Black dog 21

Oh Ellie Anne so sorry you can’t even enjoy being with your DGC at your home. I know what you mean about living them so much. It’s how I feel about mine. Does your husband get involved with playing with them? I

It’s been difficult. Had my dgc overnight and today. But love them so much but when they are here( not often) I can’t escape. This is getting too much for me.the only place I’m ok is in bed.

Sweetpeasue I hope you find the book helpful. I wish I had faith like some people but I don’t so I need others perspective to help me see things in a different way.
To be honest I wondered if the palpitations were the pacemaker too. I don’t know much about it other than I can feel it easily under my skin. Its edges are visible in the mirror. I keep wondering if it’s moved but I can’t see how,
Don’t put yourself down. You are certainly not all doom and gloom. You encourage and support others. Tell us things about your day. You’re part of us and we’re all in this together.
I tend to agree with you about the Pain management people. Trying to get you to use less pain relief than actually trying to help the pain stop.
Glad you managed a walk this afternoon it will have done you good.
Love your posts Whiff you’re always so encouraging. Life with constant pain is wearing. Don’t know how you cope. DH is in a lot of pain sometimes but has periods where it’s a dull ache and he can think of something else for a while.
You’re right. Physical pain we can target with painkillers but mental pain is something totally different. When it’s in your head you can’t get away from it. It drains you more than physical pain I think.
I think we all need lightness in our lives. Even if we’re going through a bad patch it helps to know something nice has happened to others. Humour has always helped me through things.
HVDY not too bad today thanks. How nice to have a meal with your son and then they can go and see your DGD in her play. Does she enjoy acting? How lovely you all went to see her. Lucky girl to be in a new family who all care about her and her new baby sister. So special.
Scaredycathope the holiday is going well.
Ellie Anne hope you have something nice to do this weekend.
Wyllow thinking of you xx

Doodle I hope you are OK today. I was concerned in case the palpitations were connected to your pacemaker, though I have absolutely no knowledge about them and don't know anyone with one.
Whiff Everythjng you've said about pain is true-in that there are so many ways to experience it and we all have our own ways of coping with it. From the one Pain Management appt I had ,I felt worried that they were more concerned with managing pain in ways more in keeping with alternative medicine and psychological ways of mind control( when you have severe pain it's difficult to 'think' of anything else and ,for myself. I just want pain relief medication to get rid of it *right now*). I see that involving drugs and other methods too can help all together. I wouldn't/ couldn't be without painkiller medication though.
You seem to have accepted your pain right from the beginning ,as you say, you've never known a time without it. It must surely still drive you mad though and I'm very sorry you've suffered so long with it.
As you say so well, physical pain affects MH and MH affects our physical body and medical conditions.
If BD isn't all Doom and Gloom , it's probably not down to me 😂 but it's kind of you to post supportive comments.
I hope you are having a good weekend yourself.
HVDY Nice to look forward to seeing your son and family later and to enjoy a good meal there. So windy here but had a walk out this afternoon. Made a Victoria sponge yesterday and sandwiched them tog today with jam n cream. Son gone back to work so froze half but had a good slice today and wanted to walk it off ( then came in and had another slice! 🫣) Urologist saw yesterday can't help with IC/BPS but told me who the other few were who know more about it.

Up during early hrs with BP .DH came down with me. Back to bed then up latish, more pain so couldn't take aunt out. Had to call her to tell her. Think she expects Saturdays now but difficult for her to understand my situation -she wouldn't worry but she forgets everything anyway. I just don't want her to think I've forgotten her. She was OK.

Good afternoon as went out for walk beside the sea on path and sand dunes. DH bit of headache but not too bad.
How is everyone. Hope you are all OK. X

SweetpeaSue I'm so pleased you've been seen by a doctor who understands your bladder problem. It sounds hopeful that you'll get the correct treatment this time. I sincerely hope so.

Doodle I hope you're feeling better today and that whatever the cause of your discomfort last night, it's gone.

Not much happening here today, but Son2 has invited us to theirs for dinner later (he's going to make 2 curries, which we all like) and then we'll look after Chubby Chops whilst they go to see GD, on the last evening of the play.

Hope ALL BDers have a relaxing evening x

None of you must apologise for the pain you feel. Constant pain is wearing and effects your whole life . Physically and mentally. It can limit what you do and that is so frustrating . It also effects how you think about things also very frustrating . Every ones pain is different never belittle what any of you are going through even if a person has the same condition the pain and how it effects you is different. We are all individuals and we all handle pain differently.

To be honest I wouldn't know who I was if I wasn't in pain as I have been in pain my whole life. But since my diagnosis in 2022 and knowing I was born with HPX and born with a hole in the side of my heart. Means I have found a group of fellow HPX suffers and no longer alone. Even ones with the same gene mutation as me we still have things unique to us.

I have said it before and will keep saying it until you believe it your are all stronger than you think and you bear your conditions with so much courage and even though suffering you still have compassion for others. Many have loved one suffering as well so you are hit by the double whammy. And if anything like me I always put them first and it cost me health wise but I would do exactly the same again . As many of you are doing.

Physical pain effects mental health but also mental health can give you physical symptoms. It's a vicious circle that is never ending . But you all battle on everyday giving support to anyone who needs it . Like I said your strength and courage shines through in all the your posts . Just hope you believe me. I see it so others do to.

This thread is so needed and always will be . It's a safe haven for all conditions but it's not a doom and gloom thread as many show what you can achieve even through your suffering. There is hope and humour here . No judgements and no nasty posters who try and belittle people not like some threads.

This thread and all who post it's like a cosy blanket you can snuggle into and talk about anything you feel and know you are home. ❤️

Night night and hugs xx

Doodle The news about Kate is a shock to many and I feel as you do about her message too Doodle- given in such a dignified and calm way. I hope she continues her recovery to full health.
Thankyou for your words to me. You have so much to cope with yourself and you always write with kindness and support for everyone. I hope you will feel better tomorrow. You must take care of yourself and don't be afraid to call out of hrs if you need a Dr. You are coping with such a lot and have been for a long time. My book arrived today. It looks like it contains a lot of help and different ways of looking at things when we don't seem to get answers. I hope you both rest well and peacefully tonight and feel stronger tomorrow.
Wyllow Sending love and hope.

Wishing all BDs a peaceful night.x

Just read about Kate and feel so desperately sorry for that poor family. I hope the treatment is successful. Such a dignified message.
Sweetpeasue so glad you got on with the Urologist, hopefully one of these urologists can help you. Don’t feel bad about saying you’re fed up. You have so much to put up with. Being in constant pain and not being able to make any plans in your life is hard to cope with. I just wish something would make a difference for you.
Ellie Anne sorry you lost your sister. I never had a sister so can’t imagine the bond between you but realise you must miss her a lot. Not surprised you feel sad at times . Losing close family is hard and your sister was quite young.
Have you anything planned for the weekend?
nadateturbe so sorry you’ve lost a sister too and also very young. You must miss her to talk to. Yes DHs foot does hurt when the dressings changed, sometimes more than others. It’s hard to say if it’s getting better but I think it might. It’s been nearly 5 months now and progress is slow.
Glad you’re finding the book helpful.
HVDY glad your DHs breathing is better. Hope the new inhaler does the trick.
What a lovely night out at the theatre. Glad you enjoyed it.
How lovely to hear you talk about your DIls daughter like that. Must mean so much to the little family that you’ve welcomed her daughter too.
Scaredycat hope you’re enjoying a lovely trip.
Wyllow hope the brighter days are lifting your spirits a bit,
I fell very odd tonight. Something to do with having just eaten I think. I have palpitations but they’re around my waist and I’ve a slight stitch in my side. Think I’d better move around for a bit, have a good weekend all.

Sorry, meant to say, other person he was referring to in the dept was more used to dealing with BPS .

Nadateturbe I hope you managed to get back to sleep and you were OK to see your family. Its usually funerals and weddings where extended family members see each other they've not seen for yrs. What a nice idea to keep in touch afterwards. Hope you had a nice lunch. Just noticed you lost your friend too. That must have been sad indeed. The thing with getting older people around us start to disappear. I think that's hard for many of us.
EllieAnne I'm really sorry that you too lost your sister so very young indeed. Not everyone is close to cousins or neices and nephews but I know you feel much alone for other reasons you. It must be awful to feel the need to get away from your home so much. I hope you will see a friend this weekend whether at church or for a walk.
HVDY It must have been great seeing your GD in the play. She must be a gifted performer to play three different parts and for 5 nights a week too. It's a shame we can't all go to see it to lift our spirits! Its lovely you all get on so well. It's good your DH is going to be checked thoroughly so you will feel certain he's OK.

The Urologist was a lovely man and he listened properly, giving us 40mins. Seemed very keen to help. He was honest in admitting there were only 3 Urologists in the area who were better at dealing with IC or as he preferred to call it Bladder Pain Syndrome, one being my last Urologist. I mentioned to him that I had already a NHS appt coming up with himself in June. He said there was another Urologist who worked in that Urology dpt and he is going to let that person know so they can hopefully see me when I turn up. Seems that IC/BPS isn't given a lot of time by many in the field . He understood the amount of pain I'm getting and I did emphasise my pain is definitely bladder related.
Had to take med this morning to get there. Feeling helpless about my pain but trying to stay positive.
Actually , I'm pretty fed up!
No, I realise others have so much to deal with too.
Hoping everyone has had a decent day.

EllieAnne Don't say you're sorry, you feel sad and it's not nice. Are there any groups/hobbies/classes you could perhaps think of joining? I hope the weekend will be better for you, and that you might see your new friend.

Hvdy I have 3 nephews but were not very close. I send cards to their children and occasionally see the one who lives locally but that’s all
I am feeling sad. Sometimes it just hits you. Sorry 😢

EllieAnne Sorry that you, too, miss your sister. Are you in touch with nieces, nephews at all? I hope you have a better day today and that you'll perhaps get out.

nadateturbe They'll probably do another ulrasound and a fine needle biopsy (to ensure there's nothing sinister, which is highly unlikely). We think of DIL's daughter (baby's sister) as our GD. She's a bright, interesting, friendly girl. Just noticed how late your post was! Hope you got back to sleep and that you manage to see your aunts and cousins later.

Hope ALL BDers manage to see a bit of sunshine today x

Sweetpeasue such a shock to lose your mother so young, and we've all lost siblings at young ages too. So sad. My brother was only 52. You must miss having your sister to talk to very much EllieAnne. I know how it feels, my mum, big sister and best friend are all gone. No one to turn to. Casual friends aren't the same. I'm sorry you're feeling so sad. You sound so miserable. Have you something to look forward to today?

HVDY thanks for explaining. I'm glad the inhaler's helping. Will they do more scans for the nodules maybe?
That was a lovely night out, especially as yourDiLs daughter (GD?) was in it. I love theatre and comedy of any kind is always good.

I'm going to meet aunts and cousins later today.. We decided about 18 months ago after a funeral to keep in touch. We meet for lunch every few months at a local hotel for lunch. I hope I get back to sleep or I won't make it.

supportive night night wishes all xx

Doodle With all that's happened with you and your husband, it's no wonder you feel as you do. You both need a really good rest and a break from all your problems. I hope you'll both have better health soon.

SweetpeaSue The very best of luck with the Urologist. I hope he's going to listen and take you seriously. My husband isn't breathless now, since he's had this new preventative inhaler (not a name I'd heard of before), but the nodules on his thyroid are going to be investigated (nothing sinister). I'm sorry to hear about your mum dying so quickly like that. No age, either, really.

nadateturbe So sad about your sister. Cancer is awful. Two of my brothers died suddenly and were young. I read about the 100 day cough, it's more or less Whooping cough. I don't think I've had/got that, but it's viral anyway. My husband started with a cough at any & every slight exertion. It had been thought it was heart-related. It has eased now, with the inhaler, but he's got nodules on his thyroid. Nothing major.

We've just got in - DIL treated us to an evening at the theatre, as her daughter was in a play, Bleak Expectations (5 nights this week, she plays 3 different roles). It was excellent, and very funny. An entertaining evening.

Hope ALL BDers have a good sleep x

The wedding was a while ago now but I did get very stressed about it all.
Nadateturbe I also lost my sister . She was diagnosed with cancer in November 2001 and died in may 2002 age 54.
I have no other siblings and was never close to cousins so feel very much alone.
Thinking about many things tonight and feel sad but I can’t cry.
Haven’t cried properly for years.
Goodnight everyone.

Nadateturbe What caring posts to everyone. You must be tired.
It must have been such a shock for you that your sister was taken so quickly. I can't imagine what it's like to lose a sister , so terrible. My mum was diagnosed with cancer just after Christmas 2000- given around 3-6mths, though died 8 weeks later at 63. Its a shock - a lot to take in. I'm so very sorry. I'm glad you have that Christmas card. So special.
It was the rest of the wedding guests going out night before. I'm OK now thankyou. I've written notes down so am prepared as I can be. Appt on morning.
Going to bed now ,goodnight. Hope you sleep OK tonight.

Scaredycat hope you're having a great time.

Wyllow3 Hoping you are feeling a little better each day.
Love to everyone else. Wishing you all a peaceful night.x
xx

Whiff I'm glad your brother is home. We all feel better at home. I hope he continues to make a good recovery.
EllieAnne I'm glad the wedding went ok. It must be awful to live with the stress continually that you have to cope with. I wish there was a solution. x

Doodle that was a lovely afternoon yesterday. I'm sure it did you both good. But you're probably tired today after all the chat. Even enjoyable things can take a toll. I hope you didn't have too much ironing to do
I know it's good your husband has feeling in his foot, but it can't be pleasant getting the dressing changed. Is his foot healing?
A flower in your hair for a wedding sounds lovely. I'm sure it looked pretty.
I've read about fifty pages of the book, I'm a slow reader, much slower than I used to be. It has been useful already. As you say, things I hadn't thought of. I will probably make notes to fix things in my mind.
The jeans I mention are very expensive but last for years.
notoveryet I'm sorry you are feeling so bad at the minute.
It's difficult watching someone close suffer and not being able to fix it. I hope your GD is getting help.
Don't worry about the house, are there little things you could maybe do in the meantime that would brighten it? Looking after yourself is the important thing. I hope your bereavement group helped today.

HVDY your cough sounds very annoying. The doctor on Lorraine was talking about the 100 day cough. So strange the number of coughs atm. I think it's ridiculous that you can't get through to get a prescription. It's just not acceptable. What if someone had something really serious?
It's good your husband hasn't anything serious but I have tried and just can't remember what was wrong. And can't scroll back. That was a long wait though. I'm sure you were glad to get home. I hope you get some better sleep tonight.x

Sweetpeasue I use desktop mode. I prefer it.
Yes, my sister died very young. She was told she had cancer just before Christmas 2010 and had 3 mths to live. She lived for 5 weeks. Very sad. I still have her last Christmas card. She dated it which she never did before and wrote Love you very much.
You said about everything being put down to arthritis, thanks for the warning, in my case it's that or M E. 😁.
Sorry you missed book group yesterday again, so disappointing.
I think you should wear what you want to the wedding, if you don't want to wear a hat then don't. But maybe try on some fascinators and see what you think. I also think going out the night before would possibly be a bit much. Is it a long drive home?
I hope your pain has eased today.
And I hope the urologist really listens to you tomorrow. Maybe write down everything you want to say and ask. That's what I do and write down the answers to all my questions. Take your time and don't be rushed.x

notoveryet A warm welcome. You must feel quite alone after the loss of your Dh and I'm sorry about your worries about your GDs MH. It's hard yo watch those we love struggling ,especially when we feel helpless to know what to do for the best. I hope your DGD is getting the help she needs. I hope you can open up a little in your bereavement group as I'm sure there must be others that will feel the same and come over as you say you do, as 'and of life's copers'. They may feel as you doinside but feel they can't say it. I'm glad you have the company of your dogs-they give unconditional love don't they. Take care and post whenever you feel.
HVDY Pleased your DH hasn't anything too serious after such a long wait to see someone. I hope he can get some help with his symptoms though-is he still quite breathless? Sorry if I've got that wrong. I see the Uroligist tomorrow.
Doodle I think your 'washed out'sort of day must be because of all you are going through and the cough must have worn you out too. That listlessness could be because things are still not resolved for your DH and it must feel like 'unfinished business'. Just a guess--as I get that feeling at times when I first wake up and I remember that we both have problems still. The rooms at the wedding venue are quite expensive but it's tempting, even so. I have such a horror of having photos taken Doodle but I see what you mean. Hate looking at myself.
NadateturbeEllieAnne* Candy*Whiff**Scaredycat Hope you are all OK.
Wyllow Oh I'm sorry about the help , or should say ,lack of. You are right , of course, there are huge gaps and help is sporadic , often through no fault of overworked MH staff. I see it myself. I hope you are still in touch with your sister-I'm sure she cares even though knowing what to say or do can be difficult . You are thought about often by us all-we care.

Woken at 3am with bladder pain. Now to convince Urologist tomorrow that my pain is IC , despite last Urologist passing me to Pain Management. I don't know where I'm meant to 'belong' . I'm thinking it's most likely waste of Uroligist's time as there isn't a cure for IC anyway and any further treatments will be invasive without good outcomes. Can only see what he says.

Hope all have a peaceful night. X