Loneliness

[Purplesunshine123]

Does anyone else struggle with loneliness after a brain injury? I’d love to chat with people about everyday things, that are also feeling lonely.

[AndrewT]

Dear Purplesunshine123,

Hello I'm Andrew and I have ANCA Vasculitis, Heart Failure (thankfully Asymptomatic), Kidney Disease- I had a Transplant in July 2013- and, more recently, Diabetes. I also have, quite major, Brain Damage- a scan, of my Brain, 'Looks Like a Nebula'.

I'm Sixty Years Old, Sixty One in February, and live in Supported Living, on the East Coast (of England, that is)- so there is Always Someone Available (24/7). I have, on the whole, Good Neighbours- indeed one, or two, are now firm Friends. I see quite a bit, of my Mother, she lives about Three Miles away- thankfully she Drives, whereas I don't. I attend a number of Clubs/ Day Centres, during the week and, as a Confirmed Christian, attend Church as often as I can.

I have a Father, and Step Mother, around thirty miles from me- who I only see occasionally- and a Younger Sister (with 'children') whom I Never see,... it's Best that way.

I have a LOT of DVD's, CD's.... even some Cassettes. I like Jokes, especially 'Plays On Words', Poetry... Yes I Do write some myself.

So tell me about yourself, where do you live (just the area....I.e. Yorkshire)? What do you Do, with yourself, Do you have Family? What Sports do you like? OK No more Bamber Gascoigne!

I absolutely 'Love' your name Purplesunshine123 and, I'm guessing that you are a Girl- not that it 'Matters', one bit. Can I ask you how/ where you Got it please?

I'll close now, as it's getting (got) Late. Look Forward to Hearing, from you Purplesunshine123.

AndrewT

[Purplesunshine123 in reply to AndrewT]

hi andrewT yeh I’m a girl lol I’m from stoke on Trent how I got the name is really borin if I’m honest lol purple is my fave colour & sunshine was from a song that was playing at the time anyway thanku so much for your reply I’m 38 I av 3 children I’m stayin at a rehab centre atm for physio etc I rely on a powered wheelchair to get about coz I can no longer walk xx

[Tom94]

Definitely feel like I have missed out on so much due to my brain injury especially and apart from my family I don’t really have any real friends who understand what I have been through to talk to

[cat3 in reply to Tom94]

Tom, please read my reply to Purplesunshine ; everything in it could be for your eyes too ! Please come back and talk ... Cat x

[ftt1960]

Have you made contact with your local Headway group? The group members have all suffered sime sort of brain injury, so fully understand where you are coming from. I live my group and really look forward to attending every Tuesday.

[cat3]

I'm abbreviating your username (love it btw) to Ps !). I believe many of us here suffer with loneliness. In many cases it isn't necessarily from lack of contact with others ; more of an 'inner' loneliness which others can't alleviate. For me it's the loss of my old self.

My family are wonderful (son & daughter both with own families) -but I prefer to show them only my 'OK' side and, if I'm feeling down and they call in unexpectedly, I tell them I have a headache or haven't slept. They went through hell during the critical phase of my illness and their dad's fatal brain injury only 6 months later.

But for those who have no one around to spend time and thoughts (& laughs) with, this forum can help massively. I've made many friends here, some of whom I've met up with and really get me.

I hope you'll tell us some more about yourself Ps -your interests and how you spend your days. We accept one another here as equals and without judgement. Everyone has a different story but we really do empathise with, and care about, one another.

Hope to see you again soon.... Cat x

[Purplesunshine123 in reply to cat3]

hi Cat, thank you for your reply. I agree it is an inner loneliness - I’m in a care facility so surrounded by people, but it’s actually nice to talk to strangers about how I feel. I feel more comfortable with that.

I’m the same, I hide from my children how I am feeling. They’re too young to understand.

I spend my days doing word searches and crafts. I would also like to make friends with people on here. How do you spend your time?

PS x

[cat3 in reply to Purplesunshine123]

Hi Ps.. Most of my time is spent on chores and 'all year round' gardening. My garden is my little bit of heaven and still in full bloom (courtesy of climate change).

I have constant feathered friends feeding at the bird house and 'Rob', my tiny robin, waits as I clear up the leaves, or hoe the soil to reveal the odd worm. And my beautiful foxes come for their sausages and dog biscuits every evening when I call them.

I'm mostly a home bird now ; very different from my old life. But in very different ways, I can still be constructive and a bit creative (no longer drink or smoke so I splash my cash on plants.

Now dark evenings are about to hit (hate them) like you, I'll rely on reading, crosswords, word-searches etc. and maybe do some 'piecemeal' decorating. 🙄....... Xx

[Writeronstack]

Purplesunshine123, it is a great thing that you have made it to this forum. Please read Cat3's input - makes so much sense. Also AndrewT who so kindly gives us a picture of how he manages around his injury, and has started a 'get to know you' conversation. We are all grieving and lonely because we miss our former selves. Me included.

Please believe in the process and take the time to reply.

We all get what you are feeling to some extent - not exactly, because we are each differently injured - and we recover differently. But points of commonality really lift me up. And sometimes we get great quality help, just from updates on how we are. For example, I thought that I was the only one who has been to a supermarket with one thing to buy, bought it, and come home - without anything else - because I could not remember to look at our list. Not so. Someone else did it too. Now a bit better, she's gone up to five items. I've gone up to three. So good to see that there is a recovery road, and I am on it.

But I am remembering to actually look at my list, which means that I actually cooked one meal last night, and will be cooking another on Sunday lunchtime, with all the ingredients already in place, giving me time today and tomorrow to do one small thing a day.

One small thing a day is how I got here.

Reply to us - we could be that one small thing a day that you did !!

[Seamus1967]

HI Purplesunshine! I get lonely too, since my symptoms became obvious to me.

As others have said, I miss the person I was alot. But since finding Headway & this forum I'm sort of looking forward to finding out who I am now.

I have friends & neighbours but my symptoms only appeared just after I moved here, just as me was turning into the new me. So they only know a small part of "me", if that makes sense.

I find it difficult to build a friendship, remembering people's names, faces & details of conversations is very sporadic so at the moment I avoid it.

I live on my own & have since my child left home 6 years ago. I'd try to change that if I could. I miss a cuddle, companionship & someone to give me a nudge in the right direction.

All that sounds a bit depressing but I don't mean it to be. The way I look at it now is that the old me is in its last few breaths. There is a new me being born, and I will grow. When I'm a bit more sure of who I am now, all those lonely bits will work themselves out.

[Purplesunshine123]

Thank you all so so much for your replies, I really appreciate them and some really relate to me. It might take me a while to reply individually as I can struggle with attention, but I hope to get back to you all in time. Thank you.

[oldngrumpy]

I've had a Brain Injury now for forty three years. I had problems eighteen years ago with depression. I was sent to see a Psychologist who confirmed I had a Brain Injury.The above Injury has made me slow, caused apathy, but caused loneliness.

I struggle to make conversation, because of this isolation, cause loneliness.

My Brain Injury had missed out a massive chunk of my life. I cannot work, I have struggled so much holding down employment.

I could go on, and on......

[Skulls]

Good morning Purplesunshine123,

I am 64 and am suffering the effects of a hypoxic brain injury sustained when my heart stopped in 2018. I was down for fifteen minutes and so the oxygen starvation caused permanent damage. I have mobility issues and also problems with my arms and hands, lacking grip.

Like you, I feel lonely, sometimes terribly. My wife has rejected me and now lives with me only because she has to. She no longer loves me after 36 years of being hitched. This caused me to break my marriage vows and go searching for another female companion. One symptom of my brain injury is disinhibition which results in me falling in love far too readily. One might think that is a good thing but, when one’s love isn’t returned, or, as happened recently, one’s “lover” is a confidence trickster, it is a very damaging thing. I have to try to keep my feelings under control.

I don’t have a large family and most of my really close friends have passed away now. I have terribly one-sided conversations with the Mrs about things she really isn’t interested in. “I don’t care!” Is a phrase I hear a lot of.

One of the more hurtful ways a friend of 30+ years reacted to the new me was to reject me and refuse to read any of the Headway stuff I sent him, though I explained it would tell him why I had changed. We had so much in common and I miss the daily interaction.

I do wonder sometimes if I was returned to the wrong world. There has to be a reason why I joined this exclusive eight percent survivors’ club (that has risen to eleven now, after better CPR education) but the committee of souls who decided I was fit for return and repair didn’t tell me why I was coming back. I thought, wrongly, it was connected to a sequence of women from my wife to my mistress whom I love deeply but it has proven elusive. In the words of the song, “I still haven’t found what I’m looking for…”. Maybe, one day, my true mission will be revealed to me. I hope so. One of the terrible ways in which this disability has robbed me is the lack of purpose I feel. I often sit alone in my bedroom in tears and wonder what I am still doing alive. It is like torture. I gather that is not uncommon.

I told the assessor, the other day, how I plan my last journey over and over. I think it’d be fitting if my life ended where it began. I would close the circle and go “home” in more ways than one.

I have been looking forward to today - Boxing Day - as my godson is coming to visit and we get on very well. He is a manager in a local insurance company so a bright lad. Another task I must perform this week is to write an autobiographical letter to my eldest granddaughter who is seven and whom I haven’t seen or cuddled since she was a babe in arms. She is naturally curious about the grandpa from whom she has been kept separated by her parents. I am hopeful this additional unnecessary cruelty will be brought to an end soon as her mother said we would be kept apart till she was sixteen and I don’t know if I shall be alive at the age of 73. I was a good father and I wish to be a good grandpa - both of mine were long dead when I was born. I hope she finds news about her family history and its origin in Norfolk interesting.

I have waffled on now for so long, I shall close. This is another symptom of the damaged brain. My communication goes all around the houses…. Please do keep in touch if it’ll help you feel less lonely. I bought a teddy bear from a cardiac arrest charity with a motto on its tee shirt that applies to us both…. “You are not alone”. Remember that.

Yours, Skulls