Black Dog 17

Wyllow3 I can identify with that, but can't offer any advice, sadly. I hope today will be better for you. I find that if I've got definite plans (seeing friends, family, or the day centre people like today), I'm better. Left to my own devices and with no actual plans, I'll do nothing and go nowhere. That's not good for me. I don't feel like going today, but am sitting here with hair dye on my roots so I will go.

Candy6 I had some washing on the clothes horse, upstairs, the other day. It dries in a day. I'd rather have the rain than the heat, though.

Hope all BDers manage to have a decent day x

Hvdy we have rain too. I don’t mind it but I loved the hot weather.
I like routine too. To know what I am doing every day, it does nt work in the summer, enjoy your day centre.
Today I am going walking in the rain changing beds and phoning dentist. They cancelled my appointment by text so I need to rearrange. If they’d phoned it could have been done in one.
I’m no good on the phone. Texts and messenger suit me better.
Oh well time to get up and start the day.

EllieAnne Hope your day goes well. I've just been looking at a website called The depression project, which someone mentioned on Facebook. It looks interesting. Hope your day goes well.

whiff I see other thread has got her PIP date at last. Warm waves support heading your way whiff.

Right about getting out, HVDY i hope you manage a little one after your hair is done.
I was vomiting in the night v strange colour, triggered research and phone GP but couldn’t get an appointment so sis stepped in with some temporary advice.
Cause …probably anti inflammatory meds so it’s a hobsons choice but have a plan.

Wobbly but here at gym for mini swim as getting out a priority. And nice cleaner at work at home.

So much is happening in your lives but I love the fact you all face whatever life throws and you and get on with it. No matter how bad you are feeling mentally and physically. A very supportive group and I am sure you help others that only read but feel they can't post.

Well yesterday had my PIP tribunal date come 29th August. The solicitor the Brain Charity got me has done all she can paperwork wise but speaking to her the day before and no doubt she will give me some tips. Phoned the Brain Charity to see if anyone can go with me . Also asked a friend in case she can go incase no one available at the Brain Charity. My daughter is working on that day so don't want to ask her .

Must admit I felt stressed out and set my PAF off just my heart racing and breathing heavily but no chest pain. I just had to calm down and and I knew my heart would settle down which it did. But the lovely man who delivers my tablets saw me in tears but his very kind and made me laugh.

Also had UC health assessment video appointment but called them and asked for a face to face assessment. It was no problem and they will send me a date.

After my experience at the hands of the PIP phone assessor I don't trust phone or video assessments. I look normal until I move . Then you can tell there's something wrong with me.
That's why after my interview at the job centre with my caseworker she said I'm not having you struggling in again phone appointments from now on.

Why can't the PIP people treat you like a person and not a name . When the UC people are so kind.

But there are thousands like me having to fight for disability benefits. I have been fighting for 35 years.

I know I will probably cry at the tribunal but it will be because of fear ,anxiety and anger at the way I have been treated for 35 years.

But I know many of you will have suffered at the hands of benefits people.

I don't care if people come to this country and work pay their taxes and NI . Then they are entitled to help with health matters . What annoys me is people come illegally yes their living conditions aren't always nice but they get benefits don't have to worry about bills .

When I was on hold for over a hour last year to get a copy of the assessors report for my solicitor. A recorded message said Ukraine nationals don't worry your PIP payments won't stop. I know the war is awful so many people killed and hurt but how can they get PIP.

My husband was terminal in 2003 and we where told to claim DLA and carers allowance. He had a query on the form and the woman asked how long he had been given 4 months to 2 years. She said no point in filling them in as he was given years and put the phone down on him. Our McMillan nurse went mad and filled in the forms. My husband didn't live 4 months. My mom lived with me the last 18 months of her life she had cancer and dementia I was allowed 6 months carers allowance as they told me my mom would get better. 🤬. My mom died long before her body and the dementia made her violent. But it wasn't my mom . And it was out of fear she didn't know who she was,where or who I was. I was her sole carer and proud of the fact my mom hadn't got a sore on her body when she became bedridden. But I got a pressure mattress and inflatable booties from the district nurses . I couldn't put my mom in a home. She died in 2017.

I know many of you have your own horror stories of trying to get help not just for benefits. But those of you who have suffered at the hands of surgeons and other healthcare professionals. But as we know they close ranks and many of you want answers and sadly you may never get them . Which isn't fair.

But no matter what you inspire not just me but countless others to keep fighting. And I thank you all very much. I know some of you don't think you are strong but take it from me you are . Otherwise you wouldn't share you lives with everyone else. ❤️

Candy6- since starting the ADs I have found it a bit easier to sit and just “be” sometimes. Physically I can’t do so much anyway but manage better to take the rest I need.
I think it’s great that you swim but even better that you have chatty swimming friends!
My DH is like yours- says he,ll worry about things if they happen. Whatifferies never enter his head.
Yes the weather is pants isn’t it - the sun just lifts your spirits. Hope it comes out for you if you are at the caravan this weekend.
EllieAnne- Good to hear that you have nice friends- are they aware of your home situation? Keeping busy obviously helps you but home is where you should be able to feel content sometimes to do nothing . I echo what others have said you are a kind caring Mum and friend and deserve better.
Wyllow- wish I could pull you out of that nasty black hole.
What you say about your feelings of isolation are so touching.
The tiredness of CFS affects so much in your life . You are well loved by your family and all of us here but I understand the need for a GC hug or the physical company of family and friends.
There is a point it’s just that right now it’s so very hard for you to see one- your family,friends,Gym,Quakers - the call of the High Peak. I hope you have a better day today. A big old hug coming your way
SweetPeaSue- yes it’s so hard when our AC have problems and they know you are there for them but they just need to sort themselves out as we did at their age. Don’t be so hard on yourself you are a great Mum and we all parent differently .
So glad you went to see your Son- how happy that must have made them and your GS. As I said the other day sometimes the things we are reluctant to do turn out to be just what we needed.
Hope the MH nurse can help you next week and you can but try the meds if you feel up to it.
Doodle- I didn’t realise your DH may have to have surgery. So sensible to wait for the Consultants appt. It’s a long while to wait but gives you time to weigh up the pros and cons. So disappointing not to get the consultant though. My cardiology appt has been put back to October!!
Hope you enjoy your lunch today - is it a special lunch?
It’s dull and drizzly here again so an umbrella walk this afternoon.
HVDY- how’s Baby doing?
That outside feeling is one we have all felt or feel at some point isn’t it.You are right it’s as though you don’t belong and hiding it is so tiring.
I feel for you trying to get your Broadband sorted. Where are all the real people to help us - waiting on the phone is soo frustrating but not as bad as waiting for a call back. I just can’t deal with uncertainty well at all.
How are your legs today? Hope you can get out and about a bit more comfortably.
Nadaturbe- thank you for your prayers - sending warm thoughts. Take care of yourself
Love to all

Have a good umbrella walk Scaredycat! Thoughtful post as ever for all.

Yes Whiff long time coming and yes def take someone with you!

Ellie Anne totally with you about routine helping.
I hope it isn’t too wet!

Thanks Wyllow3 Candy and HVDY.
Thinking of you all on BD.xx

I did a 20 mins swim and sauna and glad I heave-ho'ed. Sister reckoned me being sick was definitely the Naproxin and not to be on it more than a month.
I'm going to ask the herbalist of any natural anti-inflammatories.

Talking to a lady I've know for years at the gym, she said she always gets out once every day, even if just to supermarket cafe. I think that would help me. I need to keep moving just enough and just having to get dressed and little walk and bit of life around me mostly helps instead of falling into sludge..

Whiff It seems ridiculous and very wrong that you're having to fight to (possibly) get PIP. You've had such a lot to cope with, how can they not award you it? I know of a 23-year-old (daughter of friend of a friend) who has never been to work, gets the higher rate of PIP, because of anxiety - though she goes out for meals with her boyfriend, and has been on several foreign holidays.

ScaredyCat Baby is doing well, thanks (she's 4 weeks old now). We're going to see her and DIL tomorrow and go out for lunch. Son2 will be there (he spends 1/2 of the week with them, the other 1/2 at his own place). My legs are just the same, but if I'm with other people or out somewhere, I'm distracted enough to not notice a lot. How are you? It seems a long time to wait to see the Cardiologist. Is that because of the various strikes?

Wyllow3 Glad you managed a swim. It's not a bad idea to think of herbal remedies. Hope that works out well for you.

Went to the day centre, had lasagne and salad, the fruit and ice cream, and it was a pleasant few hours, chatting and doing quizzes. I need to make more of an effort to do more on the other days of the week. How have other BDers been today? x

Wyllow our church is quite small but with a beautiful cross hanging in front of a lovely stained glass window. It has a lovely atmosphere and the people are friendly.
The nurse didn’t exactly suggest surgery but it is an option to treat DHs heart failure. At the moment his heart is in normal rhythm and fine. It could stay like that or it could go into catastrophic heart failure like before. Fortunately, technology wise we have plenty of equipment to monitor it with so now we know what to look out for we could act more quickly if there’s a next time. Even if offered DH might not opt for the operation as it comes with risks. We will wait and see what the consultant has to say.
I’m glad the meds are helping. Do you think the effect gets more beneficial over time?
Sorry you were so sick in the night. Hope it doesn’t happen again. Hope you can find an alternative that doesn’t upset you.
nadateturbe we’ve got BD covered. You pray for all at night and I pray for all in the morning. 😊 Don’t worry about replying to everyone and this applies to all on BD. If you don’t have the energy to write a lot just tell us how you are.
HVDY I wonder if those of us who have suffered/are suffering with depression or anxiety always feel apart from others because we live a lot of the time in our minds. Even with others we are worrying about things or thinking through things therefore a bit detached from what’s going on around us.
Any luck with the broadband today?
I’m glad you have the day centre to go to. The food sounds so nice. How often do you have to do your roots? I bet it looks nice when done.
Can’t believe your little one is four weeks old already. Amazing how time flies. Glad things have settled down for your son and looks like they’re working things out between them.
Candy there are people who don’t worry about things aren’t there. I wonder if women are more prone to worry than men.
Can’t remember if you’ve said before but how long have you had your caravan? Has it always been in the same place?
Ellie Anne it’s been warm today here even in the rain. We went for lunch with friends and it was raining when we went it but not when we came out. The air was lovely damp but warm. The place had huge hanging baskets of flowers and tubs. So many different colours and they all looked bright and fresh.
Sorry about the dentist. Is it just a checkup or were you having treatment?
Hope you had a good walk.
Whiff glad you’ve got your date for the tribunal. Hope someone can go with you to support you.
You so deserve to get it. I Hope this time it works for you.
It does seem unfair that others are getting help when you aren’t. Good thing to have face to face so they can see how you struggle,
Really awful some of the treatment you’ve had when trying to get help you deserve. Some people shouldn’t be in the so called “caring profession” .
Please let us know how you get on. Will be thinking of you.
Scaredycat I’m sure men don’t worry like women do.
I’m always full of whatifferies. I suppose we shouldn’t complain about the weather when there are so many places on fire but a bit more sun would be nice.
So your appointment has been put back too. Sorry about that. How is the AF? Is it still going on every day? The consultant DH is booked to see is a specialist in heart arrhythmia. Not sure what he’ll say but will wait and see.
Yes we did have a nice lunch thanks. Nothing special just meeting up with old friend of DH. Nice food and nice chat.
I had Gorgonzola Gnocchi for the first time. It was nice. Ice cream for pud.
Hope you didn’t get too wet on your umbrella walk. Have you met up with your DD or DGD recently? We’re going to se our DGDs tomorrow for the first time in a couple of months.
Sweetpeasue hope you’re ok. x

So sorry I can't reply to all of your kind,caring comments. I have read n reread your posts for so long but dont seem to be able to anywhere. I feel bad not being able to help. So many of you having troubles. Then just readDoodles post to Nadateturbe so posting this. Doodle I dont know how you manage to keep going, you must get so worried about your DH. Definitely waiting for consultant will be best for you. I wish everyone here could see the Drs quickly and there wasnt all these delays.

Feel like I'm wading through treacle. Keep getting so agitated and absolutely no patience with anything. Trying to put new curtains up today(deep pleat and lrge) with DH was the most terrible exhausting task. Just on verge of tears all the time. Not come in to moan. Just thankyou all for caring. Love to all and thankyou for prayers and kind words. x

Sweetpeasue glad you posted. I think we all care about each other and it’s good to know how someone is doing even if it’s not good. Just to hear from them rather than not.
You have helped many in your posts and have been supportive and kind to others so don’t say you haven’t helped.
You are going through a tough time at the moment. Hope the MH team can help. Please try and rest tonight you sound so tired. Sleep well all.

Doodle I love that you will be saying morning prayers for BD. I am OK, just get tired so quickly and unexpectedly and having to pace more than usual with all the difficultiesthat brings. But I am content (mostly) , I don't see the point in worrying about it. I could have worse problems. My son has booked to come in October. 🙂
I hope the consultants visit helps your husband make a decision, which is certainly not an easy one. Will be thinking of you.
Giving you a big hug Sweetpeasue.
Love to everyone else. Hoping your night is peaceful.xx

That’s really something to look forward to tomorrow HVDY. Also to hear that Son2 is spending half his time there. Remembering back to when he left, its seems a lot of healing has happened and you’ve had a lot to do with it.

I like small churches but Doodle. Although grand places can be beautiful small feels more intimate. Thank you fro the details of DH ’s heart condition - helps to understand very much why you want to speak tot he cardiologist. Also I’m very relieved to hear you have good monitoring equipment at home.

My meds - I’m on one main effective MH med after different ties over 20 years.

But unfortunately am also addicted to benzos

(Please Note, BD’s - this addiction is from long term constant use NOT occasional emergency diazepam use NOR ever anti-depressants)

from when they handed them out like sweeties on wards as inpatients. It’s those affecting my bowels seriously long term, but I have to have a much happier stable period to come off or reduce them.

So any other meds I take, like anti inflammatories affect a number of body functions sort of on top of the MH ones

So currently trying to balance everything with laxatives etc. Being so sick - got the balance wring? Stress added in? I’m waiting to see dietician and gastro.

Knowing about nadateturbe’s evening prayers and your morning ones is so lovely to picture.
Thank you both. I think of BD’s on and off in bits during the day sort of lodged in me!

^I think more men are better at “compartmentalising” concerns and some worries than women.
I think it’s because lots of us were brought up having to think of all the number of matters and kids that have to be kept going on the home front day by day.
It’s changing a bit, but my mum did all that kind of thinking, I did, and my DiL does!^

“I had Gorgonzola Gnocchi for the first time”. My goodness! What was that like? I have not idea what Gorgonzola tastes like, but it always sounded very impressive.

Sweetpeasue its fine to read -

It has to be that for all BD’s that its OK

I’m just glad you’ve come in and caught up.
And yes, the delays in seeing consultants are hard to bear atm - having to manage things longer than used to be - hugs.

nadateturbe I think of you and your wisdom in the difficult task of limiting what you can do - I have learnt from you. I am very, very glad your son has booked to come to look forward too!

Heck my spelling, I wish we could edit.

If I have been able to help in any small way, I am really glad Wyllow3. Your life is not easy. You have so much to deal with. I hope you manage to sleep well tonight.

Well I went for my walk in the rain but it wasn’t cold and I was among trees much of the time. But I haven’t seen anyone today except dh so am feeling quite lonely and low.
Didn’t phone dentist. Kept putting it off then forgot. I had crowns done last year privately but have never been pleased with them so he’s going to see what can be done. I’m worried about it because I hate saying I’m not pleased with it but I did pay quite a bit.
I have drunk too much again tonight. Can’t seem to stop. No will power. Had chocolate too.

Doodle I hope your husband's condition remains stable. I expect he's on medication for heart failure. My mum had that for many, many years and took tablets for it. Technology and procedures have come a long way since then, of course. I've had gnocchi before but never tried Gorgonzola. Does it have a really strong taste? I do my roots about every 4 weeks. My hair is mid-brown at the moment. Yes, son and DIL get on very well - I think she hoped they'd get married etc., but he won't - they knew each other for 3 years (through work) before they got together, but I think she thought she'd change him. Have a lovely time with your GDs today. How old are they?

SweetpeaSue You are going through a bad time, mentally. Be kind to yourself - have wine, chocolate, a bubble bath, whatever it takes to help you to relax.

nadateturbe I bet you're counting down the weeks until your son visits. Does he live far away? (sorry if you've said before). My husband is like you, never worries or gets bothered by things. He's so laid-back .

Wyllow I'm just pleased son and DIL have got an arrangement in place. They speak every day when he's not there, and they go out and have "family time" (she's got a 12-year-old) when he's there. Are Benzodiazepines something you'll always take, or could you be weaned off them? Hope you haven't had the vomiting again.

Ellie Anne If you aren't happy with the crowns, you must tell your dentist. As you say, they cost a lot. I keep wondering about composite bonding, I'd love to have lovely teeth. You've had too much to drink - how much is too much? The odd couple of glasses won't harm. Nor will the chocolate, so long as you're not having a huge bar every single day. I hope you can get out and see other people today.

Hope ALL BDers manage to have a decent day x

Wyllow- I think- like your Gym lady- that if you are able to get out sometime every day it would be of great benefit to you. The smallest of outings is a reason to get dressed and feel part of life - it so raises the spirits. So many simple pleasures to enjoy.
Meds can be so complicated sometimes can’t they. I hope the gastro and dietician can help you. Glad you have your Sis to consult too!
HVDY- Gosh 4 weeks old already- she,ll be smiling soon. Hope you,ve had a lovely lunch together today. Lovely to see the,little family getting on well.
Once again your day centre pulled out the stops - what a nice meal that was. The older I get the more I like Icecream🍨
Glad you can sometimes ignore the discomfort in your legs - it can’t be easy. Yes it’s a long time untilOctober for my Cardio appt - maybe the strikes is why it is delayed but I don’t know.
Doodle-Good that DH is seeing an arrhythmia specialist and that his HR remains steady. He really has been through the mill over the years.
My AF is still 24/7 - the longer it goes on though I have sort of got used to it a bit. At least I don’t live in fear of an attack as it’s there all the time!!!
Gorgonzola Gnocchi must be really cheesy - but delicious.
Hope you,ve had a nice day with your DGDs - it’s a while since you,ve seen them. Both DD and No 3 GD and No1 GD and the GGC live very close so we are lucky and see them pretty often.
All the others are much further away - would love everyone to be all around us - but we are lucky to have them all.
SweetPeaSue - Ah you are going through such a difficult time - I,m so sorry. Now your curtains are up you need to rest. Perhaps you and DH could take a drive to the sea and sit peacefully for a while. Maybe an Ice Cream?
You are not moaning just talking to your friends who are happy to listen and help if we can- we really care.
Nadaturbe- so happy for you that your Son will be coming in the Autumn- something to look forward to.
You have such a lovely air of calm about you.
EllieAnne- You too walk in the rain- I quite like it especially the smell when it’s been hot.
You must complain to your dentist it is such expensive treatment you should be able to feel confident with what you,ve had done.
Don’t beat yourself up about a couple of drinks and some chocs. It’s good for you to relax and enjoy nice things sometimes - you have much to contend with.
Wishing everyone a peaceful night

Its hard to 'call people out" like that Ellie Anne - go for it as soon as you pluck up courage.
Really matters in the long term. courage, mon ami....and chocs and wine are VERY OK.

HVDY Hope one day to at least reduce the diazepam substantially, but I will always feel they are a blessing to have on standby. they can cut into a downward spiral and give respite. But I wasn't really meds aware when they build up - we are talking a very very long time ago. I was going to have a go when the hit the fan with X.
Soddit. Needed them last night, due to various triggers the right was a bad one, and got little sleep, but not sick.

but HVDY this made me smile, "but I think she thought she'd change him".
Oh dear, story of various mistakes of my life......

Anyway Scaredycat I did take gym woman's advice and went to the supermarket for little shop and coffee today and thankfully collecting meds wasn't the usual 12 in the queue wait. In fact they will deliver in the future by arrangement each week as long as 48 hours have passed, and do it in mornings too!
(mind you, it can be impossible at times to get them on the phone but see how it goes)

I was glad to read that sometimes AF anxieties ease for you - I suppose the longer time goes on and it's OK, things recede just a little. Very glad to read that some of your rellies live close by - of course its DD you go off for a coffee with sometimes, isnt it?

did have a blip a couple of hours ago - finally transferred last 2 direct debits out of what was once "Our" joint account and closed it. and they wanted me to get him to sign it. Ha ha. Put them in the picture on that and was believed.

Wyllow3 Good job on sorting out the joint account and closing it. Did it feel like you'd closed the chapter of that part of your life? Nice to go out and have coffee. You'll know when the time is right to start reducing your meds.

How has everyone been today?

DH and I went to see DIL and baby (they're about 40 minutes away). Son was there, working from home. Went for a pub lunch, son met us there but just had a drink. Had a lot of cuddles, gave baby her bottle . Got a decent deal with the broadband/landline. Told Virgin Media I can't afford their new price, so they offered us the same package for £39 a month, £1 less than now.

Hope all BDers have a relaxing evening x

ScaredyCat You must be aware of your AF most of the time. Do you manage to sleep ok?

HVDY I'm really looking forward to the visit. Haven't seen him for 18 mths. He only lives near Preston. But I try not to pressure my children to visit. I prefer to see them when they want to come.
I'm not naturally laid back! Quite an anxious person, Was on valium in my twenties, for 2/3 years. (We went on holiday without them, and I had such a bad reaction to not having them that I stopped very soon after)But I'm getting there. Better late than never. I still get upset sometimes if I'm in a lot of pain, but the tiredness of M.E. I have mostly learnt to accept. Not doing so, and stressing makes it worse.
I'm pretty sure my faith helps me.
EllieAnne nothing wrong with saying you're not happy with the dental work. You're perfectly entitled to. You paid a lot and deserve a satisfactory job.
Scaredycat Your AF sounds horrendous. I don't think I could cope calmly with that. I really admire you.
I had AF for quite a while and I think the cardiologist was fed up listening to me. She's very nice. I used to do vagus nerve exercises which helped.
"Air of calm" made me smile. Probably more an air of resignation.
EllieAnne we need little treats in life. Just enjoy them. I love my chocolate.
Wyllow3. Sounds like a successful day. You achieved a lot and made progress Sorry you didn't sleep well.
We can order prescriptions online.

HVDY well done on broadband deal, it pays to ask. Feeding baby, how lovely.