Struggling..

[Coffeegal]

Is anybody else having trouble with their mood/behaviour? As the months pass and I become increasingly isolated I think my behaviour is beginning to deteriorate. I had moved up to this county three years ago and I’m quite far away (400 miles) from all my friends. It is very difficult to make new friends when you have ABI and I find that the friends I thought I had made, have now drifted away. I tried to keep in touch on the phone during lockdown but as it eased I increasingly heard they were meeting for a coffee in each other’s gardens but I was never on the list. I’ve had to resign from the photography group because they’ve voted to continue with Zoom meetings only and I just can’t cope with that as I have very poor visual recognition and to concentrate on a screen for two hours... Now we are going back to more restrictions and I’m feeling mad at everything. The two classes I had signed up for, with social distancing, have said they will now have to review the situation. I feel like my brain is melting 🙈

[cat3]

Hi Coffeegal. I talk by phone with my daughter most days and we've both, only recently, started saying how flat and unmotivated we're feeling these past couple of weeks. We've coped fine so far with Covid. I've isolated for the past 6 months apart from doing jobs in her garden whilst she's indoors working from home ; a garden visit from my son on Fridays, and a visit to Tesco once every 10 days.

So I'm guessing that many of us have been stoically adhering to the lockdown rules, waiting for the 'All clear' and now the inevitable resurgence has reared it's head (hardly surprising considering the behaviour from some elements, and contradictions from government) the future has started to look pretty damned weird and claustrophobic.

Come and talk here m'love with friends who know what it's like to feel abandoned by mainstream, and by fair-weather folk. This forum has been my lifeline for many years now since a SAH in 2011. We compare notes, laugh and cry together ; with the odd bit of humour here and there. 😑

Can I ask what treatment you had for your ICH ; was the bleed coiled ? I'm just flabbergasted that you discharged yourself after 8 days ! (superwoman or what ?)

See you later C-gal......

Cat x

[Coffeegal in reply to cat3]

Hi Cat, your lovely reply brought a lump to my throat. The ambulance driver and the hospital consultant all told me I was fine. I didn’t know they had already told my youngest son, say your goodbye she’s not going to last the day.. when I was disobliging and still there by teatime they decided to do a blue light dash to the neuro Centre. They put up a drip of something and my blood pressure bottomed out and I could hear them saying with the crash trolley..can you still hear us.. in my head I was thinking what, of course I can still hear you! My son had the courage to come in the ambulance and he never told his brother what they had said. He’s only spoken about it once and said don’t ever ask me about that again. I made it to a second day and then a third and on day six I put on a bit of lipgloss. The Consultant doing the rounds looked in and the ward sister said, yes, that’s her! I’ve been a bit of a curiosity ever since. In normal circumstances I work so hard every day just to manage the ordinary bits but yes, abandoned by mainstream and by fair-weather folk, is harsh but true. I know I must be hard work and people say they don’t mind reminding you who they are but gradually I just don’t ‘see’ them anymore. They say strange things like, oh yes I’m awful with faces, but they have no idea what it is like not to recognise your grandchildren and sometimes even your sons. (I joined the wrong family twice on holiday a couple of years ago LOL!) I was fine until yesterday i.e. I forget every few days… but I went for my yearly blood test and the nurse asked me how I was doing in lockdown and suddenly the enormity of it all hit me... I’ll forget again in a few days.. x

[Coffeegal in reply to cat3]

Hi Cat, I spoke with my son and I have made a plan, my plan, my control. I am going to get a taxi to their new place tomorrow morning and back again tomorrow afternoon before it gets dark. I have spoken to the taxi company and told him the route I want to take because of my balance problems (Straight roads, not cross country!) and sorted out the payment in advance. The taxi company have put in Perspex screens and wipe down everything with anti-bac between each passenger! So, a nice day in the countryside in glorious weather. I hope you’re having a great weekend.. x

[cat3 in reply to Coffeegal]

That's the way to take control m'love-------dynamic and decisive !

Hope it's a perfect day for you tomorrow..... x

[swedishblue11]

& here I was thinking, is it me? Nope...we're all behind you Coffeegal on your feelings of isolation and weirdness. Lockdown is wearing thin but its not going to overwhelm or beat me, of that I'm certain. I'm sensitive to the effects of seasonal changes now (coming in to Autumn), feeling more unmotivated....dreading the shorter days. Sleeping is a bit "hit and miss", and is taken in two halves of the night with a cuppa tea in the middle around 3 am. I was given circadin (melatonin), and although good at the start, I prefer not to feel heavy and groggy during the day.

I have just read your "intro" page - not too bad for someone with a "moribund" diagnosis! I did the same after two appalling weeks of care. I remember one particular nurse telling me I had a v low pain threshold when I suffered extremely painful vasospams!! I knew I was on a "hiding to nothing" to remain there longer. Indeed, I also needed to discharge myself a second time after some abdo surgery after enduring another sadistic nurse encounter. I'm obviously not a good patient!

Well that was a ramble.....

I'm interested to know where did you move from and go to? I live in the south but would love to move to N Scotland. I'm quite liking the sound of the Shetlands at the moment!

[Coffeegal in reply to swedishblue11]

Hi, I agree with you about the strange times. I was fine in total lockdown because it meant everybody else was the same as me...isolated. I moved from the south to the east of England and a city to a market town. I have trouble imprinting new information so I am always lost.

I love the sunny days of the autumn and cosying in to the darker evenings and the run-up to Christmas. January February and March are always bad as I hate the cold and the dark mornings. Do you have some indoor hobbies? I enjoy reading, in the moment, but soon forget what I have read and I am also doing some tapestry style thing of a wolf for my other son. I want to surprise him with it but I teased him with a photo of the tips of his ears and he said was it Madonna, fallen over, so now it has become known as the fallen Madonna with the big boobies, as in ‘Allo ‘Allo!

I get overtired but not in a body weary way. That must be very frustrating for you. I have an underactive tyroid and I know before that was diagnosed I couldn’t get out of bed on the sunniest of days I would be going back to bed by 9 am. I wonder if you ever had your surgery and if it helped. My son and family have just moved into the countryside 12 miles from me and I am looking forward to staying for a couple of days with them but I don’t think I could stay with the isolation of the Shetlands beautiful as they are..x

[swedishblue11 in reply to Coffeegal]

haha...I think you should post a picture of the fallen Madonna and let us award it points. I so love a good British classic! "Allo Allo" and "Blackadder" just about kept me sane living in Sweden...or as my mother would say...."this is Russia!!"

No, I haven't had surgery on my parathyroids (yet!) but I'm supposedly being monitored yearly, or whenever hospital appointments start up again! You've reminded me, I need to organise a blood test to check my calcium levels are not through the roof!

I did start a business venture in glass fusing ten years ago, and I have a workshop and kiln. During spring and summer, I'm compelled to be outdoors mostly as a mood/energy booster. I think I'll return to working with glass in the run up to christmas. Working with bright coloured glass has always has a therapeutic effect. Its probably a bit like your tapestry, blending in different colours.

I also enjoy reading but mostly online....something scientific and watching youtube vids. x

[Marnie22]

Hi. I wondered if you are near a local Headway group? My local group has been shut for almost six months, (although staff telephoned clients every week,) and we have just started meeting again last week. I am so grateful as I don't have any other social outlet at all and I can't do zoom either. Luckily we are exempt from the new 'rule of 6,' as charity activities are allowed as long as we observe social distancing. The staff have been great at finding alternative ways to do things.

Don't forget the Headway helpline - they are great and they have often said to me that it's fine just to ring up for a chat, especially in the current circumstances.

I hope you can find some support and social contact.

We are all here to support each other, so use this community as it can be very beneficial.

All the best. 🙂🌸

[Coffeegal in reply to Marnie22]

Hi Marnie, I did go to a headway group when I first moved here but I think it was too soon and I found the confusion the noise and came home and slept for three days. Called the helpline a couple of weeks ago and they put me in touch with this group. I had posted on my Facebook page headway post and to my dismay one of my friends ‘liked’ it! I didn’t realise my comments would be seen on my own page. I would love to be able to arrange for fellow survivors to be able to meet in a nice coffee shop. The last place to before I moved here we met in a hall with blue cups and saucers as if we should be hidden. I want to be out there with everybody else. After all my day started the same as theirs, it just ended differently.. Maybe one day..

[Pairofboots]

Hi, I can relate to moving miles away from everything I knew. This was financially driven, but I expected the same support, but without the baggage of having to explain brain injury.

I was thinking of moving midland ish, my ex-wife did all the recky, as I don't, didn't travel well, and was a lot more unwell.

Moving day came, after 4hrs travel I was thinking we had gone further than expected, the Angel of the North was the give away.

The pictures of the house didn't do it justice, it was much worse. I just sat in the yard as the mover's filled the house.

As for support, the GP that registered me at least was honest enough to say he didn't have enough knowledge to take me on. Plus the the local commissioners didn't support some of my meds, so second best was issued.

Other support was lacking, everything was geared to crisis management. There was no long term support.

Friends got on with life, I was no longer factored in. I deteriorated because the meds didn't hold me. My wife became ex.

I was not generally accepted into the social scene, my problems were not accepted, not that I could always grasp what was being said.

I did eventually get my meds sorted, and am nearer to who I used to be, nearer but no where near the original me.

Now I lead a fairly solitary life, the pandemic didn't change too much, isolation is the same whatever happens.

Maybe I am lucky, my brain injury doesn't allow me to feel the emotions that others might experience.

My brother, says I am strong, and I cope so well. No I live a life like yomping through treacle. The essentials happen, whether they are the same essentials as the rest of the world would judge by, I doubt.

I have been here for six years, nine years since my life changed. I'm told where I live is an amazing country. Well it might be if I was visiting, but I can tell I'm no longer in Kansas.

I've had my melt down, well a few if the truth be told. Now, life is what it is, an existence, and every day I exist, there is a chance meaning will return.

Keep going, if you are in the game, life can become better. Or so I tell myself.

[Coffeegal]

Hi Pairofboots, Just as well I follow myself because I couldn’t find the page again! But yes you are quite right I have often described moving like being parachuted into Beijing with a Chinese phrasebook. Before lockdown I used to say to people, yes it’s lovely countryside and if you see a telephone mast that’s the police station and I know my way home from there!

I had no emotions for the first couple of years but gradually some came back. I live ‘in the moment’ because yesterday is soon gone and tomorrow is just an idea. That’s why I make the videos because in the photo I know I was there because I’m in the photo, but I would have no actual emotion attached to the event but with a video I can bring them all to life any time I like. I have 5000 photos on my iPad and over 500 videos! for my sons that’s the hardest part and I don’t visually recognise their partners so when I went to the hospital to see their new baby I walked straight past her!

Do you have any headway group or a local stroke group? Do you have any hobbies? Do you like photography or cycling maybe… These are both things that can be done by yourself but a possibility of meeting others perhaps? I used to have a dog and everybody speaks to you when you’re out walking a dog 🐶..

[PatientEV0019]

Hi Coffeegal, I have just joined this group because I am looking for peer support. I know that this kind of thing does not compare to doing activities with other people, but it's better than nothing. So far, I have only seen words of encouragement and optimism.

[Coffeegal in reply to PatientEV0019]

Hi Pat.EV I am a fairly recent member to this group myself. I have found Headway to be an endless resource of information and everybody on here to be very supportive and friendly. Although I say in my post that I feel mad at everything, it is more frustration and feeling negatively about myself. I see that you have posted and hopefully you will get some replies from people who have experienced an aneurysm and surgery. Headway also have a helpline and the number is on their main website if you feel you need to speak to somebody as well. They may have some ideas for you. Wishing you all the best and I will keep an eye on your post. x

[Pippy-longstocking]

Hi there, I know the isolation of covid has been such a double edged sword for me. On one hand I can be confusing for people but their reaction is difficult to take - they either get angry with me or laugh at me - so the isolation at least cuts down my exposure to that! I live on my own with my dogs and I'm estranged from my adult kids and beloved grandson, which has caused me tremendous grief. Most of my old friends have run a mile but I'm going out with a former colleague for tea tonight - I'm a bit anxious about it in case my memory lets me down and also just about eating out due to the virus but I'll take my chances this once. I did get to see the only family I have left at the funeral of a much loved uncle recently and it was very comforting to be told they love and support me from afar - that means a lot.

[Coffeegal in reply to Pippy-longstocking]

Hi Pippy, peoples reaction can be so frustrating! It can also be really annoying when people say I have a terrible memory too! I’m sorry to hear of your family situation and I hope that you will get to see them and your grandson soon. I know how much seeing my grandchildren means to me.

I’m pleased that you have the company of your dogs. Pets just love you unconditionally and always pick up your mood and come in for a snuggle. I had to rehome my dog after my brain haemorrhage because I just didn’t recognise her and didn’t remember to do the things that needed doing and she became very depressed. I spent a fortune at the vet but in the end they decided that she just missed me so I gave her to the person who used to look after her when I went on holiday as they adored her. I know I used to enjoy walking her before and so many people would stop and talk to me.. perhaps that would be a good way to keep socialising during these strange times.

Hopefully your referral to neurology won’t take too long and you may get some answers and some much-needed support. I hope that you enjoyed your afternoon tea out with your friend. x