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 ❤️