Black Dog 15

My thoughts about the bowel physio you can probably guess, Sweetpeasue yes, its an "every little helps" thing. Because I know my very specifically targeted yoga does help a bit tho I know its a different set of issues for you. Do give it a go.

have a look at this: could you do these (not when pain is very bad of course)
www.youtube.com/watch?v=Hp-bXOTuQck&t=450s

Doodle any luck with todays appointment?

Best wishes all other BD's.

Wyllow Sorry-I'm getting awful lately. Reach end of tether with health sevice communication but maybe it's me. Filled in umpteen forms but want another and now say still not got them so sending by post.
Report says a couple of things might be investigated further- 1 by endoscopy. They're non specific so can forget endoscopy. Something to do with duodenum but I dont get gastric tummy problems so dont think necessary. Other slightly bulky uterus. Know this refers to Adenomyosis and its appeared on other scans so will just ask Gynaecologist - in another decade or so. 🙄. Totally agree about F2F. I did get a long appt last week so guess my quota is up for another month. Feeling so grumpy today. Think its just no sleep.

Got appt for bowel physio. Know my bowel pain needs more than physio! All forms of denying access to consultant. I know I'm taking up time for them(and money) but its not my fault.Please be kind to me everyone, I know Im being grrr.
Doodle You really are so very patient with all you have to fight for. I do hope you get someone to lookat your DH's legs today. You must be at end of tether trying to deal with so much.

Oo bad Sweetpeaure. Asking for the report is a splendid idea. It sounds like she may have ID'd something helpful that is of no help for you if you cant understand it. Its a sad fact of consultant life they have x minutes per report back. I mean, were there any recommendations included or pointers forward?
They do tend to assume that your GP will "explain it"

(I've got a consultants report back phone call tomorrow post the colorectal stuff bit its a lot simpler - please can I have a CT scan on small bowel please to see if its a problem in there last place to look
(even if its better to leave well alone, if there is a narrowing of tubes its a strong pointer for long term limited diet that is being helpful and directions to gastro stuff)

I've just rung the surgery for copies of this and that on bug grit issue as only had half info. Need to know to whom have been referred in case they need nudging or its as simple as finding waiting lists and whether they handle operations etc. Things I should have asked but forgot all in a rush.

So much of it about time these days - I doubt the docs like it any more than us. Dial back 4 years and this morning would have been a F2F, doc explaining all the process carefully, time to think up concern's etc etc.

Buggrit too.... 5min phone appt. Couldnt understand what the hell she was talking about. Something to do with thickening area above cervix, could be lower uterine lining. She just wanted to get away, sounded stressed, especially when I tried to tell her of low tummy pain, like acid burning through me that kept me awake all night and further pain on Frid and Sat. Not the time obvs to discuss anything. I aked for copy of report that I'm going to pick up now.
Oh dear Wyllow Why cant anything be simple. Youll be concerned and when we're already stressed it just adds and it can feel as if a volcano inside wants to erupt. Not the '2 week list' is that good as in it cant be too serious, or bad as sis thinks it might be? Either way, you will want it out of the way as soon as poss. I do hope that you wont need transfer of skin from somewhere else. ( Confession - Ive been saying more than buggrit today) x

Buggrit... the Alien Lump has to have an MRI and then it will have to definitely be removed. DocSis contacted and it means there is more than meets the eye from what the Ultrasound bloke told me. But not the two week list. Its large and in a very visible place, so I hope in the end they can use the skin over the lump to pull across not find skin from another part of my body. Grrrr.

Waiting to hear from other BD's how todays appointments have gone... xxx

Wyllow Yes, it makes sense to get settled first before having a pet. Well done on using the treadmill.

EllieAnne I know how very lucky I am. I was fortunate to have such caring parents too. The son you saw yesterday - is he the reserved one? It must be very difficult to feel relaxed when you're so unhappy at home. There must surely be a way to move out - could you look up online what benefits you could claim if you were alone?

It's a grey and wet morning, but I slept well - DH slept on the settee until 7 then went to bed when I got up x

I have just done a 35 min stroll on the treadmill.

I may regret it tomorrow!

x Sweetpeasue

Ellie Anne is it a strain just with just grandson? Just thinking of some of nice things GS can bring?

Whiff Just looked up def of Neurogenic Bowel and no its not like that. (Thank goodness dont have 'accidents'.) After op I had pain in lowest part of back (think it's coccyx) and couldnt sit longer than 5/10 mins. Looked at Pudendal Neuralgia (Pudendal nerve leads to 3 branches one called internal rectal nerve). Am thinking it could be that as my symptoms fit and intend to take it up with GP tomorrow if I can get through. Thankyou for mentioning the FB group. At present I think I might get more anxious about different conditions on there but I do believe these groups can be helpful. How is your Sciatica now?
Wyllow I suppose at night our brains aren't diverted with things, as in daytime, so more likely for our thoughts to stray into dark territory. I understand your need to UNDERSTAND. I hope you have sleep tonight without these terrible feelings. Its such a lonely place. Sending a hug back.

Hvdy I do envy the relationship you have with your sons. My oldest has always been difficult, daughter has mental health problems and other son is reserved . I don’t feel I have a relaxed relationship with any of them but my own relationships with parents were not good either. I saw son and gs today but because I am so uncomfortable in the house it was strained.

Sis suggests pet HVDY but first I have to know whether I decide to move in the next year of so and where, if its a flat and so on. Have to feel settled first and sorted.

Doodle I sincerely hope the GP does something to help your husband tomorrow. He can't go on with his legs being as they are. So worrying for you, too.

Wyllow3 "A little reprieve now and again helps us realise it may not be like this forever" is so true. Please don't think I'm being flippant or anything - but have you ever thought of getting a pet? A cat or dog could be wonderful company (I miss my Mr Cooper). Thank you, I am fiercely protective of my sons. Son 2 took us out for lunch. I hate lovely gifts from both sons. GDs visited too. Son1 just messaged me a very long and sentimental "thanks for being such a great mum". Son2 isn't demonstrative, like me really, but I know he cares. I'm extremely lucky.

ScaredyCat, EllieAnne, Whiff, Candy and others - hope you're all ok.

I'm sharing my boudoir with --Chuffing Billy--my husband tonight, s I've been at the Bailey's x

Sweetpeasue there is a Bladder and Bowel community support group on Facebook which is a closed site you have to join it.

Do you think you have Neurogenic bowel ?

Scaredycat I thought of you earlier when I replied to HVDY but I wasnt sure what to say. I know those words of Doodle's were meant for you and I echo them. Hope your day wasnt too bad with AF too.

"A little reprieve now and again helps us realise it may not be like this forever"

Now ain't that the truth? Doodle. Yes a glass of white is always taken here. Medicinal of course. But I'm glad you are due to see the GP so soon because the legs are worrying and very frightening and restricting. You need a plan that makes sense and gives maximum movement.

Yes did make quakers and a short gym as in reprieve, for currently night after night is waking wanting to die black tunnel stuff despite however positive bits in day are or I've found music that speaks kindly to me or whatever.

I need it explaining to me really in psychological terms how my mind can do this is such an extreme way, I mean there is probably a bi polar element which I may have to learn to live with but I want to UNDERSTAND. It may be I need to adjust to being alone so much and obvs worse at night - dont know.

Sweetpeasue was glad the respite came on a special day - so great to hear, light in the dark.

HVDY - mums day - I hope there was something happening as you've been mum of the year recently with both sons. I can recall when sone and GF initially broke and it was an awful prospect and great shock.

Ellie Anne glad you got to meet u with a friend. That’s a long walk., DH and I used to do that.. can’t even manage half a mile now.
we have a drink in the evenings. Find it relaxing. Hope Sunday has been ok for you.
HVDY I bet you were good with dementia patients. It’s a skill. Not everyone can do it.
My DH has found the same with the diuretics. His legs are getting bigger. Hope you had a nice Mother’s Day lunch with your sons, we had a quiet day at home. Got flowers and chocs though. 😊
Sweetpeasue I think DH is feeling a bit like you in his own way. It’s hard to cope with life when you aren’t feeling great and don’t have answers to your questions.
I’m so pleased you made it to your sons. What a relief.
A little reprieve now and again helps us realise it may not be like this forever. So glad today of all days you had a better one.
Yes we are both feeling a bit low at the moment . Can’t wait to see the GP tomorrow. I am really worried about DHs legs.
Wyllow how has your day been?
Sweetpeasue a hard day for you I imagine, thinking of you x
You too Candy
Sleep well all . Early night for me.

HVDY Thankyou so much for that lovely response HVDY. I hope you had a good day too and have a nice evening. I think Ive been feeling so black lately and I really didnt think Id get there the way things are.

Hope everyone is ok.

SweetpeaSue I'm so happy for you. Great that you were able to enjoy dinner at your son's. I hope you have a decent evening/night.

How has everyone's day been? x

And--a miracle today. Lately bowel at it's worst since attending A&E last year but for some reason this afternoon was ok and just come back from son's after he made a nice dinner. I really didn't think it would happen - have had to miss so much last few weeks as its been daily attacks. I know another will happen but a reprieve for today.

Whiff Thats so good of you to help. I'd never thought of that. On website it has list of bowel conditions but Ive not been diagnosed yet and it mentions you need to see Dr for personal medical advice. I'm thinking my problem will be neurological in nature. Thankyou Whiff. Hope you're
Sciatica is settling a little and you're not in too much pain.
Wyllow Thankyou too. I feel so much better that I could do something 'normal*. I hope you managed your Quakers meeting today. That hug is so appreciated.
Doodle It must be so awful and frightening for you both not speaking to someone who knows what could be wrong. I really feel for you both. As you say it's hard to believe your DH could have daily walks with you a couple of mths ago. You will be trying to keep his spirits up by encouraging him that once Drs find out a way forward to treat him he can pick up the life he knew again. We need that hope so much dont we? I hope you managed a night without the RLS last night.

Wishing all have had a decent weekend. x

Sweetpeasue hope you were able to make it, hugs either way.

Sweetpeasue just a quickie have you contacted Bladder and Bowel UK. It's a charity.

I'm sorry. My pain and bowel probs continue. I know no one Ive spoken to understands my bowel problems. I'm desperate for disgnosis and just wish I could come across someone who could understand. Its constant urge of needing to go and its dementing.I think I might be too depressing for everyone and I dont want to be. Been asked to son's tomorrow for dinner. I cant set foot outside. My world has changed.There doesnt seem to be anyone else AT ALL that can understand what's happening. In this state I couldnt get to the hospital where new appt to take place. I care about you all so please dont worry if I dont post for a while. Love. x


,

Doodle Every time a new client came onto the books at that particular place, they always rang me as they knew I loved going to people with dementia. I did a lot of different courses and gained a lot of qualifications in dementia. My husband isn't noticing any difference whatsoever since starting the diuretics - I google Forusemide, and it says the effects can take weeks to be felt. Both sons will be here tomorrow and they're taking us out for lunch. Are you going to be doing anything tomorrow? I hope you and your DH have a decent sleep tonight.

EllieAnne Good that you saw a friend. Have a drink if you fancy it. I had a bottle of lager earlier.

Hope everyone has a restful night. Son2 is at his GF's, so DH will be in son's bed tonight . x

Yes the dreaded Saturday.
Went into town for a bit of shopping this morning then visited a friend.
Stayed in this afternoon but it wasn’t too bad because dh was upstairs watching sport.
I actually fell asleep for a bit.
I really want a drink now but will wait till he goes upstairs again or to bed.
Well done losing all the weight!
I could do with losing a bit but I did walk for 2 hours yesterday.
Sleep well everyone.

HVDY you’ve obviously got a lot of experience dealing with people with Dementia. Must be useful to help you understand your SIL and to help your brother.
Hope the diuretics are helping with your DHs cough.
I will look at cosyfeet, thank you. Are your sons coming round this weekend?
Sweetpeasue that GP you saw seems to be on the ball in helping you. I hope you can continue to see her.
Its always a comfort if you feel you have confidence in your Gp. Hope your weekend isn’t bad.
Whiff those are bad symptoms to have. DH’s balance is very bad and he often veers off and bounces off the walls but nothing as bad as what you experience. Do you feel unsafe going out in your own?
I agree with you, that is why support groups are so useful. Being able to talk to those who understand your condition and can empathise. It always helps to know that there are others in the same boat.
That’s good to know about the heart nurses. I hope DH gets to see one soon. We are floundering a bit not being able to discuss what’s happening with someone who knows what’s wrong with DH.
Your charity event sounds as though it was a good evening. I’m glad you were able to go and enjoy it with others.
Wyllow I’m really tired too. I seem to ache from my shoulders down. Not sure what I’ve done.
Sorry your good day turned into a bad night.
Meeting up with your family in July will really be something to look forward to. Devon is a lovely place. I love being by the sea.
Yes it was nice to see/hear from our sons. Although they don’t live far away they have busy lives with their families so we don’t see them that often.
When you start to feel a bit better it’s easy to push yourself to do more thinking you can cope. It’s only after when you realise you’ve done too much.
Scaredycat I think you feel a bit like DH. It’s hard to believe that 2 months ago we were out walking most days.
I’m glad you were able to overcome the panic this afternoon and have some time out. Is the AF being really troublesome at the moment?
It’s horrid when that feeling of panic comes over you. I get very hot and shaky.
Good you sister has accepted help at last. That will make things easier for her and your BIl.
No not using the treadmill. DH can’t his legs are too large and painful and I don’t seem to have the energy. I may try and have a go tomorrow. I know it’s not good not to exercise,
Candy I am envious, how lovely to get away for a bit.
What’s the weather been like? I used to love staying in our caravan. It’s something special. Are you there for the weekend?
Ellie Anne like Wyllow I am thinking of you again now another weekend has come around. Are you meeting up with anyone for coffee?

SweetpeaSue We've all got some ailment or other, eh. I hope you get to see or speak with the GP on Monday.

Whiff You went from a size 32 to 26 and then 16. That's marvellous. I keep saying I must do something about my weight, but then don't.

ScaredyCat I'm glad your sister is getting on well and that she's accepting help.

Wyllow3 Dressing-gown days are fine if you don't feel like doing much. Perhaps you'll feel different tomorrow.

Candy6 Enjoy your time away.

Doodle, EllieAnne and others - hope you're all ok today.