Brain problems

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

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

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

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

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

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

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

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

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

Eye Eye..

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

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

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

Yesterday I had to attend an IIH related hospital appointment. 

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

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


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

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

Hope you all have had a lovely week.

Love ASIBTAF ❤️

Weigh day happiness


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

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

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

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

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

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

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

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

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

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

I’m 6.5 pounds down…

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

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

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

Off to find a lovely apple…..

Have a lovely evening

Lots of love ASIBTAF ❤

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

Good bye 2016 ..Welcome 2017

So as I prepare to pop away the Christmas decorations, with slight disbelief that it’s actually all over, I take a little time to reflect on the year gone by.

Christmas itself has flown by, I actually have had my husband home for a whole week, this in itself is unheard of so had been really nice, I’m sure as many women out there over this period, there has been many a moment thinking of the day everyone goes back and normality resumes, I can’t moan too much though as he tells me, “I have been quite helpful around the house haven’t I? ” he means he has washed the floor, (that has taken two days to dry) and daily he has picked up the hoover and hoovered the lounge. “Yes” I reply “domestic god” 

The best thing about this Christmas for all of us was the fact I was up and about, 2015 the pain was that bad that I should probably of been in hospital but wanted to be with everyone, though sadly spent most of it in bed, I think the November 16 lumbar puncture made sure that this Christmas I was relatively on good form! I love Christmas, everything about it from decorating the house, to my Mums amazing Christmas lunch to that feeling in your stomach when you see everyone together, laughing and happy,  to me it makes any shitty thing to do with IIH a distant memory. 

My oldest  daughter however has morphed into what I would call as Kevin the teenager.  To everyone else she is sweet and kind, to us she spent from Christmas Day to probably the following Wednesday thinking I’m the worst mother in the world, and her every other sentence was “god everyone is so horrible to me, I haven’t done anything wrong” with the added touch of a grrrr at the beginning or end 

And right now as I type, I’m the worst mother in the world because I won’t buy her a bloody floating interactive turtle, she is using my favourite words “it’s in the sale, do you not get it Mummy”, apparently she needs it so it can swim alongside her on the rare occasion that we actually swim, she has now left me whining away about how I don’t understand why she needs this darn turtle 🐢, and has moved onto her Dad, I can hear the conversation and it is similar to the one I have just had only his tone is  a tad more cross as he has nearly reached his limits with politeness to her on her millionth time of asking and him saying he is spent out – this is one of the things that happened in 2016 – I realised my beautiful sweet natured kind girl was turning into a young lady.

My 12 year old, 13 this year, left primary school and went to Secondary school in September 2016 as I’m sure like many Mums out there, you could literally see the change in her overnight, she seemed so grown up, mature and a bit more independent and with it came sass and attitude, in some ways I was glad, as she was a very shy timid child who never spoke up for herself out of the house

 We couldn’t be more proud of her results from her first term at secondary school or the beautiful girl she is becoming but this Christmas I’m sure hormones have joined in the with the sass to create my mini turtle loving diva, but she really is the most thoughtful, loving girl who I wouldn’t change for the world.

My illness made them grow up faster, both of my girls as you can imagine suffered, because we are generally always together, the 3 of us, my husband works long hours – weekends also, so it’s the three amigos most of the time, my hospital stays can be any length of time from 10 days to 4 days, in small people’s lives that feels like an eternity, I usually know when I need a lumbar puncture, I try to put it off for as long as I can as I know just how much it disrupts their little lives, My oldest will hide her upset for a day or so, pretending she is ok and my smallest will crumble immediately with the worst thoughts running through her head, she needs constant reassurance, then after a day or so the oldest will send me heartbreaking messages of how she needs me home, it’s so hard on them, another reason why I dislike this shitting illness so much.  However the support network the girls and my husband have is amazing, we are blessed that the minute I’m not at home they are loved and cared for, they are collected from school, fed, watered, loved! all from my family, close friends.

My girls are either inseparable or need separating there is no in between, my smallest is 9 her smile is infectious, her personality is crazy,she loves playing football for the local girls team, playing minecraft, winding up her sister, and generally being on the go, she is though a real thinker and I tend to hide my symptoms from her, this is because if I mention that my head hurts  you can see the fear go across her face, the fear of what it may lead too, no mother wants to see that, 2016 brought a lot of that look to her, this makes me more determined to ensure 2017 is better for them, my husband and I.

2016 was a year of eye appointments, hospital appointments, lumbar punctures, numerous  appointments with my Neurologist and GP, it brought sadness and worry to those really close to me, it’s brought actual tears of frustration and fear from my husband 2016 also brought the loss of a son to a family  who didn’t deserve such a  tragedy – they are have been constantly in my thoughts this Christmas, it brought some of my own family members various illnesses and pain  they didn’t deserve.

BUT  it wasn’t all bad, 2016 brought me, one of the best adventures of my life- a week of happiness, sunshine and laughter in Kefalonia with my favourite people it has brought me new friendships, friends that are keepers, it has brought me lovely memories made with my parents in Cornwall, it has brought me much happiness with close friends arranging a Charity ball raising money for The Brain and Spine Foundation, The Somerset and Dorset Air Ambulance and Verrington Hospital.

It brought my mother in laws 70th birthday and my Dads 65th all special memories made, laughter and yummy food to be had.

Yes it’s been rollarcoaster but the happy times outweigh the low times, the happy times are the memories we need to keep in the fore front of our minds, when we feel wobbly, nervous, upset, grumpy or think we can’t face another medical procedure, I know I will think of the reasons I have to be thankful and make 2017 another year of happy memories it is after all my last year of being in my 30s.

2017  will bring my whole new eating plan (one for another day) more positivity that I will somehow beat Idiopathic intercranial Hypertension, more happy times with family and friends, a new GP, more hospital appointments which I WILL enter with a more positive attitude.
Thank you to each and every one of you who reads this, and thank you to those who know me who have loved and supported me this past year, I love you all so much.

Happy New Year beautiful people
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 ❤️

So today is already one of those days ….

So this morning I knew I had to be around after the school run, as the blind man was coming, not blind as in eyesight but blind as in Roller  and Venetian!

I was told he would be arriving by 9.15am, this was a good plan as I have the doctors at 10.50am so I thought I could get him in and settled then I could nip off to the doctors, he is well known to friends and Neighbours so I knew it was safe to do.

So my time keeping isn’t always great and I appreciate people get held up, especially at this time of year..it gets to 10am no sign, so I feel I should ring to see where he is, the lady who measured for the blinds answers then tells me she told me later in the day, now with my head I know I totally cack things up, so I question myself?  Mum (Whom I literally can’t live without for her help, love and organisational skills) tells me to write everything down, so I have been, I have two huge diarys filled with letters and appointments, yes I know I can write it on my phone but I need to see that I’ve actually written it!! 

So whilst talking to her on the phone very politely I say I’m sure you said 9.15am after the school drop and for once I remember I have a witness a friend was here for coffee so I know she heard it too as we discussed it on the school run this morning, (more on that later!). We agree she will ask the fitter what time he will come, and she will ring me back, secretly I want to stand my ground and get stroppy, do they not know I was up at 6.30am bleaching the bloody window surrounds and removing old blinds in preparation, but I refrain and agree.

Phone rings it’s the lady, she tells me he will be with me around 11ish AND actually I was right she did tell me 9.15, but won’t be telling people that time in future, she will be more flexible on the time scale, well there’s something we both agree on! 

So after feeling a bit huffy, I then actually rejoice that it wasn’t my head that cocked up, it was her. 

My head/IIH  has made me do some corkers, like a book a table for breakfast, turn up on the day I had arranged to meet friends only to have arranged it at the venue for the day after! It’s made me totally not realise I have appointments with people (sorry Jess) and thank god people have reminded me as I would never of turnt up(thanks mum) It’s made me put items in the most random of places Kev (husband) can literally find anything in the fridge. When my IIH is at it’s worst those close to me know that anything random can come out of my mouth, recently at a family dinner I told my Uncle I had a fish in my hole, mortified i explained that the fish I had from cracker had a hole in, lots of laughing as I cringed. Another time I was out with a friend and my words literally came out in a Chinese tone, we actually cried with laughter and relive it occasionally.  I couldn’t do it like that again if I tried.

Anyway carrying on with my day, I’m sat in the doctors waiting room for my 10.50am appointment, the happiness I feel as I see an empty waiting room is short lived as I’m told there are 3 in front me to arrive… happy days. 

People arrive in I’m sat on my own a lady sits on side of me in the bloody EMPTY waiting room and continues to get her toiletries out, she then procedes to cover herself (and me) in the rankest perfume known to man OMG I try to hold in my choking to no avail I end up having a coughing fit and she turns and looks at me in disgust and moves up. Next a youngish man sits the other side.. but he decides his shoulder length hair is not styled properly, so proceeds to nip to the loo which is just a door to the left of me cup his hands full in with water and literally cover me and him so he can smack it down, so now not only do I smell like a tarts boudoir, I look like a drowned rat, no apology nothing he just must be thinking as he checks in the nearby mirror, it’s not quite done so repeats the process by now I have moved for the fear of walking into the Doctors room looking like I’m in a Miss Wet Tshirt competition.

Two more people go in and it’s finally my turn, now I dread any visit to my actual gp, people I have talked to who also have this on a IIH Forum, are pretty much with me on this, there doesn’t seem to be an actual understanding of this condition amongst some Doctors ( and if people who have got this have got Doctor who gets it please share them with me) Obviously my Neurologist is meant to understand but he has his own problems which I will explain another time!

So today is a what shall we do next appointment – how shall we proceed, I’m 4 weeks post Lumbar Puncture and feeling okish since, not amazing and normal but so much better than previous to it.

I go in, we do the pleasantries and get to the nitty gritty, well basically she starts by saying ‘I think your depressed and that’s making your head hurt and then you anxious I think you need to take meds for anxiety and depression’..what do you think about this?

In my head I’m thinking are you actually bloody joking, your saying that the build up of Pressure in my brain is because I’m depressed you total knobhead…instead I reply with no actually I don’t think I’m depressed or anxious, yes there are times this condition gets me down (namely when my Neurologist told me I just don’t know what I more I can do to help you, you know Mrs A..) but no I don’t need to take anti depressants as well as the others meds I’m currently on, thank you Doctor, as you well know it took me years to come off them following PTSD and PND, so no thank you I won’t at the moment.

I can’t tell you how frustrated I am this moment, she hadn’t asked how I felt just told me how I felt, we then follow on with me weight (always a favourite subject of mine NOT) – So how is your weightloss going she asks, again in my head I want to say – Well you can see I’m still morbidly obese and we have just discussed that I seem to be retaining fluid in various joints, so yes I’m doing so well I will be a size 12 next month FML.

Instead I say yes I’m trying but its very hard when I can’t excercise like I used to or even feel like doing it.

Her reply to this – Is well you need to think about that Gastric band or balloon it could be very helpful?! by now I’ve had enough and politely say ok yes il think about that, and thanks for your help, have a lovely Christmas, I know she trying to help me so don’t think I’m ungrateful but this is about the millionth conversation we have had together on it throughout the past year and after saying a few times it’s not a route I want to take, it was nicer to say I will think about it.

I get in my Car feel very pissed off, and actually want a good cry or moan to Mum, Kev  or one of my close friends but actually I’m not going to cry because otherwise it’s won again, so I crank up Sia – Alive and pretend I can sing it well and loud like an X Factor finalist all the way home – hoping I don’t give myself a headache!

I’m not a negative person some would say quite the opposite, but when all you want to do is get better, and there is no cure or in my case no actual medical help it’s just so frustrating, you want just one person to get it or say let’s try something new and in this part of the country it seems this is not available. ….Anyway enough moaning, back to the School run as mentioned previously, so yesterday I actually thought I may win Mum of the year award from my 9 year old daughter, I found some hideous glittery heeled party shoes – in my eyes they were her idea of heaven, so I purchased.

Today whilst on the school run waiting in the car park for the gates to open, I remembered they were in the car, so I excitedly said to her OMG I have the best present for you!, she looked very excited I got them from the boot, and proudly presented them to her.

The actual look of what the hell have you brought me Mummy was was one where I actually wanted to laugh, but felt a tad dismayed at her disappointment, she said to me Mummy what are these? Do you actually want me to wear them? She at this point is still looking at them with astonishment and discust, I should of known from that point on how my day was going to map out….

Anyway lovelies hope your day is full of smiles.
Lots of Love ASIBTAF ❤️