Black Dog 18

EllieAnne I'm pleased you went out yesterday with your son and grandson. Do you and your husband manage to put on a happy front when you're with family? That must be difficult. Saturday night tv is always poor. I do a lot of online games and quizzes, and I also look at things on YouTube or listen to music through the headphones, whilst my husband looks at television programmes I don't like.

Whiff After suffering so much hardship and poor health all your life, I really think it's disgusting that you're having to go to a tribunal to get PIP. There are people with less to cope with than you (I'm one of them) who get it. Having said that, a woman from PIP rang me the other day and asked me a lot of questions. When I said I don't need help with toileting, she said I might not be able to have PIP any more - I've been on the standard rate for 20 months - and that I'll get a letter in 2 weeks to tell me whether I'm still eligible! I hope your application goes well, you deserve to get the higher rate.

Still read everyday and sorry some of you are struggling especially Wyllow. It's not just physical pain you are dealing with but mental as well. Think I have said before both go hand in hand which I didn't realise until I had my diagnosis last year. I didn't realise I had anxiety just thought I was weird. But talking to others with HPX and the way I have to do things and how I feel if plans change and how I feel is due to anxiety. This has happened my whole life I am 65. Having my diagnosis last year finally understand why my body has done and does to this day makes sense. Just wish my husband had lived to share the news with me. Without him and his attitude when my health got worse in 1988 I couldn't do the things I make myself do now. He always knew from the start when I was 16 and he was 18 I had constant pain in my legs and fell a lot. When I got worse he just said we will alter our life to suit what you can do and be a normal family. Then the cheeky sod said I always knew you where damaged goods when I asked you out. He's father before I got worse had called me defective but at least he did it to my face. My in laws where vile people but no matter what they did or said to us my husband never gave up on them. He didn't like them but loved them because they where his parents. I hated the pair of them from the start but even after we married still visited every Sunday if they started we would walk out but be back the next week. His dad died ironically a few months after my health got worse. But his mom out lived him by 11 years. But because of him I still visited his mom every week and was her emergency contact. People asked me why I bothered but she was my mother in law and children's nan. I was brought up in a large extended family who gave my husband the family he needed and because of being brought up with strong sense of family I couldn't turn my back on her . It would have been cruel. Well that's how I saw things.

Got my PIP tribunal on Tuesday and it's making me feel sick. Spoke to my solicitor on Friday and she said they will concentrate on how I was in July 2022. There will be a judge,doctor and someone who deals with disability. PIP had my completed forms in April 2022. Apparently the tribunal is only allowed to last a hour and will centre on rules of law. What has disability got to do with law.

They will want to know is in July last year was I better,same or worse than when my daughter filled in the forms in April . I was born with a rare hereditary neurological condition which is in my DNA as it's a gene mutation plus found out in 2020 born with hole in my heart so have PAF as well. There is no getting better . As many of you know PIP do not see you in person until tribunal. And the time it takes of course people's health gets worse. Have been fighting for 35 years for disability benefits. CAB and Age UK refused to help me with the forms because they had never heard of it. Unfortunately I didn't know about the Brain Charity until after the forms went in. But it's thanks to them I am going to tribunal and a lovely woman who I met on Monday is going with me. But not getting my hopes up. But have already decided not to give up. If they refuse me I will reapply but some one from the Brain Charity will fill the forms in for me . But if course they wouldn't count from when I first applied in April 2022 so no back pay.

So this is me me post but I am worried sick about Tuesday . Take care everyone.

Lack of continuity I meant

Still struggling too much to post about me I will as soon as I can but sending love and strength and have read BD days (and nights!) xx

There is a feedback form on their website so I’ve explained that the lack of makes it difficult to build up a relationship.
If they look back at the messages they will see the different styles and hopefully understand.
We went out for lunch today with son 2 and gs. It was dh birthday through the week. It went ok helped by a large glass of wine . managed to eat most of it. Only had main course. Dh had soup main and pudd. But it’s been a long day since.
Telly has been awful tonight.
Still thinking of you willow and hoping you are feeling better.

EllieAnne Have you tried counselling? It's possible to self-refer, online.

Doodle Hope you have a lovely meal (and dessert). We're going out for afternoon tea tomorrow, so I haven't had much to eat today.

Hope all other BDers are having a relaxing evening x

EllieAnne Doodle is right. Don't give up. The Samaritans would want to know how you feel.
Short post, my texting arm is tired. Thinking of you all.xx

Ellie Anne I wish you would email the Samaritans back and write what you have written here. So often people’s attitudes have a big impact on others. Perhaps the person who wrote the recent email was having an off day. Please try again. Give them another chance but tell them how they’ve affected you.
Hoping this weekend is ok for you and you get out with some friends,
Sweetpeasue I’m pleased you have accepted some sessions with the trainee psychologist (I’m sure they must be closely supervised)
How do you usually order your medication? Is it on paper or online? Perhaps it will be available for you to order in three weeks time. Not much point in him saying it if he’s not going to do it. Hope it works. Glad you felt a little better as the day went on.
nadateturbe DH is on some very strong meds that aren’t available locally. We can have them deliver by post if DH doesn’t have an appointment at the hospital for follow up.
Glad the Voltarol helps.
The festival sounds good. I Hope you managed to go and enjoyed it.
HVDY so lovely you get on with your DIL. Who knows, they may get together in time but at the moment if it works that’s great. Hope the older girl likes having a baby sister around. Difficult age 13.
Our younger granddaughter always had a special smile for DH too. He was certainly her favourite when younger.
That’s not good about your brother. It’s a long wait I hope it’s not causing him too much pain.
We are out for dinner again tonight. Won’t be doing my diet any good at all.
Scaredycat how’s your walking now? Are you managing a reasonable distance. DH and I haven’t had a walk for ages. Really bad, must do something about that.
Wyllow I wish we could lift your spirits but we are thinking of you.
Also thinking of Whiff Nanny and Candy

So after having a really nice caring email from the Samaritans today I got a very short and unhelpful one. This is what happens when different people are dealing with you and it just doesn’t work. I won’t be contacting them again.

I'm sure you deserve to be lazy HVDY.🙂

ScaredyCat DIL is a lovely girl, sends me photos most days of baby. I wish she and Son2 lived together, but hopefully that might change. The ribbons, etc., on doors sounds pretty, but oh so sad for someone young to die.

Doodle DIL's 13 year old didn't come, she had a friend at the house to spend time with (my Son2 was working from there, so she wasn't alone). Baby was fascinated by DH and couldn't stop smiling at him. We jokingly said baby was laughing at his long hair . Glad the hospital appointments have finished for a while, and that you managed to get a GP appointment. My brother's having problems with his prosthetic leg, so can only go to the limb centre at the hospital. They gave him the "earliest" appointment, which is in October!

SweetpeaSue The pain you get sounds awful. Glad you managed to get the Oramorph ok. The racing moment sounds more likely to be anxiety than the effects of ADs. Hope your appointments help.

nadateturbe Baby is almost 13lbs now, and loves her bottles. Hope the weather stays decent for the festival.

Wyllow3 Hope you're able to speak to your sister and that you're still getting on ok with the counselling. Be kind to yourself.

How's everyone's day going? I changed the bed, did the washing and hung it out, and have just been relaxing (being lazy). It's a grey and cool day here. Hope LL BDers are ok x

Wyllow3 how are you feeling today?

HVDYGosh, can't believe baby is nine weeks already. I'm sure you love those times cuddling her.
I think most of us take longer to do things, but you manage incredibly well I think. Especially with painful legs. Sometimes as Doodle says, doing something we enjoy does help us forget or cope with our pain for a while.
I do think your husbands cough needs looked at having it so long. I can't believe how long you all have to wait for appointments.
And yes, thank you, we've bought some voltarol, pain has eased atm.
Scaredycat what a lovely idea for the funeral of the young lady but very sad too.
You've maybe answered this already, if so, apologies, but would a pacemaker not help tge AF?
Doodle Goodness, I've never heard of anyone having to travel to a hospital to get medication. I hope you don't have to do the journey too often. And I hope you remember to ring the hospital, you would need a to-do list.
We have pillows that barely fit too. I often wonder why pillowcases arent made bigger.
I hadn't heard of bungalow knees, interesting, must google.
Sweetpeasue Your husband got through in 5 minutes, wonderful. So glad you got your Oramorph. Although I don't understand "no prescription with it". I order online, and anything on repeat is listed, and I just tick the box. The attack of pain you woke with sounds horrible and frightening. So awful to have to cope with. I hope the appointments help in some way next week. xx
It's sunny here today. There's a local music and mind festival, and we may try going. Yoga, meditation to join in, poetry readings, and more and lots of music at different venues. Fingers crossed I keep feeling OK.
Hope the day is kind to everyone. x

Just popping on to say Wyllow3 sending love and hugs . It will get better, we are all thinking of you.xx

“But this is one place where it’s ok not to be ok” very true Ellie Anne. Followed your days BD’s and love to you all things are the same. xx

HVDY Your little baby GD sounds so adorable. Glad you are getting to cuddle and hold her often. I loved the way my GD held my eyes when she had her bottle. I couldn't see her v often( not living close) but those times I remember.
Nadateturbe Its awful youve had extra pain lately. I def think Amitriptyline is helpful. I hope the pain has been better today. I know how it can drain you mentally aswell as physically. It must get you down.
Scaredycat My husband did call Drs for me and had no trouble. He joined queue and got through within 5mins! The little confidence I had has nosedived further. I'm sorry the AF is still a constant nuisance. Is it better when you have distractions? What a surprise you had on your walk yesterday- an unusual though lovely idea.
EllieAnne You are a good friend to others and I'm sure you will be appreciated. I understand the 'part of me believes and part of me doesn't'. I feel the same and it can alternate. It's v hard indeed.
Doodle I woke early and had the most debilitating attack of pain through bladder. So fierce and DH tries to get me to breathe properly as I end up panting. But after 20 mins, more bearable and Oramorph and Co-codamol helps so much. Just deep ache on n off after that so better day. I decided to have some sessions with young trainee psychologist so see her next week and MH nurse week after. ADs are ok I think. Had a weird 'racing, dizzy' hour or so but not sure if ADs. So glad the stepper is helping knees.
Wyllow Ive been thinking of you and just sending you love and hoping you can pick up some strength. We all v much care about you. You have been so active in campaigning for others in the past. Now you are fighting for yourself and you are worth it. Wishing you trouble free sleep.

I have felt a bit brighter today. Spoke to GP and he said he would put Oramorph on repeat every 3 weeks. Picked it up but no prescription with it so not sure if he's been over-ruled about it. Anyway, enough for another 3wks.

Hoping everyone has a restful night.

HVDY did you have a lovely time with the baby? So cuddly when they’re tiny. Nice your DIL is happy to come and meet up with you like that. Did her other daughter come too?
Could it be you didn’t notice your burning legs because you had that lovely baby to play with 😊. No, hospital free day today. Nothing much next week either thank goodness.
Ellie Anne it’s ok to have doubts about your faith. Look at doubting Thomas. Also Mother Theresa had times when she struggled too. You are not the only one who hides how they really feel from friends or family. We can only share our thoughts with those closest to us and sometimes not with them either. Hope you had a nice time with your friend. Kind of you to help out with shopping for your other friend.
nadaterturbe yes I did get through to the surgery. We have a telephone appointment at the end of September. Good job it’s not urgent. Yes. Controlled drugs can’t be on repeat as your blood needs to be monitored regularly to check how they are affecting your organs. Also so people don’t arbouse them. DH has some drugs he can’t get from the local pharmacy and we have to go to one of the London hospitals to get them.
Like you, so much I don’t understand. I find changing the bed exhausting. I do it really slowly. We have some big pillows and getting the pillowcases on them is a bit of a battle but I pummel them into submission 🤣
Scaredycat perhaps you have relaxed with your AF as it’s been with you a long time now and got used to it. I certainly have Bungalow knees and must continue with the stepper. I do think it’s helping already. I only do 5 with each leg and feel a bit tired after doing it but I am managing to do that several times a day. What a lovely scene you describe for the young girls funeral. Must have been appreciated by her family.
Are you meeting up with any of your girls this weekend?
Sweetpeasue how’s the pain today? When is your next MH meeting? How are you coping with the ADs, are they upsetting you?
Wyllow we miss your posts but understand when you don’t feel like writing much. Just to let you know we miss you and are here with hands to hold on to.

HVDY- Your AA yesterday sounded lovely- a really smiley moment. You are right something like that does make you feel grateful .
Hope your GP will do something about yourDH cough - earlier this year my DH had the same and the GP fast tracked him after seeing him.
Do hope your SiL is a bit more settled now- what a scary time it has been for her. Hope your Brother can visit her a bit easier now.
So glad for you that you have such a close relationship with your DiL and her new baby- precious times.
Nadateturbe- I,m ok thanks and hope you are too,glad your Palps have gone now.
In a weird way I am getting used to having AF constantly. It makes me extremely tired but at least I don’t worry all the time about getting an attack. It’s there all the time!!! Silver Linings eh.
I like Bramble jelly too .Lots of berries this year but like you my first foray into jam making was also my last!!!
Doodle- the stepper sounds a good idea- it should help strengthen the muscles around your knees . I think you made the right decision over your wrist- although it seems like a long time I think you have done really well and made good progress. It’s not easy healing when we get older is it.There is a condition called Bungalow Knees- it’s due to having a single story home and not using stairs much. I saw it on the internet.

Yesterday when out walking I went down a familiar lane and almost every tree,hedges ,fence and front doors of the houses had lovely ribbons and rosettes in shades of pink to purple.
It was the funeral day of a lovely young lady who lived there and sadly died.It felt like it was touched by angels. I think you would have liked it too.
SweetPeaSue- glad your DH feels a bit better- I,m sure he,ll stand your corner well with the receptionist at the surgery.
Anxiety does rob you of confidence in a big way doesn’t it. The
ADs should help you feel like your old self.they have done that for me and hopefully they will for you too.
Wyllow- I wish I could shine a light for you in that dark place.
Sending you love and hugs and hoping you can feel the affection we all have for you.
I do hope you manage to eat something- I know it feels horrible to even swallow sometimes but the food still nourishes you. Please take care of yourself xx
EllieAnne- you have good friends who must love and appreciate your kindness. It is hard to feel like you are pretending a lot of the time but just be yourself you are a nice person.
Love to allxxxxx

EllieAnne Hope you met your friend ok. Can you talk to her about any problems? Nice of you to help your other friend. I suppose none of us know how another person is, what their lives are like, etc. We go about our day, our lives, without really knowing how others are. That's what's good about BD - we don't have to pretend that things are ok, and we are all here for each other.

nadateturbe I have to do things when I *have to*(and everything I do takes longer and requires a lot more effort than it did 2 years ago). I have to do less the following day, though. Baby is almost 13lbs now, and is almost 9 weeks, contented and happy. Gave her her bottle, then we went for a late pub lunch, she slept in the pram for a couple of hours. Had a walk round the park but then it rained, so we went back to ours and then had a cuddle before she went . My legs have been burning all day, but I can somehow manage to ignore it whilst I'm busy.

Wyllow How are you feeling today?
SweetpeaSue How's your day been?
Doodle How are you and your DH? Any hospital appointments today?

ALL BDers - hope you have a relaxing evening x

HVDY Gosh you are so active, in spite of your legs!Your afternoon sounded lovely. I hope you enjoyed it. You have a good relationship with DiL.
I used gel, magnesium spray, cold pack, painkillers, but I think the pain just went in its own time. I suffer from pain a lot of the time. Its pot luck where. Some folk just can't tolerate amitriptyline, I usually have a half pill, but I was pretty desperate.
Doodle don't you just hate big jobs like changing sheets and duvets? We used to do all the weekend cleaning and changing beds in one day. How time changes things.
Did you get through to the surgery?
I didn't understand about the Oramorph. Didn't realise certain things could not be ordered on repeat.
Its not always easy to believe and trust, when life is difficult. But I find it easier to believe than not to believe. Even though there are many things I don't understand. Like you EllieAnne I would find life pretty pointless without my belief. And I do believe God has answered prayer for me.
It must be hard not feeling good inside and having to put on a face when you're out with people. It's good of you to help your friend. I hope you enjoyed meeting your other friend. Have you something to do at the weekend?
Did your husband get to speak to the GP Sweetpeasue? I hope you got the Oramorph. I didn't realise you couldn't get it on repeat. How are you?
How are you today Wyllow3? Are you feeling any better. You sounded so low. Perhaps you have rung your sister?
Hello to everyone else, hope you are all having a good day.

Doodle thank you for sharing about your faith. I’m the same at the moment. Part of me believes and part of me doesn’t but I’m holding on. If I lost that there really would be no point in going on.
I’m meeting a friend in a bit and then doing shopping for another friend who is unwell. So people see what I’m doing and think I’m fine. But I’m not.
But this is one place where it’s ok not to be ok.
Wyllow you sound so low . I wish I could help.
Sending caring thoughts.

Wyllow You sound so very low. Do whatever you need to do to look after yourself. We on BD care and wish you well.

EllieAnne, SweetpeaSue, Doodle, Whiff, ScaredyCat, nadateturbe, Candy6, and all others - hope your day goes well.

It's a sunny day here. Hoovered, mopped, polished, cleaned the kitchen, done the washing. DIL here at about 11, with baby , so we'll go out for lunch and then walk round the park and feed the ducks. Love to all x

Wyllow3 that should read, You are not alone.x

Wyllow3 we are all with you in that dark place holding your hand. You not alone, and you will get through. xx

Another warm day here. Changed sheets on bed this morning and was dripping by the time I’d finished. Coffe and cake with friend this afternoon which was nice.
HVDY good to hear your SIL seems happier. That will be good for your brother too. I agree those frames seem so flimsy. The walker will be much better,
Like you, I always do the talking for DH (whether he wants me to or not 🤣) Hope you can get something done about your DHs cough.
I will be phoning surgery too. They sent DH a text telling him they want him to take meds for cholesterol. He’s never had high cholesterol in his life and will all the meds he’s on he’s not keen to take any more. Also got to phone hospital as they entered some incorrect details in his medical record.
nadateturbe I can understand about losing faith. Some people think it’s easy to believe but it’s not. To place trust in someone you’ve never seen and just accept what to many is a complete mystery. It’s hard to have faith and I am not a good person but I believe more than I don’t believe if you see what I mean.
Yes being in an apartment is not good for knees. We lived in a bungalow before and that wasn’t good either. Since I’ve retired and not working I don’t do stairs at all and it’s certainly having an effect.
Sweetpeasue when your confidence is knocked it’s hard to be assertive. I can do it mainly because I’m fighting for DH. Then, I fire with both barrels so to speak. Less so on my own behalf.
Yes keep doing the stairs. I can’t believe how now, I cannot do a big step unless I have something to hang on to. My knees can’t support my weight. The stepper is helping.
You are right, they are unlikely to put Oromorph on repeat. DH has the same problem with some of his meds,
Dear Wyllow it’s not like you to sound so lost. Despite all you’ve been through you’ve always had a good grasp of what you needed to do for yourself. I feel things have really got you down. I realise you are in a bad place but you will get through. I promise. There are times when all of us feel there isn’t any light in front of us but it will pass. In the mean time you have to battle on. Just know that we are here and thinking of you and sending love and hugs.