Another day, another hospital appointment 

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

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

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

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

How wrong could I be to think that?

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

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

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


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

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

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

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

Lots of love ASIBTAF ❤️

Time spent with family and friends is time well spent.

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

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

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

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

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

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

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

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

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

www.thefmlystore.com

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

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

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

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

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

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

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

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

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


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

They are my reason to smile.

Big ❤️️ ASIBTAF 

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 ❤️

So here I am..

So  I’m sure, most new blog posts start with the same thing, my name is and I’m writing this because.

My blog name is a smile is better than a frown, this is because that’s my motto – smiling at someone whether they smile back will make you feel better, well it does me!

The things I adore in life are my husband, my two crazy daughters, my Mum, my Dad, my family, friends, hearing my kids laugh,shoes (so materialistic), Greece, green spaces, seaside, flowers, smiley people, excercise (when I can, more on that later) and lastly being with people.

Things I dislike are rude people, my weight, depression, anxiety, terminal illness, stigmas attached to weight or illnesses, the fact I adore food!, when my children argue, when my children have friend issues, money the stress it causes and lastly my worst dislike is having to live with the condition I.I.H.

IIH – Idiopathic Intercranial Hypertension, this bad boy joined me in 2014 officially! and I just can’t seem to shake him off, I could call him many words all very strong swear words..but today I will refrain, as I know in future the wording will be extreme.

So many people close to me have said you should blog about living with that, it would be interesting for people to learn about and really understand it, and mixed with your life could be an interesting read!

Without a doubt it’s been a journey already one at times I’ve wondered how the bloody hell I can continue on it, but I hoping this will help,  and if just one person learns more about it from reading my blog then I would be happy.

So what is it?

Idiopathic Intracranial Hypertension (IIH) is a neurological condition of unknown cause defined by increased intracranial pressure (ICP) around the brain without the presence of a brain tumour. IIH is also known by its earlier name: Benign Intracranial Hypertension (BIH) is little used because the condition can cause visual loss and therefore is not harmless or benign. You may also occasionally see it referred to as Pseudotumor Cerebri (PTC) because some sufferers present with signs and symptoms of a brain tumour despite no tumour being present, (‘pseudo’ meaning false).

But if I’m going to be blunt my body makes to much CSF fluid, it then crushes my brain and the back of my eyes, it’s like the worst bloody headache you have had in your life, double and triple it and on a pain scale your nearly there.

Now be reassured I’m not going to be droning on and wallowing in self pity, just blogging about life and the various experiences that go with having a family and IIH.

I look forward to this  writing journey and hope I at least have one reader! 🙏🏻

Big ❤️️ ASIBTAF x