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 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 ❤️


2 thoughts on “So today is already one of those days ….

  1. Unless you have been through IIH you have no idea of how awful it is for the sufferer or their family.
    It is an awful life changing illness. You are amazing to stay positive and I know fellow sufferers will be able to identify with what you are going through.
    Top marks for writing appointments down !!


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