Als MND panic- please help me!

[jojo2316]

That’s hard. Or maybe not, if your strategies work. You are, after all, the person you can most rely on. I am more of a coper in real life - although occasionally that doesn’t work out too well (like today!!) . In fact I was unburdening to a dear friend this AM, who thinks I hide it “too well”, so people don’t realise I need help when I do. But on here I feel I can be warts and all, because you lot can just log off or not read my posts if you want - or need - to. And I find that quite a release. Funnily enough, you know more about my dragon battles than my real world people. I have to be a bit careful what I show them, and when, because they need me to be their Mama, or wife or daughter or friend. It is a genuine upside of the internet (I reckon - but I bet you don’t!!!!)

[pulisa]

I can see your point about the forum being a release but it's a release of sorts because ultimately you're still in the grips of HA and do you feel safer after interacting with people in a similar situation on here?

[jojo2316]

I can see your point about the forum being a release but it's a release of sorts because ultimately you're still in the grips of HA and do you feel safer after interacting with people in a similar situation on here?

Yes

[BlueIris]

I think this place can feel like a safe space when you know the HA is making you crazy - I'm here because it's an area where I know if I'm not able to fake normalcy for a while, people will recognise that there's a middle ground between sane and insane.


I can be deep down the rabbit hole (earlier this week I was in full-on insanity mode owing to the scary symptoms du jour) but I'm always aware of my anxiety making me irrational, and it's good to have a space where I can discuss that irrationality without being written off as totally broken.

[pulisa]

I think it's a very good thing if you both feel safe on here. That's the main purpose of a site like this but you both are not in denial of how your HA affects you mentally and physically and that's half the battle. I think you are in the minority though of people who post on here.

There is absolutely no way either of you are insane by the way! Just tormented up to your eyeballs! Far be it from me to give you any advice because I'm struggling each and every day but just can't talk about it so what does that make me? Not as healthy as you two! xx

[BlueIris]

Pulisa, I can't talk about the half of it I'm a long-term lurker and thanks for all the advice you've given other people that's also helped me.

[pulisa]

I'm really pleased if something I've said has helped you in some small way. I'm glad you have emerged from your lurking "mode" to contribute on here because the advice you give is spot on.

[jojo2316]

I think this place can feel like a safe space when you know the HA is making you crazy - I'm here because it's an area where I know if I'm not able to fake normalcy for a while, people will recognise that there's a middle ground between sane and insane.


I can be deep down the rabbit hole (earlier this week I was in full-on insanity mode owing to the scary symptoms du jour) but I'm always aware of my anxiety making me irrational, and it's good to have a space where I can discuss that irrationality without being written off as totally broken.

Totally totally agree. Relationships with real people are complex things and if you project your “inner madness “ to your loved ones too often it affects the nature of your relationship with them. Unavoidably. But here, there is none of that complexity. Which can be very liberating.
And as for Pulisa’s question about whether interacting with others in the same boat actually helps, I say this: yesterday I did NOT make an appointment with the neurologist. I looked at her number on my phone, but I didn’t call. And if it wasn’t for you guys I WOULD have done. It really is that simple. Wailing on here was just enough of a release to hold me off. And today, just this minute anyway, the dragon is a little bit quieter.
It’s an ongoing - and EXHAUSTING- battle, but having others fighting along side HELPS.

[pulisa]

Really well done on not making that appointment!! Best thing you (didn't) do yesterday!

I think you need people to challenge you though as they fight alongside you. Also I have found that the best doctors are the ones who are straight with you and put things in perspective.

[BlueIris]

So proud of you for not making the appointment! I've spent the past few days fighting the urge to run to the GP over something that can be raised at an appointment I have after Christmas, and even just sitting on my hands for 24 hours has made an immense difference.