Black Dog 16

You have to feel comfortable with your consultant, Sweetpeasue. Is it something that you and DH can talk over with GP?

sounds to me like its worth going back to the one you feel comfortable with. For you, trust matters a great deal.

The local McCarthy and Stone is 75plus but I have already found out that a medical exemption is doable.

The CFS, the being married to abusive Ex, and being safeguarded, (have to be careful with the MH stuff obviously stress the vulnerable long term need for support levels - some people still have weird ideas)

But don't be surprised if in 2 days I'm rabbiting on about another alternative feelings so changeable.

But I don't think after today the idea of going to live near family will re-appear.

Doodle mediation stuff isn't for everyone. but you see I have always had my own room through my marriages - both DH's liked having own space and it being a choice - so if I've wanted to have music or whatever in the past not a problem. This was discussed in another gransnet thread about a month ago - I think the idea that it means the marriage isn't going well because you sleep separately sometimes was discussed but many thought it had actually improved the marriage. Since I only had one son it was always possible in a 3 bed house.

Sweetpeasue I suppose it is possible that your Urologist is one of those surgeons who is good at the surgery but lacking in people skills. There are a few of those around. I came across a chest consult who was highly rated by the GPS I worked with but had the most arrogant and appalling manner in dealing with patients. I met him when quite young and he upset me so much I refused to see him again. 20 years later DH was referred to him and he also said never again.
Sorry I don’t know much about your condition but obviously you have done a lot of research. Do you want this distension done twice.? Is there a benefit? Or do you just want them to look. If so the first Urologist might be a better option.

Wyllow I’m surprised. If you look on the M and Stome website it says retirement living plus sites are for over 70s. Not come across one where you have to be 75. Could you see if there’s another not too far away with a lower age range. I realise you could get in with medical exemption but your point about not living with a lot of people so much older than you is valid.
Of course you will be thinking of various options. There is also retirement villages and many other ideas. But I do think you are at heart a sociable person who needs interaction with others whilst maintaining a degree of having quiet time to yourself to build up your strength. I Hope you find something that suits your needs.
I know a few couples who for various reasons don’t sleep in the same room. I used to decamp to our spare room when having trouble sleeping. Nowadays I stick close to DH to make sure he doesn’t stumble or fall when getting up at night.

Wyllow I think going back to previous one might be best. He only sent me for second opinion so I dont think he's discharged me. The second opinion was having a look inside bladder and full Distention, which is what first was going to do anyway. Only first had agreed not to do Therapeutic Distention (Hydrodistention) which means filling with water to a high pressure,leaving 2/6 mins, empty and repeat. IC bladders commonly result in superficial, surface tiny tears which heal quickly. Procedure is not rated highly anyway as any possible benefits are v temporary. Just read that from a book so my mind is made up--Im not having full Therapeutic distention.
I can understand you wanting to be in a community of people same age if you were to move to.M & S complex. Hoping you are feeling ok today.
Doodle I thank you for believing in me. I think I might come over as paranoid about Drs at times but I expect Ive become extra wary and I think I will always be so to some extent now. Even before my experience of what happened Ive aways read a lot so cant help my need to question everything. Ive washed bathroom and curtains a d DH painting walls. I am going to sit in garden and stop myself thinking and worrying about it all for now. It can be difficult to stop the mind going round can't it? Hope you ate ok and DH.

Sweet pea sue that dr sounds horrible. When I broke my hip the consultant was not nice to me. I’m was awake for the operation and he didn’t do anything to put me at ease but the nurses were lovely. For after care I attended a different hospital because I d been at my sons when I fell so a different area. The new man was so nice . Chalk and cheese. So please don’t stay with a dr who has such an uncaring attitude.
I’m sitting in the garden too. Should be doing some weeding but feel very weary.
Hope everyone is having as good a day as they can.

Hi all.
Wyllow- I hope you get a meds review when you ask - it’s a long time since your last one. Would your Counsellor fight your corner? Especially as you feel some of your symptoms are getting a bit worse. I think of you as a sociable person but one who with others can still feel alone. Your confidence has been so damaged that you sometimes can’t believe you are
loved - well that’s not true. We all care very much for you as do your family and friends.
Maybe if you could find a development for over 55,s it would suit you better. I,m over 75 but wouldn’t want to live with all people my age!! I think Churchill might build for a lower age range.
Botanical gardens sound lovely- great to have your cafe open again.It does seem to me the place you live has much to offer you and your family are not far away- best of both worlds?
EllieAnne- forget the weeding and enjoy your garden. Hope the rest of your weekend goes ok.
SweetPeaSue- I knew nothing about IC so just read a bit about it. What a complex and difficult thing it is. The NHS site said that if you need a consultant better to ask for a specialist in female urology or a urogynaecologist. I,m so sorry you have had such traumatic consultations - a warm kindly manner isn’t much to ask.
Good idea to just sit,relax and enjoy your garden.
Doodle- It sounds like every day you are both doing a bit more. Don’t worry about trying harder - nobody could try harder than you and DH.
Oh I do envy you those lovely river views- can you see the sunset from your balcony too?
HVDY- hope you,re enjoying your Saturday with your Son around. Your DH sounds like he can turn his hand to lots of things. Hope he is feeling better and will get his results soon.
Must be so frustrating having the increased appetite from the Steroids and trying to diet at the same time. Grapes are quite sweet aren’t they but not quite the same as cakey things.😩
Whiff,Nadateturbe,Candy, Nanny, Allsorts and anyone I have forgotten hope you have a peaceful night.

Hello everyone, I haven't posted for a while, takes energy, so forgive me if I don't comment on everything.
Whiff I hope you're OK today. I hadn't heard of hyperplexia. Sounds awful to cope with. It's great that you're able to help the consultant gain knowledge on the condition.
Sweetpeasue I hope you get swab results and treatment soon. As for the urologist I don't know what to say. Just keep calm, and go with what feels better for you as regards who you see. Have you ever contacted your MP for help? I think you deserve much better from everyone than you're getting. Thinking about the reviews, as Doodle said my mum had a fantastic GP, who went on to be a specialist, but had no bedside manner at all.
Scaredycat I didn't know, so very sad to have lost your DH and son. I'm so sorry.
I find it strange that you're having to cope with permanent AF, without help. As Doodle says, has a pacemaker not been suggested?
Candy thanks for your kind words. I didn't know whether to post about my mum or not.
Isn't it strange how everyone chooses to ring on the same night and you end up shattered ( well, I do!).
Sorry about your weather but you seem to be enjoying your break anyway, lovely to have your brothers, glad they are having happier times.
Our forecast is sunshine nonstop next week here in Newcastle.
HVDY definitely champion phone chatter! How on earth did you manage 6 hours?! Its lovely that the little daughter is so close to your son. You have a lovely family.

Back soon.. eyes tired...

ScaredyCat I've eaten far too much again (why do I buy it?). I'll try to cut down tomorrow (again). Hope you've been ok today.

nadateturbe I can talk a LOT . Hope you've been alright today.

It's been glorious sunshine all day. Sat under the new patio umbrella (oblong, about 8ft long). DH and Son2 faffed about with son's car - it needs a new part, which will arrive tomorrow, so it's not fixed yet. I offered son my car for a few days - he declined. Perhaps he thinks it's an old biddy car . Not done much - a new rash has appeared on one ankle - these steroids aren't stopping that. Painful, too.
Vodka and lemonade soon, stuff it. Hope all BDers have managed to have a decent day x

Evening all, just a quick message this evening to check in and say I’m thinking of you all. Wi-fi not been good on our site the last few days. I have read but am having trouble posting - even now I’ve got that wheel of doom so I’m not sure if this will actually send. Going home tomorrow so will have a proper catch up then. Hoping everyone is as well as can be and sending ❤️ Xx

EllieAnne The sun was out here when I went into the garden. It felt nice to know you were doing the same at the same time. I hope you enjoyed the quiet and birdsong and didn't feel too lonely. I often read in my garden. I dont mind deadheading to keep flowers going and watering, and that suits DH as he can't be doing with 'faffy' jobs. How awful for you to have an uncaring Dr when you must have been in so much pain. A broken hip must have been agonising. I'm glad the second Dr was so different. How did you break your hip, if you dont mind me asking? Thankyou for your kind words.
Doodle I've gone over the consultation with Urol in my head, to see if I have been oversensitive, though I don't think so. Your own experience with the chest consult must have been upsetting when you were much younger too. Amazing that all those years later, when your DH was referred to him his attitude hadn't mellowed one bit. I'm sure there are more good than bad, even so. I expect some surgeons prefer the mechanics of their profession rather than seeing the patients as people.
Hope you and DH have had a nice day.
Scaredycat Thankyou for taking an interest. The profiles of both my Urologists dont mention specifically female urology and what you've read makes a lot of sense. There does seem to be far more men as Gynaecologists and Urologists than gemale though the gap has narrowed, I'm sure, to what it used to be. Tbh Ive never understood why so many men want to be in Gynaecology. Hope you've been ok today. You will be looking forward to your holiday.
Nadateturbe It's been nice to be in the garden reading this afternoon. I'm reading a book about a para who walks the whole coast of GB. His perseverance is incredible. Have you done any painting today? I did actually think of contacting my MP at the height of my Gynae problems with Drs who deceived but thought it would make things worse for me in the end. I really hate conflict. I have learned something though and that is even the quietest of us often have to face it sometimes. (Ive my box of Rich T under my bed now- thanks)

Hope all BDs are coping with your weekend and managing ok. Special 💐 for Nanny. x

EllieAnne I hope sitting in the fresh air has lifted your mood a little.
HVDY another rash. Poor you. Can't blame you wanting a vodka!
I've just had a little glass of wine sitting chatting in the sun with our neighbour caravanners.

HVDY Oh it's really rotten being on a diet. You suddenly crave everything you can't have! You've been doing fantastic. Sure a day off now and again can't harm. Ikwym about slipping though, it can be difficult getting back on track.
Oh I'm sorry about yet another rash you must be so fed up and concerned. The steroids dont appear to be helping at all. It's so not fair. Enjoy your 🍸 x
CandyDon't worry Candy. Have a nice evening.

Sweetpeasue If you contact your MP as far as I remember, they contact the relevant department and their queries are dealt with quickly. In my department they were given priority. If things drag on unsatisfactorily, it's worth a try. I'm sure you are absolutely fed up. I too don't understand why there aren't more female specialists. We would feel more at ease with them.

Nadateturbe Thankyou Nadateturbe. I think the time has passed when I was getting the hassle from the cover up of complications. I will never be sure if any of that has contributed to my problems now. The Gynaecology dept I was in then, I left 2 yrs ago. I have appt, week after next for ultrasound at new hospital RVI, to check uterus lining and, if that's normal I really hope that will put a close to those particular problems. I'll keep what you have said in mind though, thanks.

Sweetpeasue of course I believe you why wouldn’t I? I know from living with DH that you can suffer from an ailment every day that others don’t take seriously or don’t understand how badly quality of life can be affected by such things. If you would be happier going back to first consultant then that’s what you should do. You could try asking your GP to refer you again, phone his secretary and ask for an NHS appointment or go privately. Hope you had a nice sit in the garden.
Ellie Anne I think we all think of you especially when the weekend comes round. I wonder what you do with your time and how you try to avoid spending too much time with your DH. Sorry my memory is awful, I may have asked this question before, have you thought of joining some U3A group?
Scaredycat no we don’t see sunset from the front where the balcony is but we are lucky in that we get the sun early morning. By lunchtime it’s moved off the balcony a bit so we can sit out in the shade. We have windows on 3 sides of our lounge so can track the sun all day till it goes down through the back windows. It is lovely. Not the coast and sea, which we really love but a good second. How about you this weekend, what are you up to?
Wyllow I hope you’ve had a peaceful day. I forgot to ask how the alien removal was healing. Is it ok?
HVDY you are like me. I can’t resist food. I see something and I long to eat it. DH is much more controlled. I have no will power, then I look in the mirror and feel disgusted with myself. That rash on the legs might need different treatment. Hope you get it sorted soon.
nadateturbe on this thread you can post about anything you like. There is no hierarchy of severity or problems. We are all here just to offer support and a shoulder no matter what.
I can just picture you sitting in the sunshine with a nice glass of wine. Enjoy 😊
Candy nice of you to pop in. Yes I know only too well the hit and Miss nature of WiFi on holiday. Hope you are enjoying yourselves.
I know many on this thread are caring people. Can I ask you to hold in your thoughts a fellow GNetter called Urmstongran who you may or may not know. Her DH has just started chemo and things are very hard for them. Urms is a lovely lady I’ve known on GN for a while and I’m so sorry she and her DH are struggling. x

Sweetpeasue you’ve done it again 🤣 popping in the same time as me. Hope the ultra sound provides some answers.

I had a fall in the street while out with my son. It shouldn’t have broken a hip so that’s when they found out that I have osteoporosis.

Oh Ellie Anne when did that happen. Are you on any meds for it.

Doodle It's ok. I believe EllieAnne is responding to me asking about her broken hip, which happened some time ago. I will keep Urmstongran in my thoughts.
EllieAnne A fall in the street certainly shouldn't have ended with a broken hip. I wonder if you are taking meds for your bones now. What a frightening thing to happen to you. Your son must have got a shock too. Thankyou for replying. I guess we always think it will be something out of the ordinary that will result in something drastic.

Nadateturbe I have got hereditary Hyperekplexia. Hyperplexia is a different neurological condition. More is know about it than Hyperekplexia or HPX. The Brain Charity has been running for 30 years they have never heard of HPX. But there are over 600 neurological conditions and mental health conditions are included in that as it's anything to do with the brain.
But it was such a relief to have a diagnosis. But I am having to learn about it from others with it. Instead of being weird all my life I know you am normal for HPX. It's only through genetic blood tests it can be diagnosed.

Like others here had bad experiences with hospital doctors over the years but not since I move here. I have been told it's growing pains, I'm clumsy, time waster , attention seeking ,mentally ill, have post natal depression ,a fake and no one can be in pain all the time.

As others here know it's no fun not being believed . Only took me a move of over 100 miles to finally get help and a diagnosis . Plus found out I was born with a hole in my heart and now have PAF. My brother hasn't got HPX but he does have permanent AF , 2 stents in his heart and one in his brain from when a piece of metal hit him on the head and caused a bleed on the brain. Plus artificial hip and arthritis in every joint he broke falling off motorbikes.

I had to laugh when I found out about my heart had 3 major ops and 2 minor ones all with a dodgy heart.

But everyone here it's not just one thing wrong. I have realised physical health problems can have a knock on effect on your mental health like mental health can make your physical health worse. So either way you can't win. But the main thing is to keep battling through each day. And live the best life you can. Even if it feels like wadding through treacle.

And because you are so open and honest you help me get through everyday so thank you all for your courage . ❤️

Doodle thank you. You are such a thoughtful person. I ran out of energy before I could say hello to you and Wyllow. Tomorrow.....

Goodnight all. x

Doodle and others I was put on alendronic acid but am having a break from it just now as there is debate about how long you should stay on it. I do take calcium every day. It’s nothing to what others are suffering. It does make me nervous about fallout.

https://www.gransnet.com/uploads/talk/202306/medium-60117-r405833-cathryn-prior-200dpi-2.jpg https://www.gransnet.com/uploads/talk/202306/medium-444447-tryptich-2.jpeg

The local Mc and Stone Doodle has had 75 years imposed by the local council as part of planning permission - no one seems to know why tho, as you say its unusual. And today, feeling better, I wanted an ordinary over 55's.
Yes, after I'd written that about sleeping separately I realised that you would need to feel close to keep an eye on MrD, I should have realised. I picked up on Urms situation in the Good Mornings

I've had a better day - was gentle at the gym and did some gardening.

This evening I did a bit of work on going through art work and diaries as I need to discard about 50% - it was very enlightening reading some stuff from 2002. I was so perceptive about the black hole I was descending into but at the time had not the understanding to deal with it - it needed a good therapist right then. I was stuffed with meds and had ECT and stuff before I found at last a good psychiatrist who realised that talking therapy was right for someone like me. OTOH again, sometimes in life one cannot short cut painful learning.

But I did some really good stuff, it was good to re-visit. Tonight I could count it as a gain not a loss. Pix are of a watercolour still life and an expressive one about aloneness.

Thank you for your caring Scaredycat and others. I'll have to fight my own corner re the meds review, as counsellor is outside the system, private, tho she can do a report.

EllieAnne sometimes looking a the garden and watching the weed grow is just off putting! I hope church goes well tomorrow. Alendronic acid is new to me - my family has no osteoporosis.

Sweetpeasue I've never doubted anything you've written or ascribed what's physical to mental). but I do agree with he general view here that it matters a great deal that you feel good about the person you see.

But of course Whiff is right about the knock on effect on Mental Health and it utterly wearing you down the uncertainty. it took you a very long time to get a diagnosis. any date yet for PIP? It seems forever.

Sorry to hear you went a bit off diet, HVDY..tomorrowis another day....

Waves to Candy and nadateturbe see you all tomorrow and best wishes for the readers but not writers.

Wyllow your pics are lovely. A friend of mine with bipolar drew this when she was having a really bad day but I think the sentiment was very apt.

I had a copy the other day from the court tribunal service of the summation my solicitor sent it made me cry. My solicitor asked my daughter for an email . What she asked and what my daughter wrote is between them my late husband and I never pride into our children's lives once the became 8-9 if they wanted to tell us things we listened and if they needed advice we gave it. We continue that into adulthood and I still do it after he died. Still no date for the tribunal.

My daughter was 4 and our son 6 months old when the limb jerks and severe pain kicked in over night in 1988 . Always had pains in my legs for as long as I can remember and fell over all the time . Then things only went down hill from there. But at least I my GP believed me and sent me to see all the specialists he could think off. Only saw my first neurologist in 1992. Professor Marsden who ran every test available at the time and by today's standards some where barbaric but I didn't care. He could tell me everything I hadn't got. Started me on tablets to try and help with symptoms. Didn't see another neurologist until 2017.

But my moving here and the start of the seizures meant I got to see my wonderful neurologist who even though he didn't know what was wrong put me on Clonazepam and within 2 weeks my limbs didn't jerk and they haven't since nor had a seizure. After 32 years it was bliss. Still have all my symptoms but apart from my hands shaking I don't have my arms and legs jerking of there own accord and I never had any warning it was going to happen. All my joints are damaged through them and my falls. But because of my husband's attitude was we just live our life to suit what you can do our children had a normal life even with a disabled mom and me spending 10 years going out in a wheelchair everytime we went out as my walking was so bad plus having young children . They had a better life than some of their friends who had able-bodied parents. I only used the wheelchair occasionally after that for long journeys. My walking was still bad but better than it had been. Then my husband died in 2004.

Like others here you have loved ones depandant on you so you have to cope the best way you can. After my husband died both children left home after 2 years my son to uni and my daughter back to where she went to uni. I wanted them to go . My daughter wasn't using her education in temp jobs and had met her future husband at uni. My son's future wife moved to live closer to him. Her family went back to Australia she didn't want to go.

Had both parents and mother in law to look after. Many here look after relatives who have ill health plus being ill yourself but you do what feels right to you and for me that was looking after them. Even though I hated my mother in law. It wasn't until my mom died I could live my life. Moving gave me life I not longer existed but live it to the full. Like I said it's only because I moved over 100 miles finally know what's wrong with me my gene mutation SLC6A5 mom and dad had to carriers for it and it was a 50/50 chance of passing it on. I have it but my brother doesn't. If you have one of the 3 GL ones if one parent has it any children will get it if both parents have it then in can be passed down the generations. But at least babies who show signs or have parents who have been diagnosed they are tested from birth and get help straight away. But because it's in our DNA there is no cure it effects our brain receptors which effect motor movement . Which can effect ability of babies to feed and have sleep apnea. I can choke on food,drink and my own salvia but at I know why my wind pipe( can't spelt the correct word) goes into spasm . Plus all the others symptoms.

I know my husband would say typical of me I couldn't have something common. But I know people who have worse things wrong . I am who I am . But I am a good person and always out others first. My moving gave me my life back I no longer exist but live a full life . Got answers to my health ,lost my son and grandson's through estrangement but that's his choice I didn't even see it coming. For 7 months after my move saw them every week. Then Covid hit. Last time I saw my son was April 2020. Then 4 days later his email . I gave him 3 years of hoping to get my son back. I tried again over a month ago and got a vile text back so I am done. I still love my son but the son I knew not who he is now. This son is cruel and cowardly. We didn't raise him to be that . My grandson's are the losers in all this as I am an awesome nannie 😂. Or as my daughter's youngest calls me ninny nannie he couldn't say silly so it came out ninny and his brother calls me that as well. My mom was nannie chatterbox. Better than what my brother children called their nan it was nannie Pete named after the dog it stuck long after he died.

Anyway rambled on as usually. Hope the words on my friends drawing means something to any of you.

A long wait there for you Whiff but the solicitors letter tho upsetting sounds spot on.

I posted after 2 glasses of wine last night otherwise those pix wouldn't have gone in. Needing to say I used to be able to achieve? What matters is what I struggle to do now.

I have huge numbers of pix like that Whiff done in art therapy situations going back 30 years which are instructive. Often pretty grim. Then ones where I can see the "high" side of my moods.

Then I went on to push the boat out and listened to music till 1am which is a bit of a wrecking thing on a high as it means today am out of it.

It's so tempting when in a better mood to carry on and on but only induces a crash. Don't want to talk to anyone or do anything now!

There is a Zoom option for the Central meeting - don't think I want to go out to my local one.

Being in and with the music when I often cant "feel" it was good tho..