Support and friendship For Those Estranged

Jaffacake sorry this is a saga . I will get to the point in the end.

I looked after both parents and mother in law until they died. I hated my mother in law for 40 years but I couldn't not look after her even though she denied she had a son or 2 grandchildren and refused to go too their weddings. I was her emergency contact and that of my parents .

After my husband died our home was just a house . I wanted the children to live their own lives and then going made me happy because I knew they were with the people they loved. And I loved their partners .

We all do what our consciousness allow and I couldn't leave my parents and mother in law alone when they needed me.

When my husband died half of me died with him and haven't been whole since . I am lonely but only for him I like living on my own .

My mom lived with me the last 18 months of her life she had cancer and dementia. It was only after mom died I realised how much my health had suffered. After the funeral I thought life had caught up with me then thought I had flu turned out I had jaundice caused by 2 of the tablets I had been on since 1992. I was seriously ill for 5 months . But it was my wake up call my life had to change. Only 3 things I wanted to do move , lose weight and get fit.

Simple needs . I wasn't brought up with money and was never ambitious for me . Things are just that things it's people that count.

I was lucky and didn't have lasting liver damage . Finally at my daughter's insist at the hospital while I was in for 5 days they got me an appointment after my gastrologist discharged me. And he told me people with my bilirubin levels normally died. Wake up call number 2.

Saw the neurologist last 2017. He only ran all the tests I had before still no diagnosis. Told him they wouldn't show anything but what did I know.

I put my house on the market March 2018 house sale fell through twice. But the bungalow I wanted to buy they kept for me so finally moved here 2019.

The healthcare here is brilliant and finally after many visits to GP and A&E . I saw my wonderful neurologist in January 2020 at the Walton Centre and he put me on Clonazepam within 2 weeks after 32 years of limb jerks and 4 seizures my limbs where finally still and have been since . My body does lots of weird things. He sent my blood off for my whole genome to be genetically tested . But didn't get the results until March 2022 so 1st April 2022 finally out I was born with hereditary Hyperekplexia gene mutation SLC6A5 type 3. It's a mutantion in my brain receptors and it's rare. It's in my DNA . My old neurologist could have had the test done and he could have put me on Clonazepam.

My new GP by sending me to see my neurologist changed my life . My neurologist has never had a patient with it or any of his colleagues. Thanks to the rare disease society they gave me a link to a Facebook page started by some one with HPX it's world wide and we are now up to 1,023 members . I know understand why my body has done and does what it does is normal for HPX . I am not alone anymore only wish my husband had lived long enough to find out with me.

The gene mutation I have means my parents where carriers for it and 50/50 chance of having a child with it . I have it but am not a carrier so my children and 5 grandson's haven't got it or carriers . My brother and his 3 children the same.

My children where brought up with a disabled mom . When I had my diagnosis gave a copy to my daughter of my neurologists letter and sent my brother one . I text my son to tell him I was sending him a copy of my neurologists letter. To be honest I expected it to come back unopened . But never heard a thing no even at least you know what's wrong or glad you know mom. Nothing .

The hole is in the side of my heart but it's small so on Flecainide and Apixaban and I have paroxysmal atrial fibrillation which means I miss heart beats every now and then a have heart flutters and palpitations but not very often and I know just to relax and it's over . I get breathless but that's ok it's only if I have chest pains they will worry. And I don't get them.

Jaffacake2 - due to a long and involved story (years ago), of NHS incompetence, I have ended up with (amongst breathing problems), a neurological problem that mimics MS. It does cause problems.

I’m lucky that I have supportive ACs, although one lives abroad. It’s been doubly difficult since my DH died last year.

Your medical problems need to be talked about with medical professionals, and then you need to do what is best for you.

Discussion with medics should help you to decide.

One of your daughters is incapacitated so can’t really help for the moment.

I think you need to “put your other daughter aside” for now. Get yourself fitter, and then worry about her, if you need to.

Meantime, work out how to push forward with your health issues.

Good luck - whatever you decide.💐

Smileless2012

Thank you DL, I could have done with that to listen too last night as the last time I looked at the clock before going to sleep, it was 2.50 am!!!

Well, all I can say is that it works for me. I usually end up falling asleep with it. I have given it to other people, and it’s helped them. Lack of sleep is a killer if you’re already stressed and anxious. Hope it improves soon. 💐

Jaffacake if they decide surgery will improve your life you must have it. Bugger the daughter who doesn't care for you. But your other daughter will be heartbroken if you refuse and die or end up unable to look after yourself. Even though she lives 200 miles away she loves you very much. The consultant won't recommend surgery if they didn't think it would help you . They will give you all the pros and cons . Plus what will happen to your body if you don't have it done. I don't know how old you are but if it will halt the progression of your neurological condition or improve your quality of life then if it was me I would jump at the chance. .

My husband always said quality of life is better than quantity . We had decided to end his life if the pain got to much for him we knew what dose would kill him our McMillan nurse told us. And I would have done it to and bugger the pro life lot who believe life at any cost . I have watched 3 people die it's not peaceful or beautiful it's horrendous it was in my experience.

Jaffacake have you told the daughter who cares about you about the prospect of the operation . If not you must . I know you are worried about her but she wouldn't forgive you if you didn't tell her.

My children both told me off for not telling them how ill I was before my jaundice was diagnosed and made me promise to tell them if I am not well. Have to post battery about to die .

whiff - yes, quality of life is all important. I’ve got a Living Will which makes my wishes clear.

When, after Covid, the hospital told me that DH had been left completely brain damaged, would never be able to walk, talk, eat, drink, move etc again, if I really wanted them to try and ventilate him, I knew I had to let him go, and gave permission for him to put onto end of life treatment.

We had always promised each other that.

It doesn’t help with the guilt, but I still (logically) think I did the right thing.

Thank you for your replies.
My case is being discussed at neurosurgery St George's hospital with input from Queens square neurological hospital. It is complicated as I also have a mast cell disease which causes me to go into anaphylaxis with different foods and drugs. The surgery is extensive affecting brain and spinal cord . I am waiting for decisions as to whether it will be offered to me,then I will have to decide whether I want to go through the trauma or just have some form of palliative care.
A friend collected me today to go for a coffee at my favourite outdoor pub with a lake and family of black swans. It was lovely to be out but exhausting feeling tired all afternoon.

Jaffacake I saw Professor Edwards there in 2019 before I moved . He was lovely.

Jaffacake there is a charity called The Brain Charity it's in Liverpool but it helps people all over the country. I have just read there about your condition. Have you spoken to anyone with your condition? If not I suggest you Google the Brain Charity and speak to someone there . They will probably know someone with your condition you can talk to.
And find out if they had any surgery and how they got on. That way you will beable to make your decision easier . Please phone them tomorrow

The Walton Centre is the top Neurological hospital up here. And I am so lucky my GP sent me there .

If it wasn't for the Brain Charity I wouldn't have gotten PIP they got me a solicitor pro bono so I could go to tribunal. The solicitor they got me told me to apply for UC and I was awarded the health UC as well. They will help you and the charity has been going for 30 years. I would hate for you to be alone .

Also they will make sure you get all the benefits you are entitled to . Please don't be put off because it's so far from you. Without their help I would be at the my wits end about money .

Jaffacake.

Brain Charity phone number is 0151 298 2999. They will help you.

DiamondLily you did what your husband wanted never feel guilty. I had to tell mine to stop fighting as he couldn't breath even on full oxygen . He did a few minutes later. I said we would be ok but there is never an ok or alright or any positive words to take away the pain of them dieing. But as I have said many times on bereavement threads it's the price we pay for love. But we would have all been the poorer for not being so loved and loved in return. Many on here know what that pain is like. But for you it's so recent. My daughter and son in law knows my wishes. Both of them hold both powers of attorney for me . I trust my son in law as much as my daughter and know he would act as she would.

Your husband would be proud of you especially with all that's going on with Miss D and everything else . Please take comfort in that . 🌹

Smiles while looking forward to your move and already having your new at the back of your mind you know the place where the worry gremlin lives . He decided to have an outing and it brought back memories of why you moved to your home you are selling . All the trauma you went through with your son living so close by and him walking past your old house with your grandchild but not being able to talk to him or hold your grandchild. The cruelty you and Mr S endured it's no wonder you were both diagnosed with PTSD. Plus selling your home the gremlin brought back all the stress back about selling and buying you went through last time. As you well know it takes time for the sale to go through. Thankfully you already have your new home and your keys so that has halved the stress for you . And you and Mr S have gotten yourselves well organised. But as you well know until contracts are exchanged on your present house it's not a done deal. Hopefully both your solicitor and your buyers solicitor don't drag their feet and the surveyors report they get quickly.

The couple will love looking round your home again today . Have you made a list which you are keeping and what your friends relative will have . So you know what is for sale if the couple wants certain things.

It's both an exciting time but also nerve racking. I am glad you and Mr S decided to move and you will have many years in your new home plus your dogs will love it. You still have your apartment to go too when you want . Plus the added bonus having the lodge your bills will be cheaper as you already know living on one level is easier and easier to keep clean and heat during the winter months with your apartment you have all year round . If I remember correctly your old lodge you could only stay for so many months a year.

Having problems with my body at the moment which is giving me more brain fog moments . Only realised writing on my HPX group this morning things got worse after I had shingles in April it's been happening slowly so didn't notice the changes . But my skin has become more sensitive and a mark appeared on the back of my left calf last week it's not grown but cream hasn't faded it. Plus having problems with water retention which has made my BP go haywire. I am not worried but annoys the hell out of me . Have an appointment to see my GP on Tuesday. Could have seen on of the others 2 weeks ago but she wants to see me. So being recoding my weight daily so she will beable to see how the weight gain has effected my BP which I have to take daily since 2017.

As per usual veered off topic . Panic attacks and anxiety levels go up when buying and selling a house. I think it's the second biggest cause of stress after bereavement. For me deciding to sell my house was easy as it wasn't a home after my husband died and I wasn't happy there plus I rattled room the place . Living on my own didn't frightened me but because of looking after others I had no life of my own I existed not lived.

Moving changed all that once I decide to do something I have to do it . So putting the house on the market was easy . Finding my bungalow with the help of my children long distance was fine. They told me which areas to look and helped me cut down my list of 20 bungalows to 6. My bungalow was the third I saw and it felt like home. I could see all the faults but knew I could get it as I wanted. I offered £10k less but they wanted full asking price which I was prepared to pay. So glad I did. Unfortunately my house sale fell through twice . I have never cried so much since my husband died. My solicitor and estate agent both had me in their offices crying. But I was lucky the executors of their mom's will kept the bungalow for me . Getting rid of things was easy as it decluttered my mind and house and I let go of things and feelings I had held on to for far to long .

Selling and buying takes so long when it does have to . Everything is done electronically you don't even had deeds now only a letter with a reference number once exchange and completion has gone through.

I have everything thing crossed for you Smiles that the sal e goes through as quickly as possible. But your buyer needs to press their solicitor to keep pushing council for searches and everything else.

If I hadn't moved I would still not know what the 2 things I was born with and having treatment to help with symptoms. Yes I lost my son but that was his choice not mine. But that's the only negative. I have many more positives and I am living my life to the full . I have a home again and brilliant friends and really good neighbours. See my daughter and grandsons regularly. In fact coming today to change my bed with my youngest grandson. Not been able to do it for 2 years now due to my HPX.

Busy day baking and cleaning as my brother and sister in law coming for the day tomorrow. Their dog is staying at home with my sister in law's dad who lives with them . It's to far in a day for her to travel . So means I am taking my brother to my craft group as well. Hopefully I will be going to stay with them later in the year. But like me their moved changed their lives for the better . Better healthcare,living on one level has made life easier for my sister in law who has MS having her dad live with them relieved the guilt and stress when she couldn't help him look after her mom until she died. Plus I have a second dad as I have adopted him 😁. His got the same name as our dad. I love my sister in law like a sister which sounds creepy but I do. Same as my best friend love her so much. Better stir my stumps and get working .

As usual I know this is all over the place but my foggy brain is causing my thinking disordered.

Morning Whiff, love your morning rambles, I hope your GP helps with your current problems, you cope amazing well, enjoy your baking day, I just wish I lived next door to you so I could be chief cake tester 👍
Good luck with the house viewing Smiles,

Jaffacake2

Thank you for your replies.
My case is being discussed at neurosurgery St George's hospital with input from Queens square neurological hospital. It is complicated as I also have a mast cell disease which causes me to go into anaphylaxis with different foods and drugs. The surgery is extensive affecting brain and spinal cord . I am waiting for decisions as to whether it will be offered to me,then I will have to decide whether I want to go through the trauma or just have some form of palliative care.
A friend collected me today to go for a coffee at my favourite outdoor pub with a lake and family of black swans. It was lovely to be out but exhausting feeling tired all afternoon.

If it’s St George’s in London, they really are excellent with anything to do with the brain.

A friend, in Kent, was sent there after she had two brain haemorrhages - she’s much better now than she thought possible, so I’d be guided by them.

Good luck with it. 💐

Whiff thank you for the brain charity phone number. I have just phoned them and someone will call me in a couple of weeks. Haven't heard back from hospital yet so not sure what's happening. I feel the 4 walls are closing in on me as am unable to leave the house without someone with me. This is not good. Very poor balance,brain fog and just not wanting to be here. All I want is a loving family here but it's not going to happen.
How do you all manage to get through these dark times ?

Just back from my holibobs, had a lovely time, weather good bar one morning.

Just read Smiles post re stress, you know what I would advise; daily yoga & meditation & pranayama [breathing technics], it works.

Allsorts post very good advice too.

Only read these 2 posts, back tomorrow, need to take Joey walkies.

Lots of lovely posts for you Smiles with good advice too.

I will listen to that CD later DL thanks for sharing for Smiles

So sorry Jaffacake If you can get one of those 'super surgeons' from the TV programme I watch, I would say go for the surgery, you clearly can't go on as you are.

Jaffacake glad you phoned the Brain Charity they are lovely and will help in anyway they can . Thought this might make you smile. My brother and sister in law coming for the so decide to make a chicken and veg pie. It will be topped with ready rolled out pastry as I can roll out anymore. I am used to cooking for one. Think I went a bit over book with the quantities for 3.🤣🤣🤣🤣

Yogin glad you had a brilliant holiday. X

Jaffacake2

Whiff thank you for the brain charity phone number. I have just phoned them and someone will call me in a couple of weeks. Haven't heard back from hospital yet so not sure what's happening. I feel the 4 walls are closing in on me as am unable to leave the house without someone with me. This is not good. Very poor balance,brain fog and just not wanting to be here. All I want is a loving family here but it's not going to happen.
How do you all manage to get through these dark times ?

I’ve not had the same problems entirely, but due to losing DH, I’ve certainly had the brain fog, and the stress has affected me physically. My health is very erratic at the moment.

I’ve been in the darkest of times (really did wish I was dead) but I’ve learned just to put one foot in front of the other, and get through that day.

As the old song goes: One Day at a Time.

Some days are better than others - and distraction of any sort, is a great help.

Hope you feel better soon.💐

DiamondLily and Jaffacake I had a very wise man he knew what I needed to live without him and it was a series of promises. I have kept everyone. The most important was to live the best life I can. Moving here I finally am. But because of family needing me I had no life I existed. Lost track of the times I cried that much my eyes where rubbed raw. It made my chest hurt because I cried so hard. I screamed out loud this shouldn't be my life . But not once did I want to die because then I would have betrayed my husband and the promises I made to him . There is only one thing I would not promise and that was to find someone else to love and not be alone. He didn't want me to be on my own but I love him as much today as ever and my grief gets worse.

When grief overwhelms me even now I have a good cry and shout at him for leaving me but then I see him with that stupid grin and his face and I know I am going to be able to face another day without him .

Physical pain can impact on your mental health and vise versa. My son accused me of hiding things about his dad's cancer in his email. I asked my daughter at the time if she felt that way . But she said no because she knew dad didn't want them to know . She said she knows how hard it was for us both shielding them from the worse of what he suffered. Wise daughter as well.

My promises to my husband mean more to me that my son's vile accusations and assumptions.

Never bottle your feelings up because you will only hurt yourself. And never give up to live your life the best way you can. It's easy to give up but you both and everyone here whether alone or with a spouse or partner have shown how strong you are but opening your hearts to help others .

You are courageous to coin a former member of this thread all Warrior Queens 👑

whiff no, some days are difficult but I can’t do anything other than plough on.

My ACs have been great, they know how I miss DH, but they want their laughing and positive Mum back. They seem to think that if I’m occupied with their stresses, I’ll have less time to worry about my own lol. 🙄

My ex seems to see me as some sort of sounding board for his stresses.

God, I don’t know - I feel so worn out sometimes but I guess they keep me going, one way or another.

Hey, ho. 🤐

You have more than fulfilled your promises to your husband Whiff.
Those pies look good, I'm sure without much persuasion your brother and sil will take one home. Hope you have a great day.
DL, you sound very stressed and tired, your ex doesn't help matters. Can't you take a few days away from all their problens and concentrate on you, as your tank is running on empty.

Morning everyone.

How are you this morning Jaffacake? As you can see from all the responses, this is the place to come too for advice and more importantly support.

Where would we be without your rambles Whiff, they brighten even the darkest of days . You're absolutely right about the 'worry gremlin' and just reading that has helped to calm me down and put everything into perspective; thank you.

I've been thinking about the wave analogy I use when the things are hard, how the wave will wash over me and although I'll be wet through, I'll be OK. I'm now thinking about riding the waves of stress and anxiety when they come. Standing safe and secure on a surf board and riding them safely back to shore.

I've got as far as picturing myself serene and svelte in a body suit!!! If only .

There's no way I could live next door to Whiff and be a taster Bridie, I'd end up the size of a house as just looking at the pictures of the wonderful things she bakes and makes, makes my mouth water.

Glad you enjoyed your 'holibobs' Yogin and I hope little Joey did too. I'm doing breathing exercises and also warm ups for my voice when I have the time because that helps focus the mind and even 'singing' the exercises is relaxing.

No more singing lessons and just the church choir when I can make it so I need to practice as much as I can so not to undo all the work that's been done.

It sounds to me DL as if you could do with a few days to yourself, maybe take yourself off somewhere for a couple of nights where you can just take time out for yourself.

I wonder why your ex 'needs' you now as a sounding board for his stress . He must have managed all these years so should be able to do so now.

Our buyers came round yesterday to see what they want to buy. Not as much as we thought but we now know what the auctioneers will be taking off our hands.

It will save us money if Mr. S. dismantles the oak 4 poster and 3 matching wardrobes which he says he's going to do, but it's a big job.

I've told the buyers if they want a light up glass display/cocktail cabinet in the upstairs living room, they can have it for free. It's not what people want nowadays including charity shops, but is a lovely piece of furniture and if they don't want it, Mr. S. will have to take it apart and put it in a skip.

We must have had it for 25 years and I hate the thought of it being dumped; silly isn't it.

My dear friend is coming on Saturday until Thursday and her brother who we're giving a lot too is coming Saturday afternoon with his D to see what he'll be getting.

I hope they'll be pleased, I'm sure they will. They'll literally have everything they need to set up a home of their own once his accommodation gets sorted.

Have a good day everyone and don't forget it's polling day. When I mentioned that to Mr. S. this morning, he'd forgotten!!!

Looks yummy Whiff, if you can't post it to me, then freeze for a later dinner for you xx

Just had an appointment through the post with neurosurgeon at St George's early august. Not sure if I will be offered surgery or if on discussing the risks whether I will consent. But pleased to be given the opportunity to talk through my condition and possible consequences if I don't have surgery.
My friend is coming over to stay with me for August so am pleased to have him with me. We had booked to go to Dorset on a caravan holiday with daughter and kids in August. She had previously said that she now no longer wants to go but that we can take the kids. My friend has told her he is unsure as to whether he can look after an 8 and 7 year old plus me with limited mobility. She sent a curt reply about feeling distant from both of us. It might be just me and him in an 8 bedded caravan by the sea. Sounds preferable the way I feel at the moment. Don't think I want to be going off to children's activities,would prefer a beer at a harbourside bar childfree !
My other daughter is slowly recovering from her bike accident. The cab driver who knocked her over is being charged with dangerous driving.
Hope you all have a nice day and are able to vote. Sun is shining and all this will pass.

Whiff you are a shining example to all those bereaved on here, a strong lady, even though it's been so hard for you. It really pulls at my heartstrings reading how much you love & miss your dear husband.