Encephalitis

[Chefkilly]

Hi my name is Gary and I suffer from the effects of encephalitis

Any help or advice is greatly welcomed

My wife and I have separated while support is put in place for her, our kids and me. But do not know if we will ever get back together??

[cat3]

Can you tell us more Gary. How and when did you contract Encephalis and what (apart from the fatigue) are your most troublesome symptoms ?

[Kirk5w7]

Hi Chefkilly there are not many of us posting on here that i am aware of who have survived encephalitis.

I am 6 years post my illness, i have all the same symptoms nearly all of us have, chronic fatigue balance problems etc.

I also lost peripheral vision to the right and have trouble with my body temperature control, one minute im too hot then im too cold.

Because of lack of mobility, i find i had great trouble in the early years moving my head around, i cannot run or do many gym type exercises, im confined to swimming and walking, i have gained 15 kilos in weight and am having real trouble shifting it.

I suffered dreadfully with pressure headaches which im hoping are under control with my newest medication. It has also helped with my skin sensitivity which has also been a problem.

Im sorry you are no longer together with your wife, hopefully this can be rectified, i know how difficult it is for family members of BI sufferers to cope.

Do tell us of your main concerns and ill try to ease your mind.

Janet xx

[RogerCMerriman in reply to Kirk5w7]

Seems less common, though I have a feeling that a number would classified as Learning disabled ie happens when young and fairly poor outcomes, I worked with a few until recently.

[Chefkilly]

Hi, thank you for your reply. Because my diagnosis was almost a year after I was first I’ll, and still waiting for rehab to fully kick in, I’m worried that I will never be able to improve.

And that in turn my wife will see no improvement in me.

The relationship with my kids has hit rock bottom and I do not know how to repair it fully as the support we were promised as not happened yet!

Thank you.

Gary

[randomphantoms]

Hi Gary and welcome.

If you are up for it look on the @headway.org.uk website and download the leaflets.

Not only can you find things to do to help you improve but sharing them with your family might help them understand a little better.

Find out if there is a headway group near you and go along.

And give headway a ring on Monday 0808 8002244 (office hours).

Glad you have found us.

[Chefkilly]

Thank you for

Your reply, I have been in contact with headway, and they have been amazing with what they have done in a few weeks, so much more

From them than I have had from the NHS in 18 months !

[cat3]

So glad you've found us Gary and also been in contact with the helpline. A year isn't a long time for getting the hang of brain injury. Learning coping strategies and letting go of the past takes time and courage ; just a shame you've no family support, though I appreciate it's complicated.

Sorry it's been so disruptive family-wise and I'm sure you'll be struggling with morale, but were always here for back up m'love.............. x

[Lisamarie27]

Hi Gary I’ve had encephalitis four times and it is so hard, my last one was last April so I’m still recovering. I’m here if you want to chat Lisa xx