Black Dog 17

HVDY how hard life must be for your nephew and his wife. People are expected to cope most of the time on their own. Respite care is good but help at home is needed too.
Wyllow your DGD sounds as though she is a loved and cared for child. Your son and his wife must find it hard to hold down jobs as well as looking after their family.
I doubt if the surgery would put Oromorph on repeat
Wyllow they usually have to monitor those drugs more carefully. DH has some they won’t put in repeat either.
Pharmacy would deliver if we were unable to get there but as we can we are expected to collect. They know me and DH by sight now. They store meds alphabetically which means ours are always on the top shelf requiring a ladder to reach them. I have suggested in the past them move us down below. We are in most weeks.
It’s easier to care for others when we’re retired than when trying to hold down a job I think. So many demands on our time. Now if DH has a problem sleeping at night we just sleep later the following day. Wouldn’t have been so easy when he was at work.
Thank you for starting the new thread. Wouldn’t want anyone to get lost. Good idea to post a link.
Sweetpeasue my sons cook too. I think the younger generation is more sharing responsibilities. Now wives often work to then they share housework and childcare.
Tell the receptionist when you speak to her that you have a hospital appointment in the afternoon and ask if the GP can phone in the morning. They should be able to cope with that surely. Hope the appointment with the urologist goes well. Is this the one you like or the other one?
Good your psychiatrist phone call has been brought forward. Hope they can prescribe some meds that help you.
I have just realised you’re all on Saturday and I’m on Sunday so I’m going in search of Wyllows new thread.
Take care all and find your way safely to the new thread.

HVDY That's so moving about your nephew's child. It must be so difficult for your nephew and his partner. I feel v sad gor these poor children with such disabilities. Like * Wyllow's* DGD you say she smiles a lot. What an inspiration to us all.
Oh it's wonderful to see baby's first smile. All these little developments are miraculous aren't they? Glad you had a nice time with them.
Doodle I see a lot of differences with my sons too, re the changes in generations. My DH never learnt to cook, he never had to as our roles were v traditional. Both my sons have had to learn as their partners/wife both go out to work ect. F2F Drs appts like hens teeth. Hardly ever had them before covid when other surgery's did. I can't pre-book anyappt but have to wait for a call back for Drs to ok it and they don't do that v much. Hence difficulty with continuing care. My Dr is on again Monday but awkward as my appt with Urologist that afternoon(following op) so if I get through receptionist I'll have to ask if he will call back on morning. Usually they just say any time during that day. Next appt with OT and trainee psycholgist on Thursday. Glad you and DH managed to dodge the showers and made it to Chemist and back. Have you thought of a wheelbarrow 😂.
Wyllow I have plenty of Tramadol as I only add 1 to Oramorph dose occasionally if v bad. But don't think theyll put Oramorph on repeat. I'll ask him if I speak to him Monday. I usually need it no more than once a day-*usually*. It is worrying if they stop it. Cant see why as I'm using it sensibly, but I guess I'm not seen as being completely reliable, ( keeping me safe?) Which was where DH came into my last appt(though I was asked). Anyway I didn't want MH nurse talking to DH alone. Think we both felt uncomfortable about it. Wish I had female MH nurse even though he's nice enough. Got letter yesterday to say Psychiatrist appt (phone call) in 2 weeks to discuss ADs. That appt was brought forward from middle Sept!
Thankyou for that link to Baroque music. Only ever played piano pieces but that singer was breathtaking. Such a pure sound. It led me onto other music and DH and I have listened for well over an hr tonight.

Hoping everyone has a peaceful night's rest. Love to all and not mentioned in my post.

this is post 999, so I have started a Black Dog 18 here

www.gransnet.com/forums/health/1326525-Black-Dog-18

Just wanted to add Doodle, when events with Ex1 happened we were only 55, and he was very much in the middle of a career that mattered a lot to him, and was essential financially, very different now he is retired and 71.

HVDY DGD is only 9 so it's currently a matter of after school and holiday care, both parents work, no official respite care it depends on the local authority.
But of course in the long term issues around care may lead to a home (?) as she won't be well enough for group home provision as not sufficiently independent. She smiles a lot too!
She is a happy child as there is a lot of love.

Sounds like your nephews child will have similar issues?
It's a care in the community problem. When school ends at 18 there isnt a lot laid on.

Sweetpeasue I'm quite shocked that you aren't getting your painkillers on repeat prescription. To have to hassle for them when you are close to running out just isn't right. *Adds another layer of worry. I really do hope you get to see a psychiatrist so you can talk about your overall drugs needs - they can look at the lot. Do push for that if you feel up to it. Ask, specifically?

Ideally, meds need to be on a list you can order from. Does the practice have a pharmacist? I get a phone call monthly from her to ask for whats needed.

(I also understand your situation not just because of Ex but because of a past major MH error/complaint/not good ending, but thats just mentioned as I understand frustration of coming up against a wall.)

Doodle that is very perceptive about age and change, it is really accurate. Ex1 was at a point in his career when he badly needed emotionally to try for something ambitious meaning travel a lot - and even being away during every week - very different now 16 years later - he was out from 7am to 8pm etc at that point. Now he is doing counselling to find his own lost bits, all credit.

Glad you managed to get out a bit. smiled at the "truckload". Can imagine it, all too well! would they deliver, or do you prefer not to have to stay in and have to make it out?

Waves to you all, other BD's x

Wyllow3 Your son and his wife must have a full-time job caring for their disabled child. My nephew (54) has got 13 year-old twins, one of whom is very disabled - she's got a form of Cerebral Palsy that affects all 4 limbs, has never been able to walk, sit, or talk. She's PEG fed, and obviously doubly incontinent. She has surgery this year to correct a very bad Scoliosis. Poor girl. Oddly enough, she seems to smile a lot. He had a bad stroke 2 years ago (just before I had mine but won't ever drive again and is affected down one side, the usual type of stroke, unlike mine). They get some help, including respite care for the girl, every so often. Do your son and his wife get any day centre care for their daughter? I hope they'll get the kind of help they all need.

Sweetpeasue I think today’s young men are more hands on fathers than in my generation where dad went to work and mum did the looking after the children, cleaning and cooking etc. Many try and balance work with home and being with their children. Certainly both my sons do.
Your ordeal at the hands of the surgery staff is certainly upsetting. I Hope you get your Oromorph but next time you get to have a face to face with the doctor you get on with try telling him how much the questioning by reception staff is causing you problems and see if there’s a way round it.
Glad you got out for your beach walk yesterday and saw a seal. How lovely. I’ve never seen on close up.
When is your next appointment with the MH team? I’m still hoping you get some ADs I’m sure over time they’d help with the stress even if not the pains.
nadateturbe how nice you buy presents for your DIL. Ours have birthdays soon too. Hope you have an easy weekend.
Wyllow I know it’s not really funny but I did for a minute think that S & D were a local shop a bit like M&S.
I think I understand now why your son and DIL were perhaps not as encouraging as you thought they might be when you were thinking of moving closer to them. Nothing to do with not wanting to help you or not loving you enough but probably more to do with the overwhelming responsibilities they have with your DGD. I know from my own family (though not anywhere near the same extent) how exhausting and draining it can be when the help that should be available isn’t forthcoming. I bet she loves chatting with you. You must care for her a great deal.
I wonder with your first Ex when you say he couldn’t cope with caring for/helping you, whether it is an age thing. When we get older and our bodies are less able we expect a bit that our partners might need help and a re more attuned to it than younger people. Sorry that might not make any sense.
I don’t have a Bf I would confide in really. Only DH. I have friends but not that close. He has always been my number 1.
I am another who analyses what I have said to others. How it came across. If I should have said or acted differently.
HVDY we did actually nip out between showers to walk to the chemist for our truckload of medications. Was quite mild but constant threat of rain. Have a lovely time with the baby and give her a cuddle from me.

SweetpeaSue Some of these GP receptionists are so bombastic and are no more medically trained than patients. Don't be put off by them, though. Keep in mind that you know far more than they do (obviously). As Wyllow says, we must all KOKO. You got out for a coffee, which was good.

Wyllow3* Glad you managed to have a swim (wish I'd managed to learn properly).

Son2 was going to collect something from is house, so he rang me and said DIL and baby were going to go to the shops (about 1/2 a mile from me), so I met them, and then we all went to Costa then back here for a while. Baby was good as gold and has just started to smile occasionally (6 weeks old next Monday). Hope ALL BDers are ok, despite this miserable weather x

HVDY Hope you have a lovely time with son, DIL and baby.
Yes, I'm quite annoyed about joining queue early morning, told by receptionist she would put me on list(most likely at least 6mth wait) for musculoskeletal or physio, when asking for Drs appt. DH told Id get Drs appt, only to get 1 from nurse consultant. Only touch n go if she'd give me the Oramorph Id ran out of, she'd no idea of my background or pain severity. I need the Dr who knows me so he can keep track of whats happening. I really crumbled yesterday morning. She wouldnt know about how distraught Ive been. Its got to the point I'm frightened of the receptionist drill. It's extremely interrogative now, not just average triaging.
Wyllow Oh yes I see how we absolutely share the same mix of emotions in that way, stemming from completely different situations.
Good you got your swim in though crossed fingers for staying out of that dip.
Nadateturbe Sorry about your awful tiredness and low energy. You must get so frustrated. Choosing gifts can be v hard, I dont underestimate that at all.

Pain lasted a long time though managed to get out of house eventually just for a coffee. Feel back to square one as in undiagnosed pain and fear of it continueing and no escape, which causes me to give in to pointless struggling. Like being in sinking sand. But I'm still here and I know others have same sort of despairing in their own situations. In that we are joined.

Spot on Wyllow3. That is the difficulty for both of you.
Sorry, have only read last post. Very little energy and had to use it buying a present for DiL.

Thank you for the recommendation, HVDY Noted.
Enjoy the family.

Sweetpeasue you say, "Feeling quite despairing but trying not to let resentment and anger about what lead to my situation as it will only make me mentally worse"

Spot on straight to the dilemma. (Both in terms of Ex, and interns of certain things that happened medically)

Yes it does make one worse: it certainly does me: yet so hard to come to terms with when out of your control: and it brings big trust issues when trying to move forward.

Yet we cannot move forward without enough trust towards those who are trying to help us: and its harder because its harder to actually access help than it used to be.

I've been for a swim and shop after getting out of S of D (Slough of Despond) this morning, hoping it doesn't come back to bite, as my *loody minded reaction to good things.

Doodle You're waiting for a reply from the consultant, too? I expect the strikes are a lot of blame for delays. The weather isn't so good today, so I don't suppose you'll go for a walk? We're having a day in today.

SweetpeaSue Your husband sounds very caring and concerned about you. What a palaver with the GP! I think mood swings - ups and downs - are common, it's a question of managing them when possible, and going with the flow when necessary. Lovely to see a seal! You're so lucky to live near to a beach. It's rained here all day so far.

Wyllow One place I'd recommend for meals, when your family visit, is The Fishpond. Freshly-cooked, lovely food (no microwaved stuff)

EllieAnne Hoping you're having a lovly lunch with your son and grandson.

Hope ALL BDers are having a decent day. Son2, DIL and baby are calling in, shortly. x

Wyllow So sorry about your dear granddaughter. That's a lot for her and your son and DIL to cope with. I'm sure your son understands your limitations but I understand also how you feel.

Domt believe meds are affecting mood as usually only take painkillers once a day if pain is bad.
After reasonable afternoon yesterday back to bad bladder pain this morning and irritated bowel. Feeling quite despairing but trying not to let resentment and anger about what lead to my situation as it will only make me mentally worse.

Hope everyone has a decent weekend despite atrocious weather. Torrential rain here.

Sweetpeasue re mood switches - do the strong pain meds affect mood?

HVDY Pleased you had a good day out. Thats quite a lot you did in one day. Hoping your legs will be ok tonight.

Yes Scaredycat GDG L will always chat on the phone. Usually about what she’s doing that day or what is on her large kids I pad, as she can see shapes if she is about 6 inches away from them.

Lots of songs and characters that I think she e perceives as real. But her mum my DiL is a speech therapist and has brought her world on gigantically, limited tho it is. I don’t think she can really distinguish teachers from friends or carers etc, just Significant Others. She used to be able to walk with a walker but as she gets heavier it gets harder, sort of drags her legs along.

Problem is really as she gets older - caring means administering 6 different drugs, coping with fits, and a lot of patience. Without extra carers the other kids just don’t get parent time. I cant realistically offer help. Its frustrating. Have to be preoccupied with own care - and the energy needed for the household in unbelievable! DiL’s mum and Dad have them to stay a bit, but they aren’t getting any younger either. They have money for carers - whatever the child version of PIP is - but it’s finding people.

There is a scheme that if the local council adopt, might help, they need to spearhead a campaign to get the council on board - find other parents, put political pressure on, etc.

My journey of thinking about moving up there to deciding “no” very much centred round the acceptance that parents will always have to prioritise her and the other children’s needs. They are my POA’s but couldn’t be carers. I’ve come to accept that they might love me but active involvement with nay difficulties - no.

I hope your day has been OK? Surprise parties…NO!…

nadateturbe you say, “often feel I must be a burden as my husband spends a lot of time looking after me. But really we know they love us and want to care for us, as we would for them. often feel I must be a burden as my husband spends a lot of time looking after me. But really we know they love us and want to care for us, as we would for them”

Spot on, and I’m glad. My first Ex couldn’t do that: his own stuff: we split 2007: he’s actually changed quite a bit and we get on well and talk just about everything over, but of course he has a partner with needs of her own. He his now a man who will talk about feelings but I’m not sure about responsibility.

You also say you say things to your BF that you might not to DH:

it is the way of things, women understand things in a different way.

Whiff - it was a lovely post.

Ellie Anne its quite hard to share horrible thoughts even with a counsellor until you know them and trust them. It must be really hard not to have an outlet where you feel you can be whatever it is you really are - and know it’s accepted. Bearing those thoughts alone makes them bigger is my experience. All the ver ybest for tomorrow.

Candy that is the most infuriating thing to happen. Hugs till you get back.

Sweetpeasue
Oh dear - what a really confusing runaround with the GP’s. You did well to get yourself out of it in the way you did. You say, “Not sure it's right for emotions to be so wildly changeable” - I honestly don’t feel there is a right and a wrong about it, its how you are - def worth sharing with MH people (I have flips like that at times as I’v said and it is relevant)

you are right about the relative anonymity.
And you say,”All eyes on you while you unwrap a present. I cant even take it in what the gift is as I'm so aware of my expression to the giver. Looking appropriately delighted. I must do a good job, too good a job unfortunately”

Oh my, that’s so true. Major issue with Ex as you can imagine. Each event huge pressure to be delighted. It’s not an issue in the family, as we ask each other what we want.

I know where it comes from for me - pressure in the family to be “happy happy”children to please my mum - always felt I had been brought into the world to make others OK.

I have never doubted from anything you’ve said that your DH loves you.

HVDY - Matlock is a day out driving distance, but I don’t actually know it well, but know many lovely spots in the High peak and the Derbyshire Dales. Oh my, what you say rings a bell, “Then after all those events, I go over conversations - why did I say that/why didn't I do that/what did he/she mean by that/what if I said the wrong thing”. It’s easier sometimes to avoid too much people contact to avoid the consequences!

Great day out there - probably when the family come to stay near Matlock last week in August they’ll go there and maybe join them. You managed to balance walking and legs well but it must be hard.
I shall point family towards the aquarium, good wet weather option.

Doodle everything you’ve sits so far has given me the impression of how close you are to DH and its very perceptive to say that more is possible when the children have grown if you are with the right person.

Yes today has been more quiet - slept the morning, had music and more bed all afternoon, every time I got up I got back in. Stopped fighting myself for awhile: or thinking back or forwards too much.

We are coming up to 1000 posts not too soon so as long as we all keep an eye open if we suddenly stop just look for BD 18.

Doodle You are such a good support for your DH. I expect its a generalisation but men are different in the way they show /hide feelings. Perhaps young men today are much more open than our own father's generation or our own.
I remember you saying you'd written to consultants but not realised there wasn't a response. Oh I'm sorry about that, so disappointing. All these people who need help--isn't it tragic what is happening with overstretched NHS. Glad you both had a river walk yesterday. Crossed fingers for decent weekend weather.
Wyllow That violin concerto--love that second movement. A long time since I've heard that. I bought some mags with cassettes of classical music a long time ago and was v taken with that one. I will look at the Baroque music link youve sent later. Strangely I dont seem able to listen to v passionate pieces right now. Hope the tummy doesn't keep playing up, there's such a lot of guess work in striking a balance.
Candy I write my posts on my phone but can't see previous posts unless they're on same page or Id lose mine. So annoying when youve lost your posts. Dont worry.

Well today has been 2 separate halves. Woke from dreams of being tortured then laid thete worryinv about facing receptionists for Dr appt. Back pain getting worse and when I get it get tummy pain and goes down both legs so wanted Dr to know and maybe send for XRay. Think back pain could be causing knee probs. Literally shaking calling them. Was told by receptionist, after saying Id back pain, she would put me down on musculoskeletal list. Said wanted Dr as I'd ongoing conditions, could be related. Said shed send me to physio! Just crumbled and DH took over and they finally said could have Dr appt. Later call came from nurse practitioner. Said we were told 'my' Dr was calling and explained ongoing situation. Said she'd talk to admin. Called much later saying all appts with my Dr had gone but he was on next Mon. Why tell my DH Id get a call back this morning from Dr? I was in a right state. (what's the point ect). The nurse terrified me as she was questioning me about my Oramorph request-I need it Ive only a few doses left. My own Dr understands this.
It stressed me out no end was on point of ringing Crisis- can't deal with it- what do I have to do to get Dr. Bad enough having to show half my backside to pharmacists!! (rash)

Sorry, but pulled self tog, took painkillers and went kut with stick for hobble on beach and friends, it was so beautiful the fresh air. I couldnt belive how different I felt. We saw a seal too.
Not sure it's right for emotions to be so wildly changeable but I'm ok at present.
You have made me feel like I matter here. Thankyou all. Do hope you all have a restful dreamless night. X

HVDY just read your post about your day. Sounds exhausting but very nice. I bet thé girls enjoyed it. I love aquariums. Hope you rest those legs tonight.

Wyllow DH and I spend a lot of time together it’s how we like it. He very seldom keeps things to himself. I have always impressed on him I’d rather know than let him worry on his own. I think that happens more the older you get. When the children have grown and you’re on your own. When you’re younger there’s always so much going on sometimes you don’t even have time to think.
DH and I lead a very quiet life so any thing out of the ordinary (even a Waitrose delivery) is a big event that needs planning.
It’s easy to get anxious about anything that involves something different. It is also common that if you do face up to thing you can enjoy yourself when it turns out better than anticipated.
Glad you had a good sleep and have had a gentle day today.
Thanks Whiff for your lovely posts. Always nice to hear from you. No one is a fraud here. All welcome with any problem in life that causes them concern. What some would deem trivial can be another’s cause for despair. Who are we to judge. Just support and listen is the thing.
Ellie Anne how lovely your son and grandson are taking you out for your birthday. Please try and relax and enjoy it. That’s so nice. I won’t ask when it is but sending your the very best Birthday Wishes for the day.
HVDY difficult sometimes to find something to do during the school holidays when it’s raining. Outside you can have fun doing anything but when it’s raining you need an indoor activity. Hope you found somewhere nice to go.
nadateturbe as one who is a carer I agree with your sentiments. I never feel it is a burden to look after DH I would be lost without him.
Thanks for telling us about your trip in Newcastle and the exhibition. I love that the young man wanted to give you a hug. Not a common thing with someone who is autistic.
Lovely picture.
DH and I are red wine drinkers though I like a glass of white when it’s hot. (Weather I mean. Not the wine)
Scaredycat the cafe we go to is the other side of the river and at the moment neither of us can make it that far so we just walk along the riverside and look at the boats and if we need to we can have a sit on one of the benches.
I agree we are often not looking forward to an outing or meeting people but then find when we get there we enjoy it more than we think.
Have you anything planned for the weekend ?
Candy glad to hear you’re ok. Such a pain when you lose a post. Hope you get your iPad fixed.
Sweetpeasue what a lovely post. Your DH sounds a kind man. I’m sure he wishes he could do more to help.
Hope you have a good evening.
We’ve been out today visiting family. Had a nice catch up as not seen them for a while. Got caught up in long traffic queue for roadworks which seem to be all around us at the moment. Good to get home and relax.

SweetpeaSue I'm like that when anyone gives me a present! I hate to be the centre of attention, hate anyone looking at me. I must have always been like that, as I can remember how uncomfortable I felt having the wedding photos taken, and that was 43 years ago (I was young and slim then, should have felt good but didn't).

Had a really good day today - the weather stayed fine, all sunny and dry all day. Picked up Son1 and girls, went to Matlock Bath. Pub lunch, walk along the main road where all the shops are, then went to the aquarium, also walked along by the river, the kids had ice creams and went on the park. Took them home at 7pm. Legs felt heavy but I kept sitting down.

Hope ALL BDers have a relaxing evening x

nadateturbe That's a beautiful picture, and the photographer IS talented.

Wyllow3 Hope the extra sleep made you feel better. Thought of you today, when we went to Matlock (you're not far, I think?)

ScaredyCat Had a lovely day, thanks. The anxiety before every single day out/day centre/visit to or from anyone/appointments, etc., drives me mad. Then after all those events, I go over conversations - why did I say that/why didn't I do that/what did he/she mean by that/what if I said the wrong thing - it's draining. Hope you've had a good day today

Good evening Scaredycat I hope you are OK today. You must miss your wine. Can you not drink alcohol at all?
U get what you say about going out. Often the fear is worse. I remember years ago reading a book called Feel the Fear and do it anyway (I think that was the title.
I wonder do you mean Newcastle in England . Or NI. I'm in NI.
Wishing everyone a peaceful evening. I have 2 letters to write tomorrow. May not make it to BD.xx

Thanks Wyllow3.

Oh* Whiff*You are certainly no fraud and I and all of us welcome your posts. You have been through much in your life and still have ongoing battles which you face bravely. I never thought I'd openly post experiences initially. Because I'm not that well known in my area I guess Ive taken risks but people here welcomed me from the beginning and never questioned the validity of my experience. Thankyou Whiff and all the v best for your tribunal.
EllieAnne As HVDY says a couple of glasses of wine shouldnt harm and I'm not surprised you need to unwind a bit. Hope you can get back on track of having some nutritious food after a bit of comfort eating. You are worth looking after you. Every time I write to you I feel my words bouncing back to myself. I share so much the insecurities. I know you're a bit anxious of lunch out tomorrow and I get that, because of what you've said about 'playing the part' of happy families when things aren't right between you and husband. You deserve a nice birthday with love from your son and GC. They love you and I'm hoping you feel that tomorrow.
Scaredycat Oh a surprise party! I share your horror. Any party really, especially at present. That expectation from others to play the part. I feel uncomfortable when given presents too. All eyes on you while you unwrap a present. I cant even take it in what the gift is as I'm so aware of my expression to the giver. Looking appropriately delighted. I must do a good job, too good a job unfortunately. Hope your weekend is kind to you too and thankyou for my hugs.
HVDY Weather's been rubbish hasnt it so hope the afternoon was better. It was much better here by lunchtime. Hope you managed to get somewhere with son and girls. Such a shame the weather is like this for the children starting the summer holidays. Wish we had a fox visiting though we had a hedgehog trundle down our path in broad daylight the other day. Do hope your legs let you sleep at least.
Nadateturbe Those photos are beautiful. Is the one with the Mournes near your caravan? Nature really helps to lift the spirits. What a find with tje second picture of one of your favourite places Hares Gap. We used to walk some lovely places in the Lakes and Anglesey and NY moors. Precious memories. Caring words for me Nadateturbe, thankyou. I know my DH has felt helpless for a long time and he's a quiet person so often dont know what hes thinking but I know he loves me and cares. Ive not been easy to live with since op.
Thankyou too for hugs. That man you bought calendars from asked permission to give a hug. Thats so different from one being foisted on to you.

Will come back later.

Evening all, I caught up earlier and typed a long reply but then my iPad died and lost it. Now it won’t charge so can’t reply to all using my phone as I find it too fiddly. Will try and fiddle with it to see if I can get it to charge. Hope all ok. Hopefully be back soon xx

That’s a lovely picture Nadateturbe. By pretending I mean putting on a face. Pretending everything is ok.making out I’m coping well so that I don’t worry any of them. I have horrible thoughts that I can’t share with them.

HVDY- sorry I meant with your Son and the Girls🫢