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 ūüôą

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

Brain problems

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

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

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

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

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

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

img_1470
So after reminding him of this, he still said maybe we need a second opinion, so I said in 6 months I would agree to this, but first let me lose some weight, (by the way I have lost more and now 8lbs down) then I would consider it, ¬†he agreed that would be a sensible idea, we scheduled another Lumbar Puncture for the end of Feb/beginning of March which he will do, I actually feel ok when he does them, so that didn’t fill me with too much dread!!

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

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