None of you drain my battery

Just to be clear from my last post, absolutely none of you drain my battery. I simply meant situations where I am out and about. In person situations. You see, I worked about 10 years in this area, 5 years as a cashier in a local grocery store, and the other 5 years as a reporter and photographer for our small town weekly newspaper. In a community with about 1200 people, I got to know pretty much everyone...and they know me. So every time I go to the store, people stop me and talk to me, which is somewhat draining and stressful. 

The last couple of years have been very different; stress about being so vulnerable to getting sick and lingering covid that I've already had 3 times has made me wary to even be around others; it's a self preservation maneuver I think. 

Some of you mentioned control; and hit a nerve with me. Control... yes. In all honesty, you guys nailed it. I feel as though most of my control has been taken away. I can't do this, eat that, enjoy previous activities, etc. I've been living life as a disabled person for so long, constantly being told to be careful, don't do too much. I don't get the luxury of doing what I want. The only control I have is deciding who I want to talk to about my issues, what I need to say or not say, and when. 

So yes, control is definitely a big factor. I miss my job, I miss my physical activities that used to be so cherished and important, and I miss life before heart failure. 

I'm grateful for all of you though... because you all charge my battery and keep me plugging along. 

6 Comments

I didn't take it that way...

by USMC-Pacer - 2024-03-10 21:55:51

I totally get what you are saying. I always enjoy reading your posts and comment on your posts, and other's posts when I think I can help. My goal is always to encourage folks here as I know all too well how these things can take the wind out of your sails. I don't live in a small community, but I can only imagine how exhausting that could be. My cousin lives in a small town in VT with a population of 800.. everyone is in everyone's business and that would stress me out and exhaust me as well. I get it... or think I do :)

Thanks USMC Pacer

by R2D2 - 2024-03-11 02:38:45

I appreciate your understanding. While I have never really had difficulty lamenting my issues, sometimes I miss some crucial information and give the wrong impressions. That is not my intention, and I always want to clear things up if I have caused hurt or sadness to anyone. 

I should always clarify that present company (this group of people) are always excluded when I speak of people who stress me. I thought I was being clear about that, but my last post may have caused some bad feelings. 

I am glad we are still talking

by Gemita - 2024-03-11 05:12:29

Janene, battling with any illness, having to take certain meds, can certainly make us behave in ways that can sometimes be hurtful or even harmful to others who are trying to help us.  I have been on the receiving end of this behaviour several times in my lifetime and so I have to protect myself from the harm that it can sometimes cause, but I am far from perfect and I know I have sometimes lost patience with those I care about too.

Perhaps I read more into your earlier message than was good for me.  You clearly had no trouble expressing what you really felt and even seemed to enjoy doing so.  It seemed, at least to me, that you were trying to push us away, to warn us that you had allowed us in, but now you wanted us to know our place.  You certainly made it perfectly clear in your earlier post that the only therapy you really needed was “self therapy”, so I have lost some confidence in knowing how best to support you.  I am glad though we are still having this conversation which indicates a willingness on both sides to resolve any misunderstanding.

Control

by piglet22 - 2024-03-11 07:46:08

R2D2

The older I get, and sometimes grumpier, the more I realise just how subtly our lives are controlled, and short of taking to the hills and disappearing off the radar, there's not much you can do about it.

Everything you do is in some way controlled. What you eat, what you watch is controlled, but you do have choice.

One of the more subtle ways of control is to dress up "digital" "online" as something positive.

Obvious examples are banking, finance, even medical services like prescriptions.

Banks close High Street branches, HMRC (IRS) closes tax offices, GP surgeries go digital. Even the pacemaker F2F clinics are replaced by "virtual device clinics".

In the news today, hospitals rolling out "virtual wards". Something else for non-technicals to get to grips with.

Some of these things shift the work from buildings with people to you, cursing the passwords, navigating the menus etc. So now you must comply with something else or go without.

I’m busier now than when I worked full time because these demands come in to fill the time. Unless I get someone else to do it, I'll be doing it for ever. These people control your life.

The hours I have spent battling these organisations.

HMRC has to be the worst. Government designed software and security tighter than Los Alamos or a Trident submarine. I spent hours, days, weeks and months trying to prove who I was.

By sheer doggedness, I got there and actually got compensation from them for taking up so much of my time.

Now, I can be awkward. "you will have a heat pump", “you will scrap your diesel vehicle", "you will have a smart meter". No I won't. I'll go to jail first.

One of the benefits of being older is that you can operate a selective memory, you can act stupid at the self-service checkout, you can play the old card. Best of all, I bow and curtsy to no-one.

There are ways of regaining some control, it just takes a bit of effort.

Control

by Penguin - 2024-03-11 14:54:22

I googled ‘control’ to find out how patients and medical personnel interpret a patient’s need to ‘control’ situations. I clicked on the MIND charity website who are a well known mental health charity in the UK.  Their link featured comments from patients who all talked about wanting to have ‘control’ over their care and treatment and to feel involved - as you do!  (This doesn't mean that you have a mental health issue btw - just that you share similar needs to be heard and helped in a way that makes sense to you.)

This is what the patients said: 

‘I feel, as a patient, I am the expert on me. So I know more than anyone else what is going on in my head, and I know what I need.’

‘In the past six years I have had counselling, a brief attempt at CBT [cognitive behavioural therapy] and routine meetings with mental health doctors, but the thing I have found most helpful is open online forums full of people like me.’

‘I was involved in choices about my medication. We agreed on a particular antipsychotic because of my issues around weight... and the change happened because of me! That made me feel in charge of my own care.’

This pretty much reflects a lot of what you have said Janene.  

Clearly you are not alone in how you feel, so take courage and believe in your ability to take back control and do things your way!   This is no reflection on other people who may have found solace and help via other means.  We are all different.

Sweet Gem...and Penguin

by R2D2 - 2024-03-11 15:32:04

By self therapy, I mean being able to do it my way, not alone. To me, this group IS self therapy. I'm not ever pushing any of you away, you're the reason I am still here, making actual progress. And Gem, you're a key element in my healing journey, I don't know what I would do without your incredible wisdom and kindness. You have been nothing but encouraging and helpful. If I caused you to question that, I'm deeply sorry. In the future, I will try to be more clear with my words so there won't be future misunderstanding. 

 Penguin, you seem to get me too, and I really appreciate your advice and approach as well. There are so many wonderful people here; I'm grateful for all of you. 

I'm not an easy nut to crack, I am a HSP (highly sensitive person) with more sensory issues than I can count, making this journey not only more difficult for me, but super challenging for those that care for me, including my doctors. 

Here is an article about that in case any of you are bored and want to better understand my story. 

https://www.verywellmind.com/highly-sensitive-persons-traits-that-create-more-stress-4126393

Bottom line, I love this club, everyone has helped me so much, and I want to fight to survive, thanks to you. 

 

You know you're wired when...

You can feel your fingers and toes again.

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At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!