Lived Experience Forum

[Neelix]

I had a conversation with my daughter and she said...you get cold, you shut down. My friend told me...you frown and your face looks angry and I get scared. My friend said...why are you outside? why do you stand apart from people?.

I have been at work at I have 'moments' of freezing and just keeping still. It can be 1 min it can be 3 mins.

I did talk with my pyschologist and working with my trauma is an ongoing thing. We did speak a little about 'people' who need an explanation a reason of why 'moments' like that happen.

I can see that and I am like that too. I want to know why and reason with the answer.

I thought? if I say to my friend "I can't do groups, a crowd ..I need to go outside to breathe"

(nope not good enough he asks and asks and asks - dumbass friend I think lol)

I thought? if I say to my daughter " I dont have the 'words' right now to explain" ...(nope not good enough she will give me the silent treatment or not respond to me)

I knoooww...people care and want to know what is going on. I thought short explanation would surpass the moment and continue on.

I am not in the space to disclose trauma. I dont think many are I mean really?

I can explain my 'triggers' of MI but it appears to be not enough to my family or close friends.

Like? do others really understand the stuff people have to do to keep well and then deal with how it affects family & friends plus co-workers .

If I am not focussed or hearing voices I cannot respond to others 'concern' for me in a 'moment' quickly. I do after 5 mins but already they are then irritated.

I do not always have 'words' to explain my behaviour. I try. I then worry.

Do I really need to explain? It is not complex I dont think...I need to breathe , get out of my bubble and let me breathe . Well? its not abrupt like that but thats what I think in my mind.

[Owlunar]

I understand @Neelix

I have chronic pain syndrome and have the same thing happening at times

Sound distorts into noise - I can freeze - sometimes I can't talk and at just time I find people can get in my face wanting information - and I don't have time between their questions to answer any of them - 

I suppose people might need an explanation but right in the middle of chaos who can get their mind in the right place? Not me anyway

But it sounds as if the cause can be different but the results very similar

I had some trouble with my daughter - a few years back she told me she thought I didn't like people because I will frown a lot - so glad she brought this up - I told her "No - I find people overwhelming when my back pain is severe - and I am not frowning - more likely I am busy grinding my teeth into splinters"

Some time has passed since that day and she has been more considerate - 

For your own sake the people in your life need to know what happens that makes you freeze and then can't explain - I tell the people who take me shopping each week that I find crowds really hard and my hearing is acute so people using the loud speakers there - I don't understand a word they say and my ears hurt really

So - I guess you can tell your family, friends and work-mates as much as you like to about your MI - not having MI myself I suppose people might relate chronic pain more easily - physical issues are easier to understand after all - we all know that and from experience of both I know that

But if they will listen when you are okay then that will help surely - you need respect - we all deserve respect - and so many people just don't understand that

But it is easier to explain when we are feeling okay than in the middle of a major freeze and silent scream

I wish you the best Neelix

Dec

[Neelix]

Hi @Owlunar hope your pain is a little better today. Yeah that is what I am talking about when people want a reason , when the chaos is happening. I can see how you explained to your daughter and I will need to look for a way to explain to my daughter.
Hmm...I like those words 'silent scream'....

Cheers for sharing

[Owlunar]

My doctor gave me an injection for the pain last night @Neelix so I do feel a lot better today - thank you

I have lost a lot of knee cartilege and I am walking bone on bone - and this has been making me feel really ill and taken my appetite - but I was able to prepare and eat something easy for dinner last night

Yes - your daughter is the person to start explaining to - and she does deserve the explanation - if she is a sensitive person then she may be able to help explain to other people

Yes - the silent scream - I think a lot of us here know that one

Dec

[utopia]

@Neelix. When I feel a panic attack coming on (& that could be hours long before the panic really hits). I can't focus on anything but trying to prevent the 'attack' from happening.
I go and tell my son - a panic attack is on the way. Then he knows I can't focus on anything else. I can't have a chat. Can't hear about his day. He asks what he can do to help. And I tell him to stay close - keep his bedroom door open & when the attack does come - then to come and help me through it. He knows what to do.
It's important that you try again with your daughter and your friend - to explain what happens in these moments and to explain what you aren't able to do - eg: focus on them and their needs. Maybe you could bring this up with them when you are feeling good. Explain that there attitude to these moments - can either help or hinder you. You need support not criticism. Maybe you could refer them to the SANE facts sheets about your MI.
I wish you all the best.

[Neelix]

Hi @Owlunar. I had to google 'chronic pain' as I thought it might be Fibromalaglia (spelling?) but I think thats different?
Gawd 'bone on bone' ?? glad to hear you are doing a little better.
Yes..appreciate your pointing that out to me that she is a sensitive person and can help to explain to others.
I put pressure on myself that 'I' have to explain everything that affects me.
@utopia is cool for me to hear how you communicate with your son. I will do that when I have a panic or anxiety attack in public. My attacks are relatively new to me with MI as some are aware with another thread I've started.
I cannot focus on them and their needs. I know that sounds selfish of me. It takes all my time to stay well. But??? in saying that I do want to offer them a 'reason' to explain my behaviour.

I will look at the SANE facts sheet. That will be helpful for me as I do use 'visual' stuff to prompt me and assist me to keep well.

Cheers for the thoughts.

[Owlunar]

Hi @utopia

I am so glad to hear that things are better between you and your son - that must be such a relief

@Neelix

Chronic pain and fibromyalgia are different conditions - but both are painful

Fibro is an auto-immune issue I think - my grand-daughter has chronic fatigue syndrom - and my second cousin has fibro - and it's hard to tell the difference - but with chronic pain syndrome there are obvious physical issues that give us an easier time with the medical profession

My lumbar spine has Degenerative Disc Disease from L2/L3 to L5/SI - and Spinal Cord Canal Stenosis at L4/L5 and L5/S1 - that's the name of the discs in the lumbar spine - and this is painful on it's own but I am well-cared for and well-monitored - so that is all good

My doctor was concerned that I looked so ill last night but he supports me in not having surgery straight off - it's not really time yet so I am walking with crutches and my doctor wrote a referral to a physio-therapist for a brace so I can sort that our next week

I will get used to the crutches soon enough - I used to walk with them whenever I left the house but that time passed - that was for my back - now I am hoping to keep going for longer before I have to have an operation which I am sookie about

I am glad you shared your fears and feelings when you are having a pain-attack or other freezing-up problems in public - it can make the world a scary place when we find we can't explain things

I have actually thought of having a badge to explain myself when I am alone but mostly I have something with me when I am shopping

We need to look out for ourselves

Dec

[Neelix]

@Owlunar yeah Fibromyaglia (still can't spell) is awful. I have worked with a client who suffered this and it was very dibilitating.
I hope you did not feel you had to share about your degenerative disease. It sounds painful and you appear to be plodding on.
A 'badge' to explain? a curious idea and quite novel I think. Like 'wait your turn' lol ooops my ironic joke from a person 'hearing' voices. I'm being silly now. I use a list when shopping to help me too. I have a list when I go to hospital to help staff know about me. Well its a list of 'small space' , 'loud noise' and injections more so cannulors.
I have been asked by 'security' at a shopping centre if I'm ok. So? people do notice me and are brave to approach. Bless them in all their awareness xox.

I feel better chatting with you @Owlunar

[Owlunar]

Hi @Neelix

I am glad this is helping - 

I don't mind talking about my chronic pain - and to me if chronic orthopaedic issues are my lot in life there are certainly things that are far worse

So my spine, my right knee and my left shoulder have all felt the brunt of the sporting excesses of my youth or the unfortunate affects of a car accident - and also I think that there are members of my family - including myself - carrying a gene from one of my grandmothers because there are at least 5 of us with chronic conditions and my dad told me his mother was always ill - but he was rather intollerant of this and I never discussed it with him

I have learned a lot about "voices" in the past years but I recall the first time I had a burn-out when my son's MI got the best of me for a while - and I saw a psychriatric nurse before I saw the psychiatrist and she asked me if I could hear voices - and I said - "Of course" - and she asked me what they were telling me and I had to tell her - in my ignorance - that there was nothing wrong with my hearing and I could hear her perfectly well

Oh yes - but hearing the voices that some people hear here - yes - you would have to tell them to wait in line if that's possible - probably not - I wonder if my son heard voices but I will never know

Yes - there are security people looking out for us all the time - I was asked if I was okay when I was flying home after leaving home that morning at 4.00am to go to a funeral and it lasted 3 hours - and I was flying home on the same day and I was hungry and exhausted and in pain - and it's good that people are watching out for us - 

But sometimes it is really hard to explain as you have said

Dec

[Neelix]

@Owlunar Is the degenerative disease progressive? Like surgery will assist for mobility but then you may be looking at other surgery in the future? How do you manage pain?
Actually you saying you have been cooking is making me hungry hehe
My mum had a mental illness and died in a pychiatric ward at 33. But we kids didn't know why, how, ..like history and stuff. It wasn't spoken about and still isn't. My mum is the only one in my family to have a MI. Enlarged hearts is the common thread of health problems in my family.
Today 3 of us kids have a MI. I am one of 9 children.

It warms me to hear that you have learned a lot about hearing voices. It is continually being raised as a topic in the health community now. There are a few support groups here for people hearing voices.
I did tell my dad once that I saw something in the living room and I heard a voice. He went pale and wouldn't come into the room. My stepmother did and slept in my room with me. It helped and I was grateful.

Plane staff/hostess's are great I think to assist others. Food is crap but their care and support is good.

My grandie now hears and see's things. She is 12 years old. I cry. I worry. I go? F****k this cycle...lol I say s***t to get it out. Yeah I know @Owlunar I am a little erratic...dont mind me