Black Dog 15

HVDY Re-normal - Glad Ive got company!
Doodle Sounds like a good day and I really hope for you a good night. Good youve managed to compromise in a way forward that suits you. I firmly believe that when you live with a condition the patient understands their own needs while appreciating the professional's knowledge. Yes, I look on GN to see who's about tol. Perhaps we were both looking at same time.
Candy I hope that now you're up to the 50mg ADs you will have maximum benefit soon. Ive taken ADs in past on around 3or4 occasions and only once did I find they disagreed with me. I think the bladder pain in particular, is worse at night because of concentrated urine. I have lrge glass of water during night to counteract this. Urine in bladder seems to 'attack' defective bladder lining in IC. Your reason for being 'unhappy' is very real to yourself and v real to others though they may not admit it. I believe you.
Wishing all a peaceful night. x

Doodle I was very pleased to read today’s news. It feels like a little hope has crept in for managing the complex problems.

Candy yes although minimum is best you may need to let the dose go up a little.

My MH stuff is so long term I'm willing to accept a restricted life ......just not too much so I cant cope with daily life needs and SOME++ like seeing more of family/friends than I do or go out sometimes and actually have fun now and then or too many nights bad etc.... I've been so much worse in the past and still"in recovery" from Ex.

Just a quicky as my phone needs to go on charge. Doodle so pleased to read your post and hope everything has positive results for your husband. Also don't forget all the worry about your husband has a knock on effect on your own physical and mental health. Hopefully as he improves you feel better as well. I didn't realise until after my mom died dealing with my husband's cancer and death then looking after both my parents and mother in law how much it had effected my own health and how much it had taken out of me physically and impacted on me mentally. Before that never thought my own health problems effected me mentally . But since reading all your stories. I realise it must have and still does to an extent. As my problems have always been physical since birth I now know since my diagnosis last year. And not growing pains and a clumsy child as my parents where told .
Any way big hug to you all and thank you for being here you will never know how many people you all help even dealing with awful things mentally and physically yourselves. 😘

Doodle I'm so pleased that your husband's appointments both went so well. Fingers crossed that by coming off that particular tablet, his legs will improve. The Neurologist sounds particularly helpful, and it's good that he said the other tablets for the RLS could be increased if needed.

It's a bright, sunny morning here. I was meant to be meeting my sister-in-law (the wife of my late brother) but she cancelled last night due to being unwell. I'll persuade DH to go out with me instead. What a treat for him . Hope all BDers manage to have a decent day x

Hi all.
Finally both tested negative today.
Now to get strong again. Don’t seem able to concentrate on writing here today - have read all your posts but my energy has taken a holiday. I,m so sorry.
Love to allxxxx

Whiff That was a lot of looking after everyone that you did. Bound to have taken its toll. Its as well that we dont know what we will have to deal with or we wouldnt believe that we had the strength. It must have been sad for you to have the 'clumsy' label through having the unknown illness though.
HVDY A disappointment for you this morning but hope your sil is not too poorly. Did you go out with DH? Of course it's a treat for him. 🤗
Scaredycat Congratulations neg covid. Now to get better and stronger. It must have taken so much out of you. You should be immune for a while after, I think, but cant remember how long for.

All the while I was with last Gynaecologist I was told it was alright to continue my HRT, even when bleeding for months. He said ok because it was combined. When I had op in Sept Id not bleeding for 10 mths. Some bleeding afterwards was expected though. Then no bleeding for 3mths. A GP had stopped my HRT after an appt with him a couple of mths ago. Didnt know this until disappeared from prescription. Questioned it with usual GP 11 dys ago and she backed him up. I wasnt happy as Gynaecologist said it was ok. Been upset about but decided I'd best agree (was told next Gynaecologist could put me back on it). 3dys after me not taking it I started the recent bleed. Not happy. No bleed 3mths then stop HRT and bleed. Since HRT is like marmite-people have strong views - not mentioned it till now. I've always adhered to Drs guidelines on it.
Everyone makes a personal choice about it.
Up half the night with hot flushes, palpitations. Sure coming off it has increased anxiety of last week. Panic attack during night. Dont know what to do as no appt yet with Gynaecologist. Try to see GP Thursday. Really upset that CT scan overruled without telling me and the HRT taken off prescription with no discussion with myself. Soory about rant.

How are you all? x

Sorry. Last sentence should have been. Hope you're all ok and have a peaceful night. x

Evening all.
We are very tired today. The consultant neurologist was very nice and thorough. He wants DH to increase his meds to help him at night but has other options if that doesn’t work.
Because we were back so late DH didn’t get time to take his meds in proper order so we had a night of up and down quite a lot, hoping for a better one tonight.
Sweetpeasue not surprised your upset. It’s a bit like the problems with DHs meds. You need to go to the Gp and explain the situation as you have written it here. It makes perfect sense to me. Tell them about the hot flushes and the palpitations and ask them what they are going to do about it.
Even if the won’t restart the HRT they may give you something else. When I stopped HRT they gave me paroxetine to help with the dreaded hot flushes. Try and present a reasoned case by writing your points down. Little hug.
Wyllow I’m sure being able to go out a little more and see family and friends would improve things for you. You’ve been through so much. It’s only recently that you had the upheaval of your Ex turning up at the gym. I hope things gradually improve from now on.
Whiff I think we all manage to cope with things at the time because we have to keep going but after is when it hits us and as you say can have a big impact on your physical and mental health. You had a hard time. Going though all you have without a diagnosis for such a long time. Wondering what the problem was. I’m glad you at least now know and it can explain things.
HVdY. DH’s legs are really painful tonight. I think he’s been sitting down too much today working on a birthday card for our son. He should have been moving around more.
Did you go out anywhere nice?
Scaredycat at last you are both in the mend a bit. I can understand what you mean. I think I’m rambling tonight. I’m really sleepy and a bit worried about DHs legs.
Hope you both have a good night.

Bit like Scaredycat energy wise and in the middle of a v bad patch tho been a good day. Take is slowly there with of you, just the start of recovery after all.

I hope you had a good outing - weather has been patchy HVDY

Sweetpeasue its difficult to be getting mixed messages or lack of messages it just increases anxiety. Good idea to get clarity on Thursday and help for anxiety levels maybe....

Warm waves to all BD's on and off posting here.

sorry Scaredycat it should have read "take it it slowly both of you, just the start of recovery after all"

Doodle Glad the Neurologist had some suggestions about DHs meds amd there is something else to try if no success with increasing. You must ne worn out. I hope tonight will be better. Yes, will see what Dr says on Thursday(crossed fingers I get F2F, I want DH with me and Ive other things to ask apart from HRT. Need to know theyre taking my pain seriously) Urologist early tomorrow. List of UTIs and MRI that notes nodule above bladder. Thanks Doodle. Take care of yourself. Hadn't realised about paroxetine. Ive still got 3 mths HRT from last prescription but would rather reach an agreeable stance.
Wyllow Take it easy. Hope you have a kind night. Thankyou for your words.
Hope a on BD are ok tonight.

Best night possible, Doodle.

SweetpeaSue I would have thought that the Gynaecologist's advice would "outrank" that of the GP, so really, the GP should have followed what the Gyn said. I hope your appointment with the Urologist goes well.

ScaredyCat Glad you and your DH are negative now and hope you're getting back to normal.

Doodle Good news from the Neurologist then. I hope the increased meds will help your DH at night. Hope you both had a better night last night. Hopefully, your husband's legs will improve soon.

Wyllow Hope you manage to have a better day today.

Well, DH and I didn't go far yesterday - Morrison's for coffee and cake, a bit of shopping. It was hailing and sleeting here. He never likes going out, wants to be at home all the time. I'm going to aqua aerobics this afternoon, not much else. Hope all BDers can manage to have a decent day x

Hoping there is some help/information for Sweetpeasue.

Enjoy the aqua, HVDY

My bad evening descended in to a 3.30 am thinking "how can I kill myslef" word popped into my head, as opposed to occasional wanting to die's, which is a warning sign step further, so made up my mind at 3.30am to ring my people this morning and had a decent chat at 11am so my head is back on a bit straighter.

Need a care review that's coming up on the 28th with the psychologist, I would like a meds and overall review - haven't seen a psychiatrist for 14 months (should be every 6 months, but that long gone).

Tomorrow is the ultrasound for the bump on my arm but expecting a cyst?

Afternoon all, I didn’t get on yesterday. Tuesday is a busy day for me and I have to make sure I get to bed earlyish as I get up at 6 on a Wednesday for my swimming lesson. I do think of everyone though even if I don’t read/comment.
Whiff I fully resonate with what you said about how life events and supporting others can affect your MH. You have been through such a lot and been there for so many. I’m sure they benefitted and appreciated it but I can understand how it’s taken it’s toll. It’s a shame you had to suffer physically too and must have been so difficult being labelled with something without a proper diagnosis. I remember once sitting in my son’s hospital room while he had one of his surgeries and feeling scared and worried and thinking “all this must do something to your mental health” and it didn’t for a long, long time but then it did and eventually I was diagnosed with PTSD. I’d naively thought that was what people in the armed forces got, but of course I now know it isn’t. Trauma is complicated and can affect people in lots of different ways. I hope you are having a good day today.
Doodle Your DH’s neurologist sounds good and it’s hopeful there are other options too. I hope the pain eased for him last night and you managed some rest.
HVDY your husband sounds a bit like mine, not really wanting to go out. If it wasn’t for me suggesting things and actually booking them, we wouldn’t do anything I’m sure. He calls me his “social secretary” 😂. Hope you enjoyed your aqua aerobics this afternoon.
Scaredycat Glad you’ve both finally tested negative. I worked on track and trace during covid and we used to say then people were probably immune for about 3 months but no one really knew I don’t think. Hope you both get your strength back soon. Get plenty of rest and as much fresh air as you can.
Sweetpeasue HRT is a bit complicated I think and medics have such varying views on it. My view is if it helps, then take it. I tried the patches but stopped as they became difficult to get and I’d started to bleed a lot. I’ve been on gel since last September as I thought it might help with my mood/anxiety and I think it has helped to a point, just not enough. I’ve started to shed again too just over the last week so will keep an eye on it. I’ve decided to stay on it though because I know it helps with joints and I’ve been struggling a lot with my ankles. You sound like you do need it though because your symptoms have returned since you stopped. I hope the medics see sense and start prescribing it for you. I hope your urology appointment has gone well today too.
Wyllow I’m sorry you had bad thoughts which must have been so disappointing for you after having a good day. I’m glad you got to speak to someone fairly quickly and it’s helped a little. At least you’ve got another appointment with the psychologist too. I hope your scan goes well tomorrow 🤞.

I’ve been visiting my bereaved brother and SiL today. They are struggling a bit and it doesn’t help that Mother’s Day is coming up for their DGD. Another milestone to face. Picked up DGS from school and taking him to football shortly.

I hope everyone is having the best day possible and sending lots of ❤️ Xx

Hi all
SweetPeaSue- hope the urologist appointment went well this morning. I,m so sorry you have such inconsistencies in your treatments - no wonder your anxiety is increasing. Fingers crossed you get a F2F on Thursday.
Doodle- hope you had a better night last night.I,m sorry your DH legs were so painful- I do think sometimes that moving about regularly is better for our legs - mine are much happier if I move them. But of course in yourDH case it’s not always that easy. Does he make the cards on the computer using his photos? Or maybe draw?
Wyllow- oh what an awful thought to pop up in the wee small hours. But you coped so well and were able to talk to somebody who was able to help you get your head sorted. Glad you feel a bit less frazzled.
Hope tomorrows ultrasound goes well and takes the worry away.
HVDY- Thank you - we were so glad to see the back of it - we had a walk this afternoon - well more of a mince actually but at least it’s a start.
My husband loves going out - Covid put a stop to that it was all we could do to stay awake😀 coffee and cake is always good.
Hope you enjoyed Aqua aerobics.

These last few weeks have really worn me out and anxiety about so many things making me feel exhausted. I,m not good at opening up but just want to say thanks for all being here- have a good evening and sleep well x

Candy spot on about trauma. It's like at the time in a crisis one copes and keeps on..... then it can hit weeks months or years later.

Glad getting out a bit can begin Scaredycat hopefully when warmer weather comes we can all brighten up a bit and get more fresh air. And that things for sis settle.

Whiff how is PIP progressing?

I had to go out and get meds and basics, rested, then had a Zoom. Good to be focussed outward because its a Zoom group trying to come up with better policies to move forward on M Health. Most of the others were MH practitioners and a GP. All said above all we want more time with patients establish good relationships and pressures they are under etc.

Me: low expectations of being well in various ways anytime soon but thats for the best really: live in the day: endure etc.

See you when you come in, absent BD's.

I'm so sorry I cant answer your posts. Didnt want you to think I dont care because I certainly do.Struggling. hl
Wyllow A horrible night. So relieved you had back up. We care,
Candy Thankyou for your caring. Good that Whiffs post resonated and you could share that and acknowledge that your past trauma experience has affected you well after. Thankyou for relating your HRT experience.
Scaredycat Hope you can regain strength soon.

In a lot of pain all day. Managed to get to hospital and back. Urologist putting me back on low daily dose of nitrofurantoin as prophylaxis. Arranging another Bladder Hydrodistention and looking into bladder under GA. Doesnt think he'll find anything. I cant bear Cystoscopy without GA so said last Bladder Distention helped a little though I didnt see much difference. Heavy dose of painkiller but knew youd be wondering how I got on. Thinking about you all. X

Wyllow Those horrible intrusive thoughts do seem to appear in the early hours when it seems everyone else is asleep. You did the right thing in ringing and speaking to someone. I often have those thoughts but then they are short-lived. As you say, live for the day. I take one day at a time and when I get those thoughts, I try to remember that tomorrow is a new day and will be better. Hope tomorrow's scan goes well.

Candy6, Those first anniversaries, birthdays, Christmas, etc., after a death, are always difficult, aren't they. I hope you enjoyed your time with your grandson. Does he play in a school team?

ScaredyCat, You had a "mince" . We "mooch" when we go anywhere.

Doodle Hope you and your DH have a decent night.

SweetpeaSue How did things go with the Urologist?

Whiff Hope you're ok.

DH and I went to a pub for Curry Night. We had a pudding as well and a pint. Son2 has gone to see Son1, so us old fogeys are getting cosy, ready for a programme at 9pm.
Hope all BDers have a restful night. x

Oh Wyllow I’m sorry you are having such thoughts. I’m glad you decided to speak to someone and it helped a bit.
The delay in having appointments with specialists like your psychiatrist causes no end of problems for people with long term health conditions. I wonder on the 28th can you ask them he you can have a complete review, Hope the ultrasound goes well and the result confirms it’s nothing.
Sweetpeasue I do hope you can arrange your F2F and you have your DH supporting you.
Have a list of questions written down. It’s so easy to miss something out or not be able to remember everything you wanted to know. DH was due to have another phone call from GP and I had written down 5 questions for him to ask her but she didn’t phone. I spoke to the surgery and they said she’d been very busy all day partly due to the junior doctors strike.
As we spoke to her yesterday she probably didn’t think it was urgent for us today. Hope to get to speak to her tomorrow.
Yes I’ve been on paroxetine for many years since stopped HRT. This is the first year since my hysterectomy that I’ve been able to wear a jumper. Until now I’ve had to wear T shirts and a fleece that I could throw off as soon as the hot flush started,
How did you get in with the urologist.
HVDY we did!! For the first time in 5 weeks we didn’t have to go walking round the lounge or sit and have a coffee. I’m really hoping it wasn’t a fluke and the extra tablet DH took last night helped. A whole night when the only times we were up were to go to the loo.
Legs, sadly are still a problem. They are painful and very swollen which is why i wanted to speak to the GP.
How are yours. Has the rash eased?
It wasn’t very nice yesterday weather wise was it. Hope you enjoyed your aerobics today.
Candy it’s always nice to hear from you. You don’t have to post every day especially when you have a lot on and such an early start. Hope you enjoyed your swimming lesson. Is it a big class? Do you meet up for coffee after?
I am so sorry for your bIl and SIL. Life must be so hard for them.
Have a nice time with your DGS.
Scaredycat you are quite right moving is a good thing for his legs. He does try but can’t manage too much. He did used to do cards on the computer, not so much now, although he is doing our sons birthday card.
Oh Scaredycat you are always here for others. It’s nice we can support each other . Hope you and your DH start to feel a bit more energetic soon.

Would that be "The Bay" HVDY?

Oh Doodle last night was good news! Fingers crossed for more, and you can get more help still. And that MrD well enough to get creative ). Cross fingers for call back tomorrow.

Sweetpeasue clearly a long way to go..but the urologist is clearly wanting to help and do as much as he can - a nice change - bests for the F2F tomorrow too.

Yes I will ask for a proper review on 28th. Meanwhile had another missive from EX. mild abuse/manipulative not a problem unless he's testing out if I reply - no intention of under any circs - and won't give up and it escalates. He was giving me advice should I find another man to let said man know how mean I was ha ha,

Doodle So pleased at long last you had a decent night. Do hope the extra tablet will have same effect tonight. Thats so disappointing about GP not phoning. Drs so busy.I didn't get much more than 5mins,10 max with Urologist. Was difficult to get a word in edgeways, he seemed to want to wind things up quickly. He had no knowledge of me having CT, not in GP latest notes. But he immediately said Chronic Pelvic Pain. I said no-Interstitial Cystitis. He said CPP is samd thing. Think he meant it covered IC as an umbrella term. I'm really worried that this pain now is falling under the radar. Urologist asked if Im down for pain management. Thats been on my record since last November when GP referred. Been put back from May to Nov this yr. Desperately hoping for GP appt tomorrow. Oramorph not touched pain today. I dont think they realise at all.
Sorry cant say more. Take care all. X

Crossing fingers on that, sweetpeasue.

Wyllow Thankyou 🙏

Doodle Great news about not having a better night. I hope the tablets are the cause and that you have many more decent nights. The rash is still there, from toes to calves. It's brown/orange so looks like lots of close-together freckles (I am fair-skinned) I hope you get to speak with the GP today.

Wyllow Not The Bay, but Saving Lives in Leeds. Fantastic and complex surgery. Your ex is persistent, isn't he . Don't let him get to you, you're doing well now.

SweetPeaSue Chronic Pelvic Pain can have many causes, one of which is Interstitial Cystitis. I hope you manage to get an appointment today.

I hope all BDers manage to have a decent day. I'm going to the day centre with my SIL (it was shut last week), so I'll leave Him Indoors a (small) list of jobs to do x