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

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Brain problems

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

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

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

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

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

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

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

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

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

Eye Eye..

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

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

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

Yesterday I had to attend an IIH related hospital appointment. 

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

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


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

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

Hope you all have had a lovely week.

Love ASIBTAF ❤️

Pain in the back – Lumbar Puncture day!

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

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

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

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

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

This article is from the Daily Mail:-

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

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

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

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

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

Quick explanation on a LP, from the NHS website.

The procedure:-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s costs nothing to do so.

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

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