Black Dog 19

Couldn’t get my railcard because the ticket office was closed. Will try another day.
Sorry to complain about trivial stuff when so many are coping with really difficult situations and terrible pain.
Just ignore my moans.

Goodnight EllieAnne will talk tomorrow. x

Hi all
HVDY- it’s sad to hear how much your SiL has deteriorated and that her behaviour has changed too- Alzheimer’s really is a cruel illness. The only consolation for her is that she doesn’t really remember afterwards what has happened. Although nobody knows what goes on in sufferers heads.
I think you are very brave to face the Coroners Court again- I remember how awful it was listening to evidence after the accident that killed my Son and Husband. I am so sorry you went through the awful experience of losing your brother at such a young age.
We didn’t buy much on Sunday but made a start. DH and I have 5 children between us so there are 10 adults- 11 adult GC inc 2 steps- and 4 GGC so it’s a bit of a task. Online is a saviour isn’t it but some we just like to pick ourselves.
SweetPeaSue- I feel like Nadateturbe - what you are going through is really disgraceful and can’t believe what seems like a complete lack of care.
Have you asked the pharmacist about the ADs and your painkillers?
What a ‘to do’ about that one appointment- your DH was so kind to let you have it but I know how much you wanted him to be helped- you really do look out for each other . You so need someone at your surgery to take the time and listen to how your pain is affecting your life so badly.
Hope today is better.
EllieAnne- I feel so sorry for your feelings about Christmas. HVDY is right it is only one day but it is a special one. Is there no chance you could talk to your husband about what you could both do for the day?
Maybe you could volunteer at lunchtime then eat together in the evening.
You never know unless you ask if Son1 and family may visit for a little while . I feel so sorry for your situation.
I like the same books as you- do you use a kindle?
Hope you get your rail ticket.
Nadateturbe- yes it was so nice to spend the day with DD. I think we did more chatting and eating than we did shopping !
ME must be so restrictive but you seem to make sure that when you have a ‘good’ day you make the most of it.
Like you I,ve been in U3A for a few years - the only group I attend is photography which is fun. Hope you manage to get to the reading group.
Doodle- I so hope there will be an improvement soon in your DH condition. This is so much stress for you- please don’t wear yourself out. Is there anywhere quiet in the Hospital where you can have a rest.
Hope your sons have been able to visit and be with you at the Hospital for a little while.
Take care of yourself and thinking of you both.
Wyllow- thinking of you too and hope you are managing to eat a bit and the help you are getting is kindly.

Found out that our church is not doing a Christmas dinner this year. There may be other places but I wouldn’t feel comfortable helping in a strange place.
And dh and I don’t talk about things.at some point in dec he’ll ask what’s happening at Christmas but doesn’t do anything towards it anyway. I’ve always sent cards to his family.at the moment he’s sitting sleeping with the news on having done nothing all morning. I’ve been helping at my church thing and am taking a friend for a scan this afternoon.

Such a change in care for DH now the weekend is over. He is very seriously ill but they are doing all they can to make him well. Thank you for your kindness and prayers.
I won’t post again tonight as I have so many family to contact I run out of time but I know you care.
I am not really catching up at the moment but I know you are all looking after each other and I am thinking of you all xx

Doodle I hope your husband is getting the best care and you see some improvement soon . My thoughts are with you as you are battling your own health problems. Take strength from your loved ones and make sure you look after yourself . Remember to eat and drink and rest as best you can .💐

HVDY glad you can cope, jury service is interesting but sometimes its difficult to listen to details.
I often sleep with a fleecy throw next to me, very cosy. Online shopping is so convenient, but I like shops at Christmas. It's funny how much you find for yourself when looking for others.😁
I have to confess I hadn't heard of N Fitzpatrick but have just googled and it sounds like a popular choice.
We text each other and I started a family Whatsapp and post photos, but no one else does. I think perhaps we're not a close family. We used to be. Perhaps if I was still with their dad it would be different. I do my best to be 2 parents. And my husband is very nice with them, but he's not their dad. Their dad has almost zero contact. Sadly.

Sweetpeasue I've just googled CPP on MayoClinic and it seems all the tests you have had is what they recommend but you should get your doctor to double check, and if there's nothing else, they really need to tackle the pain. No one can be expected to live like this.
In NI we have a patient care council. Is there somewhere similar who might give you some advice?

EllieAnne I hope you slept better last night. Not sleeping makes everything seem worse.
I hope you manage to get a reasonably priced ticket. Have you contacted your DD?
Where Christmas is concerned, lots of people are alone. I know it's lovely for those enjoying a family day, but if it's just another day, it honestly doesn't matter. We spent them alone before my husband started playing at the community lunch. Quite happily. I bet there's someone in church who's alone and would appreciate a visit. Plan something nice for another day.
Your husband sounds depressed?

Doodle I hope your husband is being looked after well. I hope he'll show some signs of improvement very soon. Please look after yourself x

EllieAnne I hope you managed to get a train ticket. My husband has never done anything towards Christmas (he always cooked the dinner, though). I've always bought, written, and sent cards for birthdays, Xmas, Father's Day, Mother's Day (to my in-laws), as well as everyone's presents. He'd happily sit all day, every day, doing puzzle books, watching tv, or looking at Facebook, if I didn't ask him to do jobs or suggest going somewhere.

I hope everyone else has been ok today. DH went for an ultrasound on his neck today. They found a lump, and aren't sure whether it's a lymph node or something else. They said he'll need a CT scan and/or biopsy at some stage, and they'll contact him. I took SIL's washing back, all clean and ironed. She was asleep, hadn't touched her cooked lunch. My urine test result came back that I've got decreased kidney function and a UTI, but the GP can't prescribe anything, she's got to see what the Neurologist says (he was the one who requested the test). Had blood tests today, so it'll be a case of waiting to see what the Neurologist says about that, too. How ridiculous.


ScaredyCat You've got a lot of people to buy for, too.

Scaredycat it's true. Sometimes I think Altzheimers is harder on the family but we don't know what's in the head of sufferers. It's so sad.
I have worked in the Justice system. It must have been traumatic for you listening to details in court. I'm so very sorry for you losing your son and husband like that.
U3A is good, even if you only go to one activity. I think I remember you mentioning photography. Do you ever frame any photos?

nadateturbe You hadn't heard of Noel Fitzpatrick, the Supervet? He had his own programme on tv (several series), and has written quite a few books.

I love super vet and Yorkshire vet.
Nadateturbe being alone is not a problem for me. It’s being with someone I don’t feel comfortable with and spending the day trying to be in different rooms or out walking. Anyway what happens will happen so I try not to think about it. Not had any success with rail card or ticket yet. Every time I go to the station the ticket office is closed although it’s meant to be open.

Doodle So glad your DH is getting much better care now. I remember the difference in care at weekends when my FIL was in hospital. Keep looking after yourself too, the best way you can. Love and thoughts are with you. x

Scaredyca I just can't imagine how difficult that whole time was for you after that terrible accident. The Coroners court must have been dreadful too. I'm just so sorry youve had to go through that and also having to live with such an experience. You are remarkable. Its not the same, but my son lost a longterm GF to suicide and he found the inquest so painful. You have so much to cope with the AF and you seem such a brave person.
Thankyou for your thoughts about ADs andpainkillers. I'm assuming the trained Psychiatrist I saw initially has taken this into account though its good to have the option of pharmacist too.
HVDY So glad the foxe/s came and the fireworks didn't put them off. Iys so terribly sad about your SIL and her rapid deterioration. You are such a good carer and your brother is lucky to have you looking out for her. Its concerning that your GP has not given you antibiotics for your UTI. I wonder how long you will have to wait!
EllieAnne I hope you have some luck with getting some train tickets soon. I understand you putting things we feel we can't do anything about to the back of your mind as sometimes that's the only way to carry on. It works for a time, I think, and can give us peace, even if temporary. I gave son2 a Noel Fitzpatrick book last year.
Nadateturbe Its kind of you to look up CPP. Ive been poring over the Association of European Urologists guidlines for Interstitial Cystitis and their criteria for diagnosis is different to the Interstitial Cystitis Association, which is American. The ICA believes only 10% of people with IC has Hunners Ulcers, wheras the European Urologists (and UK) believe its not IC unless you do have them(Hunners Ulcers) My Urologist did not find them so is calling my condition CPP, which seems to ne more vague. Sorry to get technical. I'm just tired of kt all. I know that ME is v difficult to diagnose so I'm sure you must have had the same frustrations and fears at one stage so you will understand. It must be so difficult for you to live your life from day to day and you can't plan ahead for anything as you dont know how you'll be. Thankyou for caring.

Full painkillers againg at 4 and 10 this morning. Spoke to different GP as one that understands my history not taking appts this week. Just told to continue with painkillers throughout the day, up to 4 times. (1teaspoon oramorph and/or 30 to 60mg cocodamol) Said she could refer me back to Urologist. Didnt think of any other option so agreed, though hes an arrogant so n so and didnt listen to myself or DH. Said he's 'of the old school'(regarding criteria for IC).

Sorry for going on
I'm all over the place. Think its the interruption of ADs and also can't see an end to it. Son 2 is making up wedding list (wedding in May) and I'm not sure if I will practically get there if pain is so bad. I am terrified of spoiling the occasion if I'm bad.

I need to call MH (there's hardly any contact, theyre busy). Dont mean to use BD - leaning too much.
Thankyou for listening.

Sweetpeasue my illness is nothing like yours. Very depressing yes, and some pain, but absolutely no comparison. Your pain must be very bad to take such high doses of painkillers. Is it not possible for you to see another Urologist and explain your research to him?

EllieAnne your situation sounds quite unbearable. Yes, best to not think too much about things you can't change. But it's not good to have to live like that. (I know I'm stating the obvious).

HVDY nice to hear your foxes are still coming. And no, never heard of him. Don't watch animal programs apart from All Creatures....

HVDY I hope your husband gets a scan or biopsy soon, you don't want to have that worry hanging over you. Fingers crossed its something harmless.
I wonder what a neurologist has to do with uti's and kidneys? And blood tests too? Hopefully you'll get an explanation soon At least you're being attended to.
SiL's washing returned all ironed! Honestly, I'm constantly amazed at your energy. . You're such a caring person.

Doodle don't worry about catching up. Look after yourself. I'm glad your husband is getting good care. I have been praying for you both and will continue. xx

Wyllow3 Candy and others reading BD, thinking of you all and wishing a peaceful night for you. xx

Nadateturbe I think what's special about this thread is that we all appreciate that we have a complete variety of conditions/ilnesses/ circumstances that can have a great impact on MH and we are equal in that we care about each other's struggles and pain. I really hope in opening up Ive not leaned too hard. I think I must be weak being so desperate. Your illness is different but no less in how it affects your life. It helps to know that I'm not alone and I hope others feel the same. I feel weak when I see how others have pulled through extraordinary times in their lives. I'm not sure if other Urologists would just back him up, Ive experienced that happening with Gynaecologists, but I have looked up others in this area but am doubtful.
I hope you sleep well tonight Nadateturbe.
Wyllow We miss your wise words but hope you are looking after yourself. Take care, we care.

WhiffCandy**Nanny Allsorts* Fishwife* and all those I cant remember, wishing you all a peaceful night. X

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I've caught up and several special thoughts going out. (but dont feel its fair to mention one not others). Love to all BD's.

nadateturbe I'm under a Neurologist for Vasculitis of the legs, feet, hands and arms. (it's called ABCA Positive Vasculitis). The condition can affect the lungs and kidneys, which is why he wants me to have regular blood and urine tests. He says he doesn't need to see me again unless my condition gets worse, but because he requested those tests, the results will go back to him and my GP won't prescribe anything until the Neurologist has advised.

SweetpeaSue You must be sick of it all. I hope the painkillers give you some relief. Try not to worry about your son's wedding (that's lovely news), things will hopefully be better for you by then. When's the pain clinic appointment?

Love to ALL BDers. Off to bed now - got Little Chubby Chops all day tomorrow. She's just started weaning, so I've bought some rusks and other stuff for her to have. x

HVDY Enjoy 'little Chubby chops' tomorrow. That made me smile.
PM appt 30th Nov.