fear when some symptoms get worse and new ones appear.

[deborah27]

Some days are fear-filled simply because something is different, new or just plain weird. The temptation to search the web for answers to health problems is not always a good idea. I invariably rest a little easier hearing that someone else has same or similar problems and is still alive! Anyone else feel like this at times?

[moo196]

Doctor google !! Yes, tempting though it is , this is not a good way forward for most of us - if I had all of the things I ever looked up I wouldn't be here for sure and I do really try to not look at things online unless to confirm or investigate something already diagnosed.

For me it's better to go back to basics - to try to keep healthy - try to get as much exercise as possible - to eat as healthily as possible and to try to get some fresh air and time with friends to share ups and downs of life and a laugh here and there. I also try to remember that we are all human and our bodies are designed to mainly work well if treated properly. I also add some meditation to the mix if possible.

Take care and when the urge to google something perhaps try to do something else - write a letter/ do some breathing exercise / have a shower/ paint your nails ....

I'm good at preaching - but not always good at not looking either !

Take care

K

[deborah27 in reply to moo196]

Thanks K, yes 'freaked out' is not a good look! The problem for me at present is probably the same for lots of us, I'm still learning and trying to understand what is happening to me and what things mean; like will specifics get worse, will other things improve and how do I cope with pain,stiffness, tremors etc... I am not getting good care or answers from health centre and was told to just go home and get some 'wacky baccy'. I am exhausted and anxious because of docs attitude. He also said when I became a bit tearful that I am to' GET THAT ANXIETY DOWN AND GET THAT BLOOD PRESSURE DOWN!' or I'm going to have a stroke or a heart attack. but, he took my blood pressure whilst I was trying to speak and crying with frustration. I left really feeling a mess, just getting on with it as we do.

[Hidden in reply to deborah27]

My TBI was in 1989 and it took me over a decade - and happy pills - to reach the conclusion that the medics cannot provide this information because they simply do not know! However they think that if they admit this it will undermine our trust in them...

Despite the £M hi-tec scanners and computer analysis they simply do not have any window into the actual workings of the human brain; they can 'see' bleeding, shrinking, swelling. measure pressure, get printouts of electrical activity (brainwaves) and er that's it. This view was actually confirmed by my Respiratory Consultant who confessed that he had started out as a Neurologist and been disillusioned by how little they knew/could do and changed specialism!

What Neurologists need to do is revise the uncomfortable silence response and instead aim to empower the patient to accept that it is our own brain that is the star in all this! What I call the subconscious brain that runs the ship not the conscious thinking bit that is all we are aware of. When there is so much to do, to manage around the damage (or in my case insufficient breathing/oxygen) the subconscious brain has to dictate, even take over. This is not 'illness' but our brains coping with damage or impaired systems and doing a very good job.

Neuro-psychologists are actually who we need after the initial 'emergency' phase but it took me over two years on the waiting list to see one!

[sca2013 in reply to Hidden]

Very well said. I agree with you 100%. Thanks for posting this.

[cat3]

Firsty deborah, I suggest you find a less brusque GP. It's hard enough getting any form of aftercare, but when your own doctor acts as a barrier to the rest of the medical world it's demoralising and isolating.

I changed my GP (of 30 years) after my BI as she was dismissive (even disinterested) about my symptoms. I changed to another GP who immediately referred me to an endocrinologist, who later referred me on to a neuro-consultant who I still see.

Also, have you contacted the Headway helpline yet m'dear ? If not, please do ; they have a wealth of information and people to talk to who can offer reassurance and advice. 0808 800 2244

And please try to bear in mind that any brain injury has lasting effects with symptoms which are often too vague or peculiar to diagnose, so we rely on distraction of one sort or another to distance ourselves from them so far as possible. Has anyone ever suggested oxygen therapy Deborah ? xx

[jayne_h]

It is very strange for relatives to see new symptoms appear, but calling headway really helps with that, especially the really unnerving ones like confabulation.

[deborah27]

thankyou everyone for your comments, appreciate you all so much. xxxxxxxxxxxxxxxxx

[paxo05]

Hi Deborah.

Like someone once told me......" if tomor row was the same as today it would be called yesterday"......

Yeah I haven't got a clue what it means as well.

Basically we constantly change . We do different things that may agrivate our existing complaints in various ways. Also as you get a pain under control you then notice a lesser pain.

If it's a totally new symptom or problem then it's a visit to gps and not the Internet. The Internet is great when you know what's up with you but if not you may convince yourself you have a rare desease and have probably died a month ago.

But if you have multiple ailments then I think it is normal that the severity of each one cab alter day to day.

Hope you are ok...Oh and if you have a clue what the saying is all about please let me know as when I asked the person who told me it he said he didn't know..But it sounded good....

Pax x

[deborah27]

hi Pax, sounds a bit 'groundhog day'? lol. life can feel a bit like that. x