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 😄

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Eye Eye..

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

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

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

Yesterday I had to attend an IIH related hospital appointment. 

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

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


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

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

Hope you all have had a lovely week.

Love ASIBTAF ❤️

Grief is a suitcase

It has been said –  Grief is a suitcase that sits at the bottom of your bed, and no matter what, without failure, you have to pick it up every day, take it with you. Some days it will be filled with rocks, and you don’t think you can carry it, and then other days, light as a feather.

When my Nan passed away during my teenage years, I thought then I knew what grief really was, I was young, but old enough to know in my mind that I was sad, devastated, and going to miss her forever, I remember thinking I would never stop crying,  that life wouldn’t be the same without her. I can remember hearing family members cry and thinking this is what heartbroken really meant.

When you are younger I think you have some understanding of death and grief, teenagers grieve differently than adults. moving in and out of strong emotions. They are often not able to express in words, how they are feeling or what they need, I think looking back I was quite selfish, probably carried on with my life not taking into account the feeling of others, now I’m older and I think what my own mother must of gone through I wish that I could of been more supportive.

This week marked the anniversary of my Grandfathers death in 2011, 


As I said before I thought I had already experienced grief for someone I loved deeply, when nan (his wife) passed away, but nothing in the world could of prepared me for the feeling of loss, emptiness and sadness I felt when he died.

Grandad was one of my best friends, one of my most favourite humans, I spent a lot of time with him throughout my life, once or twice a week, more if I was passing through his village, he knew nearly every thing there was to know about me, he was a massive part of our lives, he was so close to my Mum and Aunty who were heavily involved in most aspects of his life, we knew he adored us all, and he knew we thought the same of him. 

Grief hits you in many ways, I literally felt I would never be able to say his name and not cry ever again, I would yearn just to talk to him, a constant feeling in the pit of my stomach because I couldn’t , I think it was the hardest thing I have ever experienced in my life, it’s difficult to understand why these things happen, why we have to experience such pain, why those we adore can be here one day then gone the next.

Grief is a journey, being a journey unique to each one of us, I found grief  to me was a raw wound, bitterness, anger and denial, it’s the realisation that you will never hear, see or speak to that person again. I am blessed I have so many  treasured memories with him, Mum and I often reminisce about him with great affection some days you can laugh, others your heart hurts because you still miss him so much and tears fill in your eyes,there are so many things in day to day life that remind us of him, his love for really crusty fresh loaves from a baker, If I see a really burnt one I think how much he would of  loved it, and custard creams, the hundreds of custard creams I’m must of shared with him, We all have our many memories of those we have loved and lost.   I know my grief at times overwhelmed me, I couldn’t control it I would just go with it, I was so lucky I was able to support my mum, the family and they did me, each one of us understanding what the other was feeling and going through. I wanted to ensure I was there for my Mum supporting her through it, as we just ‘Got’ what the other was feeling, and still do.

There is no doubt, there is a massive hole left by him in our lives now that he is no longer in it, he was a great man, our journey still continues people say time is a healer, I guess this is true, I treasure the times we had together, I am thankful for all he taught me,  blessed to have known such an amazing man, most of all I’m thankful for the relationship we had, he knew I adored him, I really did, along with my parents he made me the person I am today. 

The pain of losing someone doesn’t go away, as painful as the process is, grief will guide you eventually back to the normality of life, you do survive it, sanity intact, and eventually go on to reclaim your life and enjoyment  despite your loss.

As yet another anniversary of his death passes, I think to myself this is just a date, a date that my family suffered a great a loss, because what followed on from that day ensured that we remembered, loved and missed him daily,  and the date just signified he had gone.

Here are a few lines from David Hawkins – He is gone, which I used when he died, I often read it, as I feel it says what I need at times.

You can shed tears that he is gone,

or you can smile because he lived,

You can close your eyes and pray that he will come back, 

Or you can open your eyes and see all that he has left.

 Your heart can be empty because you can’t see him 

Or you can be full of the love that you shared

And we did share a lot of love.

Remember to share your love, as you never know what’s around the corner, treasure all and who you have.

Loads of ❤️ ASIBTAF 

Blogger recognition award!

https://msnubutterflies.wordpress.com/2017/01/17/blogger-recognition-award/
I would like to say a massive thank you to the very kind Shannon who kindly nominated me  last week for the Blogger Recognition Award.  Sorry for the delay but I’m still finding my feet on word press!

I have enjoyed reading Shannon’s blog, someone else who understands the day to day life of Chronic illness.

Please visit her blog on 

https://msnubutterflies.wordpress.com
I started this blog to share life’s tribulations with IIH Idiopathic Intercranial Hypertension, to raise an awareness, sharing my journey through illness, motherhood and life!

My two pieces of advice to new bloggers

  1. Don’t be scared to share your thoughts.
  2. Comment if you enjoy what you have read on someone’s blog! (I love to read what people thought)

Rules:

Thank the blogger who nominated you and provide a link to their blog.
Write a post to show your award.

Give a brief story of how your blog started.

Give two pieces of advice to new bloggers

Select other bloggers you want to give this award to.

Comment on each blog to let them know you have nominated them and provide a link to the post you created.

I would like to pass on this award too 

https://tlohuis.wordpress.com

https://raisingamancub.wordpress.com/2017/01/05/living-with-a-man/
 

 

Meet and Greet 21/1/17

Meet and Greet: 1/21/17Originally posted on Dream Big, Dream Often:  

 It’s the Meet and Greet weekend everyone!!  Strap on your party shoes and join the fun!   Ok so here are the rules: Leave a link to your page or post in the comments of this post. Reblog this post.  It helps you, it helps me, it…

market, blogs, research, friends, blogger, games, internet, marketing, blogging, friendship

https://dreambigdreamoften.co

https://invisibleillnessesblog.wordpress.com

Weigh day happiness


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

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

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

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

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

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

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

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

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

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

I’m 6.5 pounds down…

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

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

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

Off to find a lovely apple…..

Have a lovely evening

Lots of love ASIBTAF ❤

Pain in the back – Lumbar Puncture day!

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

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

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

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

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

This article is from the Daily Mail:-

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

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

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

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

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

Quick explanation on a LP, from the NHS website.

The procedure:-

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s costs nothing to do so.

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

Remember kindness makes a difference.

I’m 3 days post lumbar puncture, still suffering slightly with a low pressure headache, but my pain, is mainly radiating from my back.  I had my ‘new patient’ appointment with my new GP first thing yesterday, which went really well, the Dr was really supportive and said though she didn’t know much about IIH, she would try her best to support me medically through my journey,  she said we would work together to see what works, which was really reassuring (positivity yay)she thinks a nerve may be damaged in my back temporarily due to LP, but should heal up soon, am hoping so as I feel like I’m walking like a duck!!


Later that morning, my brother and I attended the funeral of a friend of our family, she was well known, much liked/loved by so many, she was a very special lady, back when I was 15 she employed me every Saturday to do odd jobs, enabling me to pay for the School Ski trip, I would cycle ten minutes up the road to her house spend two hours with her, then two hours with house opposite, they were happy times each lady a wealth of knowledge (there were 4) , when I was with her, we would cook, garden and clean together, her cooking was lovely, one of my favourite memories is making her well known sausage rolls,  best bit for me was sampling! She would tell me about her childhood, her work career and I remember thinking how much she must of had to come through,but had that motivated her to  be all that she became? she was born in Germany and, because her grand mother was Jewish, her Austrian/German parents sent her to England for her own safety in 1939, hoping that one day they would all be reunited, sadly though her mother died in 1943, and her poor father was in a concentration camp,  she arrived on the kinder-transport, and was then homed with Dr Barnados, where she was educated and found work, a friend of her employer at the time, helped her to pursue her career in nursing, she trained in Southend General Hospital onto Charing Cross, from here she went to the Strand, it was here that she was the ENT Sister in charge of three wards and operating theatre for 16 years, she moved to the village I lived most of my life in, in 1972, where she eventually became Matron until 1986 in a local town hospital. I learnt yesterday that she had no memory whatsoever of  the time she was put on the kinder-transport at the tender age of 11 and sent away, I look at my eldest thinking she is not long past that age,  how heartbreaking for both parties that must of been,  that must of been why she had erased it from her memory, but did that make her the kind, caring lady she became? 

It was said yesterday

People will remember her totally dedicated care, not only of her patients, but of everyone she knew.

This is so true, she did care for us all in different ways, how wonderful to be remembered for being kind and caring.  I will always remember her, may she rest in peace.

If one person remembered me for an act of kindness how fulfilling would that be.. the reasons for being kind are innumerable

  • Being kind feels good
  • Kindness broadens our perspective
  • Kindness helps people feel respected and less alone
  • Kindness softens our heart
  • Your children will follow by example (thanks Mum and Dad)
  • People will want to spend time you
  • Kindness is free


I myself have recieved so many acts of kindness in the past 48 hours (if the truth is known every single day) , from my beautiful family, wonderful parents, brother, fabulous friends, each one daily checking on me with texts, messages, emails, cooking and waiting on me (thank you Mum,Dad and hubby)

A friend bringing me flowers ‘to brighten my day’


To people speaking to me as they walk to work with a cheery hi, then another friend stopping and asking if I needed a lift because she knew I was in pain and it was raining.

All of these small acts of kindness mean so much, since becoming unwell  I am grateful for each and every one I receive.

Think how happy a day can be when kindness touches it x
Lots of ❤️ ASIBTAF 

 Foggy Saturday 

This is the view from my window today, no glorious sunshine, no chilly frost, just this foggy dismal day, it’s a day that makes you want to snuggle up on the sofa  with a blanket, watch a film and eat rubbish, the skies are grey and dismal not dissimilar to how my eyebags are looking at the moment.

Following on from the Acupuncture I had on Thursday, I have been absolutely wiped out, I’m not sure if it’s coincidence that I may possibly need a Lumbar Puncture or it’s as Vicky the Physiotherapist said I could feel quite tired after, tired is an understatement, I feel like I could sleep forever! I think I need to investigate whether I should feel this tired for this long, but as I say it could be a culmination of things, either way I have my STRONG top on today and that is the focus word of the day!


https://www.thefmlystore.com/collections/women/products/black-oversized-strong-tee
I hate days like this when it’s dark and murky, it literally makes my crave crappy foods to eat why is this? I blame the weather but I think I feel like this daily lol, however in my quest to regain my life and possibly reduce IIH symptoms, I am 5 days into my new healthy eating plan and apart from today of wanting to eat anything in the cuboards, it’s gone well.

I’m finding it hard to comprehend that it’s ok to eat 7 yes 7 starchy foods in my day, though the portions are small I feel paranoid at eating so much! Thinking that surely I am doing it wrong throughout the day, you may remember a few blogs back, I ended up at a weight management clinic, this is the diet they have asked me to follow.

My day consists of the usual 5 mandatory portions of fruit and vegetables, this I have always done with ease, then to the 7 starchy portions so this is bread, rice, cereals, potatoes, cous cous, bagels, crumpets etc, well at 11am when I’m tucking into my low fat bagel I have such guilt thinking how on earth will this work when I have more starchy things to eat? We then have to fit in 3 portions of milk and dairy, my daily soya milk takes up one of these, then I usually have a yogurt or a matchbox size piece of cheese!! 2 portions of any sources of protein  meat quorn etc, 2 portions of spreading fats, oils, dressings, sauces and finally you can have a 100kcal snack which may be high fat/high sugar foods or even alcohol.

The 100kcal snack today is not going to cover the cakes, biscuits, or king size dairy milk I want to sink my teeth into, today my mantra STRONG is coming into play, I will NOT eat any of these things, because

  • I want to become healthier
  • I DO NOT need Chocolate (quietly sobs)
  • I  want to get better
  • I will stay away from the kitchen
  • I can do this (still sobbing) lol

Seriously though I know to get anywhere I have to stay strong and motivated, today I’m probably just overtired, and it’s kicking in that I’m not eating the lovely (crap) foods I was over the festive period, where I went with the motto eat drink and be merry or in my case eat eat and be merry!!!

I will be posting updates on how the healthy eating plan goes, the scales have been removed by my Mum from this house, so I can’t scale hop like I usually do, this in itself is an addiction I have had to beat, going cold turkey from the scales, so with that and sugar withdrawal it’s all going on!

https://www.bhf.org.uk/publications/healthy-eating-and-drinking/facts-not-fads—your-simple-guide-to-healthy-weight-loss
This is the link for those of you interested in my healthy eating plan, fingers crossed for me it works!

Hope your day is a happy and healthy one.
❤ ASIBTAF xxxxxx

My start of January positivity!

Today was my first hospital appointment of the year, taking on board that my new approach is to attend them with more positivity and make a more concerted effort to leave my negativity in the past.

My side kick for the day was my oldest (still on her school holidays), she is a brilliant companion, helping me around, making sure we have a toilet stop before we head to where I need to be, “you don’t want to be needing it when you are in there, do you Mummy?” As she ushers me in, she is like my second mother so caring and considerate of all my needs lol.
I am under the illusion that I am heading to the physiotherapist department for some help with my balance, think I have touched before on my balance and spatial awareness e.g judging depth of stairs, steps, curbs, or the floor feeling like a swimming pool, but mainly when my pressure is high I tend to become really unsteady on my feet, wobble off balance, vear to the right, unfortunately for me I can look drunk, without a touch of alcohol passing my lips!

When I say under the illusion, it is what I was told when they rang me to book me in, I was taken for my intial new patient consultation, and Vicky the physiotherapist explained she would be helping me all she could to reduce my IIH pain and to see what could be done for my balance, she was lovely, perhaps this was my positivity kicking in but I felt like finally someone was doing something that could work or reduce the symptoms at least, but when she pulled the Acupuncture word out the bag, I couldn’t of been more happier, back last November I was lucky enough to meet up with someone else with IIH, someone who understood my daily grind, she was also able to enlighten me with things that helped her, and Acupuncture was one of those things, so I mentioned this to my Neurologist who said the waiting list was around a year and to expect a long wait, he said he would refer me, so you can imagine my excitement when Vicky said she would be doing it today!

Vicky told me that one  of the great advantages of traditional Chinese medicine is that it has an entirely different theoretical framework based on the flow of energy, or ‘qi’. It is possible that she may see signs of disruption to the flow of energy or blockages which may, from a Chinese perspective, be responsible for a build up of pressure at the top of the body in the head. Some of the classifications in Chinese medicine thought may appear simplistic but often accord with how people experience their conditions – ‘feel like I’m sinking inside’, ‘feel like my head is about to explode’, and so on. The clear understanding of the various flows and how they are disrupted can often point to systemic problems which treatment may help to alleviate.

As the needle came out of the packet, my loyal side kick looked utterly horrified grabbing my hand, caressing it and telling me it will be alright, I immediately reassured her that I would be fine, it doesn’t hurt (I hoped) and that it was to help my head, Vicky too assured her it was nothing to be alarmed about, but she didn’t have to watch, but there was no moving her, she was there, that was that lol.


The needles were placed firstly in my head, I wouldn’t say it was painless but definitely nothing to complain about.


Hands next, I felt quite a dull feeling from the needle in them, strange sensation.


Lastly feet, the left foot I felt nothing really but definitely an odd sensation in the right.


Apparently the needle positioning and how many etc will change with each appointment. But for today that’s where they were, they were left in, all whilst lovely daughter was reassuringly rubbing a part of me she could find that didn’t have a needle in, looking quite repulsed, even more so when I asked her to be my photographer!

Vicky told me I would possibly feel more tired than usual later in the day, but to go with it, and it may reduce my pain slightly.

I can’t say yes I feel amazing, but I can say that my right eye doesn’t feel as sore and pressured as it did previously this morning,  so small positive steps, yay.

I’m back there next week for longer, so will you keep you posted on how it goes.

Do you remember the floating turtle that my oldest was demanding in a previous blog, So Kev and I said she would need to earn the money to buy it, as we had spent enough over Christmas, using her initiative she asked Kevs mum if she had any jobs that needed doing, this resulted in her spending the day with Nanny on Tuesday and earning the money.

So on the way back from the hospital, we popped into Argos and made a purchase.


Some of you may be observant enough to notice that the turtle (the turtle that was the most cutest thing on the planet and she needed it because it was in the sale)IS NOT A TURTLE ITS A 🐸 FROG.

After seeing that the frog was £9.99, cheaper than the turtle, the frog was by far cuter than the turtle in her eyes, I personally think the excitement that she would have £5.00 left definitely swung it for her and the frog is now the lastest addition to the Andrews household!

I think she loves it that bit more knowing she worked hard for that money, and her excitement was a lovely end to our morning out!

  • Day 1 of this years Hospital Appointments ✅ 
  • Day 3 of healthy eating ✅ 
  • Positive vibes ✅ 
  • Frog 🐸 toy ✅ 

I hope your day was a happy and healthy one!

Big ❤ ASIBTAF xx