Black Dog 22

Doodle So glad you explained to the secretary about your DH. Your panic was completely understandable- you have had such a tremendous shock and it can be hard ,at the best of times, to decide about operations ,let alone right now.You have that bag packed for next time Doodle. Wishing and praying you strength for every day.

Will reply to all tomorrow. Bit of a difficult day and so worried about DH . He seems even worse today and I really don't think he should be waiting even 2 weeks. If he's the same tomorrow I'll be doing my best to persuade him to go to out of hrs.

Love to all you.x

Doodle I'm glad today was a little better. I know you wont be looking forward to it, but it's good you won't have a long wait for your op.
Wyllow3 great you got out again.
Very tired, had coffee with my sisters this afternoon, quiet venue, so no noisy music. So lovely to chat, lots of laughter. I was worried, but I was ok.
EllieAnne sorry you lost your post. I'm sure it was ok.x
Hello Zakouma66 hope you are ok. You're right, every little achievement is good, a step forward.
Chat tomorrow, hope everyone has a peaceful night.xx

My iPad is on a go slow tonight,
nadateturbe sorry you missed your art class but if you’re tired the best place is home. I have had a better day today thank you. Yes had a good cry yesterday.
Wyllow glad you got out. Hope you get more help soon.
Ellie Anne you can say whatever you like here. Have you been out today? Will your family be seeing you over the weekend?
zakouma how has your day been.
Sweetpeasue I bet you can’t wait for your DH to see the rheumatologist. Hope the prednisolone is helping even if it’s not a high enough dose. How have your day been.
Scaredycat I hope things resolve themselves with your sisters family. She’s had so much to cope with.
Have a good weekend all. X

Had a phone call from the hospital this morning offering me a place Monday. Normally I would have accepted but at the moment it sent me into complete panic and I couldn’t think straight. So much to organise and I’d booked things for this weekend. In the end I explained about DH and my muddled brain and the secretary was very nice and said I would be top of the list for the next place. Now I know it could be soon I will get a bag ready for next time she phones.
HVDY glad you’ve had a better day. Will your family be round at the weekend.? Will it be your son’s first Father’s Day?

Wyllow3

Read your days and the ups and downs. did go for short walk worker, did help a bit, it will be some time before I get someone for maybe 2/3 days a week for bits.

Love an respect to all, Doodle your grief so new xx and others in a lot of pain or not good days

Night night BD's.

Getting dressed and getting out are a major achievement.

Massive well done.

Hope all BD have an OK day.

Wrote a long post last night and regretted some of it this morning. And would you believe it isn’t there!
Must have forgotten to press post.
Some things are best left unsaid.

Read your days and the ups and downs. did go for short walk worker, did help a bit, it will be some time before I get someone for maybe 2/3 days a week for bits.

Love an respect to all, Doodle your grief so new xx and others in a lot of pain or not good days

Night night BD's.

Wyllow I hope you got out for a walk with your health worker today. I'm sure you enjoyed having company. It's hard not being in contact with people. You end up becoming a bit nervous about chatting and can become a bit antisocial, which is why I often force myself to do it and hope for the best. I don't want to become even more isolated. I'm glad your ex is leaving you alone. Don't worry about the house, concentrate on your health and then you can think about jobs in the house.
Candy I'm sorry you haven't had a great day. Sometimes days just don't work out as we would like them too. But as you say tomorrow is another day. Best to be philosophical about it. I hope you've had a relaxing evening.
I haven't made any art classes this week. Visited son and DiL on Sunday and had hospital on Tuesday, so rested Monday and Wednesday. Still need to rest today. There's no point in joining anything else as I can only be active half the week.. I'm used to it.(mostly).
Scaredycat I'm sorry about your sister. It's very stressful and sad when you have family problems. It's good that you are there for her. I'm sure she's glad she has you to talk to.
HVDY I can't believe you've developed this awful hip pain so quickly, and having to take so many painkillers all the time. But at least you're sleeping, thankfully. I do hope you get your test soon. And no your GP can't know, she can only guess.
Sweetpeasue I'm glad you have a urologist whom you like and trust. It makes such a difference. I don't know that drug, but perhaps it's worth a try. Your poor husband in pain again. It must be hard for you too, knowing he's suffering so much. Fingers crossed he sees the rheumatologist soon.
Doodle I'm giving you a big hug. I feel so sorry for you having such a miserable day. The music didn't help. Music can be so emotional. Maybe you need to have a good cry. I hope you manage some sleep tonight and that tomorrow is a little bit better for you. And I do hope you get a hospital close to home.
My husband makes dinner almost every night. I find loading the dishwasher and cleaning the worktops easier. So I try to do this, although we often share the task.
Sorry if I've left anyone out. And I hope everything reads all right as I'm a bit tired.
Love to everyone on BD. Hope you have a peaceful night.xx

SweetpeaSue I'm glad the Urologist was nice and understanding. When I saw a consultant, about 5 years ago, he asked me to keep a fluid diary (in/out). It turned out I'd been drinking 8 pints of (mainly water) fluids a day! I hope you give that drug a try, it might make a difference. You've got nothing to lose by not giving it a go. My pain has been bearable today, thanks, but then I haven't done anything. I hope your husband starts to notice some improvement on the steroids, but if not, I expect the Rheumatologist will increase the dose. It's been raining for about 4 hours here now. It's not great, but I can't stand the hot weather.

Doodle I don't blame you for not wanting to go to the hospital in London. Hope you won't have to wait long for a nearer place. Your feelings all need to come out, somehow. Perhaps you've been putting on a brave face for your family? It might be that the finality is now really hitting you. I'm so sorry. Love to you. x

ScaredyCat Family problems always cause upset, don't they? Just when things seem to be settled, something crops up. GD1 has been playing up again, at home and school, causing Son1 and his GF concerns. I hope your sister's worries sort themselves out.

Wyllow3, Candy6, and ALL BDers - hope you all have a peaceful night. x

Doodle I can't bear beautiful music if I'm already feeling sad. Just seems too overwhelming. I can well understand you'd rather be in a local hospital nr to your sons. My DH is taking 30mg of Prednisone though GCA requires between 40 to 60mg. Think Rheumatologist will put him up again when he sees him in couple of weeks.
Hope you sleep peacefully Doodle.x

Sweetpeasue thank you for your kind words.

Sorry should be husband not hand. My iPad on a real go slow.
Wyllow I wish you talked to people more. Sorry you’re so depressed. It’s and awful way to feel isn’t it. Hope your worker can help.
Candy I was doing well till yesterday. They played some sad music in church and that made me cry and I don’t seem to have been able to stop since.
Sorry you haven’t had a great day either. Hope things sort themselves out soon.
Scaredycat that’s a really nice post. You are dear to us too.
It’s good your sister has you to talk to. Family worries always cause us anxiety and upset.
HVDY I emailed the hospital today and they’re one of the ones that have been hacked so they are only running at half capacity while they try and sort it out. They did offer me the chance to go to a hospital in central London but I’d rather go locally so I’m closer to our sons. If the wait becomes too long I may have to rethink.
Sweetpeasue so pleased you liked the Urologist. At last someone who will listen to you. DH was on solifenacin for years, it helped him.
Sorry your DH is still suffering. It Might a while for the steroids to kick in. Can you ask anyone for a higher dose if the 30 mg codeine doesn’t help?

Doodle You don't need to worry about posting, really. Honestly , I wish I could take all this pain away from you. So sorry Doodle. Sending so much love and hope you have a bit better of a day tomorrow. 🫂 x

Sorry all not up to writing much tonight. I’ve had a really miserable day. Only needed someone to look at me and I was in tears.
Sweetpeasue I know what you mean. I’ve had trouble with people before not knowing how to refer to someone after they’ve died.
Surely they won’t cancel your DHs appointment again. Hoping he gets seen soon. Hope your Urology appointment goes well.
You seem to love your garden and with all these new plants it should look lovely.
nadateturbe doesn’t sound as though you’ve had a great day either. Are you feeling any better now? Will your hand make you dinner?

Doodle It's so bad that the surgeon didn't get the letter of referral. I'm sorry your breathing is bad too and hope you get an appt promptly after the mistake made somewhere in the system. How have you been today?
Nadateturbe Really , my condition is better than your own as I can still get about. I think you're so good to be able to koko - it must be so difficult when you've had a good day then knowing you will have to pay for it the next. Yours is a cruel illness indeed. I don't think I've watched Outnumbered, I'll have to give it a go.
HVDY Think you're wise not to start physio till after the x-ray and you know what you're dealing with. Don't want to make things worse. The co-codamol do make you feel a little out of it and drowsy but they really help with pain. Hope you've had a bit of improvement today it sounds agonising. x
Candy Hope your day has been better today and you've caught up on your rest.
Wyllow Hope you've coped with the basics again today. Did you see your worker? Hope she had some good news regarding more help. Yes I think I could manage a hairdresser coming to the house. Will need to get DHs medical appts sorted then I'll try looking some up.

Saw Urologist and she was lovely and also very experienced(she did a small procedure 11 yrs ago). I know there's no miracle cures for Interstitial Cystitis but at least she didn't dismiss I had it, as did last Urologist. She recognised that IC is sensitive bladder and not 'overactive' but thought solfinacin might help . She's left it to me as I'm not keen , but think I'll give it a try. Not keen as I get retention and this drug can make that worse as well as cause constipation which my painkillers cause. Have to keep a diary for a couple of dys (fluids in and out) for next 2 weeks then again in 3mths. She will see me in 4mths. I liked her.
DH suffered today with head and sweats still happening(fever can be another GCA symptom) . Increase up to 30mg no difference so far.
So cold and cloudy here. Where is our summer?

WhiffEllieAnne**Scaredycat**Allsorts Hope everyone has had a reasonable day and has a peaceful night. Love to all.

nadateturbe I agree, I won't do physio until I've had an x-ray, although the GP felt sure the pain is to do with my ligaments or nerves (she can't know, though, can she?) I've seen Outnumbered before. It's a pleasant little programme. Sorry you had such a bad day yesterday. I hope things will be better for you today.

Doodle That's really poor, you waiting all this time but the surgeon hadn't got the letter. I hope you won't be waiting much longer, you've had such a lot to contend with. Sketchers also do sandals. I might have a look at getting some for the summer (that 2 weeks of the year ).

SweetpeaSue I knew what you meant, your comment was fine. It's both hips but not actually my hips - I think it might be the hip flexors and/or trapped nerves. I can't believe I'm like this. I got another prescription, although I'm trying to take no more than 3 or 4 Codeine a day. The Mirtazapine AD makes me drowsy, so sleep hasn't been too bad. I Googled Scabious - what pretty flowers. I hope your appointment today goes well. It must all wear you down, having pain and problems yourself but now worrying about your husband, too. I hope the steroids help him a bit, at least.

Wyllow3 It's the day for your MH worker, isn't it? I hope you might be able to go for a walk with her. Koko each day, we all wish you well. How I wish we all lived near to each other.

ScaredyCat Hope you're having a lovely time with your sister.

Candy6 Today's another day, and I hope it goes well for you. I tell myself that "tomorrow's a new day".

Whiff, EllieAnne, * Zakouma66* and ALL BDers - hope you manage to see a bit of sunshine today. x

Hi all.
I,ve just caught up with all your posts. You are all so brave and dealing with what life is throwing at you in buckets.
My dear Sister has so many family worries I,m worried about her. It is lovely being with her though and just able to give her a proper hug and chat for hours.
Doodle I think of you very often and hope each day has kind moments for you.
Sending love to you all you are very dear to me. KOKO

Evening all
Doodle you seem to be coping well and at least doing some “normal” things. Your sons sound like a great support to you and I’m sure you appreciate that. I hope you get an appointment soon. Honestly, the things you hear about the NHS, it just beggars belief. Sign of the times I guess and being so under funded for so long and then it’s the patients who suffer. I hope you have had a decent day today.
HVDY sorry about your hip pain. You do very well going to aqua and looking after Chubby Chops. I too need some plants for my colourful hanging pots. Just need the time to go to garden centre.
Sweetpeasue it’s good your DH hasn’t got any permanent damage to his eyes. It sounds like they’re “on it” at last. Pity you had to go through all that though. I hope you are pain free and your appointment goes well tomorrow.
Nadaterturbe I’m sorry you are so isolated at times. It must be so difficult for you. Part of my coping with my MH is getting out and about and I truly feel for you that you can’t. You do so well and I hope this thread is a comfort to you. Are there any other groups you can join that might help?
Wyllow you too have a lot to cope with. I hope the appointment with the MH worker goes well tomorrow. You are doing really well to carry on and your determination will see you through. KOKO.
Scaredycat I hope you are having a nice time with your sister. It’s nice to have a break and catch up with family. Enjoy.

Busy day today and not really a good one, nothing major but things just didn’t go right. Just one of those days you get from time to time. Ah well, tomorrow is another day and all that. No time for nana nap either so tired now. Love to Whiff Ellie Anne Zakouma66 and everyone else. Night all xx

Another day with quite a lot of desperation. Worker tomorrow. Haven’t spoken to anyone since last week. I think you asked about my meds Doodle am on a shedload, it’s partly having been an inpatient long time ago. Got physical symptoms haven’t written about as I have a funny thing that writing them will make them too much!

Whiff wise to say, “Everyone who is on Black Dog is a survivor and battles everyday to have a life they want”.

nadateturbe spotted you else thread, (nice!) you had a testing day yesterday so not surprised you are tired today.

No pestering from Ex but the trauma with him, twisted joy and hurt, remain in this house - garden not done, windows not done,, not kept up.

Oh yes HVDY the “what terms think of us” thing. So sorry the pain has been so bad.

Doodle very much hoping you hear soon about the op. So very much on for you, your life turned upside down.

Thanks for kind detailed wishes Sweetpeasue I wish this things did make a difference. Glad you got out but sorry to hear about the afternoon. So hoping tomorrow is helpful! I'd like a hairdresser to come here, would that work for you.

Night night BD’s both present today and others here in spirit.

Doodle I'm sorry, that is so unsatisfactory and disappointing the surgeon not getting the referral. I hope whoever was at fault tries to get you seen quickly.
If your buying new shoes, I think a shoe stretcher might help. I always have to stretch right shoe before wearing new shoes as I have arthritis in that foot.
Sweetpeasue your comments to HVDY sounded OK. I'm sure HVDY will tell you that.
I'm sorry you're having such a simply awful time. I'm sure the food you've been eating has affected your bowels and it will settle a bit. Perhaps, if possible, pack a sandwich if you have another long spell in the hospital.
It's so kind of you to write such a lovely long post to everyone when you're not feeling great.
And thanks again for your understanding. Wouldn't it be great if people understood and paid us short visits to cheer us? I'm in bed nearly all day, terrible brain fog, some aches, I got my pacing wrong. Its been a tv and Archers omnibus day, all I can manage. DH just came and watched Outnumbered with me, which is very cheerful. (I think you might like it HVDY)
But really Sweetpeasue, it's better than what you are coping with.
You have done so well today in spite. I love chocolate muffin! Scabios plant looks pretty. You do know your plants! Hope you get to bed now and have a good rest before hospital tomorrow and hope it goes well. Try not to worry about the rheumatologist. It will most likely go ahead as scheduled.
Wyllow3 I too hope your ex isn't pestering you, and your day has been ok.
Quick hello to everyone else, hope you have had a good or at least OK day.
xx

Oh HVDY Just read my post to you and think it sounds terrible about my remark 'Is it just the one?' referring to your hip! Didn't mean it to sound like that. Only sometimes hips can 'go' together at same time. I'm always getting myself into a pickle about stuff! Hope you understand.

Been trying to catch up with everyone -memory is bad these days.

Nadateturbe The jigsaws must help concentrate your mind away from pains and worries. It's easy to feel resentful of our circumstances when things are bad I think-at least I have done- and its good yo focus your thoughts on something. It must awful and like Doodle's says when you look OK from the outside others don't see your real disabilities. I don't know what the answer is. I don't like to sound like I'm moaning but I think we can all be put on the spot and feel like we have to justify why we can't do such and such because pain can be so unpredictable and your circumstances are so much worse with your condition. I do feel so sorry for you.x
Doodle How are you today? It's good to hear the voice of someone we love and has passed. I hope you don't mind me using the term 'passed' - know there's often controversy on GN about how we refer to someone who's died though I think 'passed' or 'lost a loved one' seems less final and somehow gentler. I so wish it hadn't come to this though wishing things had been different is pointless for you I know. I'm just so sorry. I have my dad's voice on tape but not my mum's. I wish I'd had videos too. I saved an unopened letter(my mum sent ones to myself and my sisters) until after her funeral. I really wanted to open it but knew ,once I did, there would be no communication left iykwim. Dear Doodle- so very sorry. Oh, about the sleeping tablets , I once had zopiclone, many yrs ago and was on them for a few yrs. Once I was taken off them I never had any side effects ,though know we all react differently.
HVDY Your poor hip. Is it just the one?
Sounds so awful and you do so well to keep going. Does it affect your sleep? Hope you enjoy your time tonight- I've not seen that one either. It's amazing it's Chubby chops birthday so soon . Time passes so quickly.
EllieAnne You are doing well to do the garden all by yourself. It can be such hard work and you already do so much for your son and his wife too. Your family are so lucky to have you and it can't be easy. I hope you treat yourself to some little luxuries too -you deserve some treats just for yourself.
Zakouma66 I do know what you mean by others 'reading' your thoughts. In the instance of hairdressers, I have this thing of the hairdresser and others looking on being able to 'see' my agitation and shame about my reflection. Its so bad I've had to stop going, which of course isn't good.
Whiff It must have been so sad seeing your mum deteriorate. I do understand how looking after others affects you physically and mentally. I only looked after my mum for about 4 weeks( moved in and slept there) but it was so awful. I really don't know how you could keep going for so long , and with your disability too. It's truly remarkable.
I love to hear of your relationship with your DH and the humour you shared together.
* Scaredycat* Hope you're having a truly great time with your lovely sister. It's so good to reminisce about good times and funny times in the family isn't it?
* Wyllow* Glad you've been able to wash and dress the other day, I realise you find it so very difficult so well done. Just wish you could get more help. Hope your ex has stopped bothering you with upsetting emails please don't take notice of him. Koko and I'm sure you'll come out the other side. We are all hoping so much that you can find the strength to keep going. Can you use some of your beautiful shower or bath oils you used to like and just breathe in the scent.

Had a coffee out with DH this morning and chocolate muffin . Bought some canes, compost and blue Scabious ( horrid name for a lovely flower).
Bad bowel and bladder pain this afternoon. Though there'd be consequences for different routine last couple of dys and eating biscuits in hospital as didn't want to leave DH to go and buy sandwiches or could miss Dr.
D H still with headache but managed to be in garden. I do know it's GCA and 30 mg of steroids will not be enough and I'm so worried the Rheumatology appt will not be cancelled.
Back to bloomin hospital tomorrow for my Urology appt.

Candy,Allsorts, Nanny and all BDs and those reading ,wishing all a peaceful night.

*HVDY no I haven’t got a date for my op because apparently the surgeon didn’t receive the referral letter. So I’ve wasted three weeks waiting to hear. I’m hoping they’ll sort something out soon as my breathing isn’t as good as it could be.
Hope you get to hear about your physio and X-ray soon. DH was on codeine too. He had 8 a day for about 9 months along with paracetamol and oxycodone.
nadateturbe yes the codeine you can buy OTC is only 15mg I think. The tablets from the GP are usually 30mg.
I must look into getting some sketchers. I need some new shoes but I have a problem with one of my toes which makes it painful.
Whiff I’m so glad you’re enjoying life again. You’ve been through so much you deserve some sunshine in your life,
Sweetpeasue how’s your DH been today? B

It sounds extremely severe HVDY. Of course you would need it under control to be able to do physio. But I don't think people should have physio without knowing what is wrong. Hope you enjoy the film. Not one I've seen.

I've livened myself up a bit now , put my face on, fluffed my hair up. It's a little, local theatre. The film is The Kingdom of the Planet of the Apes. It's really cold here. Just been watching 3 squirrels scoffing the nuts and sunflower seeds I left out for them.

nadateturbe "I wouldn't be able to have physio until the pain is under control - last night was terrible, so I had 2 Codeine this morning" was in reply to you last night