Life can be a Pain

[Former-Member]

HiHi @Decadian, i think having your own thread for your story and updates is a great idea. I can come check on you and catch up. God.

Chronic Pain Syndrome is horrivle, sorry your pain is worse lately, wears ya down 'fed up' & exhausting, grr I hear you. Chronic Back Pain is debilitating but also sadly another stigmatised silent condition. Sad the doctor wasn't more helpful re back pain yesterday. Best not to tell them emotional links to your back pain (re mother), we know its linked but they'll just see it as addiction. Best to stick to physical causes, tell them you slipped over or something. With your medication, I do know that as we age strong pain relief are more likely to suppress respiratory system, & others, so doctors struggle finding the 'right' balance. Sorry this and your mum are driving you crackers atm. Have I told you how much tumerick & black pepper (1:10) & fish oil helps me?

With your mum - Do you know if there is a trigger for the troubling memories of your mother at the moment? An anniversary, weather, event?.. Sorry if you've already said, my memory needs help. I try to see my mum as wounded as a small child.

Relate to your so called Toxic Sister situation getting under my skin. My sister had 'other plans' again when i was in Sydney. What's important here, the Holy Spirit keeps telling me, is to keep your own heart pure. Before God check if there's unforgiveness, resentment, anger etc clogging my system, let it go & let in the light of love and self compassion. Not easy but doable. I have learned that

"the way people decide to treat us has very little to do with us, but everything to do with them"

Do keep running your "own story" I'm glad you've created a space I can come find you.

I agree with seeing most the saneforumites here as "wonderful supportive people" and Like what you said "my soft place to land" feel the same.

Lots of hugs backatcha De xox

[Former-Member]

[Decadian]

Hi peeps

I'll try and answer one person at a time - I have spent time writing on today's posts - but let's get to mine

My pain is okay today - and I am going up to the shop to get a salad sandwich very soon - and I am seeing my GP this afternoon - and my psychologist tomorrow

@utopia - I know your mother is in a lot of pain and neither condition is easily dealt with - CRPS is brutal - I was a support member in a website for Chronic Pain in the US - things got really tense there because they got onto MMJ and I am against their "pushing it". What people take like that is their own business but I am not - and long story short - my opinion wasn't required and the manager told me to "Go Away" - so I did

However I learned a lot when I was there - and I know that CRPS really harsh pain - a cruel condition - and my second cousin has fibro and she is in her early twenties - that condition takes people's lives away

About my pain - I have no idea what it looks like - and I realised when I saw me in the family photo my dd took at Christmas that I was standing badly - and since then I have been standing up straight - and the weight on my corroded end plates - the surfaces of the vertebae that have the degenerating discs between them - cause pain and it is so localised there is no mistaking it - that is way I was standing badly in the first place

I don't know how to "play it up" and my GP really does know why it hurts and he sees it and I think he is really concerned and would write more medication except the specialist is the one who has the say so, I am allowed injections twice a week which helps a lot so that is a good thing - and that is the best part

But perhaps it was all my writing yesterday - I felt better when I got up this morning - and it's time for me to go to the shops - it was a good idea to write my own thread - my story is complex and here people can look back and see it

Thanks @utopia - I know your mother is battling - say Hi to her for me

Dec

[utopia]

Thanks @Decadian. Sometimes being able to express our pain - reduces that pain. I think it's because pain - whether emotional or physical - makes us carry extra weight. And when we speak about it - that exyra weight is lifted.
I'm glad you are doing better today. Yes I was thinking of only playing it up to your specialist - as they will determine your dosage. Tomorrow you should feel amazing after your injection today.

[Decadian]

Thanks @Former-Member

I have never had a come-to place here - when I started here I was still posting in that website in the States and it was a tough time for me

Anyway - I am bringing up your post as a quote to go through bit by bit and delete some things - it can be easier that way because you cover so many different things here

---

@TAWNEY wrote:

Chronic Pain Syndrome is horrivle, sorry your pain is worse lately, . . .(and) is debilitating but also sadly another stigmatised silent condition. Sad the doctor wasn't more helpful re back pain yesterday.

My doctor was okay and treated the pain - but his hands are tied by the specialist and he can't write anything else because of what he has a permit for. At least I have what I have and many people don't have that much - it is a silent and stigmatised condition - but it's also a very real condition

Best not to tell them emotional links to your back pain (re mother), we know its linked but they'll just see it as addiction. 

I haven't had any trouble with thoughts of addiction - the first scans of my spine showed complex issues in my lumbar spine and an MRI proved it. At first a couple of nurses questioned me thinking I was addicted but this was far from the truth - and the specialists I saw were very understanding - and my use of Section 8 medication is monitored - I stay at the clinic after an injection and they watch - when I have one at home from the locum doctor they know me and know everything is done carefully.

I don't know what the future holds - without what I am having now I don't know that I could manage my life here - which probably works on my side because I get a lot of help and I am one of those people who want to stay in my own home. I understand how your mother feels about that

It's  okay to talk about my mother - they all know about her and the way she treated me - I really do know she suffered a lot about that which is helpful - you know - I didn't seek to get back at her - I prayed for her to be released from her suffering - not to have suffering - but the universe cares for it's own - my mother had regrets.

Sorry this and your mum are driving you crackers atm. 

With your mum - Do you know if there is a trigger for the troubling memories of your mother at the moment? An anniversary, weather, event?.. Sorry if you've already said, my memory needs help. I try to see my mum as wounded as a small child.

Yes - I was triggered - it was my mother's 2nd anniversary then Dad's 6th a few days later - and it's strange - I am okay about my father - I know he is not there but I often have a feeling he is in the next room - and I am not spooked or anything - things were fine between him and me but after he died my TS really got stuck into the ugly stuff

And then there was all the trouble at the Melbourne Juvenile Justice Centre and because it has been vandalised so much they are closing it and this bothers me a lot - I did a lot of work 30 years ago and I am not about to reopen my wound by going back there - but things have piled on top of me one after the other  - and will TS needing to have my signature on documents and with texts and letters passing between us between sensitive dates I felt bruised - and curious - after giving me such a filthy look at my aunt's funeral why get in touch with me right then

I thought about it - perhaps she wants to make nice but I can't trust her - she will have to be more open and honest - wow - will she ever

I  believe in the Holy Spirit - there is no malice in my heart or soul - I saw a meteor a few nights back - near the moon and Venus - and it was a beauty - and my first thought was that my sister could be healed - before I even thought to wish even - my prayer for her is that she can find her way to a place of being a reasonable person - but our mother managed to damage her too

Yes you can find me here - and hugsbackatcha also

Dec

[Decadian]

Yes @utopia - it does help to talk about the pain - it has been worse lately - and it's weeks until I see the pain specialist

I think she has a problem with me because I ask difficult to answer questions - and I don't just sit there and look blank like some elderly people - the place where I go is where there are a number of outpatient clinic for elderly people - I started going there when I was 54 which seems so young now - and a lot of the people in the waiting room sit and stare into space - and I have tried talking to them and some respond - glad to chat - others seem lost and alone and I wonder about their lives

So I have the idea my specialist thinks I am a bit too clever and the reality is that I am a bit too clever - I investigated my own condition years ago and know a lot about the pharmacology and anatomy and all sorts of facts about chronic pain - and in reality - most people don't

So all I expect when I see her is that she will keep things as they are - and I built in my own back-up by cutting back on my medication myself - but I want an addition - something she took out - and she hasn't given me a reason that makes any sense

But here's something I hear from people - not my team btw - but how often have I been told that the medication causes the pain!!!!! This is stupid - the pain was there first - and if I cut the medication back - it will hurt because the pain comes back  - not because the medication causes that

Anyway - I am seeing my doctor today for a medicare plan to see my psychologist  - for some reason that my doctor thinks is silly I can't see him about anything else today - which has to be ster-range - but how much sense can Medicare made anyway

Emotional pain is far worse than physical pain - they can treat physical pain in some ways - but emotional pain is so much worse and corrodes us and brings us down so far

They say time heals all wounds but I have noticed that there are some wounds that never heal - my mother died in her very old age very wounded

Dec

[Zoe7]

@Decadian Hope all goes well with your doctor today 

[utopia]

@Decadian. Yes some people never heal. But some people never got the right help. Some people like to play victim. Some people have it really tough and complicated MI's - that doctors struggle to treat.
I think some wounds heal - but they heal with scars. And some scars are always sore to touch. And scars never heal back and look like our old skin - our original skin. Thry are different, because an injury occurred.
Some scars we can live with. While other scars will always be painful. We just hope that the pain is not as intense as the original injury was.
Not all MI or physical pain can be 'cured'. Most of the time we need to learn how to create a life anf live that life as well as we can. And that in itself - is wonderful.
Have you ever considered a pain pump/ medication pump implanted under your skin? A dr I worked for - offered this for some patients.

[Appleblossom]

Hi @Decadian

I am glad you are "running your own thread".

I wish women did not feel the need to apologise for being clever .. or too clever ..

A lot of medics believe in responsible self management and understanding of one's own issues. I am with them and with you.

We have lots in common ...

We two could have a WHOLE pain fest .. lol ... but I need to log off now.

I understand why closing the Juvenile Centre is triggering .. it is because you care about the bigger picture.

I will still need your canny wise advice for my activism ... but not yet ready to go there ... when things are more stable .. I will open the coroners report .. it starts off with other patients finding my sister in the back yard ...at the halfway house ... maybe in a few more months.

It is so good that the SANE community has people in LE who also have medical insight ... 

on ya @Former-Member & @utopia

[utopia]

@Appleblossom. Take it easy. There is no need to rush and read the Autopsy report. I wish I hadn't rushed in to read my dads. Taking time & knowing when you are ready. That's so important. And I'm glad you will have @Decadian at hand, to help you, when that time comes.
Sending hugs. ♥♥