Black Dog 23

Hello everyone. Sorry I haven't been on. I've had one health problem after another. IAt the minute on top of other problems I keep getting pains in different parts, just like a multiple pain syndrome thing? And stomach really upset after one dose of flucloxacillin, so I won't be taking any more of it. Theres only so much suffering you can take. So I'm in bed, have given up trying for now.. I keep trying but I haven't had one even semi-good day for ages.
I haven't managed to read all the posts. Just bits, and one Sweetpeasue posted yesterday. (I wish you could learn to write a draft email and then copy it to BD). But I'm so sorry for how your appointment went. It's so frustrating when an illness isn't straightforward. So difficult to get the help you need. And when you know what you need and don't get asked or heard, you just despair. Sending hugs.
I've read little bits from everyone else. But not able to reply.
Always thinking of you all.
Sending love.

Hi all.
SweetPeaSue- everything seems worse during those dark hours. Your thoughts magnify each worry that it overwhelms your mind. Your DH knows you so well and knew exactly how to deal with your distress. So much so that you were able to go to book club later that day. You are so much stronger than you think but sometimes the knowledge you have and your past bad experiences torture you too much. Hopefully the GP next week will listen sympathetically and realise your DH needs much more help than he is getting. Yes just keep on until somebody listens.
Whiff - some helpful advice for SweetPeaSue- from your life experience too. Glad you enjoyed York - did you go to the Viking Museum - we’d love to see that as they were so important in our history.
It’s so good to hear how you live your life to the full.
Doodle- what a lovely afternoon- a great combination. A friend the River,Coffee and Cake. May there be many more like it.
I still after all these years find it difficult to concentrate on a book - and I love to read. Music is so evocative isn’t it and certain tunes or songs just bring back memories which although lovely only remind us of what we,ve lost. If keeping busy helps you then just go for it- you,ll naturally slow down as time goes by and get benefit from the quiet days aagaon.
This afternoon I,m determined to sort the pansies out. They all looked at me this morning from their plastic containers so I feel a bit guilty! DH can do the labouring!!
Wyllow- I echo SweetPeaSue- try to put some trust in your new carer. As I,ve said before there doesn’t have to be a point just that for example a haircut will make you feel fresher.
To see your longer posts and your kindness to us all shows your heart is still a caring one - you are just scared to let it care again.
Just one baby step at a time - all journeys start with a single step. We are all right behind you Wyllow and care so much.

Right the pansies are calling so must get outside while I still have a drop of energy😩
Love to all xxxx

Sweetpeasue glad I didn't frightened you . I know my husband could be a stubborn so and so but I always won in the end . Your husband needs help and all this stress isn't helping you with your pain and health problems.

I came back from York on Friday and had a wonderful time . But will catch up with you all very soon.

Glad to see your longer posts Wyllow wish you had more help but glad to see you getting out for a walk .

Will have to read back a few pages to catch up.

Whiff You tell it how it is and I'm glad of that. Wish Dr's would do the same.
I believe you're right. At the time I pleaded with DH to go to A&E that very day but ,as you know too well, some men can be stubborn bu****s ,much as we love them and wouldn't want them to change.
Will see our GP this coming Monday if he's on and tell him what we think - if he doesn't do anything we'll see another until they listen.
It's a Yr since it happened, but he's slurred his speech ,on and off and mouth doesn't seem to move much. I think you're right.

Thankyou Whiff. Take care of yourself and if you're still in York hope you're having a nice time. Xxx

Wyllow A big hug for you. Do trust that carer. Take that first tiny step . I appreciate how very scary it must be. Just one thing done at a time. We believe in you even if you can't yourself. You're a n incredible lady . Wishing you so much strength. Sending much love. Such kind words to Doodle. X

Lovely to have time with your son and a break from home, Candy.

HVDY to block out constant bad thoughts - some reading, some posting. It’s very wise to take it steady with Jaffa.

I’m not surprised you are tired, *Scaredycat, you’ve had a really active and busy period. Not being able to do what we could and other thoughts - yes, difficult to deal with x ..I expect the pansies won’t mind waiting a couple of days.

Thank you for my Wednesday hug.

The carer came and we went to the park and a coffee, I think progress for me will be very slow as I’m finding it difficult to agree to arrange things, (as in whats the point) I also need to get o know her better and trust her. I find it difficult to talk to people altogether. Like my heart has gone dumb/numb to survive.

I think it’s good to write good summaries before/after session sSweetpeasue for several reasons.

One is so you don’t forget anything you want to mention, the doctor can read it quickly before asking questions

write after for both yourselves as a record, and another that you can get them scanned into their notes if you ask.

(Just saw that Doodle suggested the same but left it in!)
Glad DH was able to comfort you and well done for the book group.

I really understand about the music or stuff like poems Doodle opening up feelings that are all too much. In long depressive episodes I’ve had I have managed to read books to block things out. Your loss is so fresh it cant’ work for you. I hear you, about the good bits and the bad bits, the latter are scary, and all I can offer is hugs and..hang in there.

Warm waves, whiff

Sweetpeasue I think your husband had a TIA but not having the MRI until 3 days after it happened it wouldn't show up on the scan . As your husband speech is slurred at times I would ask your GP to one refer him for an urgent MRI scan and also refer him to the stroke clinic. I don't want to frightened you but my brother has had 2 TIAs or mini strokes first one didn't have a scan until a week later the second he got straight to the hospital and had MRI scan and got his diagnosis.

Is your husband on blood thinners ? If not might be word asking your GP about them.

Didn't read any further than yet but wanted to reply to you.

But don't worry TIAs or mini strokes doesn't mean he will have a stroke . A friend of mine has had a lot before medication and has no lasting brain issues and they told her many people have them but never have symptoms or leads them to have a stroke.
I am on Apixaban a blood thinner because I have Paroxysmal atrial fibrillation and they will help guard me against having a stroke . My brother was put on them within hours of the MRI showing he had a TIA.

Doodle Thankyou that really is an excellent idea.Didnt know a letter could be scanned on to DHs notes. So helpful.
Glad you had a good afternoon by river with friend.Night Doodle. x

Evening all. I’ve spent a lovely afternoon sitting in the sunshine by the river with a friend and having coffee and cake.
Sweetpeasue I would write down what troubles you and give your questions to the GP and ask them to scan your letter onto your husbands notes. That way anyone else who sees your husband will have a record of your concerns.
How are you both feeling today? Bit let down I imagine.
HVdY I’m glad Jaffa is being well looked after. He’s certainly a lucky boy. Yes I slept well thanks. How about you?
Good idea to get Jaffa checked. Don’t worry about the quiet I expect little miss noisy will be back very soon.
Wyllow “trying not to think” oh if only it was easy. Trouble is when you have worries there’s nothing but thinking them over and ruminating over them. I haven’t been able to read a book since I lost DH. Can’t concentrate. No music, too emotional and sad and I have a very short attention span.
Hope you get on well with the carer and it makes a difference,
Candy how nice to have some quiet time with your dog.
Yes I am keeping myself busy. Not sure if that’s a good thing or a bad thing. The good times seem to be getting better but then the bad times seem to be getting worse.
Do you go to your caravan every week? Must be lovely to have that special place to go to.
Scaredycat you do sound tired. I think being on the go all the time is tiring plus all the mental stimulation of meeting up with people and doing things can make you exhausted.
You are a wonderful example of how to be positive. After all you’ve been through you still keep looking on the bright side.
Ooh I love pansies. For the very reason you mentioned, their little faces.
Ellie Anne Nanny thinking of you,

So kind of you all to care -it really helped to read your words to me as I felt so alone.
It's a difficult one Doodle as it was the Rheumatologist who wrote to Vascular Dept for DH . The appts cancelled were sent with named consultants but his next appt didn't name any consultant , just department. I'm going to write a letter to keep on my notes to GP and also we'll be hoping to get an appt with him next week to tell him how unhappy we are with what happened and to tell him that it wasn't a migraine DH had last year.
I hope your day was not too bad today Doodle.
Scaredycat Thankyou and yes they were winter pansies I got too. Deep purple and mixed purple and yellow ones. So annoying when you lose your post. Apparently the SSS doesn't always cause symptoms but DH is an unlucky one.
HVDY Thankyou for your words to me too. I expect it is quiet today after having Littlegirl. She brings so much joy to you all, I'm so glad.
Wyllow Sorry for your dressing gown day. I hope today with the carer you've managed better. So good of you to care about others when you're so unwell- thankyou. I know you used to write letters to Dr's about medical issues and I hadn't thought much about doing that before , aside from my previous formal complaints that is.
Candy Glad you managed to see your son again and could stop for some nice relaxing you time. You do have such a busy life and it must have felt nice for your time to be your own for a while.

Woke up in the night really upset about everything and started crying again as I was thinking about Dr's not telling you things and hiding stuff from me , like they did before. I really ft like I needed the MH people again and my psychologist to try to unpick my irrational thoughts. My head was so full I wanted it to stop. DH talked me down a bit . Felt better with daylight and actually went to bookgroup.
Don't think I mentioned it but the Registrar yesterday advise DH to take daily aspirin. I told her he'd been taking it for 4mths now at my suggestion.

Hope other BDs not mentioned have been OK and wishing you all a peaceful night in body and mind.x

Oh I just wrote a long post and lost it - what a pain.
I,m so tired today- it’s my fault as I,ve had too many “ must fit it all in” days since getting back. Ageing is very much on my mind since this last birthday and without the ADs I know it would be difficult to deal with. But life is for living and I,ll keep doing as much as I can for as long as I can.
HVDY- what a lovely day you had with Littlegirl and what a beautiful idea it is to blend the young and old and the well and not so well. Her sweet little face must have cheered up so many people there.I think it’s good for children to see other people’s lives too.
Glad your eyes are improving it’s horrible when your eyes are sore.
Jaffa is settling in so well now isn’t he and it’s sensible not to upset him with a long car journey. He obviously loves your moggy menu!!
Great that DH and Son get out together- they sound good pals.
SweetPeaSue- what a disappointing day for you both yesterday especially after such a long wait. It doesn’t sound like anyone listens properly and there is no coordination between practioners. I googled SSS - it would help I think if your GP could enlighten you a bit more- you always feel better being proactive don’t you. I also think Doodles idea is a good one.
Please don’t apologise for your post- you had every right to unburden yourself and that’s what we are here for. I think anyone would have felt a mess after the day you had.
Doodle- yes my Son1 was born 6 days after my birthday and Son2 on my Birthday. It’s a shame you can’t have pets in your building but as you say it’s not always easy if you are out and about a lot.
Hope your day had more ups than downs Doodle. Some days are just hard aren’t they.
Been to local garden centre and bought lots of Pansies today but haven’t the energy to pick up a pansy right now!! I love their little faces. Try and pot tomorrow. Hope today is brighter for you.
Wyllow- Hope today your carer will be able to get to know you better and the future will be brighter with her to help you.
Sorry it was a dressing gown day yesterday but sometimes it’s just how you feel.
Hope you got some goodies when out shopping- you need a treat now and again. Sending a Wednesday hug xx
Candy6- these few days away will have done you good- and the dog!! We had a new washing machine a few weeks ago as ours died after so many years good service. It has a much bigger drum so got the washing done in 2 goes!
I love a DD day and look forward to when she retires next year so hopefully we can do a bit more together. She has 3 daughters so many a girlie day has been had over the years.
Take care and don’t work too hard - keep the holiday vibes going.
Nadateturbe I hope you are getting your strength back and managing to do some Art or at least get out a bit. Take care of yourself.
EllieAnne,Whiff ,Nanny,Allsorts and anyone I have left out plus all readers may the sun shine on you todayx

Wyllow3 Do you do anything to distract yourself from troubling thoughts - jigsaws, books, puzzles, music, etc? My mind flits all over the place (not the same, I know), so I have a couple of things on the go - puzzle books, paperbacks, magazines, games online. I dip in and out of them all.

Candy6 Nice. What type of dog is it? (Sorry if you've said before). Having the freedom to do as you please is good.

Was meant to be at the vet's today, to see if Jaffa's got a microchip (I doubt it), but the vet is off sick, so I'm taking him on Friday. I could have gone to their other branch, about 8 miles away, but I didn't want to frighten him by having him in the car. It's very quiet without a toddler in the house. Hope ALL BDers manage to have a decent day. x

Hi all, just caught up. I’m on the train at the moment as I’ve been down to my son’s for a few days. Just me and the dog! They’ve gone away now so I stayed on for a few days. I do love it down there and I’ve had a good few chilled days doing what I want when I want! Going back now to my slightly chaotic life!

HVDY what a lovely idea for a toddler group. I’ve not heard of that before. It must do the sufferers a world of good. I bet LittleGirl enjoyed it too. I do envy you having a toddler. I used to love taking DGS out in his pram and to groups, etc. I love having him now too of course, it’s just different. Jaffa seems to be settling well and is certainly well fed! Hope your DH and DS has a nice evening at the pub.

Doodle I hope you are managing ok. The rollercoaster of emotions you feel must be difficult for you. You are keeping busy that’s the main thing and I think that’s helping you through. You seem to be doing all the right things. One day, things will get easier I’m sure, it’s just a bumpy road there. Hope you are doing something nice today.

Sweetpeasue I’m so sorry for your disappointment after DH’s much waited for appointment. I can’t think of anything else other than to follow Doodle’s very sensible advice. You are used to fighting for what you need and you will fight this too it’s just a shame you have to. I hope your emotions have settled a little and you can now follow whatever course of action you decide, sending you much love and hugs.

Wyllow glad to see you’re still koko. I’m sorry for the problems you have with meds and I hope it’s not the same for you next time. Your psychologist seems really good it’s a shame you can’t see her more often. You’ll have your care worker back soon too which will help give you more stability I’m sure. Stay strong ❤️.

Scaredycat glad you had a nice holiday and hope you’ve managed to get your post holiday chores done. I have a lot of washing to do when I get home too but my washing machine was playing up badly before I left. 🤞it’ll be ok. Nice time with your DD too. You are so right, family is everything.

Thinking of Ellie Anne Nadaterturbe Whiff and Nanny plus those not personally mentioned. Hope all have the best day possible. Take care xx

Sweetpeasue I was so very, very sorry to read about your day after the long long wait. I dont know what to advise except Doodle suggesting you write it all clearly down not just to feedback to the Vascular department but for GP’s and future visits to other specialists. Very disheartening, no wonder you felt as you did. Just hoping so much the future appointments can help sort out the complicated symptoms so you know where you are.

I’m glad your eyes are a little bit better, HVDY. What a simply lovely and special idea for the playgroup. Littlegirl is having a great time with you. Jaffa is definitely settling in.

Doodle sympathies for your down bits today..very glad you had the help checking things over. x

Had a really bad day - dressing gown, unwashed, long day trying not to think. Carer tomorrow.

Night night BD’s present and just reading.

SweetpeaSue You and your husband had been waiting for so long for that appointment - no wonder you were so disappointed with the outcome. I agree with Doodle about writing it down and emailing the secretary (That way, you'll have a copy). It simply isn't good enough. My eyes are a lot better, thanks. Still sticky and sore, but not so itchy.

Doodle I hope you sleep well tonight. The care home put a lot of photos on their Facebook page. It really was a lovely couple of hours.

DH out with Son1 this evening (their usual Tuesday of a pint at a microbrewery). Jaffa has had 2 bowls of freshly-cooked turkey leg. Greedy boy . Hope ALL BDers have a restful night x

Doodle Thankyou so much for your suggestions. I think I will talk to my GP about it. Subclavian Steal Syndrome has never been explained to us. It was in the letter months ago by Rheumatologist and we expected much more about it today.
Do hope you sleep tonight.

Scaredycat so glad you had a happy birthday and a nice holiday. Your son’s birthday is quite close to yours then. Nice to have a catch up.
I would love to have a little dog but unfortunately we aren’t allowed any pets here and also I’m out quite a lot and that wouldn’t be fair. Yes it was a relief to go through the paperwork with our sons. I thought I’d done things ok but it’s good to have someone check it.
Sweetpeasue you are naturally very disappointed that the long awaited consultation didn’t go well. My only suggestion would be to write a clear account of what you think wasn’t answered in the consultation and what was conveyed incorrectly and what your concerns are. I would then email it to the consultants secretary and ask her if she would forward your message on. I do feel for you as I know how worried you are and you’ve been waiting for this appointment for so long.
Could you talk to your GP about it?
Sending a big hug,
HVDY what a lovely thing to do to take the children to the care home. I bet the residents loved seeing them .
I’ve had an up and down day. Might go to bed soon. Sleep well all.
Wyllow glad you got your shop done. When is your carer coming?

Sorry, love to all BDs and thinking of you all. I'm just a bit of a mess.

HVDY Just now seen your post. What a lovely day with Little girl. Not only fun for your DGD but enjoyment for all those residents too. That was such a thoughtful thing to take Little girl there.
I hope your eyes are feeling a bit better.x

Wasn't sure if to come in today. Find it difficult to put into words without getting palpitations.
Both felt the appt was no help at all. The appts that were cancelled were with named consultants. We saw a registrar that ,after hearing DHs symptoms ,conveyed them back to an invisible consultant. She said, consultant said, DH not bad enough for surgical interaction and thinks his hand/arm pain is neurological (carpal tunnel). I think she said this because GP has referred DH to hand surgeon and thought it carpal tunnel. The Rheumatologist said he didn't think it was carpal tunnel and to do with Subclavian Steal Syndrome which is why he referred him to Vascular.
When she came back , after relaying symptoms to consultant, and I questioned her about the pain in his hand she said but he's getting tingling and not pain all the time but we told her he has pain continually- but she'd already given consultant her account of DHs symptoms and she must have thought it was just tingling.
When DH asked about the BP difference in each arm ( I'd already told her it's been a difference of 60 digits in systolic) she just said that any BP should be taken in the right arm (where it is higher) but GP doesn't know what to do about that and was waiting for advice. He can't give more BP med as he kept falling.
She can't have read hardly anything in records as we had to tell her. I don't know if she related to consultant the figure of discrepancy in BP in each arm as that makes a huge difference.

Another thing that bothers us is when DH first had slurred speech last Yr and went for MRI he didn't go until at least 3 dys after it happened so know MRI results were a little skewed- also that consultant put it down to a Migraine , because DH said he'd had 1 .Migraine as a child. That was why GP didn't believe my DHs headache was GCA at first and referred him to a headache clinic.

So sorry but impossible to relate the whole mess. The Registrar said something about because DH on steroids it makes it more difficult to operate as arteries are thinner.

All I know is DH has slurred speech and confusion ever since that time a Yr ago and I'm so scared. We are both so low.
I tried not getting upset all day and when I thought was going to lose it started some knitting but just ended up in floods of tears all over it and DH tried to comfort me. I want to comfort him but I don't know what to do. We've waited so long for this appt.

DH has appt with Rheumatologist in November and one with hand surgeon. If hand surgeon (a special lovely Dr that performed his carpal tunnel ops) says his arm and hand/ fingers is not failed carpal tunnel( which is very rare) then it proves its the Subclavian Steal Syndrome, but just more time taken up being passed back and forth.

Really sorry I've gone on - I'm beside myself now. Have had to have a drink to calm myself. So sorry.

How has everyone been today? Took LittleGirl to a lovely playgroup - in a care home for people with dementia. There were about 20 residents, 15 toddlers and their mums/grans. Toys all over the place . The children all played nicely, the elderly people all enjoyed watching (and talking to some of them). It ended with singing nursery rhymes and then singing Happy Birthday to one of the residents. What a nice time.

Doodle Hope today will be brighter for you. Will you go out today? You've had a busy time lately.

ScaredyCat Hope the weather stays fine so that you can get your washing dry. My eyes aren't better but are improving, thanks. Jaffa is going to the vet tomorrow (Wed). What a nice time you had with your DD and a chat with your son. Yes, family is everything.

Wyllow3 I haven't been out of the house since last Friday. My eyes have felt and looked so bad, but got LittleGirl today. You did well in doing your shopping. Do you chat with the cashiers? A bit of a conversation is some human contact, at least. We all need that.

Taking LittleGirl to a new playgroup this morning (assuming she doesn't want to have a nap) and possibly one at a church hall near us this afternoon. Hope ALL BDers manage to have a decent day x

SweetPeaSue I think we all have those "can't be bothered days sometimes, don't we? Hope your pain has stopped (ask your GP again about Fibromyalgia). Best of luck to your husband today.

HVDY sounds like “one of those days”, sorry to hear it and that you didnt manage the day centre.
I’m glad that your eyes are a little better.

Sweetpeasue you probably won’t have time to read this before you go, but it’s been very much on my mind that tomorrow is the big day for DH…..so hoping there will be some help there.
Clearly a tough day for you pain wise: well done for planting the bulbs.

Doodle I hope today hasnt been too bad for you after busy times.

Scaredycat as they say, nice to go away, nice to come home, despite the mountains of clothes. What a nice time yesterday with DD and a good chat with Son today too.

And thank you for BD’s acceptance and wise words.

Hugs to all - today much the same, but got my weekly shop done. And to BD’s not in today.

Hi all. It’s lovely to be home again - despite the mountain of washing and ironing!!! Had a really nice time with DD yesterday ( my birthday proper was on holiday) . We had coffee and cake, she bought me a 2 lovely jumpers then had lunch. I love spending time together with her. Today is my Sons Birthday so we had a chat this afternoon. Family are everything.
SweetPeaSue- I,m glad your Birthday turned out to be a better day as it went along. So glad you had family times - and cake!!
Hope you feel ok for DH big appointment tomorrow- at last it’s come. Glad you got to see GP- and the blood tests give you some answers. What sort of bulbs did you plant? I,m thinking it,ll be winter pansies time soon. Thank you for my hugxx
HVDY- yes thank you had a lovely day with DD. Glad the drops seem to have helped your eyes. Hope you found something nice to do today . Jaffa must be so happy with you now- did you go to the vets?
Doodle- it’s amazing how animals can cheer you up isn’t it. Would you perhaps consider a furry friend in the future?
It must help so much to have your Sons to help you with some of the paperwork that seems never ending.
You didn’t miss my birthday - it was while we were away but It was a belated treat from my DD yesterday.
Wyllow- I do hope your carer will be a regular visitor - hopefully she will be someone whose company you enjoy and are able to attack The List with.
It is so hard for you to have to contend with those thoughts and feelings of can’t be bothered and the legacy your ex has left you with. But you are a very intelligent interesting woman and there are many good things that you can still experience and enjoy. Just one tiny task a day all add up in the end - you are worth so much to us all.xx
Candy,EllieAnne, Nadateturbe, Whiff, Nanny, and all those who have visited or are reading hope the week is kind to you all.

HVDY Jaffa is being well looked after. I might come and sit outside your door too 🤣. Glad your eyes feel better. Hope you managed to enjoy some sunshine today.
Sweetpeasue so glad you had a nice day and lovely chats with your family. Always a comfort to know they’re ok.
Your boots sound nice.
Sorry today’s not been so good. Hope you can sleep well tonight and feel better tomorrow.
Scaredycat how did I miss it was your birthday too 😱. So sorry. Hope you had a lovely day and belated happy returns 🎂🎂🎂🥳🥳
Wyllow i am hoping so much your carer helps a lot and things start to improve for you.