Emotional Lability??

[PeterPan]

PeterPan have you stayed in it or was it for a short period?

Have stayed on it. It’s such a tiny maintenance dose. Eight drops in water via the PEG along with all the other meds. I don’t think it’s affected my mental state, mood etc in any other respect 🤪

[LindaB]

PeterPan thanks for that info....will monitor my mood. I'm usually a glass half full kind of person...although I suppose managing everything that comes with our diagnosis is bound to drain that glass from time to time. 😏

[DeeH]

HI

Thomas gets EL of the crying type (just eyes leaking) not the bawling your head off sort.

At sad movies, or other emotional things Like Captain Tom campaign. On reflections he has had this for a few years prior to his diagnosis.

When he would tell me about a film he watch and I would say, was it sad, you are crying.

I thought it was great that he was so in touch with his feelings, what did I know of the future to come. He is/was such a stoic guy.

I just wipe his tears and we laugh about him being a watering pot. He does get impatient but who wouldn't when you can't scratch an itch etc

He refuses to use anti depressants, as he feels that feeling this way is natural considering what MND is.

He does get frustrated when I can't work out what he is saying, sometimes I say, get angry I can understand you then.


Donna


Carer for Husband diagnosed July 2020, MND of the Fail Arm Type

[LindaB]

DeeH none of its easy...😘

[Deb]

I'm not sure about emotional liability but the loss of independence bit by bit is bound to hit us hard . For us everyday is a struggle and sometimes its the small things that set us off. It can be something placed out of reach or a small step that makes an outing unsuitable.

A photo came up on my phone today of me standing on a beach and it made me cry. Sometimes its good to let it out and not try to be positive all the time.

Big hugs to everyone xx😘🤗

[LindaB]

Thanks Deb of course you're right🤗😘

[denise]

hi everyone
i have no idea what its all about. i never cried for years. nothing would make me cry. it worried me that i didnt cry or show emotion. lately i just cry at anything. its like i have no control, no control about what is going on around me, no control when it comes to getting help. no idea where to go to get help and the fact that the rules keep changing. just total frustration. i have been signed up to have councelling. i could have had it a while back but i decided no i really dont want to do this but it looks like im going to give it a go and once more i am being pushed into something i dont think i really want to do. basically i think well how far back do you want to go and taking into account its only going to be for 6 sessions. with all the problems ive had over the last year i dont reckon 6 sessions is going to be enough. and i am also thinking that if we dredge up so much **** is this going to help or am i just going to dwell over what ive just talked about. well when it happens i will share. but if someone says to me think about how far you have come and what you have achieved. im might be inclined to give them a rude answer because basically i am in the same position i was in 6 months ago. i might just as well be walking off the Pont Aven thinking hey here we are back in the UK things can only improve. yeah right what was i thinking.

hugs to everyone and yeah right im a miserable cow.

[shelly21]

denise you are not alone. I've had a crap time since my diagnosis in May last year. Really let down by so many departments. They say its covid or pass the buck. They just don't realise how it drives us to such dark place.

The feeling of just getting no help. Lost trust and just feeling let down. I had counseling and was told that my standards were too high! I let rip in the countless ways I was let down. I told her not to make sweeping statements unless she knew the facts.x

[denise]

ha so goodness knows what we are supposed to expect if our so called standards are too high. fgs. actually i dont have any standards because all i expect is to be continually let down so i guess the problems are theres not mine. apparently our social worker is no longer our social worker you get a different one each time so where is continuity. And the joy of continually repeating ourselves. so who do we email when things are going wrong if we get a different person each time. safe guarding social worker has also changed and the rules with regard to paying for care can/has also changed with authority to authority so dont take it they also go by the same rules. covid i am so sick of because things seem to be getting worse rather than better. all i can say is that any councellor is going to get a real treat when they get to listen to me. i cant wait. i just hope im in the right kind of mood. boxing gloves at the ready. bring it one.

hugs to everyone sorry i am still complainingt

[DeeH]

denise

Apparently we have a named social worker who will contact us sometime in march.

News to me.

The door has been refered. Date unknown.

There is no urgency and it took 3 messages to the OT to get that information.

The measured chair with pressure relief will come when ever, waiting since September.

Closimat who knows

my family suport phone call, just listens to me moan for a hour and says next week then.

HUgs to All

[Maria C]

denise I had to check that it wasn’t me that wrote your post. Like you, I only expect to be let down, disappointed, or frustrated. At least if there was continuity of care, I wouldn’t have to repeat everything from the beginning and upset myself even more. I do wonder if EL is part of the problem, but it’s mostly justifiable frustration.

I pay a stupid amount of money for private grief counselling. If I didn’t have that, I think my head would have exploded a year ago. Six sessions wouldn’t have even scratched the surface.

For my own amusement I keep a list of the top 20 stupidest suggestions I’ve been graced with. It used to be a top 10 list, but I had to expand it. 🤷🏻♀️

If you can’t complain here, where can you? Hugs.

[Banned]

Ohh Denise!! You are at it again! Thinking that the world revolves around you! Just wait until I get home?

https://www.youtube.com/watch?v=Xq7i8Ix3f_U

Love and cuddles xxxx

[denise]

Thank you Graham of course it does. I can't wait for you to come home .

biggest hugs and cuddles waiting for you 😘

[denise]

Maria c. Yes I've had some really daft suggestions and queries like when I can't sleep and request medical intervention I was asked when my stress levels got worse and why?? Sorry but I can't actually recall which year it all started. She thought I was kidding. Phone call from doctor 'we are sorry you aren't coping. Contact your MP'! Another phone call from doctor ' what can we do to help?' me:. How should I know you're the doctor!!

Is it me???

[denise]

Brilliant choice of music Graham. I should play that every day. Better than happy pills 😂😀😁