Black Dog 20

Didn’t have a good night last night. Both of us were a bit down. Hopefully tonight will be better.
Good news is, hopefully the cough seems a bit better
Sweetpeasue so pleased to hear you’ve got a cancellation appointment next week. That’s brilliant news. I think I understand what you mean about the pain and the connection tissues not turning off. That makes sense. Hope they can help you resolve this.
Yes, you’ve hit the nail in the head. Like you, we want our lives back.
nadateturbe how lovely you got to see your son. realise it took a lot out of you but oh so worth it.
Oh yes, please show us your painting.
*Candy *having confidence in your consultant is key I think.
Difficult decision about work. I couldn’t decide whether to stop or not either. I understand about keeping your mind occupied but being over tired doesn’t help either. Are you off in your caravan this weekend.
HVDY we haven’t actually started the antibiotics yet. Surprisingly we both seems a bit better today. What are you up to this weekend. Any meals out or visits from the DGC?
Scaredycat I think being reasonably fit helps with most things. DH and I have gone downhill considerably from our walking days. It’s good you do the housework together. Spreads the load a bit.
It’s good what you’ve written about accepting life now.
Ellie Anne sorry church is making you anxious. Don’t forget God knows it all anyway and loves us despite of who and what we are or have done.
As Scaredycat says you show great consideration for your DH so try and find yourself some peace.

EllieAnne- there is no reason for you to feel guilty about anything. You are a good Mum and a sensitive kind soul. You also show a lot of consideration for your Husband who is obviously not the easiest person to live with. Church should be a healing place - just try and feel the peace there. Take care.

Thank you scaredy-cat but I am dreading church. The sermon tomorrow is about marriage and I’m sure there will be something in it to upset me or make me feel guilty.

Hello!
HVDY- do you think the kidney pain is worse when lying down because they are each side of the spine I believe.
Like the sound of your Day centre meal- love Chicken Kiev. I can understand you not feeling “ready” for the friendship group yet- I can’t imagine being the youngest person anywhere😄 My DD is only 3 yrs younger than you.
Yes AF wears me out but I am grateful I can do as much as I do- I think being fairly fit before I got it has helped.
Doodle- I,m glad the consultant seems to be in tune with you both. Feeling understood really helps doesn’t it. It was worth phoning the GP wasn’t it. Hope the antibiotics help you both. Continuous coughing is exhausting.
We do the housework together on one day and DH does all the heavy stuff. I can do about an hour and a half then have to stop and rest and restart later on. Then just bits and bobs throughout the week- DH does a bit of cooking too and quite enjoys it. Life is too short to worry too much about a bit of dust.
I hope you have had a pleasant Sunday.
SweetPeaSue- great news you have the PM appt next week.
Don’t try and take in too much all at once- it is overwhelming you. Maybe ration yourself and then do something you enjoy to give your head a rest. I do know that too much introspection about my AF made me very anxious- the ADs have helped in that respect. I think it’s about accepting life as it is now and not yearning for how it was.
I hope today has been a better one for you.
Nadateturbe- what a surprise to see your Son - he must have been so excited to see you and his family although I understand that it’s hard for you to cope with surprises .
Yes it’s wonderful to see them - the sadness we feel when they leave is the price we pay for loving them isn’t it. Nice that you enjoyed some time together in Belfast.
I can’t imagine how tired you must feel - I,m tired too it was a very emotional,busy but happy week.
Candy- like you I used to struggle terribly when DS went home but like you ADs have helped a lot.
Could you do less hours with your job? If you could manage without working then maybe do some volunteering so you could meet people but without the worry of work. Something totally different from what you do now.
You have a lot on your plate and need time for yourself too.
I,m sure you,ll make the right decision if or when you have to.
EllieAnne- hope you have had some company this weekend and an enjoyable morning at Church.
Wyllow- sending a Sunday Hug.
Love to all old and new xx

Doodle I'm glad you and your husband have now got antibiotics, and I hope the cough goes for both of you. Are you taking Paracetamol or anything for your aches? Hope you both start to feel better very soon. It's good that the consultant seems to be on your wavelength. That always helps. The man from the day centre is 74, so a bit older than me, and probably fits in a bit better than I do. Whether he'll go again, I don't know.

SweetpeaSue Great news that the PM has been forward so much! I think you might be getting somewhere now, with a team who will be able to help you. Don't feel you've got to read/look at all the info straightaway, take your time with it perhaps over this weekend and beginning of next week.

nadateturbe Lovely surprise, seeing your son like that. It must have taken some effort on your part, but it sounds as though it was worth it. I hope you're feeling less tired now. What is your painting of? I've been doing one of lots of balloons, in a huge bunch, but I don't like it much. I'd love to see yours, when it's done.

Candy6 I'm feeling much better, thanks. I had to stop working at 62 because of having a stroke, and the lack of routine/things to do was a problem for some time, but I think because you're so active, you'd be ok. It's a question of finding things to do each day (something I'm still working on)

EllieAnne I know you find weekends difficult. Hope you manage to get out and chat with others.

Wyllow, Whiff, Allsorts and ALL BDers - hope you have a decent day x

Night night all BD's xx

Evening all,
Many apologies for not posting for ages, I’ve been thinking of you all though and have caught up slowly and finally finished reading tonight. I’ve been so tired as usual.
HVDY I hope you are finally feeling better after your kidney infection. It seems like it’s been a long haul for you. These things can take it out of you so much and it can take a long time to get over. I’m glad you’ve finally managed to get out. Hope little Chubby chops is ok too, teething, poor little thing. Like some one once said about teeth - so much trouble getting them and so much trouble when you get them too! Bless her.
Sweetpeasue I’m sorry too that you’ve been in so much pain. I’m glad your PM appointment has been brought forward and it sounds like your psychologist is good too so hopefully you will finally get somewhere in all this. I agree with what you said about PALS and the medics sticking together when things go wrong - they certainly do. All you can do is try to move on and focus on the now, get the best treatment possible and try and move on. I sincerely hope things get better for you soon. Hope DH is ok too.
Doodle I’m glad DH’s consultant was more positive. It makes such a difference. Good consultants can do that and they’re worth their weight in gold. I hope both your coughs are better.
Nadaterturbe so nice of your son to give you a surprise visit but I understand the difficulties you faced with that. The thought was there at least. I hope you’ve caught up on your rest now. I really admire you for coping with ME. The tiredness I feel is bad enough but having to cope all the time must be so difficult.
Scaredycat I’m glad you got to see your son at last. I do empathise with you. I love mine coming but it is hard when they go and you don’t see yours s much as I do. It used to be a major issue for me but since I’ve been on the AD’s, I cope much better. I’m glad you had a nice time and made lots of happy memories.
Ellie Anne I hope the fall out with DH has blown over and you have managed to talk it over with someone. I hope you manage to have a decent weekend.

As I said, I’ve been so tired agin. I’m seriously thinking of giving up work. Well I’m mulling it over anyway. I could probably manage financially but it’s the mental side of things that worried me too. I don’t cope well with not being busy and lacking routine. I’m well aware that if I give this job up I’ll find it difficult to find another one due to my age (nearly 63) so I need to make the right decision. I won’t rush into anything.
Wishing you all a restful night. Special love to Wyllow. I’ll try not to leave it too long before I post again although I will read and think of you all xx

Nadateturbe I really do appreciate your post tonight. I think I'm just so tired of everything that's happened and goes on for such a length of time without answers. I know you understand about pain without answers.
Hope you sleep tonight and thankyou.x

Sweetpeasue I didn't get the sense that you had written gobbledegook. But I feel so sorry for you with all this pain, and your husband to worry about too.
I do know from having M.E. that the brain can be involved in chronic pain. Does not in any way lessen the importance of it, or that there isn'ta cause.. So it's worth investigating with the PM clinic. And if its not helpful they will have to keep investigating other ways to treat it. But you must find it hard to focus on all this and what you are being told when you are in pain and taking medication. Perhaps have a good rest and ignore the videos until you feel more able.xx

Sorry for not making any sense at all Doodle. Just re-read that and all sounds like gobbledygook. I meant well. Think overtired and should have just kept things short. X

Good evening everyone. I've read all your posts, but brain still not recovered from all the social contact.
Son1 came for the birthday. Rang me from hotel the night before the party. "Surprise mum I'm here!". All well and good but not giving notice doesn't really work with M.E. Of course he was too busy socialising with cousins he hadn't seen for years to make time for mum! But he was enjoying himself, I didn't mind. I had to struggle next morning after the party to meet up in Belfast before he flew home. We had a lovely coffee, and stroll around town. But I am shattered.
Not quite as long as your visit Scaredycat. But isn't it lovely to see them? I hope you've recovered. I cried when he had gone.
I must send a photo of my latest painting effort. Not quite finished. I'll go back to it after a break. I'm such a slow worker.
Sweetpeasue have read your updates, sorry you're still suffering but good about appointments, talk more tomorrow. Far too long foryour husband to wait. Private scan might be affordable. I had one done with Alliance on NHS, but I got their price list and was very surprised.
Doodle hope the antibiotics help you both quickly, you're having such an awful journey at the minute. You're coping so well. But you must be utterly fed up.
HVDY strange having pain in bed. But hope it continues to ease, keep drinking.
Sons present sounds great idea.
I didn't go back to a book group because they were all younger than me. 😁 We like to fit in.
I'll talk more tomorrow .
Hello to EllieAnne hope things are OK at home. Whiff Candy Wyllow3 Allsorts and anyone else reading. Hope your day has been all right.

Doodle We crossed posts again.
Thank goodness you've both got antibiotics to help. You need something , as it's lasted too long -you will be worn out. It is a relief when an appt goes well and I'm glad you had that with your consultant. I felt the same with this physio. He's not for exercises but was trying to explain concept of Chronic pain where the pain is not through tissue damage but caused by the brain connection, not switching off, or something.
Thing is if I've IC there's a reason for the pain. Told him about me getting Urologist again. He thinks appt with himself and psychologist might help to form some pain management plan. I'm beginning to feel over analysed , if you see what I mean. I just want the pain to stop. Sorry PM was pain management.
I'm sure you must both be weary of it all. All the appts and so much emphasis in your lives on med decisions . You just want your life back as it was. I understand.
Take care of yourselves . You have each other , as we do, and you understand as no one else can what it feels like. The bond can be stronger for that I think. 💐

Doodle I too hope last night was better for you both and DH's RLS not as bad.
Hope the cough is not still lingering.
Scaredycat What a tough month with all these birthdays right after Christmas. I would be flummoxed what to give. I find it difficult knowing what to give at Christmas and birthdays. Nice for the family get together though. I think knowing how to handle your AF must be the key to managing the condition. Sounds as if you understand how it works and have learnt coping strategies though it must get you down at times. My DH has strong will so I will need to be gentle in persuasion --then get out the thumbscrews 😂.
HVDY Dinner at the day centre sounded lovely. Yes I can understand the friendship group might not be your cup of tea if you felt out of place.
Wonder why your pain is worse in bed. Hope it goes for you soon.

Sorry but I'm so tired tonight.Bad night with pain and feeling desperate. Brilliant news is I was rang this morning and offered the PM appt next week!! It was nice physio we saw yesterday. Said there was a cancellation and I must have a guardian angel. (I think he must have pulled strings.
I've overdone the PM videos he sent and been pouring over mines of info until I'm exhausted. Feel the onus is on me to stop my pain by all these techniques, diet, stress reduction. My pain gets too severe and don't think that will be enough. Just had a good /bad cry and taken some diazapam. Just want everything in my brain to stop.
Be better after sleep.

Sorry not addressed everyone. Hope you are all well as can be and have a restful night.x

Sweetpeasue sorry I’m finding it difficult to concentrate recently so get easily confused. Is PM pain management? Do they have a physio who works with them? Not heard of that before. You seem to have been pleased with how things went until you found you had to wait till May to see them again.
I do think a lot is to do with the NHS struggling to cope. The surgeon we spoke to yesterday said he wanted to put us on his list and give us a date but couldn’t because that wasn’t how the system worked now. They have to allocate their time differently.
I know May seems a long way off but it will pass. I do hope they can help you. It would be good to have your DH involved too.
How have you both been today?
Scaredycat we were more relaxed last night after seeing the Consultant. Both feel that he was in the same wavelength as us which helps.
Don’t know how you cope with the tiredness. This cough has worn me out. My arms and legs ache and I feel so exhausted all the time. Phoned the surgery today and spoke to the GP. I wasn’t expecting much. Thought they would say they couldn’t help if we didn’t go there but actually she was very nice and has given us both 2 weeks of antibiotics to hopefully knock this cough on the head. Hope it works and it’s so tiring.
Pacing yourself with your AF sounds the way to go. Do you manage housework by spreading tasks over the course of the week?
HVdY glad the kidney pain has eased. Nice meal at the day centre. That friendship group sounds nice for people to get together. How did the man you went with fit in.? I can see you may well be a bit younger than the average ones going.
You sprightly Young thing 🤣. I’d be one of the older ones. 😊

SweetpeaSue Glad the PM appointment went well and that the Physio there seemed to understand your concerns. May is a long way off, but you might get a cancellation (I hope), and it sounds as though you'd benefit from having a team of people involved. I think so many people are having to wait for appointments now - first Covid then all the doctors' strikes, which have made the backlog even worse. I think your husband needs to be seen sooner than in 3-4 weeks if he's having bad headaches a lot.

ScaredyCat I had chicken kiev, new potatoes, mixed veg, yesterday at the day centre. The kidney pain has eased off a bit today - it's bad when I lie down in bed - but it'll be ok, thanks. I hope you've had a relaxing day. Your AF must make you weary. Chubby Chops is cutting 2 teeth on the top but seems ok. DIL sends me photos most days .

How has everyone else been today? I went (with a man from the day centre) to a "friendship group" at the library today. The people (about 15) were friendly, etc., and we had cake & coffee, but I was the youngest there (a few have got sons/daughters my age - 64). Nice, but not for me - yet. x

Hi all
Nadateturbe- hope your Sister enjoyed her birthday party and you,ve recovered a bit from the occasion. We have a lot of family Birthdays this month - lots of cards and pressies to buy.
EllieAnne- hope you,ve not had any more upsetting fall outs- maybe this weekend you can get out somewhere to clear your head .
HVDY- glad you got to the day centre- it must have felt so good to be out again. Did you feel like eating your dinner there?Sorry the pain is still hanging on - will you get in touch with
Doc if it’s not gone soon?
How is Chubby chops doing with her teething?
Yes I do FaceTime with my Son - it has made an enormous difference being able to see him regularly.
Doodle- so glad the consultation went well yesterday and you felt more hopeful after it. Now as you say you can help DH try and regain some strength and also get yourself feeling better.
Honey and lemon is really soothing - should help.
Hope last night was more restful for you both- the better news from the consultant perhaps quieted your minds a little.
SweetPeaSue- 4 weeks is too long a wait for your DH- walk in centre sounds a good idea.
Please don’t lose hope - the proposed appointment is a long time away but sounds like it would be quite comprehensive.
Persistant AF makes me very tired and less able to do so much but just have to remember to pace myself. I,m sure you must feel tired a lot of the time too when your pain gets bad.
Wyllow-Good to “ see” you last nightx

Love to all those mentioned and those not. Hope today has been as good as possible.

*Thankyou Wyllow. You too. X

Loving night thoughts xx

I'm losing hope about PM. I'm tired of it all.

TBH--now I think about it-- May is disappointing and quite ridiculous. First referred to PM a Yr and 2mths ago.

HVDY Glad you got to the day centre . It can take your mind off things having a natter with others and just the change in surroundings helps after staying in for a while. Hope your kidney pain goes completely though. DH had headache again this afternoon. Sharp stabbing in temple then thick foggy for hrs. Hope your own DH is going on OK.
Doodle Sorry to hear you've had a bad night. Good the cough is a little better though hope it goes away. Difficult treating a cough but your cough remedies sound impressive. I like the hot lemon drinks and Manuka honey is good. GP told DH to go back in 3 to 4 weeks if no better then he would send him for scan. No way is he waiting that long. If no better in a week he's going back and I'll be asking for a scan immediately. There's walk in centre for emergencies 15 mins drive away and if bad on weekend will try and get him to go there. Hope for a better night for you both.

Pleasantly surprised at PM appt (after terrible delay in parking). Senior physio completely understood concerns about IC under umbrella of Chronic Pelvic Pain and my concern of abandoning a cure for PM. Even took on board my worry pain could be Nerve Damage. I made clear Iwas open to learning about brain involvement with pain but also I believed pain was IC and was involving a Urologist again.. He said team had discussed my case and I would at first have appt with pain psychologist and himself tog. incl DH. That would be---- apologies, May!
Had to take painkillers on arrival at hospitals but got there.

Wishing all a peaceful night and hoping your day hasn't been too bad. X
Wyllow Always good to see your post.x

Sorry for all the spelling mistakes. As I say, I’m half asleeP. 💤

Saw consultant today. It went well. He was more positive and reassuring than the previous one. Nothing planned for the next few weeks so hopefully I can make DH stronger and fitter for the next step.
Sweetpeasue I think cough is a little better. Hopefully DH won’t be as bad as me. Glad you went to your reading group.
As you aren’t happy with your DHs conversation with the GP. Could you ask for a GP phone call with him to discuss your concerns.
HvDY hope the antibiotics get to work soon and sort out the problem.
I’m taking Mankuna honey and lemon drinks and Benilyn cough medicine. Hope you fell well enough to go out tomorrow.
nadateturbe well done on getting to your sisters birthday. Hope she had a wonderfully time.
Ellie Anne sorry about the tiff with your DH. Hope it’s resolved a bit now. Shame you didn’t enjoy the video. Hard to get into things when your mind is elsewhere.
Very sleepy now. Can hardly stay awake. Neither of us slept well last night,
Night night Wyllow

SweetpeaSue I feel better today, thanks, although still have a bit of kidney pain. It was good to chat with people at the day centre. Hope your day improved and that you got to the pain clinic. Glad your husband is ok. How's everyone been? x

Nadateturbe Hope you enjoyed your sister's birthday party and you're not too fatigued today. DH will be 70 this Yr.
Where do the yrs go? 🤔
EllieAnne Sorry your meet up with friends didn't help . You made the effort though. Hope the atmosphere isn't really awful at home today and the fall out soon blows over. X
HVDY How are you today? Hope you're a little better. I've not seen that other thread -that poor lady. Do you feel the antibiotics have worked and its the weakness/ fatigue that is main problem now? Hope you manage the day centre -you'll be fed up inside all the time, but don't push yourself too much if you're not up to it.

Still not dressed. Had pain killers and feeling a little better though feels it might start again. Going to rouse myself a bit and see what happens. Have appt at pain clinic in hospital this afternoon. DH OK at present. He shouted during night -dream- but doesn't remember.

Hope everyone has a decent day and love to any who are struggling.