Black Dog 16

Sorry for not replying to all separately right now. In a bit of a state.
Wyllow I'm so pleased the op is over for you. Do they do histology on Alien or is there any follow up? Hope you're feeling ok and it's not painful. You will be tired physically and mentally. Don't worry about posting, just take it easy.
Appt was 11-30. Wasnt in best state as no sleep.Perhaps as I was last before his lunch he may have been irritated Also his computer wasnt up so he had no med history on me apart from the referral by Urologist. I have to speak briefly of Hysteroscopy complications as it could be relevant though I think my IC pain stands alone. He would see history anyway. I started shaking but tried to keep that side brief but felt I was crumbling.Told him of Urethral Dilation op and Distention op. He wants to do Distention and look into bladder. When done by last Urologist Id researched and he agreed to do Distention with least pressure(different pressure prefs in various countries) so aske about this. Because of discussion referring to that op, he took this to mean I wasnt trusting him and was v sharp with me. Trusting him was not an issue and I looked into his eyes and told him I trusted him. By which time tears streamed and I was in bits.

Why am I still having to bear the weight of other Dr's wrongdoing. To be fair, so are other Drs who treat me as they are having to share the discomfort of knowing something went wrong but try to avoid the awkward spots.
He even questioned if the pain was indeed in bladder, because of prev pain, but I insisted it was, and it is. The uterus pain has gone and not been there for months.

I've agreed to the op as my bladder needs to ne examined. He says as long as GP agrees he will do it on NHS. Not sure why GP wouldn't agree tbh.

Haven't been able to stop crying since and trembing inside. It would all seem so much easier if I wasn't herebut by that I mean hypothetically, so no alarm(though in reality it's true also.
I'm so sorry, youve all got your own things going on and I realise Im leaning on you. Everything seems too much and it all keeps going on.
Thankyou all for being here. X

ScaredyCat Glad the ADs are helping. Nice for you to get away and see the family. Have a lovely time.

Wyllow Glad all went well. You need recovery time now. Take it easy.

Hope all ok with SweetpeaSue today.

My friend picked me up, took us to a lovely garden centre (not been there before), we had cottage pie then cake - the cafe had 40 (!) different types of cake. Sat outside. Two little robins flitted about from table to table, so we threw them some crumbs. Rheumatology dept rang me, made od note of my concerns, and will get the consultant to ring me tomorrow, so we'll see what is said. Apparently, I'm under Rheumatology and Neurology departments.

Hope all BDers have been ok today x

Scaredycat well done for attempting what you fear and so hoping it goes well and boosts confidence a little. Hope anti d’s kick in some more.

Candy of my you are busy but always glad that you keep the swimming up.

I just re read the number of meds Doodle DH takes my goodness I’m mega I’m pressed on his spreadsheets and stuff!

I’ve just come out of the op. The op itself was fine… it was the general anticipation last night and today tho they said come in at 11.30 the op wasn’t till 2.45 and I was shut up in a room alone no wi fi. That freaked me out! But surgeon made super job of it I watched bits.

Rather tired and friend in soon so just hoping to hear from Sweetpeasue if you are up to it SP

Hi all.
Doodle- you must have taken such a fall- no way are you a wimp it’s so much to cope with after all you have gone through lately. Did you fall outside on a hard or rough surface? I expect you are nervous of taking the splint off- I would be- hope it’s not too painful to do.Glad the consultant was pleased with how it’s healing.
Oh yes your DH would be ringing continuously!! It always makes me jump when it goes off but I really would forget especially in the evening. I have one that is twice a day at equal intervals . Hours of endless fun eh!!
SweetPeaSue- hope today goes well for you and your head feels clearer before your appointment. Thinking of you.
HVDY- Baileys and music great combination.I so miss having a drink -you needed it!!
Horrible having palps in the night - glad they,ve gone now. Have a nice time with your friend - hope it’s sunny for you.
Wyllow- Hope your Op goes well today and the alien is sent packing.
I think that you already know that a nice flat is the way to go for you.you have too much to do on your own and your energy could be spent doing things you love instead of things you have to do. Something nice to think about while you recover- hope your new fridge freezer has some nice treats inside soon.
Thinking of you too today.
Candy- hope your day is less frantic you had such a busy day yesterday- you do work hard.
You are a bit ahead of me with the ADs- so glad they seem to be helping you. Yes I too wish I,d tried them earlier and listened to my daughter who said ages ago to try them.
Nadateturbe- hope,today is kinder to you.

Tomorrow we are off for a few days to visit family and have a christening at the weekend. I feel anxious about going away as it’s the first time since the AF became 24/7. But I just I have to conquer my fears and be glad we can see them. The ADs are beginning to help I think.
Will read and post if I can but it,ll be a bit chaotic!!!
Wishing you all some brighter days and take care allxx

Wyllow Good luck today. I will be thinking of you.
HVDY You must have been feeling anxious with all that's going on with your steroids. I hope meeting your friend today will be helpful and you have a nice time and a chat.

Such bad pain in early hrs had to take oramorph on top of Tramadol. Typical when I need head together this morning.
Looks sunny here so hope its nice where you all are. X

SweetpeaSue Thinking of you and hoping the pain has subsided. You cope marvellously. Don't lose hope.

Wyllow Best of luck for today. You'll be glad to get it over and done with.

Doodle With all you (and your DH) have to cope with, you're certainly not a wimp. I hope the splint helps.

Candy What a busy day for you! Hope work goes ok.

nadateturbe, ScaredyCat, EllieAnne and others - hope you're all ok.

I was up at 4am, had palpitations a lot but went back to sleep at 6. Didn't wake until 9am! (I don't like being late like that). Seeing my friend later. Hope everyone's day goes as well as it can x

Thank you nadateturbe. I've thought about low dose amitriptyline for pan but it interacts with a major drug I'm on heart wise so doubt I'd get it. I'll take the chance to talk to MH drug people asap as all the laxatives I take too.

Best wishes for tomorrow Wyllow3.
Thinking of those of you in pain and hoping you get some ease tonight.
I took amitriptyline. Don't tolerate pills well. I'll be OK. I know it will suddenly just ease.
Much less to deal with than others here.

Evening all. All caught up. Hope all have had as best day as possible given all the ups and downs. Weather has been lovely here although I’ve not seen much of it.
Wyllow wow, you have lived a far more varied life than me. I’ve not done anything like that. In fact, I’d probably say I was more adventurous now than I was when I was younger. Comes from the feeling of having missed out I suppose and I’m trying to pack it all in! I am pleased that my AC’s are confident and “going for it”. Good luck for your appointment tomorrow. You sound like you’ve organised for it well and you can now reflect and think what would be best for you in the future.
HVDY sorry you’ve been out of sorts. It was probably the side effects and I hope they’ve worn off and you feel better. No, my children wouldn’t bully anyone either thank goodness, nor would my DGS. In fact my DD famously stepped in and helped one of my DS’s friends when he was at the hands of a bully. They knew not to start on my DS after that! Pity about rheumatology not answering the phone. Seems to be quite common in a lot of public service departments nowadays. Too many “working from home”. Don’t know how they get away with it. With regards to how long I’ve got left in work, well, we’ll see. I officially retired (early) in 2018 but have gone back, doing various jobs. Mainly to help my MH but also the extra cash helps, particularly as I’ve got around 5 years to wait for my state pension. I get a small pension from when I first retired, but the extra money certainly helps.
Nadaterturbe I’m sorry you are in pain and fatigued. I hope you get some rest tonight and feel better soon.
Doodle you are spot on when you say it’s a case of the grass is always greener. I need to stop romanticising and be grateful for what I’ve got. I do try. I’m very grateful I didn’t have those awful feelings yesterday at least. Your DH sounds very organised with his meds and it’s obviously important for him to keep a check on what he’s taking. Glad you had the cast off, I hope it’s not too painful and you get some rest tonight.
Ellie Anne your concert sounds great and I’m sure “it’ll be alright on the night”. Good luck.
Scaredycat yes, I’m sure you must miss your son a lot. I feel your pain. Letting go is certainly high on the list of the hardest things about being a parent I think. I’ve been on my AD’s for around 4 months and they’ve definitely made a difference. I wish I’d tried them years ago. I hope your side effects continue to improve.
Sweetpeasue yes, I hope I have turned a corner thankfully. I hope the rest of your dental work goes well and also your appointment tomorrow. I sincerely hope you get some answers and are able to get some relief from the awful pain you’ve been having. Good luck.

Long day for me today, up at 6, swimming at 7, work until 5 then supermarket shopping so bed now for me. Night all and hope all have a restful night xxxx

HVDY Enjoy the rock music and Baileys. (so jealous 😩) (alcohol not rock music 😂) Hope it gives you a good night's sleep.
EllieAnne I am so pleased you are in the choir. As Wyllow said, that is just for you. Do let us know how the concert goes.
Wyllow It's clearly too late for lots of creams. 😂.
Ive made some notes for tomorrow but when I looked back in diary my IC wasnt bothering me at time of op or just after. So complicated and difficult to relate.
Dont know how you can cope with garden alone. I've bad back and knees and v limited. I think your own limitations will help your decision about moving. Will think of you tomorrow.
Doodle Thankyou for explanation of the splint. It sounds like a horrible medieval contraption! I hope the painkillers will help you to have a decent sleep tonight. Thankyou for your caring words. Your DH has so much to cope with pokr man. x

PS - atm using Arnica Plus not the Ibuprofen gel, last time I tried Volterol it made my skin itch but there may be alternatives.

Yes Doodle just makes me more certain the flat decision is right!

nadateturbe can you get something from the GP that’s helps with the pain and helps you sleep at night?
Ellie Anne sounds like a big event. Something nice to be involved in. Shame there’s a break till September. Are there other things you can get involved in?
HVDY Take no notice of me I’m making a mountain out of a molehill. The dressing is not so bad it’s just that I’m so squeamish. The consultant looked at my arm and said the scar looked really good. I looked at it and felt sick. I’m a wimp. 🤣
Sweetpeasue the splint is removable. It’s like a metal rod underneath with strapping on top. I haven’t touched it yet. It’s almost as painful as the cast but the consultant seemed to think the nerves in my hand from thumb downwards have been stretched and that area is still swollen. I will take some painkillers tonight and will venture taking the splint off tomorrow for a bit.
Yes you are right. When we get to the end of our patience or ability to cope we all feel fed up with it all. DH has said the same many times recently but he is feeling a bit better now so don’t give up hope.
Wyllow have you tried the ibuprofen gel on your pains. DH can’t take ibuprofen because it affects his asthma but he’s been using the gel recently on his bad back and found it helps.
You do seem to have a lot todo with the house upkeep and garden. That is why we moved to a flat. We couldn’t cope with it all.
Scaredycat if my DH set his phone alarm for every time he needed to take a tablet, it would be going off all the time 🤣
Good idea generally though as it’s so easy to forget.

Scaredycat meds alarms sounds a pretty good idea. You getting little walks?

Doodle that was a really bad break, wasn’t it? Scary to see it and a long procedure..really hoping the swelling will subside now but you really take care of it yes? Probably the swelling makes it numb? Keep it nice and clean now!

Thats quite something, EllieAnne the town hall - so glad you sing in the choir and have that just for you in your life.

Thank you for coming in nadateturbe that pretty much describes it when it hits me. It does help you have ID’s the same “dilemma” as symptoms similar.

I’m experimenting with Ibuprofen not too much tramadol but want to see how it goes tum wise.

I use loads of cream to hold off too much prune effect Sweetpeasue I like to look the best I can and don’t use make up. I know what you mean about ££ and dentists.
I get the gist. You really want to get something out of tomorrow so badly to use a slang term “its doing your head in”

I can only say that I will be thinking of you tomorrow as I realise just how much you need so relief from not just the pain but the worry of it. Come and report in!

I had to do far too much later today after all as as well as this morning (yes its a day op HVDY 11.30 am arrival until ???)

Thats because following tomorrow on Wednesday the gardener comes as well as new Fridge freezer delivery and I had to defrost it ready and - it took me 45 mins to water half the garden (def need to move!) or young plants would die

..brings home to me how I need to make my life easier, as there is no one else to do bits and bobs however I’m feeling.

It means all my energy is taken up just to keep mundane things going and not enjoyment

So my head is in completely out of it right now and I think extra meds to sleep as I just have to hold to together for next day and a half.

Scaredycat Another prune here! I have thought of fillers but then I think, but you can't really turn back the tide and then. what next? I hope the reduction in the ADs will help. I'm sorry you're having some side effects. There doesn't appear to be any drugs without them, I've found.
Thankyou for your kind words but I'm really not a brave person and can cry like a baby at times. Take care of yourself and hoping you soon feel better with the ADs.
Candy Such good news about you coping much better on parting with your son after your good weekend together. I'm sure thst, although you were looking forward to seeing him you were dreading the farewell. Hopefully now you have turned a bit of a corner with that awful worry. My DH had a horrid boss where he last worked- made a lot of people miserable. I'm sorry about yours. I don't think they realise the impact they have on others.
HVDY You were 'up n at' em' this morning, ready to face the day with your hair and make up done. I do love your spirit. I must get my face 'done' on a morning too as I couldn't go out without my mask/shield /armour on. Glad you enjoyed the Aqua aerobics. It's so typical of no one answering phones in the hospital depts, Ive found. I hope you will be ok though. It's not good to feel 'left to it'. So many must feel like this. If you were given a helpline then it's no use if no one answers it.
Nadateturbe So sorry you're having
a horrible time of it. The pains sound awful and you must be so sick of it. Our pain might be different but the suffering and grinding one down is the ongoing result. No sleep just makes everything worse. I hope you feel better soon. Be kind to yourself.
Wyllow I hope you sleep well tonight. Thinking of you tomorrow and good luck with your op. Send that alien packing! Rest as much as possible (easier said than done, I know). I have weird and awful dreams with Tramadol, though I have them without it too.
Doodle Oh your poor arm. It must have looked really awful when the dressing was removed. I'm not sure how you are expected to change the dressing yourself if you have a splint. How can you do that with one hand anyway? I'm glad Dr thinks it's healing well. It must have been such a nasty break.

Dentist this afternoon. Was going to crown my root canal tooth (done about 7 weeks ago) but it's been tender when pressed so sending for x-ray. Endodontist not sent her letter or x-ray yet. She removed v old crown on another and have temp one on. Need to re-mortgage house!
Bad night and scared and tired. Bowels seized up because of Tramadol. Dont seem to get balance between lax and painkiller right. So weary with it all. I think Urologist will suggest looking inside bladder. Tbh I think he needs to--but I know I can't tolerate anything up urethra. They'd have to put me out. Frankly, Ive got nothing left and I'm - was going to to say fed up but you get the gist. Just had enough now. But we've all felt/feel like that don't we? Sorry all.

Hoping everyone has as restful a night as you can. Take care. X

ScaredyCat Thanks. I rang the Rheumatology "helpline" number, left a message. Apparently, they take 48 hours to call back, so we'll see. I hope you continue to feel ok on the reduced dose of ADs.

Doodle Good that you've got the cast off. A plate in your arm - that must have been a very bad break. Fancy having to change your own dressing! That's rather poor, isn't it. Yes, I know the moon face will go, I'm just not used to seeing this fat mug . It's up to just under my eyes. Very pretty .

nadateturbe You don't sound well. Can you take anything to help you to sleep tonight? (antihistamine/painkiller/alcohol?) I hope you have a better day tomorrow.

SweetpeaSue, Candy, EllieAnne, Whiff, and all BDers - hope you all have arelaxing evening. I'm listening to rock music on the headphones, whilst drinking Bailey's (stuff it ) x

Doodle our next concert is in the town hall. It’s not just us we have a band and usually a soloist but we do most. Then we have a break till September.
No I won’t get involved with that lady again. I’ll be pleasant when our paths cross but that’s all.
Hope everything goes well Wyllow.
Sorry that you are so down Hvdy. It’s not like you. Those drugs are really affecting you.
Doodle glad the plaster is off.

Wyllow3 that's the problem isn't it. Having pain and not knowing the cause, and hoping it's nothing serious. I think mine are mostly PEM, but possibly a little of osteoarthritis, ibs. I have pains in my abdomen that seem muscular (carried shopping yesterday) Pains just about everywhere except my head. Like a bad flu.
Sorry to go on a bit, just trying to explain. It's not a good time. And of course just when you need to, you don't sleep. Sorry if you're feeling like this. I am just telling myself this will pass.

Sorry everyone, hope you are all ok. Just didn't want to ignore Wyllow3's question.
Thanks for kind thoughts.

Well I’m back home minus cast but with a splint. Doc says it’s healing well but after some discussion agreed that I could have splint but no lifting or carrying. Very bad break and I have a metal plate in my wrist. Long scar on arm which I’m supposed to change the dressing on 🤢 dressing under cast took a long time to get off as there was bleeding that had dried. Made me feel quite ill so I’m taking it easy tonight.
At the moment arm doesn’t feel much lighter. I think a lot of it is still numb.
HVDY that moon face will go down when you stop the meds. My cousin had the same when she was on long term steroids.
Glad you enjoyed aqua aerobics.
Wyllow hope you are having a better day today. Hope all goes well tomorrow.
Scaredycat must be hard for you with your son not coming back so often. I think I remember the last time he was home and how pleased you were to see him.
Have you been out today.?

Wyllow- it was good for you to have a proper chat with your son- I think he understands you pretty well. You are his Mum and he loves you and only wants what is best for you. It’s so much better if you don’t have to watch every word - our trouble is just overthinking everything isn’t it and a bit of catastrophising thrown in .
Quakers is a wonderful influence in your life and seems to bring you much comfort - glad the meeting was enjoyable and that you were also able to do a little gym work
Tuesday the Alien will be gone so hopefully one less worry to trouble you. Hope the Op goes well.
What a great seventies you had - a real free spirit - the confidence of youth.
HVDY - So not like you to sound so down- those side effects are taking a toll on you. I too think you need to talk to someone this week- October is too far away.
Glad you had that lovely day with the girls - more happy memories made.
Pleased you enjoyed Aqua Aerobics- my wrinkles are beyond help I feel like a prune!!! Hope you feel better tomorrowx
EllieAnne- that was a brave thing todo confronting that unpleasant woman- you,ll never be scared of her again. She may have been regretting her actions but I wouldn’t have too much to do with her if you don’t need to.
Your choir will be great - it’s a lovely thing to do.
SweetPeaSue- the way we feel about our AC and not burdening them with our worries is really just the Circle of Life . When their children become adults they will feel a bit redundant just as we do now and remember us like we do our Mums.
You are incredible how you deal with all your awful pain . I do hope the urologist will be able to help you this time.
Candy- it’s good to hear that you were able to enjoy the time with your son without the awful feeling of loss when you part overwhelming you. I understand a bit how you feel as my DS has lived abroad for many years and for so long I thought my heart would break when leaving him or him leaving. Now I am just glad he is happy and enjoying his life although I miss him just as much.
Glad your ADs are helping you- how long have you taken them? The reduction in my dose has helped a bit with the side effects - just hope it will be enough.
Nadateturbe- sorry you are feeling poorly and hope you soon feel stronger.
Doodle- we too wanted to live by the sea and even found a house in our favourite place but we faffed about and lost it. Still see it sometimes but it’s too late now and like you life had other plans.
Your DH is a Pill Whizz- he must sometimes get so tired of having to do all that Planning daily.
I,m so scared of forgetting any of my meds I have the phone alarm set at the required times .
Hope the hospital was pleased,with your arm today and that it is less swollen . Hope too you didn’t have to wait about too much.x
Love to all

Wyllow Thanks. I hate to complain, especially when so many are going through such worse things. I'm in a better frame of mind today. Best of luck for tomorrow. Is it day surgery?

But its never "moaning" here *HVDY .

I have just had to do a number of things that I won't be able to do post op unfortunately

but its up to me to do nothing else the rest of the day. But it did include a very short swim and very long hot shower.

nadateturbe I have general over body symptoms that I don't know are osteoarthritis or PEM. Would you say symptoms can be similar between the two?

Wyllow3 and nadateturbe - be kind to yourselves today, have a treat (chocolate/cake/drink/bubble bath), if you can.

Doodle I was utterly fed-up yesterday. Perhaps to do with the steroids, perhaps this huge moonface (I hate my face at the moment, but my wrinkles are plumped up). Nobody answered when I rang the Rheumatology "helpline". I've come this far, got 6 more weeks, so will stick it out. Aqua aerobics was good, thanks. Your DH must get sick of all the medication. He does well to monitor it all like that. How's your wrist today?

Candy I wonder if it’s a case of the other man’s grass is always greener. Living in a city can be exciting it can also be noisy and exhausting. Perhaps we all dream of what we haven’t got and imagine how much better life would be if we had it.
DH and I have always wanted to live by the sea. I love the beach and cliff walks. We never made it and won’t now but I wonder if it was that we always felt on holiday there and could put our worries behind us. In view of what’s happened in our lives I’m glad we didn’t make that move.
You’ve done so well to have a good time with your son without the usual pangs. Hopefully you can build on that now and feel better about future meetings. I Hope that means the AD are working better .
Wyllow how DH copes with his meds I’ll never know. He has a spreadsheet of what he has to take and when and ticks them off as he goes. Some morning, some lunchtime, some evening and some throughout the day. Somewhere around 20 tablets with 3 different inhalers thrown in for good measure.
I’m not sure children ever understand their parents anymore than we understand them once they have moved away from home. The two way protection of us not wanting to worry them and them not wanting us to be concerned (or interfere in their choices) . Our sons have both made decisions that DH and I thought (to ourselves only) were the wrong thing. As it happens, they were right and we were wrong.
Unless you live very close with someone you don’t get to understand them really. Acceptance is different. Accepting others as they are and caring that is important.
I loved my mum as much as anyone can but it was never the same as the love I have for my own sons. I worry about them far more than I did about my mum.
You’ve certainly lived a very varied life and made some brave choices. I’ve never done anything like that.
HVDY you don’t sound you usual self (which is a strange thing to say as we have never met and are “talking” virtually) but I do think the steroids have a lot to do with it. You were on a very high dose and it does take a while to get over. Have you tried phoning them yet?
No DH doesn’t use a dosset box (firstly I don’t think they make them big enough) some of his tablets look similar (white and round) and can be dangerous if he takes too many or misses one. Also some he takes every day, some every other day. By checking them off on a spreadsheet as he goes he can look back later and check what he’s taken at what time on each day.
Glad you are making the effort for your aqua aerobics, Hope it makes you feel better.
nadateturbe so sorry you are not feeling great. Hard to have the energy for doing things when you don’t feel well.
Hope the pain eases and you have a better day. Take care.
Ellie Anne is the concert in your church? I’m sure you’ll all be fine by then. Glad you had a better sleep.

Warm wave back, both. x
How to "pass the time" without demanding activities is hard.