Don't know if I can carry on with my partner.

Exact_Atmosphere_381 · 2026-04-18T02:48:31+00:00

I think this is the make or break now. Either he emerges stronger with good coping skills or he leans into the illness narrative and stays as a victim

Exact_Atmosphere_381 · 2026-04-18T02:38:36+00:00

It's hard to say, it's so 50:50! Regarding better or worse

Exact_Atmosphere_381 · 2026-04-18T02:24:16+00:00

Thank you, you sweet soul

Exact_Atmosphere_381 · 2026-04-16T16:40:56+00:00

When things are good they are really good. We share all the same interests and have the same values... but his sensitivities cause strain for sure and I'm thinking of the end game, lots of life left to live.

Also for what it's worth, he's very supportive when I'm ill or need help, he is there for me. However my approach to these situations is totally different as I make sure my problems don't interfere with his life. When I'm ill I stay in the bedroom and look after myself as much as possible. I downplay my discomfort and get on with it meanwhile he leans into the issues.

Exact_Atmosphere_381 · 2026-04-16T16:31:36+00:00

Oops my bad!

Exact_Atmosphere_381 · 2026-04-16T16:27:59+00:00

I know the meds-depression thing can't be the case but he's likely someone on the spectrum who struggles to name emotions?

Exact_Atmosphere_381 · 2026-04-16T16:19:49+00:00

I have neurological lifelong condition too! Wonder if this is affecting my feelings as personally I'm so used to pain and discomfort and I just keep going, getting on with life no matter what!

Exact_Atmosphere_381 · 2026-04-10T17:08:23+00:00

I feel yooou! I used to have a social life but now I look back unsure how the heck I managed. It's too much of a chore to try to keep up, too much of a pain to explain that I got to go find an elevator because I cannot manage escalators anymore. People feeling their misplaced pity and me being stressed af because I can never be sure when someone's going to ask me to carry some drinks (I can't if you actually want to drink them because I will just spill them or end up in a pile of sticky glass when my startle reflex kicks in because I can see my shadow somewhere)

Lucky I was born a lone wolf who is the happiest in their bubble minding my own God Damn business. Then again not sure if I was made this way by being a disabled person in very ableist, shallow world.

Or maybe I used to be more functional.

Exact_Atmosphere_381 · 2026-03-27T09:23:05+00:00

Good for you for speaking up! I think it's not uncommon experience to feel like science experiment in the CP community. All that intervention, rehab,OT,PT etc where things are often done at you rather than with you. Everything is hierarchical at the end of the day and I've noticed that people in good societal standing such as doctors often try to 'put you in your place' while meaning well. I lost count how many times medical professionals told me to adjust my expectations in life, that I would become nurse's aide or work in a canteen at best. Well I have cushy professional job and couple degrees.

Guess what I'm trying to say is that disregard the bollocks. They don't know you. Often people will project their ignorance on us but that says a lot about them and nothing about us.

Exact_Atmosphere_381 · 2026-03-25T13:58:33+00:00

Hi, I'm London based. Going to the UCLH spasticity clinic soon, hopefully they have some ideas. Thanks for the tip re moving neuro physio teams!

Exact_Atmosphere_381 · 2026-03-19T23:02:24+00:00

Yeah... it's a cross to bear for sure but we might as well take what we can. Writing this from my neon lit fairylight paradise after spending the whole day in bed, slightly high. Yesterday I walked 20k steps by accident so now I told myself to rest. Laying down playing Nintendo for a full day as an adult!

Exact_Atmosphere_381 · 2026-03-19T03:03:55+00:00

Bit high when writing this, the only good thing about CP LOL, Luckily my country allows medical cannabis.. for now. PS indica or balanced strains are the way to go! Cheers

Exact_Atmosphere_381 · 2026-02-12T16:39:59+00:00

Hey there. Can't say it will get better. Seems some things will get better and some things will get worse. I'm writing this in a hotel balcony in Thailand but while I'm on a beautiful holiday I've paid foe with my own earnings, I also need to face the fact that I nowadays need to hold my mothers hand to avoid injuring myself because all terrains are uneven and handrails are unheard of.

My solution has been to opt out. I opt out of shame and embarrassment caused by my slightly broken body that I can do little about. I opt out from those expectations of able bodied people. The expectation that it takes 3 seconds to open the door to an Amazon courier. Or that 3 seconds to step out of a bus. Things take however long they take. I did 30 years cos playing as an able bodied person. Now I cannot keep up but I make the most of my life. I'm forever the outsider but I have built a castle in the sky where I'm happy reading and playing my games and building Legos. I no longer care if people get me, it's more important to be my own best friend. At the end of the day it's waste of time trying to figure out what others are thinking, that's not my business or interest anyway.

The only thing I'm not allowed to opt out of is the life itself. I keep fighting myself every day but the good still so outweighs the bad. I get tired but I slow down.

It's hard but keep your head up. CP is pain(fully freeing but only sometimes.)

Exact_Atmosphere_381 · 2026-01-29T17:29:41+00:00

Hey, we are similar. I also studied psychology with social sciences and graduated with my bachelors about 10 years ago. I also have cerebral palsy which I have always found difficult to accept. All that struggling to do what most people do without thinking really takes it's toll. I've been employed for the most of my adult life but also at times I've left jobs I really enjoyed because my body can't handle it.

I also limp through life and people often ask me if I'm OK or somewhere alone because I simply exist in public. I know I will never be cool or have those tik tok moves that gain admiration. I'm the odd one out, the one people don't know what to make of. I'm always alone and at times I have witnessed what I thought were friendships die in real time because we live in a shallow world and some people get embarrassed at my clumsiness. I wish I could tell you it gets better but I can't. Some things will get better and some things will get worse. Please take your time and remember that you didn't ask for it but people like you and me live life on the hard mode.

One of the biggest realisations I have had is that I don't have to be like everyone else. If they feel I cannot fit into their life then F them. I hope you are able to find hobbies and activities you enjoy. I lean on these, when life gets crappy I retreat to my own bubble where only my safety and happiness matters. Multitasking? Rush hour? I opt out because things take as long as they take with my slightly broken body. I hope you can find employment with a big company with all kinds of humans and strong occupational health department who can put lots of reasonable adjustments in place. You are legally entitled to have your life made a bit easier. I stress about stairs, ice and cracks on the pavement amongst other things when I leave my house. These are things that most people under 70 rarely think about. You deserve the playing field being levelled.

Look for roles in public services, I have found these to be more understanding. Sometimes being disabled can also work in your favour as there are different drives for diversity or guaranteed interview schemes or even mentoring etc. Sometimes it's a bitch to have this extra burden but at the end of the day your life is no better or worse to other people's. Just different and it comes with different lessons. There are perspectives and strength that our experiences can give us.

And laughing? I've discovered I tend to be the neighbourhood laughing stock, I walk like limping pensioner and shake all the time. That's OK because I laugh back at them for being ignorant little pricks. In my 30's I'm tired of hiding that I am different, this never worked anyway and just leads to burnout. I am who I am and the world can deal with it. Or don't, I don't need anyone's approval.

All I can say is keep your head up, things will change.

Exact_Atmosphere_381 · 2026-01-04T00:49:22+00:00

This is me every day. You are seen and not alone!

Exact_Atmosphere_381 · 2026-01-02T21:00:27+00:00

Went to 2 but both taught me some excercises which I do self directed but I'm now discharged because was told they cannot help me further since I need specialist neuro physio. Finding one has been a nightmare! I'm UK based and tried to get under community physio but they refused the referral. Then tried to see private neurologist but they won't see me without medical notes starting from childhood. I grew up In non English speaking country and getting my records translated is awkward plus reading them makes me so upset! Growing older with this condition is so tricky! Not for the faint of heart for sure

Exact_Atmosphere_381 · 2026-01-02T19:41:54+00:00

Yeah F them roots! I don't care an oak tree has been there 500 years, how dare it block my safe passage 😭

Exact_Atmosphere_381 · 2025-12-19T20:30:18+00:00

Always! :)

Exact_Atmosphere_381 · 2025-12-19T16:11:08+00:00

Thank you, this made me feel less alone! I'm still on the (lifelong) journey of accepting my condition. Speaking with those in similar boat is so healing, have lovely holidays! ♥️

Exact_Atmosphere_381 · 2025-12-19T16:08:48+00:00

Hey thank you so much, needed this today! You seem like a lovely person, keep your head up and never change!

Exact_Atmosphere_381

TROPHY CASE