Struggling mentally after diagnosis

[Suefromwakey]

Hi Pat, don't treat it as going with your tail between your legs, more realistically now you have let it sink in a bit, at the beginning everything is too much, things coming at you from all angles.

My husband has already said he wont be seeing any Psychologist .............its the denial thing I think

best wishes

Sue

[Ellie]

I’ve lost a couple of pounds since diagnosis so not that bad ,, but since not working and from first symptoms over a year n bit a go I reckon a stone has been lost x

That's not great Pat, but understandable with your low mood. Do you think you could take another Complan per day? xx

[Patw]

Hi Pat, don't treat it as going with your tail between your legs, more realistically now you have let it sink in a bit, at the beginning everything is too much, things coming at you from all angles.

My husband has already said he wont be seeing any Psychologist .............its the denial thing I think

best wishes

Sue

Thanks sue x

[Patw]

That's not great Pat, but understandable with your low mood. Do you think you could take another Complan per day? xx

I could do ,,, but I thought a couple of pounds wasn’t that bad ,,, obviously a stone I lost before I was diagnosed but I wasn’t working and as I was a scaffolder I was eating **** loads of crap all day and lifting loads

[Ellie]

Patw MND is an energy hungry condition - overfeed rather than underfeed. Lethargy and apathy go hand in hand with lack of appetite which, in turn, goes hand in hand with depression.

Pat, Sue is spot on, no tail between the legs - I too waited for a few months before I was in the right head space for counselling, it's not something I could even contemplate doing before I was ready to. I was definitely not the bare all type but bit the bullet! BTW, I spent the whole first session bawling 😏😊 xx

[Patw]

Patw MND is an energy hungry condition - overfeed rather than underfeed. Lethargy and apathy go hand in hand with lack of appetite which, in turn, goes hand in hand with depression.

Pat, Sue is spot on, no tail between the legs - I too waited for a few months before I was in the right head space for counselling, it's not something I could even contemplate doing before I was ready to. I was definitely not the bare all type but bit the bullet! BTW, I spent the whole first session bawling 😏😊 xx

I’ve been reading on here for weeks now and always liked reading your posts and how positive and knowledgeable u are xxx
im trying my best to eat whatever I can cakes and all high calories but just not as easy as it used to be xx hopefully tomorrow is a better day x

sending u hugs x

[Gordan1111]

Hello Pat. I cry a bit now and sometimes annoyed at wife because she doesn't understand what's going on in my head. Someone with cancer once told me how it was the last thing she thought about before going to sleep and was first thing on waking up the next day. Best for tomorrow. xx

[Patw]

Hello Pat. I cry a bit now and sometimes annoyed at wife because she doesn't understand what's going on in my head. Someone with cancer once told me how it was the last thing she thought about before going to sleep and was first thing on waking up the next day. Best for tomorrow. xx

I cry a lot and don’t think I will ever stop as whenever I look at my beautiful family it breaks my heart that I’m being taken away from them so early !! I don’t think any anti depressants will stop this pain of my breaking heart

[Barry52]

Hello Pat and welcome to our special club who’s members are here to offer advice and support. I note that you have been looking in here for a few weeks so you will have noticed how valuable we find this forum. It helps us cope with the day to day issues we face because we understand what impact this disease has on us and our loved ones. I’m not going to repeat the good advice already offered but I wish you success with the counselling.

Best wishes,
Barry

[Patw]

Hello Pat and welcome to our special club who’s members are here to offer advice and support. I note that you have been looking in here for a few weeks so you will have noticed how valuable we find this forum. It helps us cope with the day to day issues we face because we understand what impact this disease has on us and our loved ones. I’m not going to repeat the good advice already offered but I wish you success with the counselling.

Best wishes,
Barry

Thank you Barry 👍

[Lynne K]

Hi lynne yes I got the full team looking after me , we have talked about adaptions and everything else , the kids know what they need too at this stage !! Thanks for everything,, I have told everyone of my diagnosis after two weeks but as soon as I did I just got so down and can’t get back up

That’s good Pat. Take good care of yourself and as others have said ‘take each day as it comes,’ Lynne x

[Beemer]

I feel for you Pat, especially at your age and your childrens ages. My children were in their 20s when I told them, but my wife is taking it the worst.
I accept what I have, and it does not upset me anymore , what upsets me is talking about it to relatives, as I hate seeing them upset.

I have been amazed at what help has been available for me and my wife, and we have tried to make the best of what is being offered .

[Deb]

Hi Pat and a warm welcome to the forum.

I wish I could give you a big hug... im so sorry for your diagnosis. Its such a shock and it takes a long time to come to terms with. I sometimes think the mental demons are as bad as the physical ones. Well done for reaching out and accepting counselling... I really hope it helps you.

Its really good advice to take one day at a time but its easier said than done. We all want to look ahead and have hopes and dreams for the future. However noone in life knows what tomorrow will bring so really we should all be living for today.

I am sorry you're finding it hard to eat and I appreciate that the more you know you should maintain your weight the harder it is. If I am feeling low or having an off day I really don't want to eat... I have little and often snacks and milky drinks.

Love and hugs to you,
Debbie x

[Ellie]

I don’t think any anti depressants will stop this pain of my breaking heart

Nothing will stop the pain Pat - you have been dealt a rotten hand in life - but the meds and counselling are 2 tools to help you to rationalise that heartache and to help you cope better with your day-to-day life, as well as to help you be a daddy to your kids and be a partner for the good lady.

It's as hard as hell but you'll get there, so accept all the love and help on offer. You will live, love and laugh again. 💜

[Mary C]

Hi Patw
I guess you are in shock and grieving for anticipated losses.I too felt shocked but like many others settled with time into the diagnosis and looked at my support network.I find , hubby, family, friends are a great support to me.Along with this the hospice palliative care team have reassured me of their support as things change.Not sure if hospices will reopen their services such as offering people a day to go in for various therapies and support to you and your partner.

Added to this I also have zoom sessions with a psychologist arranged via hospice team.
Overlaying the support I get I am a committed Christian so get support from my faith.
With this support I gradually was able to not let the MND overwhelm me as I have a goal like others to make the best of each day. Of course there are times when I feel tearful or fear creeps in.

I also find this forum offers support which I value plus I do a zoom support group with other Warwickshire people living with MND.
I too have lost weight so trying to eat more as struggling with the supplements( I have tried quite a few).My appetite has diminished recently after almost a year since diagnosis.
I can relate to you feeling overwhelmed and give yourself time and be open with your counsellor.
In the first few months I focussed on what I could do practically to distract myself.(sorting benefits, getting blue badge etc
You just have to go at your own pace and explore what help might be useful to you both and your family.
Best wishes
Mary