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Black Dog 19

(683 Posts)
Doodle Fri 13-Oct-23 22:36:41

For the support, understanding and sharing of mental health issues.
All are welcome. We treat each other with kindness.

HowVeryDareYou2 Mon 20-Nov-23 19:36:16

Doodle Reynard's is painful, so I've been told. I've seen some things that can be heated up in the microwave and put inside gloves. That's great news about your husband - he's making good progress. I bet it won't be too long before he's walking more and is able to go home.

ScaerdyCat Your little GGS must be so brave to cope with the Crohn's and the treatment. I do hope he will soon feel better. Is he able to watch tv or play on a tablet while he's having the treatment?

SweetpeaSue I'm sorry you've had such a rough day. I hope you have a more comfortable night.

Baby has just gone. She'll be here again all day on Thursday. She's such a happy baby. Nadateturbe, EllieAnne, Candy6, Whiff, Wyllow3, Nanny2507 and any others - Hope ALL BDers have a relaxing evening. x

Scaredycat Mon 20-Nov-23 20:17:42

SweetPeaSue- sorry you,ve had a bad day again. The pain situation for you just seems to get worse and worse. Then of course it’s bound to make you feel depressed. I don’t understand why nothing can be done to help you. Hang on in there with the ADs - they will help you I,m sure.
My GD who is a nurse isn’t the mother of my GGS with Crohns. She is his Mums sister and has her own little boy.
Hope you have a more comfortable night.
Doodle- great news about DH - you must feel so,ll be a good tired for him tonight.
Yes Raynauds is very painful- my daughter suffers from it badly in the Winter. Hope the shoulder pain eases off.
I,m ok thanks - had a walk this afternoon with DH. So many leaves underfoot but not the nice crisp crunchy ones you can kick as you walk just a horrible slippy wet mess.
HVDY- yes we,re all really proud of my GGs and how he copes. My GD says he was very brave this afternoon having his first infusion. I dont know whether he can do anything whilst having it I,ll ask .
It’s so nice you can see your little GD like you do- you will forge a very close bond with her.

Our friend with Alzheimer’s may have to go into a care home soon- I feel so sad for them . We have had so many good times with them both and thinking of them apart is heartbreaking.
Goodnight to allxx

Sweetpeasue Mon 20-Nov-23 20:37:10

Scaredycat Thankyou .When I hear of your little GGS's condition I feel so weak but it makes me realise that resilience in one so young is so brave. You must be so proud of him .Sorry I got his mum mixed up. My own GS is 8 . Glad you had a nice walk today., even if the leaves were a mushy mess. So sad to hear about your friend with Alzheimers reaching the time for a care home. No one wants to think of being in that awful situation and it must be so hard to have known them for a long time. I hope he can have wonderful care and settles in when it happens. Take care of yourself Scaredycat.

Candy6 Mon 20-Nov-23 22:41:09

Evening all,
HVDY Nice surprise for you to have your GD. You’ve had a productive day going to AA too. Hope you’ve had a nice evening.
Doodle sorry you are in pain. I don’t know much about Reynard’s. Is there any medication you can take? Yes I m busy as I’m having some training. It’s really boring and I was really tired and I dozed off and it was noticed! Bit embarrassing but I tried to brush it off. I have it again tomorrow so I must try to stay awake! I hope your pain has eased this evening. So good that your DH has walked too. He can concentrate on making progress now.
Scaredycat I hope your GGS’s infusion went well. Your GD has a lot to cope with bless her. It’s surprising how some people can sail through life with nothing and then some people get a lot. I don’t wish anything bad on anyone, it’s just that life isn’t fair at times. I have to admit I had to Google Gluhwein 😂 no i didn’t have any, I don’t like mulled wine but I did have a few prosecco’s! Such a shame about your friend, such a cruel disease. It.must be hard to see her husband suffering too. Sounds like you had a nice walk today. I love walking. I was out early with my dog, just as it got light. I don’t like getting up early but I enjoy the walk as it helps get me going.
Sweetpeasue sorry for your bad day. I hope it has eased now. You too have a lot to put up with.

Need to go to bed now and make sure I don’t doze off again tomorrow 😂. Thinking of everyone. Sorry if I’ve missed anyone. Night all xx

Wyllow3 Tue 21-Nov-23 00:05:18

Night night to all BD's xx

HowVeryDareYou2 Tue 21-Nov-23 09:27:20

Hope everyone had a good sleep last night. DH is going to Son2's later to install some new electrical sockets in the garage, so whilst he's out, I'll change the bed, do some washing and ironing - exciting stuff. Hope ALL BDers have a decent day x

nadateturbe Tue 21-Nov-23 16:47:51

Good afternoon everyone. I am OK and reading your posts. Just very little energy each day at the minute, and eyes need a break from screens. We had an art exhibition on Sunday. I was there for an hour, a fellow artist who was there and also by coincidence has M.E. also felt ill and had hot eyes. We think it was the very dark artificial lighting which kept changing in the (very unsuitable) room we were allocated. So relieved.
Thinking of you all.xx

Sweetpeasue Tue 21-Nov-23 17:57:47

Sorry if this sounds a bit jumbled. Really upset and tremble. Don't believe these ADs working Had 18 so far but an hr ago read an article in paper about a woman who had vag.mesh surgery.Her pain was daily and was on morphine and codeine. The trauma she's been through with courts and surgeon's backing each other up.Another lady suffered sexual abuse as child and in court it was brought up as the reason for her pain (it was mesh) she felt so embarrassed she dropped the case. Had meltdown ,can't stop shaking, rang MH nurse ,spoke to receptionist. He's not there.Another rang me and said she'd get Dr to call me tomorrow. Taken couple diazapam to calm me.
It's the abuse of surgeon's and Dr's not telling the truth.Because I know this I can't know if the truth was told in Laparoscopy.How many adhesions were actually there and how much of my pain is because of them. The woman in article said she woke with pain every day. Described how intimate relation with her husband had changed. How haggard and aged the whole trauma of pain and court case. Her consent form had been altered but she was lucky to have kept her own.
No one will know how I one will understand .
Sorry I just want someone to understand but don't know how to convey the experience. I sat on front of Dr's who were covering for each other and couldn't say I knew.
Just needed to get it out. Just want everyone to know what it feels like.

Forgive me I know you all have problems.Thankyou BDs

Sweetpeasue Tue 21-Nov-23 18:08:53

Nadateturbe Sorry you still have so little energy. I'm glad you got to the art exhibition, even for a short time. It must have felt good to meet someone else with ME and the same symptoms. You know you're not alone, if even for that small time.Im so sorry your life is so affected by it. Hope you feel better tomorrow.

HowVeryDareYou2 Tue 21-Nov-23 18:19:24

nadateturbe What a coincidence that the man also has M.E. I think artificial lights ar bad for the eyes, particularly those strip lights.

SweetpeaSue I have heard about women having terrible problems after vaginal mesh procedures. DH's sister has had a prolapse for years but won't have an operation because she was offered the mesh and said no. Did you have a similar operation? (sorry if I haven't remembered) You and I both know that mistakes/negligence, call it what you will - happen, and that medical professionals cover for each other. I can't pretend to know how you feel, but I do know how it feels to not be listened to or taken seriously. I don't know how you will get past that as you're still suffering the physical pains (obviously mental anguish too). I hope someone rings you tomorrow x

Well, I had my roots done (they were really bad) and a cut and blow-dry. I was there almost 2 hours. My hairdresser (Italian man in his late 50s) never stops talking, so that was really nice. The GP was meant to have been ringing DH to discuss his results, but nobody rang (I'll get DH to ring the surgery tomorrow}

I hope evryone else has been ok today x

HowVeryDareYou2 Tue 21-Nov-23 18:46:25

GP just rang (was meant to be 4-5pm), said all blood test results were normal, but ultrasound shows a small nodule on DH's thyroid. Unlikely to be cancerous, and they're referring him to the appropriate hospital department for a CT and biopsy. x

Sweetpeasue Tue 21-Nov-23 18:56:05

HVDY We do both know (Drs covering)unfortunately. No I didn't have vague mesh op. In fact it wasn't meant to be operative at all. Just investigative. My HRT had to be changed as pharmacies couldn't get it. I had a bit of spotting after it changed. Investigative Hysteroscopies have to be done to make sure nothing sinister.I only had General Anaesthetic because I previously had one some yrs before which I couldn't tolerate and they had to do it under GA.
On consent form I signed for tiny biopsy of lining or a possible poly removal. Polyps can be easily removed. I was told he'd removed a polyp/fibroid that was half centimetre.
After lots of bleeding and pain afterwards for a month and A&E visit . Saw consultant who said he didn't know why I was bleeding but would probably settle. After going to another Gynaecologist she told me that, as the other Gynaecologist had told me, there'd been a false passage(where the instrument goes into side of cervix) but they didn't think perforation. Nobody had told me this and I said so.I was under her for a few oaths before I found out ( from another Dr who stood in) that my fallopian tubes had filled during op. She gave me an MRI report that I'd had done a few months earlier , that showed that only part of fibroid had been removed. I looked incomplete resection of fibroid up and found it can cause many further problems.
I hadn't been told he'd not taken complete fibroid away. People can have multiple large fibroid taken away in half the time I was under. My investigative Hysteroscopy should have been 10 mins-- I was under a full hour. I had massive gush of blood on ward. I knew it wasn't like the last time I'd had one.

First time I had Hysteroscopy a head Gynaecologist saw tiny fibroid and left in there as it wasn't causing me any trouble at all(lots of women have them without problems). This young Gynaecologist couldn't tell the difference between a polyp and a fibroid. There isn't such a thing as a Fibroid/polyp. It's one or the other.I didn't sign consent for fibroid removal.Its a much bigger op and fibroids need to be classified by scans before operated on.

Didn't mean to go on so long. It's all in my head now.
Sent for medical records. At complaint meeting they said no records of fallopian tubes filling during op when I was told it had happened. Other stuff. A letter that should have been sent to me and my GP (actually addresses to us) had not been sent and was in medical records. It was from the woman who stood in.

This isn't going to make sense to everyone but I know the daily pain I suffered and the bleeding afterward that went on for 10 maths because of what they did.

Sure you wished you hadn't asked HVDY.
Do hope you get through to GP tomorrow about your DH. Sure you will have had a boost today with your hair done.
Sorry everyone I'm just a bit of a mess .

Doodle Tue 21-Nov-23 19:36:12

I’m sorry it will be another short post from me tonight. I a,min agony. All across my fight shoulder and down my back. I think it’s sitting in the hospital visiting chairs for so long.
Scarefycat what a lovely post you sent to everyone.
Sweetpeasue sorry about the pain. Depression is likely to follow. Being in pain brings you down. Hope tomorrow is a better day.
In some ways you feel abused. Someone did something wrong to you and they have never been held to account. I hope you get to speak to the MH doctor soon.
HVDY hope you had a lovely time with the baby. DH is coming on well. Hope you’re pleased with your hair and your DH is pleased with the results of his test,
Candy when you feel really tired it’s almost impossible to stay awake. Hope tomorrow’s session goes better.
nadateturbe thinking of you.
Wyllow hope you are improving a bit *
Take care all xx

Sweetpeasue Tue 21-Nov-23 20:10:57

Doodle Your back and shoulder pain must be so difficult for you when you're in the hospital chair all day and also doing all the driving. So sorry .Hope you can perhaps have a warm bath to relax the muscles. Also that you have some good pain relief .Will warmth help-hot water bottle? Think about you every day and hope your DH continues to improve.
Yes, Doodle -feeling of abuse too.thankyou.

Wyllow Wishing you peace of mind and hoping you have sleep tonight.
Nadateturbe Thinking of you too and hope you feel better soon.
Wishing all a peaceful night.

Scaredycat Tue 21-Nov-23 20:11:44

Candy- Hope you were able to stay awake during today’s training. Sometimes it’s impossible to stay awake when you are both tired and bored.
GGS infusion went well thank you- my Grandaughter said he was very brave . It helped that he could have her and her Mum ( my daughter) with him all the time. They played games which passed the time .
Yes my GD has had much to cope with and as you say life just isn’t fair.
I too love walking and miss how I used to walk before the permanent AF. But I still try and walk everyday.
Nadateturbe- Glad you were able to get to the Art Exhibition if only for an hour. Did you have any work in it?
I think artificial light can cause horrible feelings sometimes. When my anxiety was bad Going into shopping centres or supermarkets made me feel awful and I,m sure it was the lighting.I,m glad you were able to speak with the other ME sufferer and put your mind at ease .
Hope you have a peaceful sleep.
SweetPeaSue- I wish I could say something that would help you. It must be so frustrating and destroying to have such mental anguish over something that seems almost impossible to get anyone to take as seriously as it should be.
Hope you are able to talk to somebody tomorrow.
HVDY- your hairdresser sounds great - have you had him a long time? It really does make you feel better when you,ve had a bit of a hair sort out doesn’t it.
Glad your DH got his phone call and bloods were normal- that’s always a relief. Hope the scan comes through quickly.
Wyllow- thinking of youx
Goodnight allxx

Sweetpeasue Tue 21-Nov-23 20:59:52

HVDY It's good news that blood tests have come back normal. Like Scaredycat, hoping your DH gets the CT scan soon. Take care of yourself too. X

Sweetpeasue Tue 21-Nov-23 21:33:23

I'm sorry.I didn't want to come over so desperate. So sorry.

HowVeryDareYou2 Tue 21-Nov-23 21:46:12

SweetpeaSue What you went through, and the aftermath of it all, is terrible. You could try to make a claim, but the sorry truth is that it is very difficult to prove or to make a claim against the NHS (I abandoned that idea myself). You're still suffering, so perhaps you'd have more luck in taking action. I just hope you can get some relief from the pain.

Doodle You must feel worn out with all the driving and visiting. Your shoulder pain might be caused by tension. Would a heated bean bag thing help?

ScaredyCat Glad your GGS's infusion went well. What a brave little boy. Will he notice the benefit of it soon?

I've been Googling DH's thyroid nodule, and am very relieved about it all now (he doesn't let things bother him like I do). Glad he's got a diagnosis after 10 months of GP & hospital appointments and tests. Hope ALL BDers have a good rest tonight.

Sweetpeasue Tue 21-Nov-23 21:59:52

HVDY Ikwym. MyDH doesn't bother too much about health stuff.Glad you feel a bit better about it right now. It takes so long to get diagnosis. My DH put his own steroids up to 20mg last Thursday and 24 hrs later had immediate pain relief .He told GP today he'd been on 20mg daily since then and GP said he can stay on it for next few weeks then start to reduce.
Thankyou so much for understanding. I just can't stop crying about it all again. I keep thinking I'll never be right about it but I'm just v upset right now. New day tomorrow is what I've said for last 3 yrs and it's still true and what gets me by. Your own traumatic experience of them giving you the wrong dose of medication while in a coma was gross negligence in the extreme. You are a brave lady indeed. Thankyou for understanding. X

nadateturbe Tue 21-Nov-23 22:25:02

Sorry mostly very brief posts to everyone. Can't manage more.
Doodle hope you have some strong painkillers for your shoulder, it sounds bad. Perhaps you should see the GP if it doesn't ease. I hope your husband is well enough to get home soon which will help.
HVDY always helps to get your hair done. Hope husband gets seen soon. But I'm glad bloods were OK, and you're getting somewhere.
Candy your tiredness sounds bad, I hope you manage to maybe cut working hours soon. Terrible to be falling asleep like that.
Scaredycat Your little GGs is so brave., you hate seeing GC having to cope with illness, when you can't do anything about it.
I think I will avoid artificial lighting as much as possible. Helpful to know others have had problems with it.
Nanny your children are probably worried about you, but you must do what you want to. Just going for present opening sounds good, I've done that..
EllieAnne your neighbours sound like a right pain. Hope you are OK today.
Whiff great post. You've coped so well with everything. And yes, we should all celebrate our "uniqueness ".

Sweetpeasue I am so sorry you are feeling so bad. You have no need to apologise. I'm so sad and angry for you. It is beyond frustrating that you aren't getting justice. My young sister was knocked down when a child by a medical person (don't want to be specific). Quite badly injured. All covered up because of who he was. I'm sure it happens more than we realise. . The difference is you are still suffering so much and how can you get past it. And it takes so much energy to try to get heard. You have so much evidence too. Hard to understand why no one is listening. Life is so very unfair. Often caused by selfish human beings.
I hope you get to speak to someone soon. Sending you big hugs.

Thinking of you Wyllow3
Hoping you all have a peaceful night x

nadateturbe Tue 21-Nov-23 22:28:22

Just reading about your wrong dose of medication HVDY. Absolutely shocking!

Ellie Anne Tue 21-Nov-23 22:55:32

I ve spoken to my neighbour and it’s ok. I think dh probably picked her up wrong because he doesn’t hear properly.
I’m going to see dd on Friday on train. Don’t know how it will go but after last week end I need to get away.
Sorry so many are struggling.
Woke up at 4 last two mornings and couldn’t get back to sleep so keep dozing off tonight. Should go to bed but I’m having a glass of wine and catching up on programs.
Watching gps behind closed doors. One of my favourites.

Wyllow3 Tue 21-Nov-23 23:33:39

Night night all - have shared your days xx

Whiff Wed 22-Nov-23 07:20:59

Sweetpeasue haven't read the rest of the posts yet. But please stop apologising for how you feel. Here is a safe place for you to say exactly how you feel. You are amongst others who know what it's like to be in pain all the time . No on judges you so please don't judge yourself.

You and many others here had pain caused by others. Surgeons you trusted to help you caused you to be in pain and don't own up to what they did to you . That poor woman you wrote about and what she went through in the courts. Truly shocking. You would think in this day and age people would own up to there mistakes especially medical ones as they ruin people's lives. I blame the sue you society that came over from America.

Trip over a paving slab and people instead of checking to see if anyone had seen them being a fool they sued the council. To many solicitors sprang up with slogans like had an accident at work we can help you get compensation.

That's why people in your position can't get doctors to admit they did this to you.

Having pain thrust on you effects not only your body but your mental health. And not getting answers makes you feel worse. Also not having any help to fix the problem which is causing you pain makes matters worse as in packs your whole life. And you see no end to your suffering. Others here are the same .

Some have said I should courage but I have been in pain my whole life I am 65 pain is just part of me I was born with it . So I don't know what it's like to be pain free or not have mobility problems and being disabled. It was just by chance my parents where both carriers for the SLC6A5 gene mutation. I have it my brother doesn't. As it was 50/50 chance of my parents having it. But I was brought up with love and attention from an extended family and met and married a man who took everything in his stride and when my health got worse in 1988 and the limb jerks started. He just said we alter our way of life to suit you and be a normal family. He kept his word until the day he died.

I don't know any other life. But those of you had pain thrust on you do . That's far worse than being born with it.

I have said many times you are all stronger than you think I see that in your posts I wish you could too. Not matter how much life throws at you get in with living your life but in your own unique way. But because this is a safe place you can talk about how you feel. And people understand and no on is ever judged .

If you couldn't talk about how you feel here how much worse it would be for you. So none of you apologise if you need a moan or feeling down you can do that here. It's better to write it down than it fester in your mind.

HowVeryDareYou2 Wed 22-Nov-23 09:11:54

SweetpeaSue I understand your need to know the truth. I know you're still suffering a lot. You need someone to own up and admit their errors, and to apologise. At least I got that. I don't know if you will, but you can either try to come to terms with what happened to you (but as you're still in a lot of pain, I don't know if you can) or seek legal advice for what would be a very lengthy, if not impossible, route for justice. I think you're a very strong lady x

nadateturbe Someone rang from Critical Care dept. when I was in the induced coma, told DH they'd given me the wrong meds. After I got home (6wk later), this person rang me, said I'd been given Adrenaline instead of Fentanyl. Very apologetic. A full investigation was done (I was sent all the paperwork about it)and the investigating Consultant (he wasn't connected with my care) rang me, spoke AT me the whole time. Very apologetic, though. My BP had gone up to 350when they gave me the wrong drug, but they say that hadn't caused the stroke. I still don't believe them but have accepted things. Hope you feel less exhausted today.

Candy To fall asleep during training would suggest you're over-tired. Are you doing too much?

EllieAnne Glad things are ok with your neighbour. Pleased you're going to see your daughter. That'll make a nice change. I like that programme as well. I like the casualty ones too.

Whiff This is, indeed, a safe place to post, with care for each other.

DH has just gone out to meet a couple of old friends for a Wehterspoon's breakfast. I'm going to the dentist when he returns (seeing as I waited an hour last week and wasn't seen), then we're going to go to B&M for --stuff we don't need--essential items. Love to all x