Black DOG 13

Evening all.
I’ve been busy knitting and crocheting today. No good at either but I enjoy a dabble.
Last night I was watching a video whilst cycling and I did 1.1 kilometres so I was pleased. No one should see me getting off the bike after. I’m like someone whose been riding a horse too long.
Oh Wyllow your post cheered me up no end. So pleased you’ve had a better day. Such good news. ?
HVDY not sure about a decent amount of exercise. Im a real old crock these days. Sounds like you had a full house today. Lovely to see them all I’m sure.
Scaredycat I do crawl to bed after cycling ? Its about all I can manage. Many people don’t like squirrels but I think they’re quite cute. We have several here in our garden as they see it as a safe place. The little ones often chase each other round on the lawn outside in the morning. They cheer me up just watching their antics.
So sorry about your friend. Hope the news is ok about the sepsis. If they give antibiotics quickly it can make quite a difference. Sorry too about your SILs husband. Nice you stay in touch. Glad you had a good lunch with friends.
Sweetpeasue I’m glad the pain is a little easier and
Your session was helpful. Take photos, record the things that happen and the times you’re in pain as all evidence helps when presenting your problems. I hope the coping strategies help.
You are not alone in several ways. Firstly you have us to talk to.
Also there are a number of people who have dark times in the middle of the night. In the midst of things it’s hard to see a way out but don’t give up hope. See what happens when your GP comes back. I do hope the consultant listens to you and can help find some answers.
You are doing better with your cycling than me. Well done.
Annie we all miss you so much. I hope you are starting to feel a little better and not in so much pain. Do take care.
Love and a big cwtch xx

Sweetpeasue you are not saying too much. You need to share your pain and bewilderment, how could it have happened, what will happen, and how it hits at night. thats when things close down, one is most alone.
I believe things will get better, but you have no road map yet: You'd need to talk to your lovely regular GP and more appointments because so far it's been going going in circles in your head and body. Can she help more with pain relief anymore?
I'm glad you have a counsellor, if the feeling of no way out keeps on too long then - consider levels of help where you can ring in crisis at night.

Alas I have never seen a red squirrel. Always wanted to, Scardycat...... what difficult news. Sadness. Sudden Glad there was a contrast in your day...probably it will return to "hit" you
....clothes..well...I did cull my small clothes and feel the better for it, like living in the present.

Doodle Maximum encouragement to keep the cycling but yes afterwards ouch on the legs - worth it in the end I feel as exercise does do what everyone says - body and mind and stuff.

HVDY how good to read about family stuff and a good patch with them!

Contentment didnt last, but its not been so bad: I've got divorce stuff TMI in terms of talking of Ex
Most of all atm am feeling only family wise: if I had the energy I could go up and spend time with family, but its no good with the 4 kids there and I need to rest so much and this is the difficult thing:

DiL got so hurt by my Ex she won't talk about it at all, and so..well being there but not able to share at all is..difficult it sort of increases loneliness, tho lovely with kids when its right....

A few more days of afternoon naps and gym, talk to my own best GP whom alas is now part time tomorrow...thenif I can see a friend or two and do some crafts I'll feel better

Annie as ever xx

and all of us who are troubled at night, lets hold each other in our minds, we are NOT alone xx

ScaredyCat Sad news then . Hope you get some rest, what with things on your mind. Glad you managed to meet your friend. I met my friend yesterday, and she texted e last night to say that her 15 year old GS had visited - she hadn't seen him for 11 years, after his father stopped all contact (his mum, my friend's daughter, tragically died when the boy was 2 weeks old).
SweetpeaSue Please keep telling us on here how you are. We all sympathise and all care. Keep a note of everything, every symptom, to tell the next medical person you see. Keep up with the strategies the counsellor has suggested.

I hope everyone on BD has a good sleep - I've got to share with DH and his terrible snoring (he sleeps in the bottom bunk bed when the GDs aren't here). Once Son1 has gone, DH will be in the other room all the time . I'm looking forward to it. Mr Cooper enjoyed all the attention from all the family today. He's been meowing and following me about for the past 30 minutes, until I relented and gave him some milk (spoilt brat) . x

Wyllow3 Chin up, you will have better days. We are all here for each other and we all think of each other (wish we all lived in the same town).

How is everyone this morning? It's grey, wet and windy here. I've got loads of washing to get dry, so some on the clothes horse, some in the dryer. The GDs are going to go out with their dad later, to get a couple of pumpkins, which they'll carve. I'm going to meet a friend for coffee this afternoon. Hope all on BD are ok.

Anniebach Not "seen" you on here for a while. How are you? x

Wyllow- I hope you can soon go and see your family and enjoy being with them . I think if you keep up,with how you are going it won’t be too long. Do what pleases you ,see people who are good for you and most of all be kind to yourself and the healing of body and mind will happen. We are all on this together.
HVDY- seeing friends is such good medicine isn’t it. Your friend must have been so glad to see her GS again.
Doodle- yes my friend is having intravenous antibiotics so hopefully they will help a lot. Good idea to watch a video and cycle - go Doodle!!!! We,ve had 2 walks today the weather is so beautiful - hope you,ve got this lovely sunshine too.
SweetPeaSue- hope you,re doing ok todayxx
Annie- sending love and hoping you will soon be back with us again. Big Hugxxxxx
Love to allxxxx

Evening. All.
Had a lazy start to the day as we overslept. Been out this afternoon collecting DHs meds from the hospital and pharmacy. So many different tablets and now they want him to take another for irregular heartbeat. That will bring it up to 17 different tablets a day I think. Need so much storage for them.
Wyllow I’ve never seen a red squirrel either. All ours are grey.
My legs certainly know when I’ve been on the bike but I will continue. Must be so difficult for you not being able to talk to your family about things. I hope you get to visit them soon and spend some happy time with them. Hope you get to see your Gp. Friends and craft things are good. I have a friend I do craft with. What sort of things are you interested in?

What a lovely thing to say at the end of your post and a really good idea. Let’s do that x
HVDY your friend must have been delighted to se her DGS after such a long time. What a shame she wasn’t allowed contact before.
I have read putting a tennis ball behind your back stops snoring but have never tried it. See Mr Cooper is still managing to twist you round his paw. Lucky cat. ?
Hope you had a nice afternoon with your friend. I used to like carving pumpkins with my DGC too.
Scaredycat we had a beautiful walk this afternoon. So sunny and warm with lots of lovely crunchy leaves to kick through as we went along. I love autumn colours.
Do you have many trees where you are? We have quite a lot along the river and in the local parks too.
Sweetpeasue hope you had a less troublesome night. As the others have said, it’s ok to say how you feel, you don’t have to hide it.
Annie we miss you a lot. Hope you are ok and not in too much pain. Is the GP looking after you properly?
Much love x

Wyllow3 Thankyou for your kind post yesterday. You too understand the thing about nights. I agree with Doodle, it was a lovely thing to say about holding each other in thought. I'll think about that when I wake in the early hrs. You are pacing yourself which is good. You will know when it's right to visit family. I understand that there are problems with opening up about sensitive areas. I don't think there can be many families who can do this on everything.The time might come one day 'To everything there is a season '. We can only be kind to each other. Working at a craft does free the mind doesn't it? I should get out a cross-stitch winter scene I started but never completed.Hope you managed to talk to that GP.
HVDY Thankyou for your caring words of support. I hate bleating on though when everyone have their own struggles. Oh I've lots of notes and a diary. Pages of jottings. Never expected it to go on so long. Started very dark, windy and rainy here too then came out lovely late afternoon. The children love Halloween lanterns don't they. As children we used to use large swedes.Harder work than pumpkins I think.
Scaredycat I hope the sadness of yesterday has lessened. Glad you enjoyed your walks today. With the news being bleak it's a blessing to have this month's lovely weather with it's glorious colour.
Doodle I managed a little cycling this morning. Does your bike have different tensions? It occurred to me you might have it on the hardest one so your pedalling is harder. You are so persevering. The vision of you getting off bike made me smile but also wince! Our medicine cabinets certainly get fuller the older we get but your poor husband. It must be so confusing having so many tablets. My aunt has a special container and her daughter fills all the boxes for a week.
You are so kind Doodle Thankyou for your words.
Annie I just hope things get a little better for you each day. You must be very low with everything. I hope your pain isn't very bad. You are very much in our thoughts.

We picked up grandson at lunchtime from day nursery. Took him to a garden centre where he saw some live owls. Had a good afternoon with him and a nice treat in cafe. Played some games at home. He distracted me from own issues, I love him so much. It always worries me how older than their years they seem to be
now. He enjoyed everything so much.
Still continously bleeding and nauseous but have painkillers.

To everyone I've not mentioned on BD, hope you're all OK.
Nadaterturbe I left you out earlier so sorry. Thankyou for your thoughts for everyone here.
Night all. X

Doodle The idea of sewing a tennis ball into the back of a pyjama top to stop snoring is that the person then can't sleep on their back and snore. My husband snores in any position, even sitting up on the settee! Does your husband have all his tablets in a dosette box? 17 a day is a lot. Poor man.
SweetpeaSue Glad you had a lovely time with your grandson. Children these days do seem older than their years. It's a shame but they really aren't innocent for long enough.
ScaredyCat The weather was gorgeous here, too, yesterday. After the initial rain and grey sky, it brightened up.
Wyllow Hope you are feeling better and are being kind to yourself.

I woke up with a strange churning feeling today - it's the last time the GDs will be staying here overnight (their beds will be going to the house Son1 is moving into, of course). He's been here for almost 3 years (he'd been and come back a few times before that), so it'll be a new beginning for him, us, also Son2 who is moving away, in the week. Up and onwards for us all. Hope all on BD manages to have a decent day today x

Apparently, the GDs spent their last night here last night - their mother wants them home tonight. That'll work out well, as tomorrow, the bunk beds can be dismantled, and all the bedding (about 6 sets each bed) can be packed, ready for the off on Monday evening. I'm excited . How's everyone been today?

After Wyllow’s suggestion I thought of you all last night before I went to bed and when I woke up.
Sweetpeasue yes my bike does have different tensions and mine is in a light one 🤣. I thought I was doing really well tonight when I looked as though I had done 3 kilometres then realised I was in the wrong setting and I had done 3 minutes 🥺
DH doesn’t like using boxes for his meds as it would take so much time to stock them. He also has ones he takes in the morning some during the day then evening and then just before bed. He is very organised but it does take up a lot of his day just sorting out his various tablets.
What a lovely day you had with your DGS. I’m glad he was able to distract you from your troubles for a while.
HVDY I can see the tennis ball is not a solution. I believe you can have an operation for snoring but if you sort out separate rooms that’s probably ok.
I can understand that churning feeling. When I’ve been with my DGC I always feel lost when they go. Sort of sad and melancholy. It’s a strange feeling. Not depressed but certainly low.
Don’t count on them not coming back for a sleepover sometimes. You could get some blow up beds for them or lilos.. Hope both your sons get on well with their moves.
Joce I’ve been thinking about you today (I was doing some sewing) and wondering how you are. Hope you and Coco doing well.
Scaredycat had a good walk today. No coat 😱. It was so warm and lovely. Our legs get tired but we try to keep going. I know Annie would encourage us to keep at it.
Hopenyou have had a good day.
Annie as ever, tHinking of you. Hope we hear from you soon. We miss you. xx

I had a very bad night but did think of others xx

The possible discharge is overwhelming everything, sense of panicky loss.*

family haven't got back on c mas, (tho I know I'll not be up to big do, just want to be INVITED) and a long discussion with Ex disturbed me greatly to he is going to fill in the final forms as required.
Mainly exhausted tho did make to to gym

sorry I'm too tired off to comment on folks individually, but you know what I feel. am reading xx

but oh......on " I've lots of notes and a diary. Pages of jottings. "

Me too. 350 pages on the computer since January 21st! It does help, actually. Keep on going with that.
It can be useful when one needs to refer back, it acts as a venting thing, just sometimes it can give a bit of perspective. Also v occasionally -edited - useful for professionals as well.

take care my dears xxx Annie you have not gone from my mind.

* found something out from GP which may be of interest. Mental Health - and some physical health - is funded per new referral.

So there is every need to discharge people asap to

1. Give space for new referrals even if old patient only "just coping".

2. To discharge knowing that a person can be re-referred and they will get more funding for treatment.
BUT - that was all very well when there was not a long waiting list for treatment. This system started about 8 years ago when it wasn't as critical.
Won't get political but we know who did it.
Info on funding from my nice bestest GP whom I talked to on phone last night. and she has arranged an"in person" in three weeks bless her.

I have been reading everyday. And for all your ups and downs you are here for anyone who needs you no matter how poorly you feel. And that is amazing.

Started my 10th pain flare today since mid August. Spoke to my GP Monday and my neurologists secretary to get an appointment to see my neurologist. As it will be easier to get to the pain clinic via him as he can explain what my condition is. And hope to see a physio . My left leg has been doing weird things but at least I can still walk . My GP has had some blood tests done as she wasn't happy with my last ones. Then went to the pharmacy for my Covid jab apart from a headache for a couple of hours and feeling tired was fine .

When I read stories of people glueing themselves to buildings etc to highlight environmental issues. I want to scream . Don't these idiots realise people come first. There antics stop people getting to and from work but they don't care as they must be very rich or don't work and fleecing the benefits system. Plus tie the police time up so they can't help people who really need it.

Next time some idiot glues themselves to something just leave them . And when they finally get free make them work for no pay in cleaning the streets and see how much fun it is to care for the environment. Bet they wouldn't last a day doing hard work.

I know it's veering off the thread but when I read what all of you go through on a daily basis the stupidity of these people make me mad.

When did it get to a point environment and animals come before people.

If they went through what you brave people go through daily they wouldn't cope . But you all battle on. Thank you all. 💖

Doodle- oh your husband has a full time job with his meds! Does he use an alarm to remind him when to take them? I use my phone alarm . Yes we have lots of trees - I too like walking through the leaves . There are so many chestnuts and acorns - think it might be a hard winter.
I also thought of everyone in the early hours while trying to shut my head up!! I,m very tired after an emotional week and the tinnitus is having a field day - it’s horrible isn’t it.
SweetPeaSue- what a nice time with your GS. Owls are just the most gorgeous birds. I bet he loved them, I,m so sorry you are still having such discomfort but glad the meds are helping.
HVDY- no wonder your tummy was churning it’s a momentous weekend for you all. I wish both your sons all the best in their new lives . It will be strange for you at first but know that you.ll be so glad that they are happy. They,ll enjoy coming to stay with you in the holidays too I expect. Will think of you on Monday.
Wyllow- hope you have a better night tonight. Glad your GP is helping you.x
Whiff- glad you,re ok after your jab. I must admit I always feel concerned for those so badly inconvenienced by the protests. It a,ways seems such a selfish way to behave.
Annie- missing you very much and hope your pain is lessening.
EllieAnne,Joce, VioletSky,and everyone hope you sleep well tonight and tomorrow is a better day.

On the night shift, thinking of you all.

Doodle When I got up at 3am (for a wee), I got back into bed and DH's feet where near my head - the cheeky swine reckoned I'd taken up too much room and so he's had to sleep the opposite way round! I must say, his snoring at least wasn't as bad when it wasn't right in my ear! You're doing well with your cycling. 3 minutes is better than none (like me).
Wyllow3 I hope you have a better night tonight.
Whiff I hope you'll get a Neurology appointment soon. I agree about those protesters. It must be a nightmare for people trying to get to work, not to mention ambulances trying to get through, and the police having to deal with it all.
ScaredyCat Thank you. I'm excited to be getting the house back to just us.

Well, we went out for dinner with Son1 and his girls, to a nice restaurant. It was because we won't be doing so again for a while - he'll need to get used to being alone sometimes when he moves (he's never lived alone, only with a woman). It was lovely, and I ate too much, then had 2 double vodkas (DH drove). I'll sleep well tonight, and I hope everyone on BD does too xx

Was going to bed but DH is going round putting the clocks back.
Wyllow this possible discharge threat is really setting you back with worry. If only they realised the panic this is causing.
It’s always useful to keep a record of things. We forget sometimes and it’s often good to be able to refer back.
I hope tonight will be a better one for you.

Whiff nice to see you posting again. Sorry about the pain flare up. It’s good you are going to see your neurologist. DH’s consultant has been a big help to him. Hope you get that appointment in the pain clinic soon. Glad you haven’t had bad side effects from the Covid jab. I felt quite poorly for 24 hours or so. Still can’t complain if it’s keeping us safe.
Please let us know how you get on.
Scardycat DH is a very meticulous methodical man. He has a good grasp of his meds and rarely forgets to take one but it does take him ages every day to sort them all out. He lines the, up like little soldiers on the worktop and knows each one by is size, shape and colour. 🤣. Like you I wish I could stop my head going round and round with stuff. Each night when I go to bed I try not to think about anything but to just go to sleep. All sorts of things keep my mind active. Sorry about the tinnitus. That doesn’t help at all.
HVDY your meal sounds nice. Hope you do have a good sleep tonight.
Ellie Anne been thinking of you too. Have you been to see you DGD riding yet or your DGS?
Take care all. Sleep well. Will be thinking of you.

Although I slept longer than usual in the night I woke up and thought, just like that, "I'll have to die, I'll have to kill myself". I didn't panic, but its a step further than I have though before. dont panic BD's - these are not unsusal thoughts for me, but just rather sudden and strong, and will to my worker next Thursday along with other stuff.

CFS a large part, as I'm not seeing many people, too tired to pop up to family, seeing friends - all the usual things that are ++ arent easy atm, and hard to say ow current contact with Ex on divorce stuff playing its part.

I thought of you all too each in your own nights.

Ah...sleeping with DH's..... I was never reality able to sleep with Ex because we were sort of sleep incompatible, just bits and bobs, and v heavy snoring was an "Exit rapidly to own bedroom" sign.

Whiff was very concerned to read your post indeed, you are right - I just wish for you that you dont have to wait for too long.

Wyllow pleased don't concerned. I am ok. I have been in constant pain my whole life. Things got worse 1988 when the pain got out of control and the jerks started in my limbs. My wonderful husband was my rock always said he knew I was damaged goods from when we first went out. We had 29 years and married 22 together and 2 children. Because of him and I can face anything .

The pain flares really annoy the hell out of me. It's not the pain getting worse it's the fact it stops me doing something's. But they are just part of me. At least thanks to my neurologist haven't had any limb jerks or full seizures for over 2.5 years. That has changed my life. I never had any warning they where going to happen. My husband used to say he needed to sleep in a suit of armour as I hit him in my sleep. Just wish I had my diagnosis when he was alive. Used to joke and say when I die have an autopsy then you can say that's what was wrong with her.

Never had so many close together. But this year finally having a diagnosis while is amazing because it's rare still learning things about it. But all the things I experience others with the same gene mutation do to. Plus they have other things which luckily I haven't got. But this flare will pass in a few days and back to pain I tolerate.

All here have your own problems to deal with . It's lovely you care so much for others. That's why it's so lovely to read and all give support to others like me who just pop in now and then.

Thank everyone of you for caring. X

Knowing a diagnosis when its been vague and horrible must have been a relief, as is knowing patterns.

I had a lovely Quakers - and who was waiting outside at the end? Ex. Spiffed up, and thanking me for my "calmness" in our conversation the other day. Waves of familiarity. Being really nice and asking me to Confirm/Reassure we would never lose touch*

As it was raining I gave him a lift, conversation towards the end went in a direction which made me certain that I'd made the right decision about his total hostility to my DiL/DS, end result was I had to "choose" between him and my family.

He was provocative too, as in his suggestion today he contact my grandson (his step grandson) directly behind his mum's back, He'd done it early this year, telling DGS to "keep it secret". Obviously Mum blocked GDS phone (he's only 10) and became more hostile than ever.

Ex doesnt see he had done anything wrong, bitter. I understand he has lost stepgrandchildren - but it has been of his making.
There WAS a point I think he could have seen stepgrandchildren and it would have been OK, but mum wasn't happy, having met him at his worst MH wise, and its up to her.

* I demurred about "we'll never lose touch" because I need him to sign some final stuff on divorce. I'm fed up of not being able to say what I really think but its been needs must at great cost.

That said, I don't want to totally cut him off, I want "low contact" and the ability to be more honest, and if this doesn't work, then so be it. Recently he has shown a little more awareness but then these gigantic hatreds come along where he has done nothing wrong, its always the other's fault.

Whiff of course we worry about you. Can’t imagine what it must be like to live in constant pain. Hope you get your physio appointment soon.
Your husband sounds as though he was a great support to you.
I have been reading up on your diagnosis as it is something I’ve never heard of before. Must be a worry not knowing when the pain flare up will start. You seem to deal with it in a very stoic way. Is it in any way hereditary?
Wyllow were your thoughts because of the fear of being discharged or for other reasons? It’s a good thing you plan to discuss it with your worker soon.
I’m sure going out and mixing more would help but if you’re too tired then that’s not possible. Could you meet someone for coffee for a bit.
Hope all BD having a peaceful day. Annie thinking of you and wondering how you are.

Whiff. Oh I'm so sorry about your pain flare. You have so much to put up with and you've been through such a lot in your life. I believe you are very brave indeed and you have always managed to keep your sense of humour despite everything. I hope the tribunal appeal won't take too long. Sorry if you've already said, I may have missed it. You made me smile about your lashing out in bed when with your DH. He must have got such a shock. I must tell you that I get very vivid dreams and some years ago I once bit my husband during one. (No, not THAT type of dream 😉) It wasn't a serious bite but enough to cause him to jump considerably. 😂 Sorry, but I laugh every time I remember it. I really hope your pain clears off soon Whiff, I truly do. x
Wyllow3 Are you OK now? I'm concerned. You must feel so scared of being discharged at a vulnerable time like this when you are so needing of help. Sounds like it's been a very bad night for you when all the dark thoughts come crashing in and everything seems hopeless and bleak. If we can get through those times when we are tormented and disbelieve the self destructive thoughts that put us down we can see clearer in the daytime. I hope you do get a Christmas invite. As you say, you might not be able, but it means a lot to us to know we are cared about. Take care of yourself and pace yourself and don't let your energy be depleted. CFS must be so difficult to manage in your state.
*Scaredycat *I hope your day hasn't been too bad. Weather here is very dull, windy and cold but might be better where you are and you may enjoy a walk anyway. I must admit I've passed on a walk today. That tinnitus must be so annoying for you, I do hope it's giving you a rest today. Thankyou for your caring words, I'm feeling much better today. I hope you have a good night tonight.
HVDY Although it will be good to get your house back to yourself I can see how it will also be bittersweet and take some getting used to. I'm sure your little granddaughters will be back soon. I second Doodles idea for inflatable beds. My husband snores too(he says he doesn't) Not sure his feet near my nose would be a great improvement though. 🤭
Doodle I hope you had a more restful night tonight. My head does the same - in fact many of us here seem to get the night time brain being overactive. I wonder if we work hard trying to suppress our worries during the day so they burst out when we've no escape in bed. Hope your legs are OK and you're not working them too hard. 3 mins is better than 1! I didn't do a any walking today so will be going up soon to do some peddling myself.
EllieAnne Hope you're OK, we've not heard from you for a while. Thinking of you.
Annie Love as always. You are always in our thoughts.

I've had much better day today. Think B might be waning, thank goodness. Forgot to put clocks back so we got confused this morning!
Love to everyone and thinking of all on BD. X

Sorry, missed your latest post Wyllow and Doodle. Catch up later.

Good to hear of bit better day, Sweetpeasue. Dont feel you have to comment on everything, and it was comforting about the nights thing, I needed a space to off load.

Not sure on nights, Doodle, ie "why", a number of things together? Discharge threat last straw?

Confusing as can have OK days then it "hits" at night but I very much doubt I am alone on this.

How has your day been, have you "biked" yet.....or is it well deserved "day off".

HVDY- hope the vodka worked and you had a good sleep last night. When I used to be able to drink I often slept badly after drinking - dropped off quickly then woke up. Bit like now really except no drink😩 Hope all the moving goes off well tomorrow.
Doodle- takes a while to change the clocks doesn’t it. I wish we didn’t have to do it at all it’s just another thing to mess up sleeping. My friend is still in hospital but it turned out to be an infection so after time in isolation should be back on normal ward. Thank goodness.
Whiff- you have so much to deal with but you cope with such stoicism and humour. You are an example to us allx
Wyllow- I wish I could give you some helpful advice. Please take care of yourself xx
SweetPeaSue- good to hear today has been a better day. Oh dear you must have wondered what was going on when yo7 got up!! Just wish we could leave the clocks alone.
The tinnitus never goes away I,ve had it 24/7 since 1992. It’s very tiring but quite a few of us have it in BD so I am not alone.
Annie- thinking of you and sending lovexx
Sleep well gangxxx