Black Dog 16

Wyllow Oh that's hard to find a Quaker friend has died unexpectedly.
It sounds as if it's a good group who are ready to support each other when times are very grim. That poor man must have been helped a lot from the meeting and from all of you.
Waking up from sleep just brings reality of your pain, mental or physical crashing in. I hope the fresh air and being outside has helped the anxiety.
Nadateturbe The effect of the painkiller would have worn off when I went to sleep but it could have still been affecting me. I have had other sleep paralysis episodes before and if I know DH asleep next to me Ive tried to cry out to alert him. Takes huge effort. Or try and move hand. Sometimes he hears me and can wake me up. Today the awareness of DH while asleep seemed to go on a long time. I wonder what the noise was this morning that you thought you heard. It must take a lot of time to get the skills to know how to mix paints for required colours. My DH can be on with a picture for days and sometimes feels annoyed with himself when he feels he should have stopped at a certain point. He does enjoy it though.
Doodle Glad you got out for a walk together. It is frustrating to look back on what we used to do isn't it but it's still possible to progress each time slowly, I hope. My fitness levels have sunk too. Does your wrist feel any better in that splint? Its a good job you're not a heavy sleeper or your DH might swallow those extra tablets. I can imagine the exchange when he insists you've told him to take them. 😂. Afraid the urination problem happens every day though moreso during night and morning. My bladder often feels constantly full when it isnt and I try to relieve it but only pass drops. Sometimes, usually afternoons I can have better wees.
Hope you sleep well and win the battle with the T-shirt.
HVDY It doesn't seem right that you've had to take all those steroids for so little improvement. I'm so sorry, thats awful. I would feel well shortchanged with that. It seems strange theyve had little effect. Do you still have the swollen legs and rash? I know its different but I could hardly move shoulders and arms to get out of bed, it was a huge struggle, but after 3 dys of prednisone the stiffness vanished. Its a shame you cant speak to someone when you've 6 weeks left of having to take them.

Sorry, thought Id lost post then🤦‍♀️
Posted too soon.

I hope I can remain strong but feel the pain levels aren't going to improve or go back. When I hear how you all struggle I know I'm not alone. I'll need to see GP next week as still dont know whats been sorted. If I'm to receive appt for op or just to stick with the other appt I had to book for NHS consultation. The text from secretary wasnt clear at all.

Hope everyone has a peaceful night.
Take care all.

Missed your posts, Wyllow3 and Doodle.
Just going to sleep. Talk tomorrow. Goodnight, hope its peaceful for everyone.

Night all, Doodle yes its the speed of the "before and after" thats so hard. Like you say, from walking miles, to struggling is horrible isnt it. Glad to hear you got out. How are MrD'd restless legs atm and nights?

Doodle stitching wise I did 2 years city and guilds Textiles/embroidery so different stuff, but that was a long time ago. First thing to tackle would be some clothes alterations.

Stayed up later to try and wake later. Wave nadateturbe and all BD's see you tomorrow.

SweetpeaSue I've still got the rash (a new one appeared last week), my feet/legs still feel as though they're burning. Nobody rang me last week as promised. I've got a lot of side effects. I've had short courses of Prednisolone before, for Asthma, and they worked within a day or so. This time, 50mg a day for 4 weeks etc has done nothing. Ah well, it could be worse. I hope you can manage to see or speak to a GP tomorrow to get your appointment details sorted out.

Doodle I think you're wonderful hemming a t shirt with a broken wrist. You're an inspiration. It can be depressing thinking about what you used to do. I look up at the lovely Mourne Mountains and remember wistfully how we used to climb them. Better not to think too much about it. I'm sure though that once you get out more it will improve.
Wyllow3 I'm sorry to hear about your Quaker friend dying. That was a shock and very sad for everyone. And of course would lead to you thinking about other losses. I hope you feel better today.
I think you're right about relationships, taking it gently. I feel intimidated by my daughter although we love each other, but I always answer in a way I feel is acceptable. We don't need to share everything but a relationship needs to be 'real'. iykwim, I'm not very good at explaining.
And yes, getting out when the sun is shining is good.
HVDY What a great diet! 🙂. I haven't had a Boost for years, used to be a favourite, chewy and chocolaty, yum.
Sweetpeasue I wonder did you waken better this morning? The noise was a heater clicking on and off, translated to husband in the kitchen 😁.
Re painting, yes, knowing when to stop is important.
Doodle I don't paint as often as I could. Isn't it strange how you have to sometimes make yourself do something you like?
Hi to Whiff, EllieAnne Scaredycat and others..

Natadeturbe I had a phone call with my dd yesterday and she picked on every thing I said. She’s really hard work so I prattle on to fill the silences and probably annoy her. And I feel quite intimidated too.
Both my d in l have good relationships with their mums and can chat away no problem but my dd has been tricky since childhood.

EllieAnne That sounds very like how we are. We love each other, she puts on cards, love and miss you always, but conversations just aren't what they could be. I am always wary about what I say, and let her tell me off for things she doesn't agree with.
It's annoying and puzzling isn't it when you see others with better relationships and wonder why. But good to know you're not alone.

Hi all.
These few days away have been full of different emotions.
Two different houses and two different families. Lovely to see everyone but totally exhausting physically and mentally.
The Christening was a strange affair as unbeknown to us the young parents had split up a short time ago- awkward!
He is a dear little boy and was so good in the church- I just felt sad for all sorts of reasons.
We are off again in a weeks time to have a UK break to replace the holidays we had to cancel due to illness. Hotels this time though - not so stressful.
What a lot you have all had To cope with while I,ve been away .
HVDY- those steroid side effects sound alarming and I don’t blame you for not wanting to take them again. Hope they subside - sometimes side effects are worse than the original problem aren’t they.
Ironing or chilling? No contest especially with a Boost bar involved.
Hope you,ve managed to get out in the air today - just wish that cold wind would go away.
Wyllow- so sorry your friend lost his wife- what kind people the Quakers sound.
30 minutes was a long Gym session - I hope your back is feeling a bit stronger.
Clothing is all about comfort for me- I hate restrictive clothes.
Nadateturbe- love your painting - you can almost feel the warmth and the colours are gorgeous. You are very modest.
Doodle- it’s amazing how quickly we can lose our fitness but just a small walk is better than none. It’s great that DH can get out again and the fresh air does you so much good. I would imagine too that your fall has shaken your confidence a bit too.
You are Superwoman sewing with one hand - I can’t do it with two!!
Good to see you enjoying your wine- such a nice feeling isn’t it. I really miss it.
SweetPeaSue- the sleep paralysis sensation must be very frightening.
I do,hope you manage to sort things out a bit this week - I can’t believe how much you have to struggle to get anything organised to help you.
The pain saps your strength I,m sure but you will stay strong - we are all behind you.
EllieAnne- I,m sure your DD is always pleased to talk with you - she can be herself even though sometimes it’s difficult for you.
Would it be possible for you and her to have a couple of days away together in the Summer so you can talk at leisure or just be quietly together in a relaxed settting. DH could cat sit!
Whiff,Candy, Allsorts,Nanny and anyone I,ve forgotten hope you have a peaceful night.

Hi Scaredycat it must have been lovely to see everyone, but certainly draining. You'll need a good rest now. Hope the AF wasn't too troublesome. The next holiday will be more relaxing.
The Christening perhaps felt awkward but not so unusual nowadays. Sounds like the little boy has caring family.
Thanks for kind comments re art.

HVDY. Like you I can’t resist temptation which is why I’m having a Fry’s Turkish delight with my coffee tonight. 🤣
DH has had essential tremor for years. It’s quite bad. He struggles to hold a cup. The medication helps a bit.
Your garden sounds nice. A place to sit out in the summer.
Have you asked your GP if there is a cream for the rash? DH’s legs have been very bad with venous eczema. The skin cracks and peels off. We had some betnovate ointment from GP which has helped considerably.
Sweetpeasue have you talked to the Gp about the urinating problem. Big question are you drinking enough water? DH has beeb having fluid tablets which have got rid of a lot of excess fluid. I’m pleased you are seeing the Gp you certainly need to sort out the confusion over your next appointment.
Scaredycat such a shame the parents of such a young child have split up. You coped well with your trip so that’s good. Hope the hotel break gives you a chance to really relax.
DH is feeling better than he has for a long time. The iron transfusions have given him a real boost. We must try and walk some more.
Wyllow I wish I was good at dressmaking or alterations but I’m not. I’m a straight line sewer which is why quilting suits me so well 😊. Perhaps a little sewing project would help give you a boost.
nadateturbe I can understand a relationship, even where two people care for each other, can be. A bit awkward at times.
Do you and your daughter have any common interests?
I think it’s all about a mix of personalities. In some cases we are careful because we fear someone will take something the wrong way. I don’t like arguing with people so am careful how I phrase things.
I love m’y quilting but sometimes it’s hard to get started so I understand about your painting.
Ellie Anne I always got on with my mum but had two close friends who although they cared for their mums had a different sort of relationship. People are all different. Your DD sounds quite strong will with her own opinions. I can understand you letting he r say what she likes just to keep the peace. That’s what some of us are like. I hate arguing with others though some people relish it.

Doodle your poor husband has so many problems. I'm so glad to hear the iron transfusions have helped. I didn't realise he was having those. Maybe you will be able to enjoy some sunny walks this week.
Dd doesn't really have interests apart from reading. Works f/t with young children.
I think EllieAnne and I maybe both have strongly opinionated daughters and like you we just like to keep things pleasant.
Quilting is a lovely hobby. I'm sure you produce some pretty items.
Sweetpeasue how are you today?

HVDY I know that consultant let you down by not phoning last week. It seems awful that you are left to take them for another 6 weeks though. I hope the sun won't affect the rash. I used to like a Boost. I find if Ive not had anything sweet for a while things taste even sweeter. I'm still on low acid diet but its not made any difference.My GP isnt there till Thursday. I wanted to try and stick with same one but Ive not seen her in 2mths. I felt I should only go when there's something definite she can help with but found those times were when she wasn't there. etatur
Nadateturbe I wake up every hr for bathroom then about 5 or 6 pain is too much. This morning pain didn't last as long as yesterday so managed a walk on beach for first time in about 3 weeks. We used to do some lovely long walks too and we climbed Helvellyn on my 40th birthday. Is it long since you climbed the Mourne Mountains? It's a long time since we could do climbing walks.
Scaredycat I'm glad you're back home and can relax a little. I'm the same with socialising and however nice people are it can get tiring, I've found, staying with families. I hope you can look forward to your next hol--won't be long! It should be more of a break. Your post with your 'we are all behind you' touched me as I read it at a v low ebb. Thankyou.
Doodle It was good to read that since the iron transfusions your DH has felt much better. You say you must go out again for a walk. We hadn't had one for a while until today and I felt the same. I mentioned my knees being painful 6 weeks after stopping HRT. Theyve got worse, especially left one that was bad 5 yrs ago(meniscus prob) Could hardly put weight on it a couple of dys ago but managed a little walk today. Need to tellGP but worried about sounding a moaning Minnie with everything else. The passing urine prob is part of the IC, I think. Bladder feels full, painful andswollen but hardly pass anything. Told Urologist. Did you finish that T-Shirt hem? You'll be ambidextrous before that splint comes off.
EllieAnne WyllowWhiff**Candy**Nanny Hope you are all ok and wondering how you are.

After the walk which was really a forced effort but rewarding, we came back home and I made up fresh bed and pain started. My spirits did a huge nose dive and laid up drugged again. I wish I could be normal again.
Bladder just felt full of poison and pressure. Its all much better now though keep needing bathroom. Thankyou for all being here.

Nadateturbe I don't even like Boost bars - but DH buys things like chocolate and crisps, and if they're there, I'll eat them . Hope your day has been good.

EllieAnne Do you get on any better with your daughter when you're able to chat face to face?

ScaredyCat It's a shame the parents aren't together, but so long as they're both involved with the child, I suppose that's the main thing. My Son2's baby is due in less than 4 weeks, and it saddens me that he and his GF are living separately, but they seem to think they'll make it work. we'll see. A holiday in a hotel will be relaxing - everything done for you, and meals laid on.

Doodle The tremors your husband has sound bad. I hope mine will go when I get off these steroids. Feeling shaky and unstable is affecting my confidence, massively. I expect your DH is the same. I'm glad the infusions have helped him. The rash isn't raised, it's caused by Vasculitis (inflammation of blood vessels), so no creams would help.

SweetpeaSue I'm going to ring the hospiatl again tomorrow, I think. The rash isn't made any worse by the weather - the burning sensation is internal (legs and feet), although my legs feel cool. Like you, I wish I could be normal again - I wasn't like this even a year ago. How long have you been on the low acid diet now? These things can sometimes take a couple of months or so.

It was sunny and warm here all day. Son1 and girls came here at 1.30, then we all went to a local rubgy club, where they had lots of huge inflatables for the kids, at £9 each for 3 hours. Money well spent. It was very busy. DH and Son had a couple of pints, then later, we went to the pub for dinner. Hope all BDers have a relaxing evening x

EllieAnne So sorry I think I missed your post about you DDs phone call. I think you are trying really hard to connect with your DD and it does sound that you are doing everything you can to bridge thebarrier you feel is there. I'm not sure there's more you can do. You have braved a long car journey there and supported her in lots of ways so you are a good and supportive mum. I agree with Doodle in that we all have different personalities and some are easier to 'blend' and understand than others.

HVDY I hope you do ring tomorrow. It's awful that we have to keep on struggling to be heard. I'm going to ring secretary of Dr Ive apparently been put under for Pain. Management. I really dont think it's right you should have to continue with treatment that isn't working and has so many side effects. It must feel horrible. On IC Assosiation website the Elimination Diet says 2 weeks then start eliminating certain foods. Think its been 12 dys, though I'm afraid Ive found it hard and cheated twice with a glass or two of wine. When you feel so low it's difficult. I'm just going to stay with it for a while in vase it will help.

Very mixed day..read you all - back in tomorrow xxx BD's.

nadateturbe my DH has what they refer to as a long and complex medical history but he keeps plodding on. 😊
I do like quilting. Not very good at it but I’ve done a few nice pieces.
Sweetpeasue being unable to pee is uncomfortable and unpleasant. I’m surprised the urologist let it go at that. The lack of care you are getting is astounding. I would mention it to the GP. Sorry your walk ended up with you being in pain again.
Need to use the sewing machine to finish the T shirt hem so might tackle that tomorrow. Hope you have a better night.
HVDY can’t believe your sons baby is due so soon. Is he excited? Sounds like you all had a lovely afternoon.
Hope you get a response from the hospital.

SweetpeaSue Trying to stick to any restrictive diet when you feel ill or in pain is very difficult (my diet hasn't been going well), and I can't blame you for having the odd glass of wine, but stick to it as best as you can, and it might (I hope) make some difference. It's worth a try. I wouldn't mind the side effects of these steroids IF my legs/feet felt a bit better, but they don't .

Doodle They're both excited (he's 39 but has no idea of the enormity of it all). She finished work last Friday. DH and I are taking her out for lunch this coming Friday. We like her a lot. Thanks, I'll see if someone will ring me back this time. It sounds as thought you're getting on very well with the use of one hand. I really admire you.

Off to bed now. "See" you all tomorrow x

Hello everyone. Home for two days to go to art. I slept really well last night (one paracetamol) and upper back pains which I've had since Thursday have eased. A good day.

HVDY
It's all your husbands fault - eating chocolate. 😁
You do have some lovely times with family. You all seem so happy together.
I didn't know the consultant was meant to ring you. I never get half of what's posted, (sorry folks. Not because I don't understand, just brain gets tired.)
Could you perhaps email him, or send a letter, and tell him what's happening with the steroids.. That's what I do.
Sweetpeasue lovely to get a walk on the beach. Especially in such cheerful weather. Yes, amazing what we are thankful for. I don't have anything to compare with climbing Helvellyn. Well done! At least we have lovely memories to look back on.
Many aren't that lucky.
The feeling you want to pee but don't actually need to sounds like a really bad infection, with the little knowledge I have. It must drive you crazy. I do hope you get to speak to someone soon.
I've had a look at the IC diet. The one thing I don't like is no chocolate but I'm sure if I had to I could cope. It looks very restrictive, but I think if you did a meal plan it would help. I see now why you were asking about tea. Shame you didn't like rooibos. You're not left with much choice of beverage. Anyway, I'm rambling now. 😁.
Doodle your husband is a champion plodder!
I hope you managed the sewing machine. I suspect you too are being modest about your quilting.
EllieAnne hope you are enjoying today. I think Doodle has made a good suggestion about the two of you having a little time together.
Wyllow3 thinking of you.x
Scaredycat Whiff and others hello and hope you're having a good or reasonably good day.

Evening BD’s. This morning was a light in the dark - I actually walked for an hour and 10 mins and back is still OK, but even better was a lovely chat and coffee with a friend. After my afternoon sleep I plunged but found some ways out, I’m getting a bit better managing mood sometimes.

Yesterday I can’t remember, except it was too mixed to feel good about, and I hate bank holidays. nadateturbe I had a short WhatsApp chat with DiL and she was really nice - it doesn’t take much to feel well maybe she doesn’t hate me after all -this “feeling real” about relationships is really significant. and you just keep on its the art (and share some more sunny windows…)

HVDY that rash is really bad, isnt it? You sure its not cellulitis? I hope something will work. You have such a lovely family I just wish you could find ways out of current health dilemmas. its hard to stick to a diet when rubbish stuff is going on.

I think we have to try and let ourselves off the hook as regards wine or the odd bar of choc. (with me its vaping, but thats better than smoking as I used to)

Ellie Anne I’m just glad that with her difficulties DD does keep contact. a lot goes on thats not stated - ie it coming across you do care, the rabbiting on fear is understandable but its communication. with her problems its important to have that link with you.

Scaredycat you have done really really well coping with being away. Well done you! I can recall many occasions where it was all so difficult but introspect - thank goodness I made it.

Doodle I have decided that I must do one positive thing each day, and finishing say an alteration can be one of them. Quilting can end up in delightful results. I’ve seen some marvellous stuff just by choice of fabric with a touch of the quirky. You both have so much on. Your husband is a brave man.

Its so hard for you Sweetpeasue, you have a mix of predicable bad nights and unpredictable pain. I just isa you can get to the point of knowing what’s happening and why and the right meds or procedures so you “know where you are” and can proceed from there, but its all so complex for you.

I’m struck by so many of us having to had to face rapid decline from what we were used to. Not a slow ageing. sudden changes and not well equipped mentally because of the MH side of things to cope with too.

Bests for absent BD’s.

HVDY so pleased you get on with your sons partner. How lovely if you to take her out for lunch. Bet you can’t wait to meet your new grandchild. Are the girls excited with a new cousin?
Hope you get a reply from the hospital.
nadateturbe glad you are feeling a bit better. What art are you doing this time? I’m meeting my friend tomorrow and we’re going to do something with watercolour pens. (As long as she takes the lids off for me I should be ok 🤣)
Wyllow good you had a nice walk and coffee and chat with a friend. It does you good to get out. I’m sure you get on fine with your DIL and it’s only when you are feeling low you imagine the worst.
You are quite right about the rapid decline. I can trace it with DH, first lockdown and not going outside the door for 4 months, then falling down the stairs and breaking his ribs. He’s not been the same since. I’ve deteriorated firstly through lockdown and putting in a lot of weight. My knees have never been strong but now creak and groan all the time. Short walks are all I can manage. I wonder if it comes to everyone like that

Wyllow3 Good to hear from you. That was a great morning. And the chat with DiL probably lifted your mood. It doesn't take much to make us feel better. I wish relationships were easier.
I agree about letting ourselves 'off the hook'. I've just had a small glass of red and a kit kat after dinner. I eat healthy, boring meals most of the time, but you've got to indulge yourself sometimes.
Good idea about doing something positive each day. Even a small thing. I also try to find things to be thankful for each night.

Hello all. I wanted to pop on and say hello. I am so sad 😞 I've gone back to work ( they gave me 2 days leave , the rest I had to use my holiday for) but I just don't want to be there. I like and need the company but not the stress. I'm barely sleeping, living on junk food and takeaways ( and generally too much food) and I just cant rectify these things. I just want to sit in my pjs all day. As I have pets this is not possible as I have no one to help me. I just want everyone to stop asking me how I am because all I want to do is shout at them. My arthritis pain is off the scale. I just want to fall asleep next to my DH