Hi my name is Clare and my life seems to be in a state of random confusion. I was very ill with encephalitis in April of this year. I thankfully have made a good recovery but am left with what I can only describe as random holes in my life. I am unable to repair those holes and it is leaving me feeling very frustrated. Common sense tells me that in time I may recover and comeback to being closer to the person I once was, but very often I get extremely frustrated, angry and cry so much it can be embarrassing. It took me ages to set up my application to this sight hence my site name of CH56Twin which makes no sense. This is something prior to my illness I would have breezed through. I am looking forward to talking with people who understand that the subtle problems do matter and it is all about giving credence to the importance of this to the individual. I am one of the lucky ones, I know that, but there are days when I don't feel that lucky and it is very uncomfortable having once been a very confident person to feel so scared much of the time.

It is definitely a tonic to find this site. Thank you. Clare

15 Replies

  • Hello and welcome. You will find quite a few people on here that have gone through similar problems and hope you can join in with the knowledge sharing.

  • Thank you.

  • Hi Clare and welcome.

    I know you're probably already sick and tired of people saying it's early days and take baby steps. Unfortunately both things are true. It took me a year and a half just to be able to register with the forum.

    We are a varied bunch and if we can help with any problems questions or just being able to listen we will.

    Welcome again

    Love n hugs


  • Hi Clare, welcome.

    I too had viral encephalitis but it was in February of 2012.

    I still occasionally see improvements. I'm left with balance problems, severe fatigue, sight problems and other bits and pieces.

    Time is he watchword, and believe me I don't feel lucky sometimes but I know I am, it could have been so much worse. I was not expected to survive so I guess a very day is a bonus.

    Come back as and when you need to, we all understand all too well how hard it can be.

    Take care Janet xx

  • Hi Clare and welcome.

    Your user name sounds like a washing machine to me! Alot of us are familiar with having 'random holes in our lives.' I have holes in mine. If you were to pick one hole, what would it be? (Am thinking aloud here so I apologise if this makes no sense.) What would it look like? What colour would it be? What would it contain?

    Let's say, if, hypothetically, that particular hole can no longer contain what you would 'expect' it to contain what lovely beautiful soul filling thing could you pop in it instead? The thing about holes is that we are in charge of what we choose to put in them, and holes will accept and welcome anything joyful.

    See what the other guys say. They are all great here.

    Best wishes


  • Hiya and will find some like minded and friendly people who understand how frustrating this type of illness can be....especially if people say "but you look SO well!".

    But things can improve and the main thing is to try to push yourself to a small extent, but not too far (only you can judge where that may be on a time to time basis) and try to remain fairly positive and congratulate yourself for small achievements.

    I'll never be the same person I was before....but try to think of myself grow into a new improved version. :-)

  • Hello again and thank you to every-one who has responded and to those who have simply taken the time to read my first post. Bonfire thank you for making me laugh so much. User name sounds like a washing machine? That creased me up! I certainly felt as though I had been through a washing machine trying to think the user name up in the first place!

    Oh dear Bonfire the holes thing is a bit weird. I am visualizing a plastic set of holes rather like the plastic holes that surround and hold together beers or tinned drinks, only there are no beers in the holes- it is just the plastic and there are a lot more than the regular six pack. Plenty of holes but all different sizes,big- small- medium and every thing in between. All quite random really. Just like the content of my brain at the moment - random. At this moment there is nothing in these holes,but I like your ideas and what I will do is think of a colour and for the time being kind of massage and care for a few of these holes by putting a few soothing colours in them and see where that takes me. Thinking behind this is to try to stop stressing about these holes and to nurture them so when they/I feel suitably relaxed I will either let them go or fill them with something that means something to me.

    Hi Moo Your words are very wise and welcome and resonate with me- thank you. Now I will freely admit and on a public site stamping my feet like a toddler having a tantrum - I liked the person I was before and I want her back NOW! Ok now that's over ( this will probably to be repeated many times again) I defer to your comments and will go to bed tonight musing on the person I am to be and am in the process of developing - I still liked the old me - sorry. it is tough letting go.

    Thank you so very much you have all helped me feel less isolated tonight and it really is very much appreciated. I am looking forward to when I feel strong enough to support others as well as being able to have the occasional flipout when things are not going so well.

    Clare xx

  • Hi Clare

    My (current) diagnosis/es (ME + FND + brain aneurysm) mean I recognise those 'holes' all too well. To start with it felt like I fell down one big hole, of the vortex kind. Gradually though once past the first year or two things got better and some kind of loose structure to life began to reform.

    I still have lots of holes (job, friends, certain family members, energy, reliability, brain power, words quite often, to name but a few) but I have begun to see that the spaces in my life which these holes necessarily create are a gift. Unlike so many people I have time to sit, to think, to watch, to write, to pray - just having so much space to 'be' rather than to feel I have to try and 'do' has become something which I can now appreciate as a real blessing.

    Having said that, this is rather contrary to my nature as developed over the last 40 odd years, so all that's not to say the old control freak mentality doesn't rise up and rage at it all occasionally...even now, 6 years on.

    It is a journey, as they say. But you can't get off this bus....You do have extra windows in your life now through which to admire the view. And you are travelling at 40 rather than 70 mph. You will still get 'there', wherever 'there' is for today. Just more slowly and, if you make up your mind to be creative with it, with a far richer experience en route.

    Welcome to the slow lane, and to the crew here!! A more lovely bunch you could not wish for.

    Blessings xxx

  • Thank you Malatate - sunny day - think I will mooch a bit in the garden and reflect on the good things in life including meeting all these lovely people on this site and of course my flowers!

  • Hi Clare,

    How are the flowers? How are things with you?

    It seems to be cooling down now. I went and sat in a park amongst the cool trees.

    I hope everyone is doing ok.

  • Hi Bonfire

    Just another day - since not working all the days seem to melt into one another and I have forgotten the concept of weekend. Hubby works random days so my calender is now my trusty friend.

    I reckon the people who make post it notes will be able to retire in a year or so - my walls are covered in them! Still it is one of my better ideas to try to ensure I don't forget stuff. It actually works - if I don't take them off the wall cos I am not sure why I wrote the note in the first place.

    Many years ago my friends at work named me Bonkers Conkers. Probably because I didn't take my office job too seriously and I was always up for a laugh and not afraid to send myself up. They do say something like be careful what you wish for and in this case I would say be careful of what you allow people to think of you - it might come true one day! I am not sad about this but it does make me think (not too hard -it hurts) something about self prophecy. A bit muddled about my thinking process here but I hope you get the general gist.

    I am so delighted to have found this site as I can ramble on and nobody laughs at me (love it that people may laugh with me) or thinks I have truly lost the plot or tells me to pull myself together. Also I love to hear what other people have to say and am dipping my toes in by responding to one or two postings.

    Glad you enjoyed the trees and your simple words allowed me to escape for the moment along my own imaginary walk under the green How very lovely. Thankyou

    Clare x

  • Hi Clare,

    Welcome to this forum Lots said above which makes loads of sense The best of which is we are a lovely, knowledgable, friendly bunch.😃 Sometimes we just read, sometimes we comment/advice/offer help/guidance and sometimes we post

    Welcome again and I hope you've enjoyed your garden as I have today 🌼


  • Thanks Jo - the garden needs stuff doing but I really cannot be bothered at the moment as it just seems too big at the moment, so I just sat in it today and admired the long grass and the weeds and thought gosh thats me at the moment - a long weed. Rather elegant in a raggedy sort of way - just like me. Haha! Ithink I like long and raggedy. Clare

  • Hello everyone,

    I am finding that gardens or just being in nature under a tree is the answer to most if not all things! :)

  • Morning Clare and welcome to the friendliest forum on the planet. I truly hope you find some comfort in discussions here. Have a positive Tuesday. Nick Xx

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