Black Dog 18

HVDY Disappointing about your balloon ride and your being made to feel wrong when it was they that did the cancelling. Thank goodness wife's sis has taken over the care of yoir SIL. Sounds like she knows the score. Lovely news that day centre has had a bit more time.
Doodle Glad youve had a nice break and home to your own bed. The heat has been a bit difficult and I believe you're further south so must be warmer where you are. I struggle to chat and wish I wasnt so self conscious. I think it takes the pressure off if someone can chat easily. You have a gift Doodle.
Scaredycat I love traditional Sunday roasts too. So glad you enjoyed your visit to seaside town. DH has been told by Dr to stop ADs for another couple of weeks unfortunately. I'm pretty sure they aren't causing side effects but she's playing by some rule I think. She arranged blood tests for him in another surgery at 7pm tonight so thats good.
Nadateturbe My DH is quite down about not being able to do his painting because of difficulty lifting his arms. Its a shame as he can't distract himself ftom depression. Hope its cooler there now.
EllieAnne Hope you've been ok today and your DGD isnt too bad with the covid symptoms.
Candy Strange you should talk about upping AD dose as Ive not been good last few dys. Not sure how often this has to be done really. I will jhave been on them 4 weeks on Wednesday. Not long really. Hope you pick up soon.
Wyllow Thinking of you every day and sending another hug. Do keep in touch with MH people. Thankyou for coming in and telling us you are here and reading. x

After Drs callback went for some bits from shop and came back, washed hair (lots coming out as usual, sigh).
Pain going to shop and made me feel down. About an hr before DHs Blood tests a huge thought hit me like lightening - - I will live in pain daily forever and I wont return to being 'myself'. I knew I wouldn't want to live like that. Went to DH cried and cried. I didnt trust myself to be alone while he left house for half n hr-had to go with him. So scared. I see Psychiatrist tomorrow morning (review about ADs). Not sure if to tell her or not. They know I've these thoughts but have not had them too much for a week. How can I go on with such pain, some extremely severe, and live with whats happened with no justice. Knee much worse today, could hardly walk as had to keep that leg completely straight. No walks on beach now-everything taken away from me. Feels like nothing left of the me I was.
Sorry I shouldnt have come in tonight. If my posts to you all seem cold and factual I'm sorry too. I tried to come in.
Feels like 'blind leading the blind' with DH and self. Feel so strange tonight and scared.

Sorry if left anyome out. Hope you all can find peace for a while. X

Hello everyone.
Hi EllieAnne. Hope you managed to sleep. It was very hot here. I slept inside a cotton duvet cover. But still difficult. Remember to drink plenty of water with alcohol in this heat. No harm in a few drinks if it makes you happy .As long as we are aware of the dangers, as Candy says. I wish I could, but a glass is all I can manage. Hope you haven't any symptoms and your GD recovers quickly.
Sweetpeasue good decision of your husbands to take the ADs again. It’s good he slept last night. Did he get through to the doctor?
Sorry you had such a bad day yesterday. Hope today was a bit better.. I’m sure your ADs are helping, , I don’t really know how they work, but maybe you can still have days when they don’t do much for you. Someone else might know. I hope the pain clinic gives you some much needed help, giving you a big hug.
Candy I hate when the dark nights return, it seems to happen so suddenly. Bright evenings are . I usually l lmuch more cheerful. I'll soon be lighting lots of candles, and I’ll start taking my vitamin D again. Your poor dog must be so confused having dementia as well as being blind and deaf. No wonder he gets angry.
HVDY I’m glad it’s a bit cooler for you today. maybe a good idea to leave your brother to it for a while. You’re not having a good day! Just as well you kept your old specs, I do that too. Shame you wasted time going to the aqua aerobics, and it must have been disappointing to find it cancelled.
And then balloon ride cancelled too. Honestly, and how ridiculous to be told they would extend it “as a goodwill gesture” when they keep cancelling!
Very poor service indeed.
Scaredycat Glad you had a nice birthday, and lovely that you sat outside until late. Summer passes so quickly and with it the opportunity for sitting outdoors. The days shorten so suddenly. We keep feeling that it’s time for bed, but glancing at the clock realise that it’s still early evening.
I went to art today but I'm having difficulty finding a subject I want to paint and getting motivated. But going to a class really helps.
Doodle glad you’re safely home. How is your husband’s leg now? No hurry for the washing, better to get to bed and tackle the rest fresh in the morning. Sweet dreams.
HVDY just read your last posts. Good news that your SiL’s sister is going to take over sorting things out, as she understands the system well. I can’t believe the care hone rang to get a family member to take your SiL to hospital. Sounds to me like a very incompetent place, which needs investigated.
Great news that the day centre has got some funding until Christmas. A good ending to a day which didn’t start well.
Wyllow3 sending love, thinking of you, keep going ,you will get through.xx
Goodnight Whiff Nanna and anyone else I haven't mentioned, hope it’s a peaceful, comfortable one.xx

Oh Sweetpeasue I've just read your last post. I'm so sorry things are so bad for you. My heart goes out to you. You must tell the psychiatrist exactly how you feel, in order to get the help you need. I do wish you could get proper help with the awful continual pain.
My sister had a lot of stress at one time and her hair fell out in clumps, but it grew again.
Your husbands arm pains are probably temporary and when the pain is treated he will be able to get back to painting or find something else to distract him.
Sending love and prayers.xx

Caught up. Sweetpeasue yes, tell. Similar here.
Love to all BD's and struggles and small triumphs. xx

Sweetpeasue don't apologise for how you feel. If you can't write it here it will only play on your mind. Better to admit how you are feeling that way it's out in the open otherwise you will hurt yourself with your thoughts . And yes thoughts can hurt. I did that to myself after my husband died. I thought I had to be brave for everyone I was stupid but I had no one who I could open up to . The beavrement group I went to was useless and I couldn't say how I felt as every one else was at least 20 years older than me . They didn't want to know . How I wish I had found GN when I was 45 unfortunately wasn't a nannie then.

I know what it's like to live in pain every day I can't remember a time since a child I wasn't in pain with my legs . Since 1988 it effects all my limbs . But I have gotten used to it as I am 65. To be honest I wouldn't be the person I am without. As it's made me fight everyday to do things I want but my way.

My extended family never made me feel different because of the pain and falling over all the time. And my husband on our first date as I told him what I was like. But he wanted me and loved me until the day he died.

Admitting you are struggling with anything takes courage and as I have said before . Everyone of you who posts here is stronger than you think because you admit how you are feeling. You must realise there are a lot of people who read your posts but can't post themselves. But I am quite sure many recognised themselves in your posts as they are going through the same thing.

Any pain is hard to cope with whether physical or mental or both. But if that pain is caused by medical negligence then that's harder to bear because no one wants to admit they have damaged you and therefore offer no help or answers as to why. Nor an apology.

Quality of life is better than quantity. But unless you are dieing in agony then you must fight on. And live the best life you can . Pain is exhausting but it's not all you are . So unfortunately as hard as it is be the person you want to be and own your pain. It's bloody hard I know but I look at it this way how many children fight pain daily and unfortunately die before they have had a chance to live.

So no matter how hard life is it's well worth the fight. It takes courage to live with awful things . It's easy to give up. But you all have the courage and fight to see another day .

Just such kindness. I feel ashamed at what feels selfishness just so weak.
Husband arm'shoulders, neck stiff Dr thinks might b Polymyalgia(I had it some yrs ago) so we'll see Nadateturbe

Whiff Dont know how you live from day to day. You are an inspiration. I'm sorry. Can't explain. Feel burden on him now. Feel like the me has already died because there seems no hope. I always thought I'd be free from pain one day. Such long waiting list.
Sorry everyone. I'll be ok. Just so bleak and despair. I must get up. Things can't mention here but taken away from us too. Cant look after GS. Pain hardly ever leaves completely and so unpredictable.
I'm sorry I shouldn't post but I'll be ok.
Just thankyou for all of your kindness. X

SweetpeaSue Has your thyroid been checked? That can cause hair loss. Sorry if you've said before. You must be absolutely fed-up. Do tell the Psychiatrist how you're feeling.

nadateturbe In my experience with ADs, I still have the odd day when I feel really low or anxious. Then I just think tomorrow's a new day. I've reported the care home to CQC. SIL's sister has told the safeguarding team about the place. To think that people pay about £900 or more a WEEK to live there

8Whiff* Very wise words there, as usual.

I've had a few vodkas (not driving tomorrow so it's ok), and feel nicely "relaxed". Off to bed now. Hope ALL BDers have a restful night. It's cooler, thankfully (17 degrees here at the moment) x

What a very good post Whiff. You have expressed how many of us feel at times, and from your own personal experience how we can and must keep on living the best life we can in spite of difficulties. And yes, there are those who will never have the chance to do things and enjoy life as we have been able to.

Evening all
HVDY a bittersweet day for you. Shame about the balloon ride (awful attitude by company) but great news about your lovely day centre. I’m pleased for everyone involved. Your SiL’s care home sounds appalling. I hope her sister sorts something better for her soon.
Sweetpeasue so sorry you feel as you do but like others have said, do tell psychiatrist so you can get the help you need. It’s not easy to get these appointments so make sure you get all the advice you can. You will get your old life back, with the right help. Good luck. Hope your DH is ok too.
Doodle you’re probably all tucked up in bed by now. Hope you have a restful sleep. Glad you had a nice holiday.
Scaredycat glad you had a nice day out. The pure beauty of the sea never fails to lift me. So good for our well-being.
Nadaterturbe I’m glad your painting helps you. When we were walking near the beach yesterday there as a lady painting there and we both thought how lovely it was. I hope you find a suitable subject soon.
Whiff a lovely, caring, informative post as usual.
wyllow & ellie-Anne thinking of you both and sending ❤️.
Haven’t had the best of days today. As I mentioned I’ve been feeling a bit low then this evening, after work, felt anxious and low. I don’t know if it’s because I’m worn out or it’s the onset of winter. I know it’s nothing to what others on here are going through, but I felt some of the old feelings coming back. I’ll need to monitor it closely. Anyway, apologies for the moan because as I said, I really do know others are suffering so much more. Night all. Hope everyone has a restful one xx

SweetPeaSue- so concerned for you . Hope you have been able to tell your psychiatrist everything you have told us and exactly how you are feeling.
The ADs are not a miracle cure so there will sometimes be days when you don’t feel as good as others but you will start to feel like your real self and be able to cope better.
Your constant pain is the root cause of your unhappiness together with the feelings of injustice you rightly feel - it has taken away your confidence and hope for the future. Whiff as always is there with such helpful advice.
Acceptance is so hard but it really does help if you can find ways to manage a ‘new life’. Never feel ashamed of how you feel - you are just frightened.
Sending a hugxx
HVDY- hope you had a good sleep after your Voddies!
Great news about the day centre- there’ll be some happy people on hearing it.
Glad your SiL has her sister on board to help her- you must feel relieved.
It’s disgraceful how much people have to pay and what little care they get for it sometimes.
Hope now the weather is cooler your legs have calmed down a bit.
Nadateturbe- How about painting one of your lovely photos of your beautiful countryside you have shown us. When I painted a lot I always used my own photographs- much to the annoyance of my old teacher!!
Candy- sorry you feel low- I think it’s probably a combination of all the things you mention. Is it possible you could reduce your hours a bit- you are such a busy person. I agree it’s nice to be busy but sometimes it’s like a hamster on a wheel - maybe you just need to get off sometimes and just be kind to yourself.
You are not moaning - it’s good for us to be able to share our feelings here.
How is your MiL doing?
Wyllow- as usual thinking of you and hoping today can bring a bit of light to you.

Feel worried about one of our DiL as she has just received a concerning diagnosis. So wish we lived nearer as they live a long way away. But we,ll support her as best we can.
Take care allxx

Scaredycat That is very worrying news about your DiL, especially when you live far away. Will you be able to visit? I've no idea what your journey would be.
I must look at my photos, good idea thanks for your thoughts. .

Candy I don't know what the 'old feelings ' are, but I hope you're all right today. As Scaredycat says, you're a busy person, Perhaps you need to slow down a bit, have more time to relax. Maybe not the whole answer but might help. You always enjoy being at the caravan.

ScaredyCat Whatever the worrying diagnosis your DIL has had, I do hope she gets treatment soon and that she gets on well. Of course you must be concerned for her, but you'll support her as best as you can. Has she got her parents? Siblings? I slept nicely, thanks. I never have a hangover - I drink a pint of water and take Paracetamol after drinking any alcohol.

Candy I think when anyone has got depression and/or anxiety, it comes and goes - I'm often a bit up and down, but it doesn't last too long. Are you overdoing things at work? The dark night don't help, either.

nadateturbe, SweetpeaSue, Wyllow, Doodle, EllieAnne, ALL BDers - hope your day has been alright.

Saw my friend today for a catch-up and lunch (and cake). Son2 called in after work. We're having the baby all day tomorrow . It's rained almost every bit of the day, but I prefer that to the heat. My legs are easier, too. Hope everyone has a relaxing evening x

HVDY pleased to hear the day centre has a reprieve for now anyway. Hope your SILs sister can sort out the care home. Doesn’t sound as though they’re doing a good job.
Have fun with the baby tomorrow. I’m envious, I love a baby cuddle . Glad your legs are a bit better.
Sweetpeasue I just talk simple things to people, I am not an intellectual so stick to stuff like where they come from and family type things.
Good your DH is getting his blood test soon. I Hope that may throw some light on his problems. Shame about his painting as it obviously helps. If it is poly myalgia I hope there is treatment that can help.
Really sorry how low you have become with this ongoing pain. I Hope you did tell the Psychiatrist as they need to know these things to be able to help you. Hope the consultation weren’t well. I know you feel that everything has been taken from you but things can get better. The right treatment will help. I just hope they find an answer soon. Sending hugs.
nadateturbe do you find the vitamin D helps you when it becomes darker in the evenings. Thank you for asking, DH s leg seems better although is still causing him pain. I changed the dressing today and we were both pleased with how the leg looked. I have booked him an appointment at the doctors for Friday just to make sure it’s ok.
Do you find this hot weather makes you even more exhausted? I’m glad it’s a bit cooler today.
Whiff you always write such thoughtful and caring posts with great insight. Your DH sounds a lovely man, I’m not surprised you miss him so much.
Candy yes we were very tired last night. Silly really as we’d just been on holiday but I always find it the same. Come back and are worn out with the travelling and sorting out the cases.
Hope you had a lovely day on the beach.
You never need to apologise for saying how you’re feeling on this thread. Your problems and concerns are as valid ans everyone else’s. I’m sorry you’re feeling a bit low. I get like that at times when things are on my mind. Sometimes I am swamped with anxiety. Hope your spirits lift soon.
Scaredycat so sorry to hear about your DIL. That must be a worry. I do Hope there is help available for her. Being a long way away must make it difficult to know exactly how things are.
I Hope she has family support around her but I’m sure you’re being there for her will help. Does she have young family?
Another early night for us I think. We has such a good sleep last night it was bliss.
Wyllow I’m glad you’re here with us still. We miss your good advice I think. I wonder if what you’re going through now is some kind of bereavement. Whatever, there is no right or wrong way to handle it I just hope you’re getting the support you need.
Hugs for all. x

Sorry I cant address everyone. Just wanted to say thankyou for all of your caring and supportive words. It means so much. Psychiatrist was trainee, not usual one.Given prescriptjon for another month ADs. If no improvement might change them so will see her inonths time.Trainee psychologist Friday. DH same.
Take care all and wishing you all a peaceful night. X

Dear BD's followed your days and supportive thoughts, still cant speak but love to all ..x

Sweetpeasue no reason to feel ashamed at all for talking about how you feel. Your going through a lot both physically and mentally. Fingers crossed that the ADS will soon help more and your mood lifts. But if they don't you'll be able to try something different. Don't give up hope of the pain easing either but maybe try as Scaredycat said to adjust for now but with hope for the future. I know it's easier said than done, but acceptance might bring some peace of mind.
I've just read about polymyalgia. It does sound a possibility. I read that it's treated with steroids.
Hope your husband gets something soon to help
xx.

HVDY so glad your legs were a bit better today. Enjoy baby tomorrow.
Missed your post yesterday
I'm glad SiL has reported the care home. I'm surprised it hasn't already been reported. Care homes are do expensive. Shocking.!
I too when I'm feeling ill or down think tomorrow is another day. Or I think of the song from Annie- The Sun'll Come Out Tomorrow. x

Doodle I hate sorting the suitcases out after a holiday. I'm sure you're glad it's done.
I'm glad you husbands leg looks better but yes, I would get it checked to be on the safe side.
My house is very neglected with this heat. It's not getting the usual tidying, but kitchen and bathroom always done. I dont see the point in worrying about it. I shall give it a good clean next week as my son arrives on 2nd October. 🙂. But thankfully its due to get colder.
I take vitamin D as its supposed to help tiredness and pains. Most people with M E. are advised to take it. I only take it every other day, as I think too much gives me palpitations. (not a common side effect) My daughter has it on prescription.
I hope you have another good sleep tonight. x

Hello to Whiff EllieAnne and anyone else I haven't mentioned. Thinking of you Wyllow3 sending hugs.
Wishing you all a peaceful night xx

nadateturbe when I had my first mammogram at 50 the radiographer asked if I take calcium and vitamin D tablet I said no. She said it's a must for anyone over 40 because of osteoporosis. So since then a combined calcium,vit D &K tablet everyday. Vit K helps with your blood. You need to take calcium and vitamin D together can't remember which way it is but you either need calcium to absorb vit D or the other way round. I don't eat red meat so take B12. Blood test last year showed my folic acid was low and had a 3 month course of them from GP . So since then take 1 a day plus , a cod liver oil and a vit C tablet everyday. Must be working as my last blood test showed everything was fine. I always have a fasting cholesterol test as it gives more accurate results .

Thank you for all your kind comments. But I have lived with pain my whole life so it's just part of me. When I got worse and the limb jerks started my husband was brilliant it didn't phase him he just said we alter our way to suit what you can do and be a normal family. He then say I always knew you where damaged goods he was very cheeky my darling man. My family just supported us as always. As my mother in law was widowed she helped out. Not through the goodness of her heart but because she was lonely. But once our daughter said she would take her brother to and from school once she started high school my mother in law never visited again.

My in laws where not nice people . My father in law told me I was defective this was pre 1988. They looked after my husband but never gave him any love or attention. But he got it from my family.

I don't know how you all cope with your physical pain . I am used to it I was born with it. But for you to go from being pain occasionally to pain all the time is harder . You not only have the pain to cope with but believe it or not you grieve for the person you where . I have already written here about how there are different types of grief my own theory. You cope with your pain but you lose who you used to be. I know how hard it is not to beable too do things you used to and how frustrating and angry it can be. A year ago I could pull a plug out of a socket can't anymore it makes me mad. But had to accept it.

Accepting our limitations is very hard also very annoying but you have to find ways to cope with your pain how to do things differently. Hopefully this might make you smile. I have a mug of cranberry juice with my dinner. When they started using the push down opening I couldn't do it so thought hit with the handle of a dinner knife. Result cranberry juice over me and kitchen floor. So use scissors to cut off the end after I have levered the corner up using a dinner knife. I can't use one to cut food but they come in handy for other things. And decant the juice into a jug.

Our bodies are amazing but also very flustrating as all hell. My pain is in my DNA it's part of my HPX. But for you your physical pain has a knock on effect on your mental health. As I believe they to go hand in hand. Pain whether it's the same all the time or comes and goes or you have what I call pain flares where it gets worse. It makes your ability to cope harder. And those who have loved ones going through pain both physical and mental it can make you feel helpless to help them. I know I would have gladly take my husband's pain if I could have. To see the fit active healthy man he was to the man with terminal cancer just wasn't fair. But life is not fair. Only I know how much he suffered as he never wanted anyone to know especially the children what he went through those last few months of his life. But we do things we do for love. But you must love yourself as well it's only my theory without self love it makes it harder to cope with your body. It's not selfish to love yourself but healthy to love yourself . Again my own theory. Shows how much time I have to think of these things 🤷.

Part of loving your self is doing things that make you happy can be anything . We all need a bit of me time. And like I said it's not selfish but a necessity as it helps you cope with your own health problems and those of loved ones.

Wyllow glad you keep popping in to let us know you are still fighting .

To all of you remember you are all amazing and yes you are. Well I think you are. 💖

Whiff thank you for your advice about supplements. I assume if I take lots of yoghurt I am getting the calcium I need but I'll check.. Will look at B12. Good of you to take the time. x
You husband was such a wonderful caring man who obviously loved you so much, and you him. Strange, considering his unlovable parents. He was the perfect husband for you. You must miss him so much. Life is very unfair at times.
You say such wise things about acceptance and self love. Self love is very important. Something I am just realising.
Your sharing of your experience of coping with your health and pain is very helpful to others. I hope today is good for you. xx

HVDY- hope you,ve had a lovely day with the baby- she must have grown a lot already.
Our DiL has to have a big operation soon which is a huge step for her to take. She has lots of family and friends around her so will get a lot of support. Just so feel for her with what she is having done.
Nice to see your friend- friends and cake go well together.
Doodle- hope you husband gets on well tomorrow and his leg gets full marks- sounds like you have done a great job.
Glad you had such a lovely sleep - hope last night was just as good. Unpacking always wears me out more than packing.
My DiL will have a lot of support and love thank goodness.
Nadateturbe- oh you have a visit from your son to look forward to- so pleased for you. The temperature should be more comfortable by then so you can enjoy it.
Whiff - yet another lovely post. Your husband sounds the nicest person and he obviously had a great sense of humour- what a lovely partnership it was.
Wyllow- hope you,ve managed ok today and thanks for dropping in to keep in touch. Xxxxx
Take care allxx

Whiff You have insight (as Doodle says) in so much of how I feel about the pain. Just thankyou for understanding. I wish I could write more but I'm afraid of posting as I'm ultra self-conscious about how I sound. I trust all BDs to pass over my inadequacy but so afraid of being judged by others who won't understand. I'm so sorry you lost your lovely man, it must be heartbreaking for you. I'm also so pleased you have made such good friends and have managed to carry on. You have some wise words thankyou. x

Difficult to say what I want to for everyone - youve all become real friends. Your posts mean such a lot so thankyou.
Ive actually had a much better day with (shh) no pain to speak of. Couldn't face the restart of book group but had a run out to shops with DH. His shoulders, arms and hips still painful and myself limping and v slow but we coped. Not so low today. Went back to the top I started knitting. Kept pulling out and redoing it over and over. Air was blue! Nothing I do seems right but I accept it is what it is for now. Intrusive thoughts of Drs cover-up torments daily but trying to put them aside.
Wishing you all some peace and a restful night in mind and body. Wyllow We care. Sending gentle hugs. x

Wish I could answer all individually.
Scaredycat Such a lovely post to me thankyou. Hoping you are ok.
Nadateturbe Thankyou too. I know it takes energy from you to write to all.
HVDY Hoping your legs are not so nad6now its cooler. Baby must be smiling now.
Doodle Hoping your DHs leg is improving and your wrist is feeling more sensation in it. If DH has Polymyalgia, pain is relieved fairly quickly with Prednisone (I took it for 10mths when I had it). Can be different for everyone. Just have to wait for Blood results. Thought it might have been the Fibromygia as his pains more diffuse and foot swollen. Just have to wait and see.
CandyEllieAnne Thankyou and hoping you are both ok.

Doodle Glad your husband's legs seem to be going on ok, and I hope the GP appointment on Friday goes well.

Nadateturbe You must be looking forward to seeing your son soon. The weather will be better by then (I don't like the heat).

Whiff Your husband sounds like a very caring and lovely man, despite the way his parents were. No wonder you miss him. You're a very wise and courageous person.

SweetpeaSue Glad you haven't had any pain today - hope tomorrow is the same for you. Do post a photo of your knitting when it's all finished. It's a baby's jacket, isn't it?

Wyllow3 As you always say, KOKO. Hope you'll keep letting us know how you are.

We had a lovely day with baby, from 11am. She's been smiling for a while now, but now she coos and is really interested in everything that's going on. We took her in the pram just around the block and to the local shop. Met a couple of neighbours (and showed her off). DIL came at 4, Son2 at 5, then they all went at 6.

My legs are horrible again today (it's been warm here). DH went to Asda (1 mile away) at 7, car broke down, so Green Flag went out to him at 9. They've had to ask for a lorry to put the car on because it's automatic . MY car, however, passed the MOT yesterday, so we're ok. Don't know what time DH will get home............. Hope ALL BDers have a restful night x