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

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Glastonbury 2017 

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

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

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


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

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

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

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

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

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

Dear Kev,

Dear Kev
I said to you just this morning, I didn’t know what to blog about as I’m sure people are bored of me droning on about my illness, you said write it about something else for a change then.

So I thought I would write you this, we met properly way back in Sherborne in 1999, as you know I thought that you were a total tit, you approached me drunk, waving a carrier bag in your hand and a pint of Guinness in the other, you apologised for the look you were going for that day, but you had to buy this tshirt to replace the one you had spilt Guinness down.  Now this was not the first time we had met, we originally met in your home town in a pub, where back then you and your friends thought you were the top totty of town, and I was,  in your words “Gobby with big boobs” and not worth talking too! I can remember Lucy trying to get in your car, and you being very displeased at her actions as your car was your pride and joy, I used to watch you cruise around town in your white VW Convertible with your tunes banging out wishing I could be in it, only to be too young, too gobby but in my favour a good pair of breasts!

Fast forward a few years and we go back to that night in Sherborne, the tables had turnt, I am now worth talking too, but the feeling is not reciprocated, I thought you were too drunk, too old and too shy for me! But you didn’t give up, and we finally started our blossoming romance with a smooch or two in Pego (Pego those that know me will smile, and those that don’t, Pego was The Pegasus Club,our local small nightclub where the locals went on a Friday or Saturday night until 2am for a dance, stick to the floor, make new friends in the loo, drink and to check out the talent, many a relationship started at Pego, we all have many happy fun memories made in there, sad to think it’s now an empty boarded up shell.)

We went on many dates, and I just wasn’t sure, we were such opposites, you were quiet, shy and gentle, plus you drank way too much – which I later realised was as you said because you had no reason to stay at home, I was young loud, confident and out there, and a into Young farmers (the group rather than any random young male farmer!!)

You were established in life as a builder, you had a mortgage, a nice car, and I was just starting out, I was really scared of commitment as I had never really done so before, and just continued to mess you around  so you finally gave me an ultimatum – commit or go away and never come back, I chose the latter, I remember going home to Mum and Dad saying you had shouted that at me, crying my eyes out thinking you were such a knobhead, and them saying I shouldn’t see you again if you were like that.

6 months later I missed you, I missed you every darn day from that night you told me to go away, but I was stubborn (yes I know I still am), I missed you that much I would make my little brother come with me to stalk you in my Rover 25  poor Mike would be doing laps round town unaware we were actually following you around, then thankfully, out of the blue you text me on my birthday “Happy Birthday love Kev.”

A few nights later  I tried to contact you I rang, I text and nothing, just answerphone, I was with Sharon – whom I must say played a big part in this love story as she was generally there willing me on – we waited and waited –  finally you called me back, it was late but I didn’t care I had to see you and met you down moor lane bridge lol.

From that night onwards we were never apart, I guess I realised that you were a definate keeper, you may not be a man of many words, but the beautiful  words you have said I will treasure in my heart – for example on our wedding day you said –  you were the most beautiful person I had ever seen (and then you added I thought the wrong woman walked in haha)  I had to write that in as I was crying at the time and it made me laugh, which is what you always try to do, make me laugh,  we must be the only couple that cry with laughter because one time as your going off to work you stop, kiss me good bye and say I’m counting down the hours until I see you again!  any other woman would be find that a loving gesture but all we could do was laugh.

Now Kev not to say we haven’t been through some dark times we have, we have known what it’s like to hit rock bottom, for you to have no work, me have to borrow money from my parents to feed and cloth the girls, we had to sell my beautiful ring (un beknown to me my gorgeous parents brought it back and you paid them weekly for some time then presented it to me on my birthday – my heart burst that day I genuinely thought I would never see it again) to pay the bills.

We have argued, even got to a point where we wondered if we had future  – and we can’t change the past – I know We have both been in some bleak places you after losing your lovely Nan, me with the god awful depression after our second child was born, Losing my Grandad and recently with the IIH but you and my parents have got me through it, I am sorry that recently I told you to leave me, and that you should find someone better than me, someone who wasn’t ill, overweight and a pain in the arse, I thought you deserved a better life, one where your not always working to provide for us, because I cannot work, one where I’m not being whisked off to hospital – which I know crucifies you, you try and hide your feelings and until last September it made me think you didn’t care. (I know you do)

Last September you accompanied me to a Lumbar Puncture, you had never been with me before it was one of the good ones, I remember thinking you looked traumatised when you left me, but seemed ok the next day.

Two weeks later we had a night out, with our closest friends,  the alcohol made all of your true feelings come out –  everything came out, it upset me so much to see you broken, and how you said that Lumbar Puncture had made you realise you wished there was something you could do to make me better and that you generally feel helpless, do you know what Kev you do something to help, your there everyday when I open my eyes, you make me laugh, you are a fantastic Father to our girls,  you drive me crazy at times, your time spent in the bathroom makes me want to scream, when you forget things it drives me demented, when you can’t keep to the speed limits I literally want to karate chop you, but I want you to know I appreciate all you do, you do work so hard, we never go without and you know what else Kev in your own words like you said to me last week, Kirsty I do love you,  you know , always have done and always will- this is enough for me Kev your love, caring nature and sense of humour. 

So Kev when I’m being a complete bitch raving on about something that’s not really worth kicking off about – generally it’s when your driving my car, been in the bathroom for an hour or making me watch Sci- Fi, remember this –  we are team, and though I cry, whinge, can be hormonal, demand chocolate,  we have come through so so much and I thank you for being you, the other half me and I thank you for persevering all those years ago because you have made me who I am, wife, Mother family member and friend.

In the words of Whitney – And I will always love you.

All my love 

The Gobby one with the big boobs.

Embrace what makes you unique.

So apparently one in four British adults is obese, according to the UN Food and Agriculture Organisation, prompting fears that the UK has become the “fat man of Europe”.The UK has the highest level of obesity in Western Europe, ahead of countries such as France, Germany, Spain and Sweden, the report says.

Obesity levels in the UK have more than trebled in the last 30 years and, on current estimates, more than half the population could be obese by 2050.

Source: The State of Food and Agriculture 2013 (PDF, 2.44Mb), United Nations Food and Agricultural Organization.

I am that one in four person, I hold my hands up to it, I’m Kirsty and I’m obese, most of my adult years I have been overweight and struggled, though I have been fitter and healthier and happy with how I looked, how I felt, and naturally I long to get back to those days, I wasn’t a size 10 or anything but I was happy, I was a bit more body confident , throughout my adult years my body shape has changed frequently, and my husband has not once commented negatively, he loves me unconditionally, love handles and all.

Back then though it was a really dedicated journey to get to where I wanted to be, Most days  I was up and out of bed to the gym at 5.30am before Kev went to work, I had the best personal trainer you could ever ask for (thank you SB), she did my meal plans on a 6 weekly rota and she beasted me, but you know what I loved it!  The photo on the left was at Kevs 40th and on the right before I got ill in 2015 😏 I was strong not skinny lol. 

My personal weight issues go right back to secondary school, when you see this photo what do you see?

Hopefully like me you see a group of healthy and happy teenage girls? (I am back second from left) However people – ok boys at school didn’t see me like that, more often than not I would walk round with something stuck to my back saying ‘wide load’ or I would have derogatory comments from said boys. So from a young age I assumed I was “fat”, it didn’t matter how much my parents told me I was a normal healthy weight my brain was implanted with the fact I was overweight, I think this is so sad because looking back, I wasn’t I was “normal”.

I think there is such pressure in this day and age to achieve perfection, I have yet to meet one person (apologies if I have) who says to me – oh yes I’m so happy with my body image, it seems we are not,  we always wish for a change of something, I know I have said to friends who are tall, slender and stunning, how amazing they look, how I wish I had a figure like that.. to be told that they too are unhappy with their body, it would seem most of us have body insecurities, and it’s so sad but I totally understand, I have two daughters, and I tell them they are both beautiful and I encourage them to embrace their bodies, I try my best not to say I’m on a diet, I try to say that I’m healthy eating to help my head,  Sometimes one of them asks me what I think about her body shape, I have and always will tell her it’s just perfect like her. It’s a struggle enough for our children to grow up in this day and age with all that occurs plus threats of what society says we should look like via social media, all I wish is for all of our children to be happy with themselves, to love what they have, not too worry about body image, like I did.

I ask myself why do we feel so insecure  about our bodies, why do we wish we had bigger breasts, smaller bottom, or if we could be a stone lighter/ or even heavier and we all want that washboard stomach?
Historically, the ideal female body was strong and full-figured, (god I love this) as seen in icons such as Marilyn Monroe. But we have to remember every body shape is different, yet even as early as the 1800s, when painful, health-impairing corsets were used to accentuate the breasts, hips and buttocks, women were expected to strive for a specific ideal of beauty.

Below is taken from an article in the Daily Mail

Only 3% of women in the UK are totally happy with their body and 73% think about their size or shape every single day, a new survey has found. The survey of 5,000 women, commissioned by REAL magazine, found that 91% of women were unhappy with their hips and thighs, 77% were dissatisfied with their waist and 78% said they had cellulite. Three-quarters of British women were unhappy with their shape, 71% with their weight and six out of 10 said their body image made them feel depressed. Some 65% of those surveyed felt their life would improve considerably if they were happy with their body. 

Word has it, that we culminated our body image worries from catwalk models, tv, and the fad diets, that have seemed so appealing at the time because we too could lose 5 stone in 3 months if we drink a milkshake, (then you have the hard work of keeping it off) but the actual point here is that trying to create the ideal body shape shouldn’t be our ultimate aim anyway – we need to stop judging people by their looks in the first place.

Can we just take a second to remember that every single person is beautiful in their own way, if you think someone looks good tell them – think how you would feel from a positive comment, go on make someone’s day, they may look lovely, have a lovely smile,amazing make up, smell good or my personal fav – amazing shoes lol – tell them,  my Mum will be reading this thinking that I should practice what I write as her shoulder has been wet many a time from tears due to my own body insecurities.

For me it’s thought that my IIH will improve if I continue to lose weight, so far this month I’ve been back in hospital twice, I thought perhaps it was because I must of put on a lot of weight, as I hadn’t had weigh day for a while – no I had put on a pound from the last weigh day, I can honestly say I’m not happy with my appearance so yes my weight loss journey is for me to feel better mentally and physically.  As I’m sure most women (or men) can relate to this, I’m one of these people who gives it my all at the beginning – I’ve done slimming world, Gillian McKeith, Dukan, Herbalife, Cabbage soup,Slim fast, ADF,  you name it I’ve done it – I dedicate a few months too it then I remember just how much I love food,  cake, chocolate, fish and chips – the list is endless, my willpower sucks, I want to give massive shout out to people who do stick at it, I have one old school friend who has lost 10 stone and she totally has my upmost respect such willpower and determination!

But I’m saying it loud and clear I need to refocus make my body healthier and my mind positive, I have to do this for myself, Kev and my children, I almost feel selfish by not trying harder to lose weight as if its my fault my IIH is not improving because of it.  But it’s so hard when I can’t excercise like I did, I’ve tried HIIT, Kettlebells and classes during one of these times my  intercranial pressure raised so quickly I wasn’t sure how I was going to get home,  without droning and whinging too much (sorry) even walking at the moment is an effort with my new Diamox dosage so I am literally just taking each day as it comes.

So my weight loss journey continues – for a healthier and stronger me, I can dwell on the past Kirsty who was fit and healthier or I can focus on the future to a healthier Kirsty by busting IIHs arse and to everyone out there dieting, excercising, having surgery, those who are comfortable in their own skin or fighting an illness  – you are all amazing each and everyone of you,  may you too feel gorgeous and banish any insecurities, instill the positivity to our children also because we will stop worrying about our looks when society stops telling us that they’re all we’re worth. Let’s all of us focus on that first!

Have a lovely week

ASIBTAF 💖

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

United we stand – Motherhood

My week started with a trip to the Doctors, as I developed Sinusitis, my god it was so painful, my eyes streamed and the front of my face felt like it would explode, breathing through my nose was a no go, and in turn it seemed to play my head up, so I had the head pain from the sinusitis and my IHH, so following some fab nasal spray and codeine, it’s  finally today I’m feeling loads better but washed out.
Acupunture is going well, the session I had this week we decided against adding the electrodes, as lately the needles have not stayed in and flown out after a few seconds, so to ensure a good session we left it out. I have also got some small individual pads to use on myself every other day, they are good you pop them on the pressure points and every hour or so you gently apply pressure and massage the points on your hands and arms!

All over the country today we celebrate Mother’s Day, I feel truly blessed to have two beautiful daughters, age 12 and 10,  I never knew there could be love like the love I have for them, (they are however currently fighting over minecraft in the background) it some what ruins the ambiance I’m trying to create lol.

Our mother hood journey begins before us woman give birth, pregnancy tinkers with the very structure of our  brain,  After centuries of observing behavioral changes in new mothers, scientists are only recently beginning to definitively link the way a woman acts with what’s happening in their prefrontal cortex, midbrain, parietal lobes, and elsewhere. Grey matter becomes more concentrated. Activity increases in regions that control empathy, anxiety, and social interaction. On the most basic level, these changes, prompted by a flood of hormones during pregnancy and in the postpartum period, help attract a new mother to her baby. In other words, those maternal feelings of overwhelming love, fierce protectiveness, and constant worry (this lasts forever I think) begin with reactions in the brain. (The atlantic.com)  So you’re actually primed to form strong bonds with your child and your child is equally ready to connect with you, and I think you will all agree those bonds are unbreakable,  from the moment I gave birth, I was completely overwhelmed with love for my children, which turned into feeling overwhelmed that this was how much my Mum (and Dad) have loved me, no matter what I did- mood swings, school reports, boyfriend choices, car accidents (sorry) it was just something I couldn’t grasp until I experienced it as a mother myself, only mood swings so far in this household.

My mum is the best mum in the world. She’s my rock and she is without a doubt my superhero but without the cape, I am lucky to be able to say that my mum is my best friend and even though I tell her I love her every day, I still don’t think she quite understands how much she means to me, there is still the strongest bond possible, and always will be.

I know there are times when I open my mouth and my mother comes out,  however, when I think about the prospect of “turning into my mother” my thoughts are more hopeful than full of dread, as in, I hope there’s a chance that I will.

Motherhood makes us laugh, cry, tests our patience, we worry, we get scared, we feel proud, sometimes maybe ashamed, we endure changes to our bodies (10 years on I can’t get away with it’s baby weight lol)  but you know what we are all in this together, united we stand – us mothers we rock – and as the day draws to an end, take a moment to think of those who have lost their mother, those who have loved and lost, those who yearn to be a mother, and the parents who are both the mother and father  – We are all amazing remember totally amazing.

On a personal note I would like to thank the gorgeous women in my both of my girls lives who love, care and cherish them – we love you all today and every day.

Loads of ❤️ ASIBTAF 

Not all disabilities are visable…

Sorry I have been quiet… two words that don’t usually go together – Kirsty and Quiet lol, have had lots going on, trying to sort various things that life seems to be throwing at me.

Today I had to take my eldest daughter to an appointment near Southampton, having been there before, I hoped I would park nearby as I had done previously my head (Idiopathic Intercranial Hypertension)has been playing up yesterday and again today,  I won’t lie I’m shattered both physically and mentally.

Mum, Maisy and I get to the destination, pull up and park in the parking space which is on a road, with boxes provided so you know where to park, I put my blue badge in the window, get out of the car, walk a few steps and hear a voice shouting,

Is that a blue badge in the window?

All three of us turn around to see a man approximately in his 60s stood by the car,

I reply ‘yes it is’
He then looks at the three of us with disgust and says ‘ So which one of you exactly is the disabled one?’

Me like a startled schoolgirl – put my hand in the air and said ‘me’ he shakes his head at me with disbelief, in my head I act out the scenario of me screaming at him ‘sorry what is  your problem is it because I appear to have all my limbs or is it because I’m not in a wheelchair, do tell me why you feel the need to question and shout at us like we are committing a crime’ but of course I don’t I stand there with my hand in the air humiliated, red faced, at this point though this is where  my trusty side kick /lifetime protector steps in – Mum – she politely but firmly asks if he would like to see the badge and the photo, he just looks crossly at us and gestures to wave us on, she looks ready to explode.

Whilst this has been going on, another gentleman has witnessed all of this and kindly steps in, he shouts from across the road ‘excuse me sir, it’s a parking space anyone can park there, and it’s none of your business what is wrong with her, the  rude  man disappears and the kind gentleman shakes his head, apologising for the behaviour of the other man, ‘I can’t believe I just watched that, or that it happened!.  Mum thanked him for his kindness and we went on to the appointment.

The sad thing is this does happen, for me that was the second time, the first time was in a supermarket car park, an elderly lady was really angry with me, I was on my own, had just pulled into the space and she banged on the window shouting at me to let her look at the photo on the back of the badge, telling me I looked perfectly normal and to move as she needed to get to an appointment.

I may be nearly 40, I may look ok bar the eye bags, but not all disabilities are what you look like, how you act, or how you walk , and anyone who knows me well knows that I wouldn’t use that badge unless I really really had too, but to the person who shouted at me/us today, you will never how much you offend me, how your words echo in my head,  how you make me dread putting my badge on the dash board,  If you knew what I actually went through to have the badge, how embarrassed I felt at the assessment I had to attend, you might of thought before you shouted and disbelieved me, I hope you may think again before you shout at someone else!

This happens to so many people all over the country, and it shouldn’t,  our disabilities are all individual to us, and it’s so sad.

I feel let down by some of our society today , that my daughter who I teach to respect her elders, care for others had to witness that, but what I do know is she will grow up with the realisation that we are all different, disabilities come in all shapes and forms and she will hopefully  never judge.

It wasn’t the first time it happened, and I’m sure it won’t be the last – but let’s spread the word :-

Not all disabilities are visable ❤

Have a lovely 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.

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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 😄