To think my husband is gravely ill at the wrong time? Thread 2

[MyOtherCarIsAPorsche]

Continuing from 1st thread.

How do you want your future life to be? It won't be the same as your hopes and expectations before your husbands illness, but you still have a life to live. You need to think how you want your days to be then put in a plan, plus the hard work to get there. Yes, I know it is soooo much harder than that. I struggle every day to live my life like I want to but you have to start with small steps - that don't include watching telly all day 🙂 You're seriously depressed and anxious - who wouldn't be? It's easy to just sink under the weight of those two illnesses and it's very hard to keep your head above water. There have been days when I felt I'd deserved accolades to just brush my hair before climbing back into bed. But you must push forwards and not let your husband's illness define you as he has allowed it to define him.
My mum has dementia, we're in the throes of putting her into a home which she doesn't want. She's scared of living her life as it is and scared of change. She has no choice because of her illness. You do have a choice. I'm not suggesting you leave your husband, that's too big a thing for anyone else to decide, but you do have to change your outlook and live your life now while you're still able to enjoy your children, grandchildren, friends and a beautiful world. They are all missing you.

Please go and find the best possible psych you can. Pay and get help immediately please. Your mind needs a total reset. You could probably do it online to avoid leaving the house.

And get a really good agency in for a clean.

Those two things are in your power to change.

Do you ever read back over this thread. If not give it a go. You are an amazing person. But you've been spread too thin for too long. And now you are broken. Time to get fixed. And you won't be able to fix yourself I'm afraid.

What wally said .There are some things in your control - aid for your mental health and help with cleaning .

Please please talk to someone - it's good to talk ! You sound depressed / PTSD

Here you are OP ! I looked for you yesterday but the thread had fallen off my list.
I’m so sorry that you are in such a dark place. Things will get better but you need some help for depression. Wally wobbles is right - you have spent you so much time and effort this year fixing others that you have missed that you are broken.

I’m sending you all my love and strength- dig deep . Your old self is in there still.

Re: family party, it is ok sometimes to listen to your body and soul if it’s crying out for some down time. You don’t sound like you have the energy to put on your Party dress and face.
I’d have a migraine. Make a list of gentle things for you - warm bath, looking at photographs, cup of something warm and lovely . Walk somewhere- kick some leaves. A book for escapism.

Could you make two appointments - GP for antidepressants and an online counsellor to chat?

Op, you've been looking after everybody else and forgotten about yourself. Please give yourself some love & kindness. You're an incredibly strong and kind person. But I really feel you need to take care of yourself and find who you want to be again. You've still got a future ahead with your children and grandchildren, you can't live it like this.
Your children and husband have so much going on that they may not realise but we can all see the you've lost your spark for life. Please speak to the gp/therapist.
You've done so amazingly to go through all this, but you need so love and attention now.

I’m worried about you OP . In your last post you sounded so lost. Sending love xxx

@olympicsrock

You have been such a saviour - I will always be eternally grateful. I do hope that this thread will continue from time to time.

And that goes for anyone else checking in. People/humans are basically good, kind, supportive ....

Those who are contrarywise - well, we've all trodden different paths.

I'm possibly feeling empty. Done.

I was very confused this morning. I had set off to my daughter's house. I had to stop the car and ring my daughter because I had no idea which road I was on. I daren't continue for the thought of getting more lost. I was describing what I could see - my daughter passed me on to her partner. I think she was upset. I couldn't even describe where I was - just bleak road, hedges, fields, trees. I couldn't remember any places/things that I had passed. I think it was because it was dark and I didn't recognise anything. But I've done the journey many, many times - all year round, all weathers. He located my phone and told me how to get back on the right road. I'd gone too far down one road and missed a turn and it threw me. I was really scared. Can't even concentrate on driving. I was torn between retracing my journey to see if I had caused any accidents and carrying on to my daughter's.

My daughter had booked an ice skating session. I pushed the twins in their pram whilst my daughter took her daughter on the ice. I couldn't watch them as I felt like my throat was closing - a choking emotion. I was crying walking around. All these people carrying on with their lives whilst I stand to the side and watch.

It's the party this weekend. Can't use the migraine excuse as it's well known that I haven't had one since I started hrt last year. Sort of hoping I fall down the stairs so I have a good excuse not to go. The following weekend my other daughter has booked for the children to see Santa - I usually go with them. Bloody hate this place at the best of times - young children's amusement park type thing. Need to get out of that as well.

I'm not sleeping too well - but I just seem to keep going - on and on and on and bloody on. I've been 'watching' Sewing Bee on a loop but not seeing it.

On the up side - I bought a 3kg bag of haribo cola bottles whilst out today - unfortunately I can't taste them. It's just chewing for chewing's sake. It's my pathetic attempt at trying to enjoy myself.

I have to pick some click and collect stuff up tomorrow (oops today) for one of my daughters. I know what they are doing - trying to keep me occupied. I can do without it. I was frozen today - just want to stay home and keep warm.

No point in me blathering on ....

Can you tell I'm from Yorkshire?

Oh @MyOtherCarIsAPorsche

You sound so lost.

Please, get some counselling asap. You need help

I wish I were close, so I could give you a RL hug xxx

I apologise if this sounds unkind but for heavens sake you don't need an excuse not to go to the party .Tell the truth -say you're exhausted and stressed and can't make it .
Don't go the to Santa thing ,don't pick up the shopping .Tell your daughter you know she's trying to keep you busy but you got really cold yesterday and that you're going to take things easy today .
Why won't you look after yourself? There are no prizes for being worn out and ill.
You have a difficult situation with your husband and you want to be there for your daughters and grandchildren.
This can be done without you becoming ill .Lead a seperate life from your husband ,detach from him .
You won't be the only one having to live a life with someone who is not or is no longer the person you loved .It can be done ,honestly .

Leading a separate life - what I'm trying to do. Just feels lonely. It's certainly different.

Christ on a bike! How pathetic do I sound?

My nana would say - y' need putting in a bag and shecking up!

(Yorkshire for shaking)

I'm going now me .... for a sheck.

It's hard myother car ,big hugs .Time will help ,early days .But you need all your physical strength to help you cope with the awful emotional upheaval .

You have reached your limit. I recognise from my life both getting lost while driving and hoping for an accident that allows you to stop. They are signs that you can't do any more. Your mind and body are telling you to stop, and if you don't obey them, things will only get worse. I ended up in hospital. You don't sound pathetic, you sound desperately overstretched and unsupported, and probably at the stage where you can't make a decison about how to find the care you need.

Can you go and stay with your daughter for a week? The events of this morning have shown her you are under too much stress to go on with all you are doing. Staying with her could be presented to your husband as "being on hand for the kids" so would avoid any difficult conversations.

You need to stop, and rest, urgently.

such a good analysis and advice from pelagra

I have followed this from the beginning.
Op you are amazing to have got this far and still be able to put one foot in front of the other but it really sounds that now you need to get some help for you
Please will you book a double appt with a GP you trust and tell them everything x

You need a break, you are important in all this so start putting yourself first.

Where in Yorkshire ? - I'm West Yorkshire, happy to come and give you a 'shake' and hug !

Hi OP, I'm so sorry after reading your most recent posts, you've been through so much, it really sounds like you could do with some care and respite of your own. I agree with other posts about some therapy and also wondering if maybe a day with your daughters or some friends at a spa might be something nice to look forward to?

Regarding your grandson who has seizures- and I apologise if this has already been suggested- but what you describe sounds very similar to my son who is frequently sick and has seizures, especially at night time and when ill. His blood glucose was also noted to be low every time he had an episode and he was diagnosed with ketotic hypoglycemia. He is now under a metabolic consultant, dietician and paediatrics. It sounds like the hospital are exploring similar avenues, if not this condition specifically, but maybe look this up? Feel free to PM me if you have any questions x

@LucyAutumn

Oh - he sounds similar.

My daughter always thought that whatever is happening is happening mostly at night. She's up and down constantly with him - and then has to go to work the next day. She's always exhausted.

He thrashes about in his cot - she doesn't want to put him in a bed as he will keep falling out. If he's sick he will behave as if he's in a trance - my daughter can change him and his bedding and he just doesn't move and stares into space.

His behaviour is absolutely off the wall. My husband can't tolerate him for more than 5 minutes. Every so often he is the most smiley, cooperative, joyful little boy - full of fun and laughter.

He can be playing and suddenly drop to the floor - his body twitching. He frequently puts his head on the floor and pushes himself along - we think he has head pain when he does this.

His skin is mottled/tinged on his face. His lips can often appear blue.

We thought that his behaviour is due to not sleeping - we think he also has nightmares where he appears to be absolutely petrified. But could it have something to do with a drop in blood sugar levels? He tends to eat well. In fact I would say he's a bit greedy. If you allow him, he can eat/gorge until he's sick. He's quite small for his age - he's just turned 2 years and is just in 12-18 month clothes. He has a large head in comparison to his body.

He has a very high heart rate when he has 'episodes'. He can twitch, jerk and shiver after which there's a period of unresponsive time. After that he's usually very tired.

We're all very concerned about his behaviour. Nursery tend to tell his mum about his uncontrollable behaviour all the time.

I find it bewildering that we don't have any answers after a year of waiting for a diagnosis - were worried about these episodes damaging his brain. The falls he has are probably also damaging - he's constantly knocking knobs off his head.

I'm almost relieved that it could be as simple as just having to manage blood sugar levels. That would be a good outcome.

I'm so grateful for your input - thank you so much 😊

@notapizzaeater

I'm North Yorks 🥰

I'm finding all the support fantastic.

X

I’m glad we have cheered you up a little. Your talk of the sewing bee inspired me to make a little Black Friday purchase - my first sewing machine!
I’m very excited . PS - I love cola bottles too.

keep talking to us ! You have a team of kindred spirits who will give you a good sheckin in a bag or a hug x

Oh wow! @olympicsrock

You'll be on the sewing bee in a flash!

I made my first stretch top last year. Then straight away I bought some navy stretch velour and it has stayed in the bag. I have my mum's very old Brother machine and an over locker.

My goal is to make a Burberry coat one day.

It's Terry's chocolate orange tonight - I've usually knitted lots of chocolate orange Santa hat covers by now - haven't bothered this year.

I'm feeling a bit brighter - I had a day off and cleaned the kitchen floor. My blue jeans now have white knees.

You are funny with your white knees! 🤣 I have bought a bells and whistles heavy duty brother machine, thinking that I would need that for curtains etc. My goal is to make some Roman blinds. I haven’t really used a sewing machine apart from making an apron when I was 12 and then a tote bag at a class 5 years ago.

I am quite excited though - am sure I can do it so watch this space. I love the idea of a Terry’s chocolate orange with a Santa hat. I always had one in my stocking - still one of my guilty favourites.

A Burberry cost would be very fine! I bought a fabulous tweed coat with a gorgeous red silk lining ( tailor’s label inside) for £20 from a charity shop recently.

How are you doing @MyOtherCarIsAPorsche . Sending love xxx