’ve totally cocked up and that I’m in bloody Shepton Mallet, the total opposite direction to the bloody station after a quick 360 degree turn around the roundabout we make a hi turn to the station trying to keep within speed limits, we literally park up, and run for the train, we arrive at 7.43am train is a mentioned before 7.44am, so much for leaving with plenty of time, this can only happen to me.

On the train flustered but relieved I think about the appointment ahead, the letter I received said it was an Endocrinology appointment, this is a new and first for me in this field, I was hoping that this was going to be a positive appointment and maybe give me some answers in the link between hormones and IIH. Endocrinology is the study of medicine that relates to the endocrine system, which is the system that controls hormones. An endocrinologist will deal with diseases that are caused by problems with hormones.

How wrong could I be to think that?

I checked in, was about to sit down with a cheeky soya chai latte when I was approached by a diabetic nurse wanted to know if I would help with a research project and if I would partake in some questionnaires, I couldn’t see a problem with this, I was a bit confused but thought it was part of it all, as I was sitting filling in paperwork she mentioned my appointment in the weight loss clinic, I could feel the humiliation on my face, and the look of confusion on my Mums, I ask her what she means and get out my letter with the Endocrinology appointment, whilst still feeling really comfused, she says oh yes that is a clinic held here but also the consultant on the letter runs the weight loss clinic here today, at the point I literally don’t know whether to laugh or cry, Mum looks like she fit to explode and calmy (though I know her and she would probably like to throttle whoever has set this up) she asks what is going on, the nurse says did you not know that this is why you are here, to look at how we can help your daughters weight problem, by now I actually want the ground to open up, please do not think I am naive I know I need to lose weight, I know I’m not an average size, but can I just add just over two years ago before IIH I was super fit, I was in the gym 5 days a week, I cycled miles for various charities and though I wasn’t a perfect size 12 then either I was fit and healthy.  I really don’t need someone to tell me I’m overweight I am well aware, we all sit there looking confused, shocked and in the case of the nurse red faced.

I then continue with an appointment with the Endocrinologist, who says my wonderful GP asked for a referral for me, yes the same lovely GP who last week asked me if I was going to consider weight loss surgery and I said no thank you, please DO NOT think I am against people who have had it done because I don’t, I actually have the upmost respect for these people and think they are amazing for doing something that I am so afraid of, he asks me various health questions we touch slightly on hormones and even do blood tests to touch on whether or not I’m menopausal, we then discuss my options, but do you know what hurt the most during this  whole embarrassing farce, when he says well you look very well,not too much wrong at the moment! this is the point where I feel my voice wobble and I fight back the tears to say, I’m 4 weeks post LP , I’m always a little better after, but my balance and sight aren’t great sadly.

After then discussing my daily diet, the fact that I can’t excercise because my head just won’t allow it at the moment, we agree that I will rethink my daily calorie allowance and in 3 months I will go back to them to be weighed and assessed again how that fills with me with deep joy.  Again I stated at this time I would not like surgery, I think it just makes me more determined be strong  enough to fight the flab by myself.


Though this is upsets me I hate that there is such a stigma with weight, I know that being lighter should make me healthier but and I know this sounds like an excuse, so many women with this condition suffer with the massive struggle to shift any weight, its hard so hard, I know I would lose my pounds if I was able to get back to my fitness regime, but having tried to then needing a LP, not long after I know my limits, I would walk more, but literally I need an arm or a stick,  those close to me know I will grab an arm and they will happily take me on lol, but if I’m with someone new I don’t feel comfortable linking arms with them and marching on, and my stupid stubbornness or even embarrassed (yes I know I’m ridiculous) stops me from taking out my stick, it takes me back to my favourite phrase of if I use the stick then the IIH has won, I can imagine people reading this thinking well that’s just plain vanity, it’s not, I’m just mortified that this could happen to some one like me, some one who as my wonderful consultant pointed out looks normal, I know those who love me and are close to me know when I’m going through a really bad episode and can recognise the signs and I do appreciate that people that don’t know me can not understand the condition, which is why I’m doing this, to hopefully bring more awareness. 

I do find that after most of my hospital appointments I come out feeling so disheartened, sadly I know I’m not the only sufferer who feels like this and it’s just so sad, that in this day and age there is not enough knowledge about this condition that you can leave with positivity and happiness.  I did have high hopes for today, and thanks to a huge lack of miscommunication this was not the case.

The best thing that came out of the day was spending some time with my Mum, just her and I, there always has to be something good out of these days, and a bit of Mother and daughter bonding is always good.

And last night feeling totally shattered, slightly upset that I was suffering  with weight stigma and feeling shame placed upon me based on my weight or my body size. I looked at my oldest daughter who proudly brought me a cup of tea, got in beside me, lovingly stroked my head, told me just how much she loved me it was then I realised that dwelling on the day won’t help, but looking to the future with positivity and 1500 kcals lol isn’t so bad.

Lots of love ASIBTAF ❤️

Time spent with family and friends is time well spent.

So the past couple of days have been packed with seeing some friends and family, I am blessed that my parents live around the corner, some might say that’s too close but for 10 or so years we were closer than that, and they were very happy times, we moved and went our separate ways to relocate here around 2 years ago, so around the corner actually feels like miles away! My brother and his wife live in our town too so it’s lovely for my children knowing they can see them regularly.

Yesterday began with a quick trip to the nail salon for some Christmas nails, now this and my shoe habit I seem unable to give up, I wish I could stop being so vain, BUT : Depending who you ask, they’re either works of art, an absolute necessity, tacky nonsense, or a special-occasion treat. To me, they’re miracles, I feel more confident with them on,  in the words of Shania Twain – Man I feel like woman! 

Also I like the people who do my nails for me, again people have divided opinions on where you should go, there is a husband and wife Vietnamese couple who do mine, she is always so welcoming,  and offers a cup of tea or coffee to her regulars, I don’t think her English is as good as her husband, and I can quite often natter on to her and I don’t think she has a clue but nonetheless smiles laughs and nods leading me to wonder what I said that was so funny, yesterday though confirmed our language barrier, I sometimes get a photo from the internet and she will happily do the same for me,  so as the norm I showed her my picture and she nodded.

She then said ( well what I thought she said was) Same same and pointed to the picture.

I said yes great, she then said it again, I said yes great, again.

I now realise that what she was saying was SAME SHAPE, how do I know this I bet you wonder? Because I now have the Coffin shape nail, which sadly isn’t my thing, but will teach me to maybe listen harder next time! 

After rocking my Christmas coffins, I met up with one of my lovely friends Lu, we literally haven’t seen each other for weeks, down to illness in her family and various hospital appointments on my part, So it was great to catch up,  share our news, hit Tesco and grab a Costa to go, she literally makes me laugh at most things usually her random messages, sometimes they are so needed, during my last hospital stay I was so blessed to have her and Lucy by my side, usually my husband or my Mum nurse me through my Lumbar Puncture but this time it was the job of poor Lu, as Luce had just left, I will always be grateful for the love and care they gave me that day, anyway enough sentimentality, our reunion was short lived as her daughters Carol service awaited her.

So then onto The FMLY Store, this is the newest shop in our town and I love everything in it and about it.

The paragraph below is taken from the website not my own words, just so you get an insight into one of my favourite shops.

www.thefmlystore.com

Selfish Mother’s #GoodTees were created with the simple idea that selling clothes shouldn’t just be about profit – they should do good, too!

#GoodTees are more than just items of clothing. The T-shirts and Sweatshirts not only look good and feel very good, but they support GOOD causes. 

From the original MOTHER Tee, which Molly Gunn created back in July 2014 to support Women for Women UK – the #GoodTees brand has grown thanks to brand’s ‘wear and share’ philosophy and supportive crew on social media (thank you!).#GoodTees has donated £218K to charities as of July 2016. Simply by donating every time an item is sold. As of July 2016 we donate £10 per adult item and £5 per child’s item. These donations have been divided between the following charities – which we truly believe in, and are all doing amazing work in different areas: Women for Women UK, Kids Charity, Help Refugees, The Refugee Council, Starlight UK, Mothers to mothers.

I followed Molly Gunn aka Selfish Mother on social media before she too relocated to this town, I admired what she had done and why she was doing it.

So this is where the Idiopathic intercranial Hypertension rears its ugly head, this time it did beat me and there are times when I actually am angry it did as now the store is here up and running, I feel like I am missing out, and here is why.

Whilst flicking through Instagram imagine my excitement when I see that Selfish Mother is recruiting in my home town , I apply, I get an interview (in which I felt I was a nervous sweaty mess!) but get offered THE JOB to which I was beyond excited.

I was having a really good few months, no  awful head pain, I had energy and I thought I was in remission (so why not apply for your dream job) apparently you can do that with this condition go into remission for years or in my case it was short lived. I had bagged myself a job I really wanted, then BAM the last week of August the whole lot came back and when I say back I mean back with a vengeance, the wonky walk where you bounce off people or walls, the vision that feels like you are walking on water, the pain in your head like a vice is crushing it in two, the random speech, the painful right eye (more on that too follow)and lastly the random memory!

I knew then I could not take the job and I felt gutted, part of you feels angry because your not the person you were before and the other part wants to say bugger it just do it, your letting it beat you, but this time I really couldn’t beat it, I have had two hospital stays as I mentioned before the last one was the worst I’ve ever been in the 15 months of having IIH, so I had to write and explain I couldn’t take the job which to me was so demoralising, but something I had to do.

So back to my day of socialising at The FMLY store, I met another fab friend, and we took advantage of the honesty cafe and had a good natter, the highlight though of this visit had to be the vintage photo booth, so with my friend carefully balanced on my knee we set about taking our photos whilst getting in the festive spirit wearing some festive glasses, it could only happen to us that she nearly fell off my knee my hand shot up her bare back to grab her resulting in a shock for both and me missing my last photo, the first attempt didn’t work though as the camera was playing up, so will show you the two that were successful!


You know when times are hard, or you don’t feel your self, look around you at what you do have, I do this a lot my husband, my children, my amazing parents,my family and my beautiful friends, they are my reason for not dwelling on having a chronic illness, sure I may do this from time to time and for sure you will hear me moan, but today I am thankful, thankful for all the joy they bring me.

They are my reason to smile.

Big ❤️️ ASIBTAF