Black Dog 18

Checked up other place for Whiff, so glad.
caught up on you all too and sending love but in a bad state will keep hanging in here xx

Evening all, usual very busy day for me, Tuesday my busiest day. Thinking of you all. Well done Wyllow for hanging in there. You’ll be back soon I’m sure. Absolutely done in night night. Back tomorrow xx

Can’t find post from whiff? Assuming it went well .

Ellie Anne Whiff post is on the PIP Tribunal thread.
Hope you’ve had some time with friends today after the bank holiday weekend.
Wyllow glad you are still holding on. Wish things were better for you. x
Sleep well Candy
Sweetpeasue when is it you start with your trainee is it next week. Hope you are ok

Yes EllieAnne, she was awarded enhanced rate. The thread is PIP Tribunal.

I know some saw my post about my PIP tribunal yesterday on another thread.

But those that didn't after 35 years fighting for disability benefits I was finally awarded enhanced rates for both parts of PIP and because of having them before state pension age means they can't take them off me.

I can't thank the Brain Charity in Liverpool enough for their help and support as it's been a tough journey . PIP decision gave me zero on everything. But they got me a solicitor they use pro bono as there is no way I could have carried on this fight. But the lovely Roxy at the Brain Charity put me in touch with the best solicitor she knew could help me. The hours Suzanne has spent on my case must run into thousands of pounds but she did it willingly. She was lovely to talk to and always answered the silliest of my questions as the HPX makes it harder to absorb information without reading it over and over before it sinks. Her summation of all the PIP points of law was brilliant as the tribunal only look at the period my PIP decision was turned down which was July 2022.

Emma from the Brain Charity went with me and having her support made it easier for me. Plus giving me the backing of the Brain Charity.

The tribunal where very kind and the judge explained what was going to happen. The doctor asked all the right questions and understood about have a rare hereditary neurological condition he even quoted from my neurologists letters about how little there is know about it. There was a disabled man on the panel which I was very pleased about as he knows how it feels to be disabled from birth. He asked some personal probing questions but I didn't care and didn't feel embarrassed answering them . He said as they watched me get up off the chair and walk into the room they could see how difficult it was for me. I reached into my bag to get my glasses and he said he thought I was going to fall over.

I had been upset all weekend about the tribunal and the out come but they made it a easy experience. The tribunal 50 mins then we waited for there decision. Tears came to my eyes when they said they where awarding enhanced on both parts. It was such a relief to not only getting the money but to be believed.

There should have been a representative from DWP there but they didn't show up. Which didn't please the judge could tell by the way he said it. Emma told me while we waited for the decision they knew they would lose that's why they didn't come.

It was Emma's first PIP tribunal but she's glad she went with me because she can tell others what it's like . She is disabled herself but never tried to claim PIP but told her to. We met Monday last week for the first and hit it off . The Brain Charity helps anyone in the country even though they are based in Liverpool and this year is their 30th anniversary. They cover all brain related conditions both mentally and physically.

Just wait until I get the decision letter then it may seem greedy but going to see what else if anything I can claim.

Sorry some of you are going through such a hard time mentally and physically. But thank you all for being here for me. Don't post often but read everyday.

Take care everyone and don't be scare to claim every benefits you can you will have to fight but it's worth it in the end. The forms are tricky so get help from a charity or friend who is used to filling in forms and knows exactly how to word things. My daughter filled in my forms for me because the CAB and Age UK turned me down unfortunately I didn't find out about the Brain Charity until months later when a friend joined my craft group and told me about them.

As my husband would have said don't let the buggers grind you down.

Big hug to you all. 💞

Whiff Brilliant news. I saw it on the other thread.

Whiff - such good news I,m so pleased for you. Xxx

How is everyone today? DH and I went meant to have been on a hot air balloon ride (it was bought 18 months ago, keeps being cancelled because of unfavourable weather conditions), but it hasn't happened, so I've been faffing about at home.

So fed up with pain. I got out yesterday, wandered round town for an hour and thought how great it was, 2 good days in a row. By teatime had pains. But of course at 8.30am this morning I wasnt in pain. How do you ring your GP when the pain isn't there. Will have to write down how I feel now and make myself ring in the morning.
It does make me empathise with those living with constant severe pain.
Hope you're all having an OK or good day.xx

Hi all, a rare afternoon visit for me. Usually rushing around but no childcare this week. I’ve been working a few hours this morning. It’s really odd. I’m always rushing around wishing I had more time but then when I do, I don’t feel right. It’s like I thrive on being busy and don’t cope with lack of routine. This concerns me a bit because I don’t know how I’ll cope when I literally can’t be busy. Still, I’m grateful for now.
Whiff what wonderful news for you. You really didn’t let the buggers get you down did you 🤣 I’m glad you won, you deserve it all and more. I’m sure these people try purposely to make it difficult for you in the hope you give up but you didn’t so well done.
HVDY I’m not too bad thank except for issues above. Done lots of washing today and need to do a small food shop soon. But lethargic too but I’m ok. Shame about your balloon ride. I remember it being cancelled before. It’s a bit windy here so maybe if it’s the same where you are, then that’s why?
Nadaterturbe sorry for your pain. I hope it’s stayed away.
Hope Wyllow is ok and everyone else too. Pop back later xx

nadateturbe What triggers your pains? Any particular thing?

Candy6 That's not like you to not be busy. I wish I had more of a routine - I'll have to arrange things for certain days (I try to but this thing with my legs is a bit unpredictable). We've got the baby all day next Monday (looking forward to that), and now, the other 2 granddaughters as well . Their mum is back to work next Monday, they aren't at school until Wednesday, and Son1 hasn't got any more holidays. We'll have them on Tuesday, too. The balloon ride has now been cancelled 4 times. Yes, it's a bit windy.

Hope everyone is ok today x

Whiff it’s good to hear you had such good help from the Brain Charity. At last the approval you needed. It’s wonderful news.
HVDY I’m sorry that balloon ride keeps being put off. I suppose it’s very susceptible to weather conditions but still a pain. Wow you’ll have your hands full with 3 granddaughters all in the same day. I bet thé girls will love having the baby there.
nadateturbe I think you’re right to keep a pain diary so that when you phone the GP you can discuss it. I Hope there is something extra they can give you which will help. Sorry you’ve been in pain again. Spoils the day when you can’t make any plans for fear of what you are going to be like.
Candy when you retire for good, things will come along that fill up your time. Like you I was busy at work till the day I retired. Thought I would be a lady of leisure with nothing to do instead I find my days just pass by doing bits and pieces. One joy is a leisurely breakfast with the paper in the morning.
Scaredycat been to wrist physio today so worn out now, it’s a real workout. How have you been?
Sending hugs to Willow Sweetpeasue and Nanny. Prayers for all this morning.

Evening,
HVDY yes, I like routine. I’m not good with lack of it. You’ll have a nice time childminding next week I’m sure. I love it but I wouldn’t want to do it everyday. Hope you’ve had a nice evening. I’ve been for a long walk walk with the dog. Enjoyed it too. Better luck with the balloon ride next time 🤞.
Doodle yes, I’m hoping I’ll. ope ok with retirement. Fear of it keeps me working but it will end one day I know. Hope your wrist is ok now. I take it the physio helps? Hope so.
Night now and love to all xx

It's good to come in and read, Whiff glad again, and nadateturbe bests with the GP. I dont want to say the word how bad things are but appreciate the thoughts and prayers xx

Don't know HVDY. Started with stomach feeling bloated and needing to take lactulose every day. Not even sure it's connected to that. Lower stomach, back and both sides sore. Added to usual upper back pain and rib pain. Taking painkillers all day. Not something I usually do. I'm lucky though. I only take paracetamol. I can't imagine the pain that some of you must suffer who have to take strong drugs. And having to fight to get them, like Sweetpeasue.
So sorry I can't concentrate to answer everyone.
Wyllow3 you're strong, you'll get through this.x

HVDY- sorry the balloon ride has had to be cancelled again - this Summer has been so windy hasn’t it.
Still you have 2 nice days next week with all the girls - you,ll need a rest after that!!
Nadaturbe- hope you,ve had some luck this morning with the GP. Good idea to write info down. It’s so easy to forget something when you eventually get through to speak to someone.
Candy- don’t worry about how you,ll cope in retirement . You won’t have to rush so much but the days will fill up just not so frantically!! I too like routine in fact we both do it’s sort of comforting.
Your dog will be happy when you are at home more too- what sort of dog is he. Enjoy working while you can though - you,ll know when to stop.
Doodle- how long are the wrist physio sessions? It must ache afterwards.
How is DH doing?
I,m OK thanks just still learning to cope with how things are now. Feel so much better with the ADs.
Wyllow- thinking of you - our friend.
Hope the light comes back to you soon.
Love to,SweetPeaSue,Whiff,Nanny and all those who post/read .

Nadateturbe Pain is pain and can wear you down until the mildest of pain feels severe. The unpredictability of it disrupts lives and you are suffering physically and mentally, I understand.

Sorry not been in but thankyou all for your thoughts and prayers. Dont feel can keep coming in with same old. Pain is getting me down and DH has started with pain/stiffness all over.. Now have Oramorph on repeat. Doodlesee trainee psychologist tomorrow.
Wyllow Think of you daily and willing you through this v bad time.
Hate to leave anyone out but you are all i n my thoughts.
Love xx

Saw GP this afternoon. Thinks it's uti. How can a uti cause so much pain, during the night too?! Had me in tears. Now have big capsules to take for a week. Will be fun to swallow. I'm not great with side effects either. Oh well, people have worse to cope with.
Thanks for kind comments. I will try to catch up with everyone.

Nadateturbe Some people dont have v extreme symptoms with UTI s. I know people who just feel discomfort whereas others its excruciating. I'm would be doubled up with it. Hoping the antibiotics will work fairly fast and you wont get any side effects. x

Doodle Is your wrist feeling any easier? Have you tried swimming/aqua aerobics, or just having your wrist in warm water for a while?
Candy6 You'll get used to being retired. Your dog will like having you at home . You'll be able to go out for lunch/coffees, etc., as well as perhaps taking up a hobby or sport? I love not having to work now (I had no choice in the matter), as I used to start early.
Wyllow3 Keep in touch when you feel like it. We're thinking of you.
SweetpeaSue Glad you'll be able to have the Oramorph when you need it. Hope your psychology appointment goes well tomorrow. Hope your DH feels better soon.
Nadateturbe UTIs can be very unpleasant and painful. Hope the antibiotics work soon.

It's been quite a day. Day centre, which is scheduled to finish after next Thursday. Nice lunch etc. Went with DH to see GP. She examined him, suggested a new inhaler (he'll get it tomorrow), is arranging an ultrasound of his neck, and she agreed he needs lung function tests - which are taking approx 10 months for appointments! He's been on the list since June, apparently. Son1 turned up with the girls, so that was a nice surprise. They bought a bag of nice potatoes and a few sunflowers, that they'd picked from a farm, then he treated us all to a drink at the pub down the road. I got a letter from PIP - I'll be staying on the standard rate for 18 months, when I'll qualify for my state pension.

Hope ALL BDers have a pleasant evening x

Working backwards 🙂.
HVDY thank you. So sad that day centre is finishing. Why do things have to change? Rhetorical question.
I think it's awful that your DH has to wait so long. Honestly shocked at waiting times in GB. My daughters surgery has up to 6 week wait for non urgent appointments. That's not a service. Your son sounds very thoughtful and sunflowers are so cheerful. Honestly your family sounds so close and loving. Great news from PIP.
Sweetpeasue I didn't know uti's could be so painful. Thanks. Have been thinking about you. I hope the ADS are helping. xx

Just read your second last post Sweetpeasue. I'm sorry your husband isn't feeling well. I wonder has he got arthritis. I hope tomorrow's appointment is some help to you.

Scaredycat thanks, yes writing things down is a very good idea. Especially as one gets older.
I'm glad your ADS are helping. There was an interesting program on Radio 4 earlier in the week on them.
That was a nice message to Wyllow3.

Candy like you, I loved being with my DGC but couldn’t do it every day. What sort of dog do you have (sorry if I’ve asked before, memory problems) . Having a dog is a good way of getting out and meeting people.
I found retirement great basically because DH and I get on really well so no problem being around each other also I have lots of hobbies and so does he so we get to do different things.
Wyllow are you getting any help? Worried about how low you’ve become. Are you in touch with your sister? Please take care.
nadateturbe could you have pulled a muscle, lifting something or doing something heavy? How have you been today is there any improvement? Hope you feel more comfortable soon.
Scaredycat like you I enjoy retirement and taking things at a slower pace. Physio is about an hour. It’s hard work and I feel drained after. DH is doing ok. Thank you for asking. He’s a bit unsteady on his feet as, after years of high BP, it has suddenly become low. So glad the ADs are helping. If they work then they certainly are a boost.
Sweetpeasue so glad the oromorph is on repeat. That will help with problems with the surgery and is also an acceptance of the fact you are in bad pain. I doubt they give it out lightly.
Hope the psychologist visit goes well tomorrow and you develop a rapport.
nadateturbe just read your second post. A UTI would certainly be painful in the ways you suggest. I suppose you are on antibiotics. They usually kick in after 48 hours so hope that will help. Have you tried some cranberry juice, that might help too. Hope you feel better soon.
HVDY the physio suggested soaking wrist in warm water too.
It is very stiff and still quite numb.
Glad you and DH go to the Gp together. It’s always good to have someone with you. How is he now?
Great news about your PIP too. Nice treat to have your son and the girls take you for a drink ate the pub. Hope you had a nice time.
We popped over to sons tonight to leave some treats for our DGDs. Done all the housework and ironing so feeling pleased with myself. We are going away on Monday on a cruise for a few days but should be able to be in touch.
Take care all