Ruby –  Crazy, Funny and Brave

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

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

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

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

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

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

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

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


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

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

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

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

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


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

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

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

Have a happy and healthy week.

ASIBTAF 💕

I get back up..

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

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

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

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

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

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

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

Massive thank you as always!

❤️ ASIBTAF xxx

Fight the fight 

So the inevitable happened, the thing that most sufferers of IIH, (Idiopathic Intercranial Hypertension) dread the absolute most – The Lumbar Puncture, I knew it was looming over me, high pressure hanging over my head like a huge dark grey cloud, I have tried to ignore it, pretend it wasn’t happening, carry on with life as normal, but I guess there is only so long you can pretend that your ok, I know I shouldn’t do it and I should of had my LP back late February but with all that was happening already in our life, it just wasn’t the right time.

Saturday evening my head hurt a bit, by the early hours it was unbearable, I tried paracetamol, ibuprofen and when I could take it no more – Codeine, none of which worked or touched the pain, this was by far the worst pain I had ever yet to encounter.

I made the phone call to my Mum at 7.45am,(she is my LP partner!!) by 9am I was in A and E,  I am always so dubious about having an LP, I know most of you will have read my last experience and it was not one that I ever want to repeat, it’s always at the back of my mind when I need one.

Due to the amount of pain I was in, I was given morphine and admitted, the first lot of meds didn’t help, thankfully though the second batch did, and I the pain subsided, I CANNOT fault the care and attention, I had during this admission, I knew that the LP would be coming at some point in the day, Kev and the children came in at 6ish, I had hoped that it may have been done by the time they were visiting.

Now anyone that knows us well, knows that you can rely on Ruby my youngest to brighten your day, she is a ray of sunshine, and can make you smile on your darkest of days – imagine Mum, Kev, Maisy and Ruby sat around my bed, I’m led in bed wishing I was at home when Rubes comes out with one of her I think potential best corkers. – 

Mummy what’s a condom?

Maisy looks like she is going to die of embarrassment, Kevs eyes are popping out of his head, Mums trying her best not to laugh, and I can’t believe my ears! 

Maisy says um excuse me but I was like way older than you when I found that out – I can’t actually believe you just asked that Ruby, can you believe her Mum? Urhhh god  she finishes by rolling her eyes .

I have to think quickly, and say Rubes I’m not sure this is the time or the place to discuss this in the detail that’s needed, but you use them to stop you having babies, she looks at me confused – where do you put it Mummy? Kev looks at me as if to say well you started to you need to finish it, again I say could we talk about this when we are all home together not in this ward, Ruby has that cheeky glint in her eye, looks at Kev and says Daddy have you used one or does Mummy? By now my poor Mum, is biting her lips off holding her laughter in, Maisy is looking at Ruby like she is going to strangle her, and Kev looks at me for back up,  Rubes I say, look they are used to help you if aren’t wanting to have babies yet, (there was no way I was adding STDs into the equation yet) and yes the Daddy generally uses them, again Maisy is looking at her sister with the look of please let the floor open and swallow me.

I feel I have to ask Ruby why she has asked me this question, to which 

I have Bruno Mars and Maisy to thank.. , well Mummy she says – Maisy heard a song on the radio on the way here,  Maisy said this song is so rude listen he is singing I’ve got a condom in ma hand can you believe that Dad? Kev adds well I did think it was wierd, now let me tell you the actual song lyrics 🙈

Hey, hey, hey

I got a condo in Manhattan

Baby girl, what’s hatnin’?

So slight misinterpretation by Maisy, but defiantly a moment that brought laughter and humour when it was needed by Ruby. 

My Lumbar Puncture  started at  9.10pm with my amazing Mum by my side, Kev and the girls in the day room, (they were not leaving until it was done) and it was done with kindness, continual consideration for my needs, lots of reassurance,  a Doctor that made me feel at ease even though he had worked at 13 hour shift, he was emphatic and carried out what he needed to do profesionally, the pressure was high, and sadly it took until 10.20pm to remove 26mls of fluid generally I have around 10mls so this was my best yet!

I am relieved it’s done, no idea really when the next one will be needed, but hopefully it will run as smoothly as that one, I feel ok, no low pressure headache, but I do feel washed out, and if I’m totally honest struggling this week, I’m going through that whole why me, why have I got to go through this, I feel guilty writing it or even thinking it when there are people fighting for their lives, or enduring painful cancer treatment, it’s not often I let it get to me, but I can’t see any light at the end of the tunnel, I can’t think one day this will be gone, there is no miracle cure, part of me feels like it’s won,  then theres the part of me who has the most amazing supportive husband, parents, family and friends right behind me supporting me all the way, their love pushing me, their positive words echoing in my mind. 

Maybe I have need to feel like this to regain my strength to start up the fight again, – well that’s what I’m telling my self and as I look at all that I have, I know I am truly blessed and ever grateful.

To all who remain by my side – I adore you all.

To everyone who wishes me well, and takes time to contact me – I am so grateful, it means so much.

And finally –  IIH you can’t keep a good girl down …..

Loads of ❤ ASIBTAF xxx

Tiredness and Mumming it! 

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a happy healthy week

ASIBTAF ❤

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.

img_1470
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 😄

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