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We want to hear from you: please tell us about your experience of the online community.

How do you start the day with your disability?

StarryEyed

Do you have a special way that you start your day to take into account your disability?

For decades, I've just plowed through, trying to just force myself through morning to night, and of course this has just made me get worse. With a PTSD background, my solution to body pains was easy: Just disconnect, as in dissociation. Sweep it under the rug, you know. So now I've got no choice but to connect because the pain is now unbearable and because I'm at the point that I can barely stand or walk due to degeneration in my lumbar spine and peripheral neuropathy in my feet. This is very disruptive, to say the least, but at least now I'm finally facing my disability and connecting to my pain.

When I wake up, I'm absolutely bowled over by the emotional and physical pains and by my new life of immobility. It's a rough start to the day and often it's a nonstarter for the day.

I'm thinking this might be common amongst members. Or at least some of you. Do you have any pointers as to how to wrap your head around your disability when you wake up, when you start your day?

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Comments

JennieWren

I try not to start my day in a rush (sometimes it’s inevitable) so that I get a chance to check in with my pain levels. This might mean extra meds but my physio has taught me some great gentle stretches for my spine that relax me and can help with pain. Sometimes it’s taking the meds and letting them kick in first too. My pain levels will determine what I wear and what I do. I think you just need to be kind to yourself and be aware not to push it but not to be lazy either. I’ve found chronic pain can turn you nocturnal really quickly so some afternoons I fight to stay awake so that I’ll sleep that night. I fell into the nocturnal cycle a couple of times and I found it really bad for my mental health as well as my physical health.

JD_INCINERATOR

https://forum.scope.org.uk/discussion/138890/how-do-you-start-the-day-with-your-disability

Same as I end it really, feeling like I have no support.

Littlefatfriend

Slowly and carefully.

I've always been virtually nocturnal.

I try to encourage myself into the day

bookrabbit

It surprises me every time I try to get up that my body just doesn't work properly anymore.I have become so good at ignoring pain that I expect to just be able to get up and walk but then I have to haul myself out of bed using two hands on the door handle and can't stumble to the bathroom fast enough and usually wet myself before I get there:(

I think possibly I am not upset enough about this. It seems surreal and bizarre. The things that really impact me emotionally are things that have happened in the past and somehow being in pain and not being able to move are the lessor evils. It's all so ridiculous I don't think anything feels real. I can dance and run in my head.

theme79

first - I don’t expect to be a person I am not (non-disabled) seems trite but one of the destructive and pain intensifiers - physical and emotional - is comparing myself either with a previous version of myself or other people. I am unique - even doctors and health professionals these days fail in that.

Second I don’t anticipate being in the best on offer to me until midday - I don’t rush and as others say TAKE IT SLOW - it’s it’s not a race, that list increases pain and damage.

find a purpose in living the life you have and being the you that is in that life. Thus is different for everyone but therapy (proper therapy by disability experienced people or services - NOT short term CBT focussed stuff - if you are severely physically disabled person this is inappropriate in my experience as some who in my younger less impaired self was a disabled counselling psychologist

finally everything is in flux in your busy, mind and world and therefore pain, distress and emotional states seem fixed, unchanged or getting worse but actually nothing is yearly like that - but that is about philosophy and the meaning and nature of life - not for everyone but reading some philosophical work such as the stoics (the REAL base of iwhat is CBT) as this is the while picture of helping us deal with life, pain and death and how to live it, whilst on it.

Fii it Bally be kind, gentle and compassionate to yourself !!

OverlyAnxious

I start the day with the crushing despair of having survived the night and now having to endure another day in this body and this property.

The only way I manage it is by breaking it down into much smaller sections, not even thinking about anything more than a couple of hours away. I can force myself to get up at a certain time, have a shower, get breakfast, and that clears the first hour or two. Then do the rest of the day in sections of around the same size.

StarryEyed

Thanks everyone for your insights and encouragement.

Yes, slowly, kindly, gently and with patience is what's working for me too. It's sooooo frikkin frustrating to have to go so slowly and to have to baby myself so much. But I'm thinking if I can just do this, these are good character-building exercises. But then I say I'd rather not have character if this is what it takes! Sheesh! Lol! Anyway, the alternative is plowing through like I did before and making my conditions even worse. I'm between a rock and a hard place. Not a good feeling!

The small sections is something I do too. I structure everything around that - housework, shopping, cooking, errands, socialising.... Again, it's not an option to plow through and get a ton of anything done at once anymore. I miss those days of excess. Now the simplest tasks are excessive.

I'll adjust. I'm a tough cookie and very resourceful and determined. I'm just really having a tough time adjusting so really appreciate your guidance here.

@bookrabbit, are you referring to PTSD feelings? Because my PTSD has blown up with this physical disability because my physical disability is bringing up feelings from previous trauma, such as hopelessness, helplessness, vulnerability, physical pain, being overwhelmed....and so on. Is that what you mean?

StarryEyed

@JD_INCINERATOR, I lack peer support, which is why I joined this forum. I hope you get some support here.

@Chris75_ I love this saying.... Saying I can't be sad because someone has it worse than me is the same logic as saying I can't be happy because someone has it better than me.

JD_INCINERATOR

https://forum.scope.org.uk/discussion/comment/1072220#Comment_1072220

Well I enjoy conversing with people on forums such as this, but I want meaningful connections and people don't seem to want that.

StarryEyed

@JD_INCINERATOR "meaningful" in what sense? What's meaningful to one person may not be meaningful to another.

JD_INCINERATOR

https://forum.scope.org.uk/discussion/comment/1072323#Comment_1072323

What I mean is I'd like DMs and actual conversations. I have tried DMing and have tried conversing with others before, but they're not interested. I understand why people won't do it, but I think to myself what's so difficult or problematic about having a conversation with someone on the internet? Maybe people don't want online friendships, but I really don't see what the barriers are. I guess something's up with me in some way and that's why I don't get these opportunities much.

StarryEyed

@JD_INCINERATOR that's interesting because you show how we need support in different ways since other people here aren't into that. But perhaps there is someone here? What about starting a thread asking if anyone is interested? You could say, for example, what kind of things you'd like to talk about and what you can offer in support of others. Or maybe you can find other ways to give and receive support here?

Personally, I don't like DMs because I feel it's too intimate for someone that I can't see. It feels like I'm in a dark room alone with a stranger who I can't see and could be just about anyone. It freaks me out.

Or maybe you could ask others on the forum how they feel supported here?

Albus_Alumni

We wont judge if people want to talk about their issues though @Chris75_ for many, talking about things is a great way of processing it all. 😊

birdwatcher

I'm horrible first thing in a morning. Desperate for a wee and 9 times out of 10 have an accident before I get to the toilet. Can't have a bath, not been able to for a couple of years so a **** wash. Can take an hour to get washed and dressed. Just wish the bathroom wasn't so cold! We eventually make it downstairs. Light a cigarette!😁. Then early meds. Feed my fish and my dog, brush her, let her out for a wee if she needs one. She's main priority in my world. Make my cup of tea then put the news on while waiting for meds to kick in. Wretched things! Can be 11a m before they do some days and I'm thinking about the midday ones. I don't dwell, I keep putting one foot in front of the other. We've got 2 choices !😁 . What does drive me nuts is a friend who's constantly whingeing about her health. Maybe I'm not as patient as I used to be but she's really getting me down with it. Awful as it sounds I'm trying to swerve her at the moment.

durhamjaide2001

I have a cuppa and stroll through social media or have breakfast

Albus_Alumni

You're really making me miss that first ciggy of the day @Chris75_ I've recently celebrated 1 year smoke free.

I celebrated by having a rollup, which seems slightly counter productive. 😆

birdwatcher

Sorry Chris! Didn't know you were a former smoker😁 . I daren't smoke in bed now( used to!). I take my ecig up with me and many a morning I wake up and it's on the floor or down the covers. Daren't risk lighting up in bed now.But as soon as I'm downstairs I do!

We all need something.......😄😄

StarryEyed

I smoked too since I was 13. After trying a bazillion times to quit, I finally did it 9 years ago with Alan Carr. I'm 61 now, so that was a ton of cigarettes befor quitting. Still miss it, although less every yeAr. Morning cigarettes were delightful, no matter how much I was coughing LOL!

The past few days I haven't scheduled anything in the morning and it's made getting ready much less frantic and less overwhelming. Maybe this is the game changer? We'll see.

@Chris75_ complain all you want as far as I'm concerned. I despise toxic positivity.

StarryEyed

P.S. Excuse the typos. How can I edit a post?

StarryEyed

Thanks for nothing!

🤔

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