At the end of my tether with myself.

[user1475881032]

NC for this as quite a lot of medical info. Long, sorry.

I have (among others, of course) 2 major issues in my daily life: my extreme clumsiness, and not having an absolute clue of the direction I'm going unless it's a familiar place - if I visit your home for the first time and you point me to the loo, I won't be able to come back to the living room without visiting accidentally your bedroom first.

They won't assess me for dyspraxia though, as they said the cause should be not linked to any other possible medical cause, and I had a neurosurgery as a child.

Basically at the age of 2 I still couldn't stand unaided, I had hip dysplasia and took 9 month to correct that but at the end of the treatment nothing was solved. Whilst trying to stand, I fell backwards, hit my head and went unconscious.
A CT scan was performed and they found a cyst in the cerebellum that hindered the spinal fluid from passing through and impacted on my balance. A peritoneal shunt was fitted and apparently the problem was solved. I started walking and doing everything, but I have never acquired the right skills at the right time (or at any time at all).

My co-ordination is awful, I bump into things, knock things, fall down often.

Now, I live an apparently normal life - a highly qualified sitting down office job, a DH and a DS. Diagnosed with PND and PNA after DS was born, after 8 years I'm still on 75 mg sertraline. On regular, predictable days I'm ok. When I have to do something new, or go somewhere new, my anxiety spikes to the roof and I become even clumsier.

At the moment I am away to a work conference and everything is so amplified. Needed to find my way through a new city and the uni campus, carry stuff, socialise, hang a poster to the panel, balance a plate and a glass while trying to eat, all of this killed me yesterday. So I was going back to the hotel with a colleague who was walking pretty fast, and fell down twice (I only had one glass of white wine).

I can't take this shit anymore, I want a diagnosis of anything so I can put a label on myself and adjust people's expectations accordingly, otherwise I'm always the careless silly one. I feel so down today, am actually crying while I type.

Where do I go from here?

Go easy on yourself, you got through a very tough day even though it was hard.
And you can explain yourself without a formal diagnosis. Due to a cyst as a child, I had brain surgery. Since then I have struggle with balance and coordination. It is similar to dyspraxia. People who would understand a formal diagnosis will understand that.
The medical lexicon is that your brain suffered an 'insult', the cyst and then the surgery, so you could always say, oh when I was a child my brain was insulted and it has never gotten over it. (Attempt at humour, sorry.)

Best of luck, and re the AD's if you have the time watch Georgia Ede's lecture at the PHC (Public Health Collaboration UK) on YouTube, she is a US psychiatrist and talks very intelligently about brain health and mental health.

Best wishes and good luck if the work trip is not over yet.

I agree, just tell people you had brain surgery and since then you have balance and coordination issues. There surely must be a diagnoses for that? What do the doctors call it?

For the doctors I have nothing. I recently had a full upper body CT scan for other reasons and they found out that the valve is broken but the cyst is deflated so technically I don’t have any evident problem. It would be easier to have something deposited on my HR file and refer to that rather than explaining my history to everyone and saying that no one found anything but still something is wrong 😭
I’ll definitely avoid any kind of alcohol tonight at the dinner. I feel so low

Could your work refer you to an occupational therapist? I'm wondering if they may be able to help suggest accomodations, therapies etc.

OP do you have medial insurance as a work benefit?

@Cleanthecoffeemachine where do I start for that? Line manager, HR or straight to our OT? I never mentioned anything to my LM (who is a nice guy btw) as I’m too self conscious

I have discounts on it but not as a straight benefit so never subscribed

I would think Line Manager or HR. Depends on your company structure I guess. But if your line manager is approachable then he should point you in the right direction.

Could I please suggest that you ask for an assessment by a neuropsychologist? I worked in a brain injury service and they are very good indeed at pinpointing subtle brain changes via a raft of tests. They might be able to provide you with a diagnosis and also strategies to make life easier for you.
They are few and far between on the NHS but if you have the money to get a private test it truly would help.

Makes sense, will try to talk to him once we are back to the office…

That sounds exactly the type of thing I would need! I could invest some money in it if GP refuses or waiting times are awful or nothing is in my area

Would a good OT assessment and support help? I think OTs are amazing and can really help.

Just to add, there are many medics who do not know the extent of a neuropsychologist's expertise or where to find one.

Your local Headway might be able to point you in the right direction. Try googling them.

Thanks @Pippatpip and @Mischance , they look both valid suggestions. I’ll try Headway to see if they can point me to a specialist for assessment, and an OT to maybe learn some techniques for daily life I haven’t thought of! Lots of good ideas on this thread to save for when I’m back home.

Survived the dinner 🎉

It's a bit out of left field but could you try a walking stick. It would make your movements more deliberate, slower and give one hand something to do. You can buy folding ones anyone asks nosily just say back issue.

Wouldn't it look even weirder if the movement of the legs and the stick were totally out of sync?

I had so many people staring at me when I had a meniscus tear and had to use two crutches, when I clearly wasn't able to... but maybe with one is different!

You have a brain injury.

that’s the simplest way to explain it to people.

(I have similar.)

there are specialist physios who can help with balance and other activities.

walking sticks are generally accepted as an indicator of injury and people don’t really stare at them. I have multiple kinds (including nhs crutches) and they are very very commonly used.

By the way it's totally liberating and validating being told that I have a brain injury
(or had an insult, or any word, but the reality is that something happened).

I grew up with my family repeating me that I am completely 'normal' and whatever I experience is my fault for not trying hard enough - so that's totally ingrained on me, hence my MH issues.

If this is true, then I could really inform people instead of frantically trying to appear 'normal'. I think I have to seek further medical opinions, but in the meantime a big big thank you to everyone here.

It's a prop to slow you down, make your actions more deliberate. Try it. People don't stare btw

"PEPE Mobility - Folding Walking Sticks for Women, Floral, Disabled, Adjustable Cane, Foldable, Ladies : Amazon.co.uk: Health & Personal Care" https://www.amazon.co.uk/gp/aw/d/B093LHNQRZ?psc=1&ref=ppxpopmobbasintitle

Ok I will, it doesn't cost much to try!

How do you manage with parenting op?

Do you drive OP?

Parenting ok, but the newborn stage was tough. I was absolutely terrified to pick him up as I had intrusive thoughts that I would drop him, so I would always ask for help to someone passing him to me when I was already sitting. It didn’t help that because of the surgery I had, I was recommended c-section in general anaesthesia - both pushing and the spinal could have been dangerous.
So I felt absolutely useless as a mother, hence the PND/PNA.
Now that he’s 8 we have a lovely relationship but the physical activities are delegated to DH!

Driving another thing - I was born in mainland Europe and came here in 2012 at 30, so needed to learn to drive on the left. It took me 2 months with an instructor just to get the hang of it… people cross the channel and drive on the other side without thinking about it and this makes me furious. But in 13 years I only had one accident and one speed awareness course, could have been worse!

The brain is a very sensitive organ with trillions of connections and it does not take much of an insult to create subtle physical changes in the brain which have a big impact on behaviour/abilities/thinking. You do not have to have had a major accident to have damage that interferes with daily life.

What a neuropsychologist does is to perform detailed tests that pinpoint where your brain is struggling. They often have excellent practical ideas as to how to get round these deficits.

On the basis of what you have said, I am very concerned that you drive and I’m surprised you and your husband feel comfortable with you driving your son