Black Dog 16

Doodle - 4 more weeks - that is an awful to to cope with - a long time before it's all put together.

Just missed you Ellie Anne glad you have that precious time tomorrow.

Are you having the Extra covid jabs because of your condition, Scaredycat?

No need for "sorry" Sweetpeasue. I'm sure they will understand the need for you to have a chat of its a ?? procedure where you actually have to choose.

I think I need to have that conversation with DS and DiL about going to live close by before I can move on in my thoughts, having found out so many practicalities. Wasn't possible this weekend, but probably some chickening out involved too. Has to have a "light touch" no full on stuff they don't respond well to that. ( if I put myself in their place frankly with my own mum - I could not have been positive, my sis was able to take that role) but it was DiL who suggested it last year in the first place. but it may have been a casual idea and I was Weller then and bouncy.

EllieAnne Been wondering how you have got on since you came back. Your back sounds problematic, sorry about that. You did well to look after DGS with that bad back. Will be nice for you to have house to yourself tomorrow for a while. Wish you could get that a liitle more often.
Wyllow Glad your Quakers helped. Oh dear, that back. You are tormented with so many things. I find that those things that are normally tolerated can be just too much when our mental resources are so low. I suppose with the CFS, physical resources are low too, so you have both.
It would be helpful to talk to consultant(at first I thought but I've no appt and can't). But he has clinicon Wednesday and pre assessment same day so thinking can ask receptionist if I could have a word with him about op. Of course he could be too busy but could try.
Hope you have better night Wyllow.

Hi all.
Nadaturbe- yes it’s hard to take it in that the AF is permanent, the trouble is I feel every little change of beat which makes it hard to ignore. Some people have it and can’t feel it which must be better. It doesn’t help the anxiety but hope I,ll get used to it being there all the time- it is extremely tiring. Nobody knows better than you how wearying things can be, you are very brave.
HVDY- it has been such a wet day hasn’t it. I walked round to my daughters for a cuppa and it was hacking down. DH was playing Golf !!!!
Did you throw lots out- I love having a good clear out but it’s weird how the space left fills up in such a short time. Hope the breakfast was good- a treat for you.
SweetPeaSue- I,m just so glad my sister had the antibiotics - she always worries she is being a nuisance even after being poorly for so long.
I,m glad you had a better night- that’s good considering all the Whatifferies about your proposed op that are whizzing round in your head.
So sorry your Auntie is not so well - it is upsetting to see someone you love distressed. Has she seen the doctor?
Hope you have a good night again.
Doodle- oh my what a disturbing time you had early morning. You did so well to get DH back in bed on your own- no wonder he fell asleep afterwards - you must have been exhausted too.
I think he’s doing the right thing to leave the new pills off for a couple of nights. Will you let the Doc know what happened?
Fingers crossed for an uneventful night tonight.
Wyllow- hope your PJ day recharged your batteries a bit and that today was more settled. Was there a Quaker meeting?

Today after the 6th Covid jab I have felt very tired and my arm and shoulders achy. First time I,ve had side effects but it was a different make from all the others. I just wonder if we are going to have these jabs every 6 months.

Candy,EllieAnne,Sallyyyy,Whiff and all I hope your night is peaceful

Thank you Sweetpeasue. I hope you sleep well too.

Wyllow yes more tests this week. Could be another 4 weeks before we get all the results back. DH seems fine now. I think he realises he scared the life out of me this morning even though he doesn’t remember much about it.
DH is having his barium meal Tuesday.
Wish you could have had the CFS help you needed. You are right the practical stuff would have helped you. Don’t let the thought of moving bring you down further. If it’s too much to take on at the moment then let it be.
Ellie Anne sorry about your back it sounds painful. Glad your little DGS was good. Perhaps he sensed you weren’t well.
Yes get yourself off to bed and try and have some rest. Hope you have some quiet time to yourself tomorrow.
Sweetpeasue is it possible you could have a phone consultation with the consultant before the op if you’ve got concerns?

I meant crossed fingers for peaceful night for you Doodle.
I'm sorry I dont seem to be coming across very well. I'm panicking. So sorry everyone. Youve all got so much to cope with.

Doodle That was one scary night! You were a star. I so hope there isnt a repeat. Just so wish DH had a regime that worked for him. I guess you are still waiting for the results of all the tests to be put together? Have you more tests next week too?

(I'd be very surprised of you could have time for books at the moment...life too full on.
I hope so much that time comes back for you..)

I can understand the agonising about the procedure Sweetpeasue. I think Doodle is right you need to talk it over with the consultant. I wish I understood enough to say more about the particular procedures. (I also understand the feeling of not being up for a caring role!)...glad it was a better night.

One of those days when your body gave you no choice nadateturbe sorry to hear that. I didn't realise that the pain relief dosage could be up to 30mg, Worth remembering.

Hope you've had a good de-clutter HVDY

Quakers was nice and I did a short gym but tweaked my back again and CFS aches. (wondering about low dose Amitrypteline myself, Underneath still feel fairly pointless/depressed/lonely not very communicative. Then particular worries pop out or a memory strong hits me. Sort of resigned to having to work through tests and op for bowels (its going. to be a Barium Meal next) and MRI/lump and would like to talk to the CFS people as a one off hour not "taking me on" as I feel I need advice on managing it physically (they turned me down cos of MH stuff and tho they are right I have to sort that I still missed out on practical advice).. and house stuff/decisions over the next 3 months thats the way it will have to be.

Hello everyone.
Not been a great few days. My back started hurting last week and by Saturday it was so painful. I could stand and walk but couldn’t bend or sit and was committed to watching dgs on Saturday. It was so difficult but he was very good.it’s a bit better today.
Got through church but was very low. I still am. Having a large whiskey and a cocodamol then going to bed.
Tomorrow I will have the house to myself for a few hours. It sounds ridiculous but means a lot to me. Sleep well everyone.

Doodle What a shock you had this morning. It does sound as if it's the new painkiller as nothink like it had happened before. Goodness knows what you thought. I 'm glad he seems ok now. Thats the only thing with all these meds - they dont suit everyone do they. Perhaps they interacted with another of his tablets. It's disappointing as they might have been a help.
Looking forward to your pic of Llama. Wont get chance to see consultant before the mentioned op.
Think this will always be a problem now in that I will want to know every detail of amy procedure. Have had a much better day though. Crossed fingers for a peaceful night.

Scaredycat I’m a big softie really. I loved stuffed toys. It was great when my DGC were young because I could indulge myself buying things for them now I have to hold back from buying them for myself.
Hugs are good. We all need hugs sometimes.
HVDY it must be difficult for your DGD if she has trouble at school and at home. Children often have a problem relating to their parents. Maybe her relationship with her mum will get better as she gets older. Does she get on well with her dad?
Does your DH do a good breakfast, My dear dad used to do a mean fry up. Makes my mouth water just thinking about it. 😊
Wyllow sometimes we just need to try and unwind and let ourselves relax a bit. I hope your Pj day helped.
I hope you had a good book to read, I don’t do it often now but I used to love having a day where I could just read a book without feeling guilty.
We had an interesting (frightening) night. DH was fine when we went to bed and also early morning. About 7 am he slid off the bed and couldn’t get up again. I was thinking stroke, the worst thoughts. I wanted to call an ambulance but he wouldn’t hear of it. His temperature was high but he was aware what was going on but just couldn’t get his legs to work. It took us a couple of hours to get him back in bed where he promptly fell asleep for about 3 hours. He was fine when he woke up.
We have been checking through his meds and last night was the first night on new painkilling meds plus double dose of BP meds. Reading side effects of them both they point to muscle weakness, dizziness, fatigue, loss of balance and coordination and confusion. DH has decided to go back to his normal meds tonight and cut out the new stuff for a couple of days. I don’t want to go through that again.
nadateturbe DHs Bp was quite low too. I think when it’s like that you lack energy so not surprising you haven’t done much.
Take these days as they come. When you have health problems it often leads to people thinking they’ll never get better but it’s just a set back. Take things easy and see how you get on.
Sweetpeasue yes I’ve come up with a really scintillating name for the llama…….llamy….🤣. She really is sweet. I’ll post a picture tomorrow. I’m just sitting with my after dinner coffee and chocolate now and I don’t feel like moving.
Possibly it’s a good idea not to take the oromorph regularly. By having some time without it’s probably more effective when you do take it. Glad you had a good night. Fingers crossed.
You have several real and understandable concerns about the op. Could you discuss those with the consultant before hand.
Sorry your aunt has problems. Hope she’s ok.
I’m hoping for a peaceful night for us all tonight. Ellie Anne Candy sallyyyy hope you are all ok.

Scaredycat I hope your sister is starting to feel better after the antibiotics. Also that your day has been less wobbly. Sounds like your FT talks with sister spur you both on. Thats lovely.
Doodle I hope you got the restful night you both need and the new painkillers are working well for your DH. Glad your Llama is making you smile. Have you named him/her. (Predictive text came upwith 'maimed' there!) The oramorph is usually helpful but I dont take it daily as not good for bowels, so not 'used to it' as such. Seemed to have a couple of weeks when much better then get hit with pain in bladder or bowel again. Had good night last night and today been ok too.
HVDY I'm sorry about your son too. I hope you had that nice talk together. Its great that they can talk to you like that. Sure you will miss your son when he moves out but your own room and free from snoring will make up for it!
Nadateturbe Hope your day has been ok after your set-back yesterday. I've found some Drs can start some tablet dosage quite higher than I expected in the beginning of a new med. Urologist wanted me to start on 30mg Amitryptiline and could increase afterwards. I started with 20 but have adjusted it at times and taken 10mg most nights.
Wyllow I really hope today has been better for you and you've had a better night too. Not sure if you had a Zoom Quaker meeting today or given it a miss.

Although Dr gave a prescription for antibiotics (in case I had UTI) I held off as my urine was clear and no stinging when passing, so I realised it is IC. My appointment Hydrodistention op in just over 3 weeks and pre- assessment on Tuesday. Must cancel soon if not going through it so someone can take place. Worrying about it constantly. Actual Distention no help last time. Just wanted him to look in bladder and couldnt bear that without GA. He didn't think he'd see anything - - but bladder pain seems much worse than 3 yrs ago. Lots of 'ifs'.
If nerves are causing it, would bladder being distended set pain off even worse?
I'm just so scared now too about 'complications' happening with even simple procedures. Dont want urethra being damaged. Lot of pain afterwards too.
If I opt out this time - I could always have it another time.
If I cancel, I will write to Urologist to explain why and say I'd like to discuss my pain in a further appt and see how I am then.

Saw Aunt today, she's not in good way. Showed me stuff. Personal. But frightened me. I'd make a terrible nurse. Hope she's going to be ok.

Candy EllieAnne *Whiff Hope yourd all ok and your weekend not been too challenging. Peaceful night all.

Wyllow Sometimes, staying in bed and having a restful day is for the best. I hope today will be better for you.
nadateturbe Take care, hope your day is better today, too.

It's a wet morning, so I'll probably do some tidying/throwing out of "stuff" in the house. Just waiting for DH to cook us some breakfast . Hope all BDers manage to have a relaxing day x

Scaredycat it must make you so anxious living with permanent AF. It must be awful knowing its always there.
Taking one day at a time and making the most of it is the best way to think. As Doodle says good advice for all.
I hope your pains have eased Sweetpeasue, and tonight is better. 20mg of amitriptyline is not too much. My neurologist said I could increase to 30mg if needed.
Doodle fingers crossed for your husbands new painkillers tonight. They could make such a difference for you both. Glad you had a nice time with your friend today. Your llama does sound cute. Thank you for your group hug.
Passing it to Wyllow,EllieAnne,Candy,Whiff, HVDY and all other BDers.
Wyllow3 all those memories and thoughts about your ex is bound to drain your energy and exacerbate your CFS. There are days when you just have to give in and do nothing, and let your body and brain recover a little. Maybe moving near family will help you not to think about it so much. I don't know, just a thought.
Unfortunately I have done very little today, short bath, puzzles, TV. Meals on tray from OH. Disappointing and unexpected. BP quite low too.
But hey ho. Just a little setback.

Hoping and praying for a good night for all.

I’d decided to have a PJ day and have just read and my head has just sort of had enough and let me off the hook today by going fluffy. In bed all day and my brain has packed up. Overload of last days. Know grieving Ex stuff lurks, the more so planning to move in a way: but just dont want to feel too much its not safe. Haven't washed today ...there are advantages to living alone.

Caught up on all your posts and xx

Very sad to read about the levels of pain there sweetpeasue and xx for it easing very soon and yes try 20mg, it’s high but not “off the scale”. Horrible when oramorph doesn’t work well enough

So much on for you Doodle that tonight sees the new tablets kicking in and thank goodness a bit of you time today. Nice Llama.

nadateturbe . “I am not having to spend large amounts of time in bed.” That is so good to hear, but I’m sad that last night you didn’t sleep so well.

HVDY that weight loss is impressive. I bet son’s house is really spiffing and glad btw DH is getting out and “doing”. Hooray to get bedroom back.

What you said about one day at a time Scaredycat oh so true and oh sometimes so hard getting used to an unwanted reality like your AF.

I think for those of us struggling with MH stuff “living fully” is quite a challenge as there lie triggers…. that others don’t so much sail through….. but have learnt long ago to deal with.

Best night possible BD’s.

nadateturbe I hope you have a better night's sleep tonight.
ScaredyCat, Thanks, he'll be ok, I keep inviting him round but I know he's with his GF tonight and tomorrow, so he won't be lonely. I'll go an see him one evening in the week. Hope your sister soon feels better. What did you have with the coffee?
Doodle Thank you. Son1 will be ok, he gets like this now and then (we all know how that feels, don't we?). His daughter is almost 12, so will be at that school for a while. She has a turbulent relationship with her mum (who is quite volatile), so that can't be helping. Son2 loves buying things - he's just spent £50 on one pillow . I hope the painkillers work well for your husband. A group hug sounds great, you're so kind and need a hug back x
Wyllow, EllieAnne, Candy, SweetpeaSue, Whiff, all other BDers - hope you're all ok.

Doodle Thankyou, you're a star. Like Scaredycat much needed hug and returned to all BDs. So much appreciated now by all here. Love to all. x

Doodle- thank you for the hug I really needed it - hug right back at you and everyone.
Your llama sounds cute- no more sore toes.🦙🦙🦙

HVDY I’m sorry for your son. Depression takes the joy out of life. School can be such a worry for so many children. Is your DGD due to change schools anytime soon?
I bet you can’t wait to have your other bedroom back and to get some sleep.
47 shirts 😱. Does he only wear them once 🤣. I’m glad I don’t have to wash and iron them.
Wow your diet is really going well. That’s amazing.
Wyllow you aren’t having a good time are you. Sorry you are feeling so down. Hope today has been a better day for you.
Sweetpeasue I am looking forward to a rest from hospital for the weekend. Had a nice day today. Went shopping with a friend this morning and then DS2 popped in for a visit this afternoon. I am really hoping we might have a peaceful night. DH has got some new painkillers and I hope they work tonight and give the poor man a break from the pain and irritation.
There’s me hoping for a good night and you had such a bad one last night. Do you think your body is getting used to the Oramoroph? Could you try a different pain killer?
nadaterurbe it’s good you find the amitriptylene helps you sleep and you feel less stressed. Having a clearer head is a good thing. DH often says he feels discombobulated when he wakes up. There are so many on this thread who have problems sleeping. It’s hard to have the energy for life when you are tired most of the day.
Scaredycat yes very pleased about the colonoscopy result. I did wonder. Such a shame your sister now has a chest infection. I wonder if she picked that up in hospital. Hope she’s on the mend soon.
Did you have any cake with your coffee. I like their lemon drizzle.
Taking one day at a time is good advice for us all. It’s easy to get overwhelmed by things.
I am instigating a group hug for all in BD. So many not in a good place at the moment so I’m extending a big all enveloping hug for all of you.
P.S I’ve bought a llama………not a real one but a doorstop fluffy one. I got fed up of stubbing my toe on the old one which was metal. My little llama is very cute and cuddly. He has such a sweet expression that it makes me smile when I see him.

SweetPeaSue- yesterday must have been so difficult for you with all that pain, confusing too with with all the different results from your tests. Then a terrible night- no wonder you feel so full of fear and worry. Do hope today the pain eases off and you are able to relax a bit.
Doodle- so pleased the colonoscopy went well- you must have been so relieved.
Hope today you are both able to rest and enjoy being at home in the sunshine..
FT my sister today. She was a bit down as she has had a chest infection - antibiotics doing their job though thank goodness.
I went for Covid jab this morning- so far so good. Coffee at M and S afterwards. Is there no end to this excitement!!!
HVDY- what a lot of weight you have lost- well done cos it’s not an easy thing to do. I expect it encourages you to see such a good result.
I,m sorry your son is feeling a bit low- he must be concerned for his daughter but I expect he has to be careful how he handles the situation.
I expect your sons house is starting to look like home- he must be so looking forward to moving in. You must be too as you,ll get some quality sleep again.!!!
Candy- hope you enjoyed your meal out at your friends- you,ve had a lot to deal with lately so it must have been good to do something more relaxing.
Wyllow- hope today has been better than yesterday- look after yourself- it will pass.
Nadaturbe- take it easy today- wishing you a better night tonight.
Yesterday was a bit wobbly as the reality of the permanent AF felt a bit overwhelming but talking with my Sister who has overcome so much I decided to live one day at a time and try not to be scared to live - if that makes sense.
Love to allxxx

And thank you Sweetpeasue.
HVDY I bet you're really looking forward to having that bedroom back!🙂
Your son certainly likes his clothes!

My pains are not that bad btw. Sleep dysfunction is part of CFS/M.E. It's mostly for that that I take amitriptyline. It's a vicious circle. Today is a write-off.

Nadateturbe Now that our son is moving out, the back bedroom will be free, so my husband can go in there . I'm sorry you're having a lot of pain. These things always seem very much worse at night, don't they?

SweetpeaSue It's no wonder you feel so low, having all that pain and worry. It must be exhausting. I hope the pain will subside today.

Went to son's, cleaned some windows (inside), whilst son and DH fixed some chairs together, plumbed in the washer and put up some curtains. I made up the bed. How one man can have so many clothes, I don't know - 47 shirts! 11 coats! Countless other stuff. x

Nadateturbe Oh so sorry you didnt sleep well last night. Pain has such a bad affect on our MH doesnt it?
Thankyou.Take care.

Sweetpeasue Amitriptyline helps, although not always, didn't sleep well last night.
You must be in extreme pain to have to take so much.
It's terrible to feel that you're "bothering" the GP. But don't let it stop you if you need to.

Wyllow I hope today is much better for you and last night wasnt too bad. Yesterday sounded horrible for you. Keep yourself well today and, I agree with Nadateturbe, try not to worry about house state.. Sending a hug.
Nadateturbe Glad you're managing better by pacing yourself. I find Amitryptiline helps but too bad last night. I'm prescribed 1 to 3 a night so think might have to start upping dosage to 20mg.Hope your day is well. Beautiful username Btw. HVDY 🎉,That's amazing! You deserve to feel happy amd proud of that amount of weight loss. You must have got into right frame of mind and tapped into that 'can do' thinking. I'm so pleased for you.
Urine strips are the same 'dipsticks' nurses and Drs use but no dipstck test is that reliable really. Got them after last infection to try and help to identify a UTI from my bladder pain as there isnt a lot of difference in the pain at times. Hate to call GP if not infection.

Terrible night with such bad pain. Oramorph didnt seem to touch it. Still quite painful so not sure how the day will go. Spirits rock bottom and feel v despairing I'm afraid.
Foggy and wet here. DH is going to try and fix something on car as theres a problem.

Hope everyone manages a reasonable day.

Gosh, such fast weight loss, Well done HVDY. Hope the nosebleed stopped quickly. Re snoring, can you not sleep in another room sometimes?
I too hope today is better Wyllow3 and you feel more positive.