from consultants down to general practice speak about the symptoms we experience as if they are imagined, it causes psychiatric injury!

[deborah27]

the distress caused by constant, less than helpful dialogue. this seriously does cause a desperation and sadness that is often as difficult to deal with as the brain injury. is it any wonder that so often family and friends are unsupportive and dismissive when the so-called experts behave this way.

[Kirk5w7]

Hi Deborah, it is so difficult isn’t it? I still find I have to remind my husband I am not making it up, does he really think I enjoy this? Only yesterday we had words again , it doesnt help that I have good days when I’m almost normal. I don’t think he realises that these days are few and far between but when I get them I rush around making the most of them!

I find the medics easier to relate to, I insist they listen to me and mostly it’s fine, when they took me back in earlier this year because they suspected I was presenting with the same symptoms of encephalitis, I really did feel they were listening to me and luckily it wasn’t encephalitis but it was viral. My GP listens too, he knows I’m doing my best to get the n top of this.

So, I guess I’m lucky xx

But educating others isn’t easy.

Janet xxx

[cat3]

Couldn't agree more Deborah. My GP and I are at odds over my tiny dose of daily Diazepam. She believes they need to be stopped (taken them for 40 years & now 95% decreased). She's concerned I might become addicted and maybe counselling would be a better option ???

She admits to knowing nothing about brain injury and cannot grasp that, although it was originally prescribed for anxiety, the Diazepam now helps relieve the misery of limited mobility, constant tinnitus among many other intractable issues..........for which counselling would just be an added chore.

I have a fight on my hands but won't give up easily, especially as there are no viable alternatives being offered to minimise the symptoms. It's been hard finding a GP who practices common-sense.

Family are fine, but I've given up on friends as their expectations are just too great. I'm lucky being content with my own company, and this forum has been a godsend ! Love Cat xx

[deborah27 in reply to cat3]

the annoyance is that the more I try to defend myself and say things to prove I'm not crazy, the more anxious I appear. then the GP will say things like ' you need to deal with that anxiety...' I am in so much discomfort and the fatigue is severe, I have constant buzzing in my ears and head, my whole body is vibrating all of the time and when I get really beyond exhaustion the burning sensation and the 'crawling' sensation is overwhelming. I had neurology appointment on Thursday. he asked me my name, what year it is and what month it is. he gave me three words to remember, I remembered two. this was all in the space of fifteen minutes. I couldn't remember the words half an hour later and still don't, yet he said he isn't concerned. I can't remember where my classroom files are on a daily basis, can't remember when things are, deadlines, meetings, where things are at home, it's like confusion feeling... blurred thoughts. I wasn't at all like this before I was injured.

he said a really odd thing to me and I wept, he said that my symptoms are often seen in referrals who have been sexually abused as a child. I said that my illness and injury is well enough documented and as for anxiety, I have had little or no positive experience with medical professionals who have understanding or knowledge of brain injuries. I haven't felt too great since Thursday, just a bit down about how I've been treated. thank god for the forum. thanks too Cat. xx

[cat3 in reply to deborah27]

It's so much more difficult for you, with a career to manage. My recent blunder was today, sorting out Xmas present for wrapping and discovering I've bought duplicate (quite expensive) presents for 3 different people !

I now have to try to return the extra items (can't find any receipts of course) which is a pain. So if I had a job to manage too .............

............well I wouldn't still have it would I ?

I really sympathise Deborah. It's so damned unfair being wrongly diagnosed whilst being sneered at for daring to voice, what we know to be, the true explanation for our symptoms.

I thought I'd struck gold in finding a neuro consultant who REALLY listened & liaised with my GP, then in July he retired. So what's to follow is anyone's guess.

I hope you find someone as good Deborah ; someone who'll be around for a long time ! Meantime, I hope you can (once again) find the strength from SOME-where to pick yourself back up and keep chipping away.

Thinking of you m'dear............. Cat xx

[deborah27 in reply to cat3]

thankyou Cat, I will keep going as the alternative is dire. My job is too much for me, it's getting harder to 'wing' it and it's exhausting. the neurologist is booking me in for brain scan. I hope this doesn't sound wrong... I am praying that something shows up on the scan image, or I will be deemed to be nuts and no one will ever listen again. I have been told by Headway that sometimes injuries aren't obvious on these scans and that in no way diminishes the suffering and reality for the injured person. I just know that it would mean that I would be treated even worse. xx

[cat3 in reply to deborah27]

No, that just sounds like the result you need to survive in a very testing situation. 'Proof' isn't a lot to ask if it produces a sensible diagnosis and gives you something tangible for your employers to think about.

Good luck with the scan ; I've an equally warped wish to hear it shows visible damage !

Take care Deborah.............. Cat x

[Lizum]

I totally relate. I had pre-existing depression which my private medical provider said they won't cover. I saw a neurologist, paid for by the provider and his report linked my post concussion syndrome to my depression and referred me to a colleague who he said would definitely be able to help me with the fatigue etc. My providers won't pay for the treatment though because of the depression link.

[steve55]

deborah27 family you just say...........disability isnt always physical and the next part can be said to both families and so called profesionals...........if you havent had a brain injury, then you dont really know what youre talking about!!!!

steve

[Annie-2]

Here here -I have found this to be the biggest negative impact on my recovery!!

On a more positive note-happy Christmas everyone and thank you SO much for just being here!!! I am not sure what I would do without this site-the posts make me feel like there are people out there who really understand and I am not alone!!!

X x🌲