Black Dog 15

yes, nadateturbe

"No easy answer. Nor for sleep. Not sleeping is part of CFS and it makes it worse. Difficult to solve.
...... Sleep has been too poor recently, in spite of using pills."
Its something I realise I'm going have to factor in: I realised this when the change came from not sleeping because of a particular identifiable trigger to these period of "no sleep in a desert" shout any particularly worrying thoughts but just unable to sleep.
Must find out more about it!

not "shout" but "without".

Took some stuff to a charity shop - DH says it's counter-productive as I just buy more things (he might have a point), and because it's raining, we had to have cake and coffee in a cafe . Hospital rang me, they've given me an appointment to see a Neurologist next week. Excellent service. (buy why??). Bought things we didn't need, from Wilko x

That's the problem in entering Wilco HVDY.
We've come to expect delays for appointments and one does think, "oh, no, did the GP flag it up as urgent" for some reason, and I understand the thought, but it ain't necessarily so - I was surprised as got my MRI for The Alien more quickly than thought....but am aware - can be just good fortune.

Wyllow I know, you're probably right. I'm pleased to be getting such very good treatment. Which is best - Wilko or B & M? I love both

Totally fed up today. Usually at my sons on a Wednesday but haven’t gone today. Got a horrible cold and don’t want to pass it on. I forced myself out for a walk but feeling really unwell. Tested for Covid but was negative.being at home is really bad for me.
I did tidy a cupboard and have 2 bags for charity so will take them tomorrow and have a coffee somewhere. I won’t visit anyone till I feel better.

You did well in the circumstances Ellie Anne. Is there a place in your home that you can make to retreat to and "call your own"? I'm guessing there isn't..its just that I can imagine how tough it is, if no.

Any sightings of Sweetpeasue?

Wyllow I'm here, keeping on. MH visit yesterday didnt seem encouraging for me. Although she is going to talk to others, I don't think she thought I fitted the usual MH problems. Noted I wasnt on ADs and still under my counsellor (who's from different MH set up). Told her Id only a couple of appts left with her. I felt terrible after she'd left. Thanks btw for explaining the 'older' MH category. I'm sorry the bad nights are continuing. Hope today has been ok for you. So pleased though that you can continue with the psychologist.
EllieAnne Hope you can get out for the coffee tomorrow. Sorry you're feeling so unwell. Covid is first thing we think of now isnt it? Best wishes for a quick recovery.
HVDY Glad you've not had to wait too long for Neurology appt. It can be better to get something over with than having to wait ages. Your in same mind as EllieAnne with taking stuff to charity shops today. I have books to take too.
Candy It will be good to have some time off from your work though it sounds like you'll still be busy. Im sorry about your FIL. It doesn't matter how old we are, we still want our loved ones to stay well and it's sad seeing them deteriorate. Glad you are getting used to the meds. Take care.
Scaredycat Hope youve been ok today, especially with the AF. Thankyou for your kind thoughts. DH won't go to Drs with latest speech thing but I'm monitoring his BP.
Doodle Your DHs legs do sound so painful. Hope you managed a decent night's rest.
Nadateturbe sorry your nights are bad too. Seems as if we're all having same problem. Nice to hear from you again. I know you have a difficult time with the CFS.

Actually took myself off to book group today. It was hard going as I feel so alone and isolated. I feel closed in a shell. No one knows of my situation as when something is unexplained and longstanding I dont want to encourage questions that cant be answered. Things have changed there and I have changed. I know I'll never be the same again. Sorry to be so depressing. My appt with counsellor not for 2 weeks. Mind seems so tired.

Hope we all have a peaceful night in mind and body. Take care all Ive not mentioned by name. X

Hi Sweetpeasue I hope the MH visitor comes back with something helpful. I wish she'd told you more about the process - she will be discussing the visit with other people in a team.

Did she say how long it was before she'd get back to you?

I can understand the feeling own after you've revealed all the horribleness but no "result".

You might be right in your assumptions - or your assumptions might be depressive ones, ie worst outcome fears. xx

Ellie Anne so sorry you have a cold. That’s rotten. Can you just make some soup and go to bed for a bit. I’d check another Covid test as well as I know a few people who have had Covid recently. Hope you feel better soon.
Wyllow you are right, haven’t heard DH saying he’s ok for a while. I think he feels a bit like you. Can’t believe how much he was able to do a short time ago but struggles with now.
Do you take anything to make you sleep? I used to listen to someone with a monotone voice reading something. 🤣
HVdY yes I have my antihistamines. It’s mainly my eyes that cause me problems. Pets are an expense. Not just the feeding but the vers bills too. Hope circumstances improve and you can have another cuddly feline friend soon.
You have to clear stuff for charity shops in order to make room for more stuff, 😊. I wouldn’t worry about the appointment if I were you just accept it and go along. We have had a few things come through quite quickly recently but not sure why.
Candy you sound as though you’re quite busy all the time not just work days. Hope whatever happens to your step FIL he’s is comfortable and not in any distress. Worrying time for all of you.
scaredycat cold day here. Went to church this morning and it was pouring with rain. Have you been out today?
Sweetpeasue shame you didn’t feel any help from your MH visit. Did she give you any medication, advice, things to try over the next two months? Some men just won’t go near doctors will they. I’m glad you’re watching your DHs BP but if he has any more speech problems I would try and get him to see the GP.
I’m glad you went to book club although it doesn’t sound as though anything much helps at the moment. You sound very weary of it all and I’m not surprised. What’s next in the way of appointments?
nadateturbe if the pills aren’t helping you sleep could you talk to the GP to changing them for something else. Maybe an appointment at the sleep clinic. Not nice when you are awake night after night. I’ve been through phases like that.
You weren’t cuddling up to a fluffy dressing gown were you? 😊
Peaceful night all.

Wyllow She will phone in a couple of days. Nail on the head about revealing horrible stuff, exhausting, then the feeling not been understood. Mentioned I could probs 'move on' without the pain to remind me of the abuse I feel from what happened - it sends me right back to complete injustice.

We'll see. Thanks Wyllow.

Doodle I remember you saying about eyes last year and spring pollen I think. They must be so uncomfortable-glad the antihistamines help.
MH visit was more an assessment.
Physio nurse yesterday wondered ifpelvic floor might be too tight so suggested pelvic floor exercises but not too many.??? Then said she'd see me in 2 mths. Think she's hoping I'll have seen Gynaecologist by then.
Hope you and husband dont have your nightly walk tonight. 🤞

Doodle if she is a nurse from MH Older Adults, she will not be in a position to suggest treatment for Sweetpeasue until she's discussed it with either a very senior nurse, or doctor or psychologist.
A couple of days is actually pretty good time wise. I think they are taking it seriously Sweet

I think pelvic floor exercises are a very good thing to try indeed as long as you go at it slowly. Did she give you what to do?

Hoping MrD still feels a bit more positive - on and off Doodle.

Sleep problems have changed, now pretty sure they are CFS related, so I have to work out how to best deal with it for me. Past bad nights were powerful but on and off and knew what was bothering me this are weird blank feelings Nadateturbe might be same or different!

Have to see how it goes and find out more, but I cant keep taking extra sleeping/sedatives each night.

Wyllow- so hard to cope without restorative sleep. I do hope that soon you can have more peaceful nights so you can enjoy time with your family. Not so easy in a different bed though.
Nadateturbe- hope you get some better rest. What kind of Art do you do?
HVDY- I guess your DH has a point about the charity shop but it’s so hard to resist sometimes. As for Wilco - we have to stay out unless we really want something cos it’s almost impossible to not buy all those things you didn’t realise you needed!!
Glad you have your appointment next week- maybe there was a cancellation. Great service though.
EllieAnne- sorry you feel'poorly - glad you have,nt tested positive. But if you still feel poorly tomorrow might be an idea to test again. I wish you could rest at home and see after yourself.
SweetPeaSue- it must have taken a lot of effort to get out to Book Club . That’s such a horrible feeling you describe - I know just what you mean.
Sorry you didn’t feel any better after your MH appointment - will you see her again?
Hope your DH has had no more problems speech wise though if he does perhaps he really needs to see GP.
Doodle- Glad you got to Church this morning - do you have coffee afterwards?
Hope DH is still feeling better and able to do a bit more today. How were his legs after walking yesterday?
Woke up so early with the Whatifferies but had a better day today and we went into town and had a walk this afternoon. I have become very nervous walking but must persevere.
Candy - hope your FiL is holding his own - and you are able to get a bit of rest during your time off or at least do something you enjoy.
Good night allxx

Hi all, hope you are all as ok as you can be. Thank you for your thoughts re. FiL. He’s holding his own but not good. There’s a lot of pressure on my MiL and she’s not coping very well mentally. She was struggling anyway with memory loss but worse now, I guess due to the stress. We can only be there.
HVDY great your son made you chicken curry - I love chicken curry 😋. It’s good that you’ve got your appointment through and will be good to get it over with. I went to Wilco yesterday too, just a quick visit and I was on my lunch so didn’t have time to browse and buy things I didn’t need 😂.
Nadateturbe sorry you’re not sleeping. I hope things get better soon. It’s awful not being able to sleep. It’s only the meds helping me I think.
Wyllow sorry for your poor sleeping pattern too. I hope things improve for you too.
Ellie Anne I hope you feel better soon and are managing to get some peaceful time to yourself.
Sweetpeasue I hope your MH team come up with some positive ideas to help you move forward soon. Perhaps you felt worse afterwards because it stirred things up for you and triggered you? I hope things have settled. Good that you went to book club and pushed yourself even though you probably didn’t feel like it. Don’t give up, it will pass.
Doodle yes, my FiL seems comfortable enough and I have to say even though the NHS often gets bad press, they are being more than supportive, which we are grateful for. Hope you enjoyed Church. Rain here today too ☹️.
Scaredycat I’ve had a busy today and probably will do tomorrow but hoping to get some ‘me’ time on Friday. I hope you are ok.
Night all and hope you manage some sleep and have a restful night. ❤️ To all xx

EllieAnne Hope you feel better today. Being in the fresh air will help, especially if the weather stays dry.
SweetpeaSue I hope the MH team comes up with a plan for you soon. They seem to be taking things seriously. At your book club, do you review books? Swap them? Men can be awkward about going to the GP, can't they - but if your husband's BP continues to be high, he would need to be seen, I think.
Candy6 I'm glad you're getting used to the ADs. They help a lot of people. Your MIL will need the family's help, and that's all you can do.
Wyllow3 I hope you had a better night's sleep. Being awake during the night is not good for anyone.
Doodle I hope the nights are better for you and your DH too. How are his legs? Any change?
Nadateturbe Sorry you've been having poor sleep too. Perhaps ask the GP about tablets?
ScaredyCat Do you use a walking stick when you walk outside? It might help until you get your confidence back (I had one for about a month after I came home from hospital).

Hope all BDers manage to have a decent day. It's sunny here, so I've hung the washing out, fed the birds and squirrels, painted my nails and am going to get ready for the day centre. Roast pork today (which I don't like, so the cook is very kindly going to do me some fish). "See" you later x

Wyllow3 like you I get nights when for no reason I wake and can't get back to sleep. Sometimes I try making lists like animals beginning with 'a' etc, or focused breathing, but sometimes I'm just awake for maybe 2-4 hours reading, doing Octordle .... If you find a solution I would love to hear it.
Last night I didn't look at any screens, had redbush tea, read for ten minutes and had a wonderful sleep. Up fresh at 8am. I'll try the same tonight and report back.
HVDY that's good getting an appointment so soon.
EllieAnne it's awful that you can't enjoy being at home. Can you not have your own space? We all need that. Perhaps test again for Covid, although there are lots of viruses circulating atm.
Doodle it took me a while to get the connection "fluffy dressing gown" and actually yes, fleecy throw. Perhaps that explains the dream.🙂
Glad you got to church. And I hope your night wasn't too disturbed.
Thinking of you Candy.
Sweetpeasue I do hope you get some proper help soon.
Good getting to book club. What book were you discussing. I am going to make a big effort to get to our U3A book group. This month's book is Small Things Like These Claire Keegan.
I do acrylic painting (very slowly atm)
Scaredycat I don't know why you are nervous walking. But I hope it improves.

I honestly don't know how you all manage to remember details about each other that you have read pages back, and give such good advice online.
I could do it face to face with each person separately, being able to ask questions. But it would take me hours to do it here. You are all so helpful and I think BD thread is so important.
Hoping for a good day for you all, and any I haven't mentioned.

Hi BD’s.

Scaredycat I so understand how you’ve lost some confidence in going out and walking - what you’ve been through recently shakes one up a lot. FWIW, choose walks where you can get back to home or nice cafe quickly? Will take time to build up.

Candy a demanding and stressful time for you, but i get a very strong sense you are doing really well comforting and supporting, tho I was glad to read upthread there are other family members around. Plan your Friday - it could easily get eaten up by family concerns, when you need “me” time.

nadateturbe - who’d have thunk it - snap. I had a better night than for a long time. I certainly think that the reassurance from the psychologist has “sunk in” and helped a bit. but your description of that sort of “Desert blankness” in the night now so familiar, and I noted what you did/do with interest. But how to deal with the blankness but too exhausted to do anything…..however I think….

…….because yesterday I listened to my body a bit more, and stayed in bed in the morning, read, wrote diary, and didn’t have an afternoon sleep, but was able to decide quite late afternoon I could manage the gym, and so did a short sesh.

its totally obvious to me that I have to let go of Being Fit and maintaining the level of tone my body has and admit, “Im ill”. So I spent this morning in bed with some music and when I go up tomorrow to family have to not pretend am better than I am and trust it will be OK.

Just an additional thought Sweetpeasue. You mention not feeling understood. Now of course its possible she didnt “Get” you as much as you’d hoped, but its also possible again its the depressive voice at work on this feeling.

Also a reality - one session is not enough to really “know” a person, but what matters is that she knew you not perfectly, but “well enough”.

It is going to be very hard for you to trust anyone right now and very understandable. Try and factor that in. mY experience in MH is of course that some chats work better than others and some workers “match” a service user better than others, but they would not send someone out for an initial home assessment if they were “a beginner”.

wave to all BD's.

How has everyone's day been? I don't mean to brag, but - I won the Bingo at the day centre (£15), and they gave each of us a small Easter egg. Hope everyone's been ok.

My washing didn't get dry . x

It's been sunny here...lovely to look out on, .but been in bed shivering CFS all afternoon/evening after posting except for a shower so worried about trip to family.
See how the night goes.

Oooo, £15, nice one HVDY

So tired tonight. Last night was difficulty. DH had a lot of irritation in his legs severe RLS and couldn’t settle at all. On checking drugs it seems diuretics are a no, no for RLS. What can we do. He needs the diuretics. Had trouble on and off all day. Poor man is so tired. Don’t know what tonight will bring.
HVDY so pleased for you winning the bingo. Good news.
And an Easter egg. Hope you enjoyed your fish.
Don’t know about you but we had a real thunderstorm this afternoon. Torrential rain.
Sweetpeasue oh how I wish you could be relieved of that pain. Have you done any pelvic floor exercises before? I used to but gave up. Really should start again.
Do you know when your gynae appointment is?
Scaredycat yes our church is lovely and we do all have a coffee together after, when it’s not lent we have cake and biscuits too.
Please do try and keep walking. I know it’s what Annie always said but it’s so true. Can’t believe how tired my legs get now after only a short distance.
Wyllow I have found in the past that I can get into the habit of not sleeping well, if my mind is too active or I’m worried about something it keeps me awake. A few nights like that and the pattern seems to set in.
Hope you have a great time with family. As you say, don’t hide things from them. It will be better if they know how you really are than if you wear yourself out trying to keep up.
How long will it take you to get to them?
Candy anything out of the ordinary can make memory problems worse, your MIL must be struggling to understand what is going on. NHS have looked after my DH very well too.
Have you anything planned this weekend?
nadaterturbe isn’t a good nigh such a relief when you have had a run of disturbed nights. Sorry, sometimes my jokes are a bit obscure 😊 I have a fluffy throw too. So cosy,
We have been chatting for a while together which is why we know some things about each other but you can’t be expected to know everything. Just come and tell us how you are. Nice to hear from you.
Sorry if I seem a little distracted at the moment. I am so tired. I know many of you are too so it’s no excuse. My eyes are so dry from this pollen allergy my eyelids feel like they’ve got weights attached to them.
Hope you all have a decent night.

HVDY Well done. Bingo is fun.
Scaredycat I agree with Doodle, the more you walk, the easier it will get.
Doodle sorry last night was so bad. I hope you get the diuretics sorted. Sometimes it's difficult to get the balance right when a person needs several meds. And now your pollen allergy. You poor thing! You are certainly learning patience.
Wyllow3 so sorry you're feeling like that. Don't worry about the visit. You will only stress and make yourself worse. Your health is most important thing right now. Just rest and tell yourself it will pass. Sorry I can't think of anything helpful. I usually just take paracetamol in the hope it will ease it.x

Sending hugs to everyone.

Nadateturbe It's a horrible thing to be awake in the night as any problems and worries seem magnified so much. I hope you sleep better tonight. My book group is now run by U3A though originated as Adult Education class reading/studying Victorian novels. They finished and teacher left so now more varied reading with group leader. Just finished Hamnet. Not heard of Clare Keegan but her book sounds interesting, did you like it?
Scaredycat You are doing well to persevere with the walking even though your not as strong right now. Im sure it will be helping. I'm not sure if Ill be seeing her again until she contacts me again to see what's been decided. I think we have all felt 'cut off' from others at times haven't we? Hope you can facetime sister soon.
Candy Its an awfully sad situation you decribe with FIL and MIL. So many older people in that predicament. My FIL had Vascular Dementia and it must be hard for your MIL to see her husband deteriorate. I'm sure you will be busy trying to help so take care of yourself.
HVDY Good of the cook to do an alternative to the Pork for you. Hope your legs havent been too bad at night. A book is chosen every '' term' and we read it at home then read bits out aloud in class and discuss. We have a small section for poetry too. Ive only been to half the classes so feel slightly nervous now but thats because Ive not been socialising much.
Wyllow Thankyou gor your input about MH help. She was a psychiatric nurse(I asked). I guess I'm used to my counsellor being more mature, but if I was offered
help I dont think it would be the same person anyway. I hope you had another restful night and your visit to family goes well. I really understand your concerns. Ive been not too bad painwise in daytime for a few dys though early hrs bladder pain keeps awake. My sons and families are meeting up at caravan park and spending some time tog next week. Son asked if we could join them and v tempted as he understood my pain situation and said I could always retire to own caravan if necessary. Dont know what to do as wouldnt want to sloil their time and if I was really bad I think it would just prove that I will never be able to have normal life again. Deep down think Id be silly to risk it but I feel so depressed about missing out and dont see other son and GD very much. Crossing everything that your visit to family is good Wyllow.
Doodle I hope you and DH had a not too disturbed night. I cant see your last post but remember you asking me when next appt is. Havent got one for Gynaecologist or Pain Management yet. Next appt with counsellor in couple of weeks.
Hope your day has been ok.
HVDY Just seen youve had a win of 15quid! And an egg. Congrats! ☺️

Saw son this morning. Hadnt seen him since Mother's Day. Mentioned the hol and said it might do us good. He's kind hearted and he meant it. I'm so scared of how I'll be now, the pain is so unpredictable. I had 4 continuous days when couldnt go anywhere then last few dys not too bad though nights are bad. Will I ever get back to 'normal'. Why is pain not going away? What on earth is it? Just voicing thoughts.
Take care all and have a restful night. X

Wyllow My heart goes out to you, just read your post. Might you be ok tomorrow if you take extra med and get good rest? I know the anxiety of not knowing how things will pan out. I'm terrible at making decisions. At least I've someone else to drive. I'm so sorry. Hope you're not coming down with something.
Doodle You must be both utterly on your knees. I don't understand why you and DH have so much to bear. I know it's childish for me to say-but it's so unfair. Can you get in touch with the dept he is having his treatment in tomorrow to see about the diuretics or a GP? Dont answer, you're tired. I do hope you have a better night. God bless you both.

Sweetpeasue

you say, " I was really bad I think it would just prove that I will never be able to have normal life again."

yes that fear is there

but we have to somehow say, "well nothing venture" xxxx

Wyllow You are so very brave. There are so many brave people here.
I understand what you're saying.

Were you going for a couple of nights? You must be so looking forward to seeing them.

Hope you make it and you're ok. X