Black Dog 16

Candy- Glad you are able to spend a bit more time this week at your caravan. Hope you haven’t got this freezing cold wind like we have. Your brothers must love visiting with you- it must be lovely to have two big brothers.Your support must mean so much to them- I hope they now have some happiness in their lives. Enjoy the rest of your time away.
HVDY- you could possibly be phone World Champion!! My sister and I do an hour and a half each weekend - a mere chat!!
Glad your shakes are not as bad today - it’s such a horrible feeling. Day centre meal today is one of my favourites- what sort of cookies did you make?
What a nice surprise to see your Son- you really are a brilliant Mum always ready to help.
Hope you have a comfortable night.
Wyllow- you must have been so pleased”your” library ladies were still there.Please don’t avoid going there as the warmth and companionship is just what you need. Chores will always be there but it’s those lovely unexpected encounters that make our lives worth living. Do you have a Waterstones with a cafe near you ? We love to have a coffee and browse through the travel books etc.
It’s the 24/7 AF that is curtailing my walking - it is so tiring and even small inclines take it out of me. Not out of breath but just shaky. The ADs are helping a bit with the anxiety though.
Hope you find something nice to do today- you haven’t messed up you,re just trying different approaches to living your life . You have much courage.
Doodle- your church friends must have been so pleased too,see you back. Your picture sounds a good subject- watercolour pens interest me.
Great news your DH is getting on better- if anyone deserves a break he does. Hope the river babies arrive soon. You reminded me once years ago in the New Forest we saw a baby duck last in line behind his Mum taken by a big fish- it was horrible😩
Hope you,ve managed a walk today- we have that cold wind too and are fed up with it!!
Love to all

Evening all.
Wyllow you do seem to be struggling at the moment bless you. I really think you would benefit from being in a community - I know you’ve mentioned McCarthy Stone previously. As you said, your cleaner cheered you up so somewhere like that, you could have company pretty much as and when you need it and not feel so alone. My hairdresser works at one (not MS) but a local, private one. I sometimes go there to get my hair done and I always think how nice it is that people meet for coffee and a chat. I would imagine that other activities are on offer too. It’s something I would definitely look into if ever I was on my own. I like company. I hope you keep going to the library. They sound like nice people. I hope you are feeling better now.
HVDY glad you had a nice day at the day centre and that you managed to get there. Nice for you to see your son too. You spoil him! I’m guilty of that too and it’s nice to help out.
Scaredycat yes, we do have the cold wind unfortunately. Apparently it’s coming from the North so that’s what is making it so cold. We’re sheltered at the van but venture onto the beach and brrrrr! I’m sorry the AF is limiting your activity. Are there times when you feel you could do more as in a bit of a remission or is it pretty much the same all the time? I hope there are better times ahead for you.

Hope all BD’s are having the best day possible and sending ❤️. We’re off to a local bistro this evening. They do good food and I’m looking forward to it. Take care all xx

CandyHope your DD and SIL are having a nice Anniversary. I'm sure they must have loved the canvas of their DS and his Labrador. They really are beautiful dogs. We used to look after my son's chocolate Lab and adored him. We had to let him go when he was 13 over 2yrs ago. Hope you're enjoying your much needed rest from work.
HVDY It's awful feeling shaky like that. Not being able to drive must be annoying and having to depend on DH. Nice of him to drive you to centre though. You are such a good mum to your boys. I dont think Id know what size shirt my sons have now. Distention is frightening me and dreading it. X-ray on knee tomorrow. Have to hold on to loo roll holder and wash basin when need bathroom. We're all falling to bits aren't we? 🤦‍♀️Day centre still doing nice meals.
Wyllow I'm so saddened to hear of your rough night and feeling need for crisis call. Those librarian ladies are lovely and I'm so glad you have another safe place to go and have a friendly chat. Wow! 15 books is a huge amount of reading. Your poor mind must have been running so fast. I hope you have had a restful afternoon and made up for your busy day yesterday doing all the monotonous stuff.
Scaredycat I'm so sorry the AF is still 24/7. It must wear you down, yet you always have nice kind words for everyone. It must be good to catch up with your sister every weekend. Hope she is doing ok and getting stronger.

Love to all BD

Evening all.
Went into town today. DH to Specsavers and me to M&S. I am so unfit I was exhausted by the time we got back and we didn’t walk far. We drove there and parked. We used to walk from home, go round the shops and the park and walk home again. I certainly couldn’t do it now.
Sweetpeasue I can understand you being willing to try anything to improve your condition. We have done the same but it sounds as though that diet is a bit hit and Miss. probably a good idea to limit the caffeine though.
Wyllow we all need companionship. The ladies at the library sound so nice. Does your library hold any events like a scrabble group or knit and natter. Might be nice to join one of those. Do they have a coffee area? Ours does . Nice to just sit there and see who else is around.
Don’t be hard on yourself. It’s easy to do too much and then suffer the consequences or in my case eat to much
Candy you were popular this evening. Lots of phone calls.
I didn’t realise you were off work this week. Thought you were just at the caravan for the weekend. Must be lovely for your grandson to spend time with you there.
My DGS loves dogs and has two. Don’t knock your Prosecco meet ups. My friend and I do craft together but it’s a very jolly thing. No talent involved just something to do while we have a chat. How lovely you have a close relationship with your brothers. I was very close to mine too and my DSIL.
HVDY. If your DH wishes for you to be able to talk to the GP about his results then all you have to do is drop them a note saying he gives his consent for them to discuss his medical conditions with you. I do all the phone calls between the GPS and consultants as DH is a bit deaf in one ear. Now our GP even phones me to discuss results. As long as they have your DHs consent there shouldn’t be a problem.
Sorry you weren’t feeling too good today and missed your aerobics. You are wise not to drive if you are feeling dizzy.
Good you had a nice time at the day centre.
Scaredycat sorry the AF is such a constant presence. Not surprised it stops you walking so much. The watercolour pens are really good. You can dip the nib in water to make the colour paler and gradually just going over till you get the desired colour. Mine weren’t expensive but I enjoyed using them.

Sweetpeasue you and I must have some telepathic connection. The number of times we post at the same time is amazing. Again you popped in whilst I was typing my post.
Hope your X-ray goes ok and they let you know the results soon.

Doodle😂 I just knew you'd be behind me.
Glad you had a trip round the shops. I think I get tired easily too. Walking around shops seems more jassle than it used to. Especially when they get sizing wrong! Hope you managed to change that bra.
I had a good morning - got a washing up bowl. Ive tried to find right size for 6 mths so this was a gem of a purchase! Then awful afternoon as GP I spoke to yesterday said their secretary would sort out the mess about making sure my op is booked in(they sent me booking and I booked what I thought was op but was a NHS appt with Urologist. It didnt say this until Id booked.) Secretary passed job to me to ring Urologist sec but hospital wont give me that info. I'll not be able to explain here but I'm so fed up with it all. Anyway as Scarlett o' Hara said--Tomorrow is another day. Hope you have a peaceful night. x

Just a very quick visit to say hello. Having a rest today from phone. We are starting each morning now with 15 minutes meditation after breakfast, as my husband was feeling anxious. I used to practice it regularly. I'm finding it useful, a good calm start and reminds me not to get anxious throughout the day.

I've read all your posts and am thinking of you all, hoping you have a peaceful night. x

Good to catch up. Got through the day without more wrecking behaviour and painkillers cos of delayed CFS reaction. Tomorrow is counselling and nurse looking at alien lump healing so hoping to get to gym on Saturday.

Scaredycat does anxiety impact on your AF? I mean, in a way that you can usefully predict it? Worst is often fear.

Sweetpeasue what a horrible mix up. A real downer on a promising day...I hope the X ray is useful tomorrow.

Doodle I was thinking about this "how to cope with what we used to be able to do"
as yes, going out for you was successful but reminds one of "before". No easy answers.

I realised something else is going on in that regard for me, maybe for others.
"Before", I had a vague list of "things I might do in the future" when had energy and got out and about and hoped that in some way I'd recover from MH stuff. Held on to that belief for years. Now I know there are things I probably won't ever do. Makes it all the more important to best live in the present and not wreck stuff.

Good idea there for HVDY to get Mr HVDY to give permission - you are good at all this.

I hope you've had a lovely meal Candy.

PS you did well to get out HVDY after yesterday.

Wyllow You are so perceptive at understanding all of our posts. My own situation is such a complicated mix up from my Surgery's reaction of Urologist's letter (which I have no idea of what has been said, as I've not had any letter sent to myself). I have an NHS appt for a consultation in August whan I've already had a private one with same Urologist. My GP surgery has messed all of this up.
No way I can explain this here, but I'm feeling v upset and scared about it all. I just feel mentally, that I'm worn out and can't take anymore pain.

Sweetpeasue I think it would be a good idea for you and your DH to have an appointment with the Gp. You can ask to see letters on your medical record so should be able to read what the consultant wrote to GP and their response.
Ask them why you have an nhs appointment in August when you’ve already had and paid for a private one. I know it’s hard but try not to get emotional just stick to the facts and see if you can get some answers. It all seems such a mix up.
nadateturbe I’ve not had great success with meditation my mind always goes off somewhere else. It’s good you and your husband can do it together. What a lovely supportive thing to do.
Wyllow hope counselling goes well and the nurse thinks you are healing well.
It’s hard letting go of dreams of things you might do but perhaps adapting to things you would like to do that do seem achievable.
Sleep well all x

Sorry I’ve not been around. Difficult week. Then when I tried to post gransnet wouldn’t let me so I had to reset password. But I am reading posts and thinking about you all.

ScaredyCat The AF must make life difficult for you, yet you always have such caring words for us all on here. Thanks.

Candy6 Nice to eat out. What did you have?

SweetpeaSue Good luck with the xray today. Do you have to have the distension? I'd ask for copies of letters to be sent to you. My hospital always sends copies of letters to me. It seems your GP surgery hasn't got a very good system of communication.

Wyllow3 I used to have a list of what I might do in the future. Things changed, though, so now I try to dream much smaller. I can hardly believe that less that 2 years ago, I used to do Zumba 4 times a week, and Zumbathons for 3 hours every month. I hope your counselling and the nurse check-up both go well.

Doodle Thanks, I'll get DH to give his permission for me to talk about his medical things (he's a typical man like that and wouldn't have even gone to the GP if I hadn't made the appointment).

It's another grey and cool morning here, but I'm going to wear a dress (I bought 5 recently) and put some fake tan on . Lunch with the very pregnant Son2's GF later. Hope all BDers manage to have a decent day x

Ellie Anne we all think about you too. Soot you’ve had a difficult week. Hope things get better. Are you doing anything today?
HVDY cool and grey here but I’m keeping well wrapped up. Don’t wear dresses much. I’m more comfortable with trousers.
Have a nice lunch

Grr. Sorry not Soot!

Nadateturbe- morning meditation is a lovely idea- starting the day with a calm mind- maybe I,ll try it. Nice that you do it together- hope,it helps your DH.
Wyllow- Hope today’s counselling is helpful and the nurse will be pleased with your ex alien site healing.
Now a list of things that you might be able to do in the future - but as you say live for the day and try and enjoy each day and the small pleasures.
Enjoy the Gym on Saturday- is there somewhere nice you can sit afterwards and enjoy the sun- if it’s out!! Maybe an Ice Cream on a park bench?
My AF is now ever present when before it was paroxysmal. So in a way I don’t live in fear of the next event cos it’s always ther and I can feel it. But it is now affecting my abilities and of course it’s scary to live with. I am grateful though that I have been able to see and do lots of things in my life. I mourn the loss of ability but will accept it eventually - not without a fight!,
Take care Wyllow .
SweetPeaSue- I do think the time has come for you to have a proper appointment with your GP- you cannot go on with such mental turmoil- or physical come to that. They must listen to you.xx
HVDY- Wow monthly Zumbthons - you must have been so fit.
Not dress weather here yet- that cold wind seems here to stay😩 enjoy your lunch with Sons GF - not long for her now! What a nice relationship you have.
Doodle- hope you’re both OK today and able to get out again.
I don’t know what to pack for next week so it,ll have to be a little bit of everything!!
EllieAnne- #orry it’s been difficult for you lately - hope the weekend isn’t too trying.
Love to all

ScaredyCat Yes, I was really fit and well - not on any tablets for anything, other than ADs. Worked, and had a great social life. Ah well....

I put a dress on, and glad I did, as it warmed up a lot here. Had a lovely pub lunch (and pudding), with DH and Son2's GF. Baby is due 2 weeks today. Hope all BDers have been ok today. x

EllieAnne I'm sorry to hear you've had a bad week. I hope today has been better for you and during the weekend you have something to cheer you even if its a walk or meet up at church.
HVDY Its been cold and overcast here this morning but bright afternoon. You must have been so fit to do all that Zumba excercise. You're right in that circumstances can change so quickly-many of us here wil agree. Lovely to get on so well with son's GF. The baby's arrival will be so exciting for you all. I asked GP secretary for copy of consultant's letter this morning. I need to know what's going on to contact consultant's sec. Started with Id been private patient of previous Urologist for 3 yrs. No, was NHS. Mentioned Id read up about IC and though he respected my views hedid things old fashioned way and diagnosed first thentreated. No idea. I'd always referred to my prob as IC with other Urologist. Think he's referring to the split between Urologists/countries having differing criterias for labelling
IC. I thought he'd be pleased I was trying IC diet and taking some responsibility. He never remarked on it so guessing the IC Assosiation (American) has differing theories. He was in a horrid mood that day. If I can finally make contact with his secs I may ask them if I can leave therapeutic part of Distention out.
Doodle The surgery def made the mistake about sending the Booking message to me. This Urologist sounded 'funny' in letter.As I said, my consultation did not go well and I was in tears when I came out. I have no idea why his attitude was strange. He thought I was private patient with previous Urologist so maybe he didnt like us asking for any further treatment on NHS. My GP isn't on until Thurs/Fri. Tried contacting both Private sec (who sent letter) and his NHS sec. Left mess on NHS sec answering mach but hospital wouldn't give me private sec number.
The good thing is I only had morning pain and it left after painkillers. Hope you and DH have been ok today.
Scaredycat It must be difficult after the weather we've had to know what to wear. It should get warmer though. Hoping you have a lovely time. Thankyou for your kind words.
Wyllow Hope your counselling went well today and the nurse gave the ok about your wound.

Had the x-ray. Results sent to GP in 3/4 weeks. Seeing as it was meniscus out of line last time, can't say X-ray will ne beneficial really as it doesn't show up on x-rays but have to go through the loops. DH and self v fed up of everything.
Hope everyone is ok. x

Scaredycar can théy not offer anything to help stop the AF now it’s continuous. Would a pacemaker be an option?
We went out for lunch today and had a short walk after. I was so exhausted I couldn’t wait to get back to the car. Must try harder to do more exercise.
HVDY so glad you all enjoyed lunch together. 2 weeks to go how exciting.
Sweetpeasue you could try looking up your Consultant Urologist online and see what private hospitals he works from you should be able to pick up his private secretary’s number from that. It’s how I got the number for our private neurologist. Is he an older man?
Good you managed to get over the morning pain. Hope the X-ray results are ok.
Not surprised you and your DH are fed up. Suffering from pain and ill health affects both of you. Hope you get to see your own GP for a chat soon.
Lovely evening here. Lots of people out on boats on the river.

Sweetpeasue I can totally understand why you feel as you do in a long term miasma of not knowing whats really causing the pain and the many complex factors. It is hard for you to find hope. Meanwhile practically I think *Doodle’s idea of an appointment with your DH with the right GP to sort of do a summary and sort out of where things stand. Yes, and keep on gathering information. The consultant sounds not so much ultra-hostile - tho it definitely seems that his “bedside manner” is remarkably short in content - but my guess is not enough time to have taken in all the information. Glad pain was relieved this morning to have a more normal day and hope it kept on. Yes, you had to jump through the x ray hoop - you Neve know, it might be useful….

Doodle I have some good meditation tapes on my computer - sometimes they work, sometimes not. What I find is I lie down and put it on, and 10 mins later realise I am off thinking about Stuff. So I put the tape back to the beginning (its on my computer of course next to me) and keep on doing this until my mind stays with the meditation. There are different kinds to try of course, the sort that try to get you into your body not your mind, or the sort that take you off into a nice garden of something. Or the traditional buddhist sort of focusing on the breath or a candle, but with someone talking you through it to bring your mind back to the breath or the candle.

I tend to find the right music can partially help - I have some sung Indian mantras, I have some quiet baroque music, but they dont work either sometimes of course - but I cant go to sleep without music on or something like wave noise - something to distract a bit.

I should try what you do Nadateturbe to start the day. Doing it together - thats very special and a lovely idea.

Thinking of you too, Ellie Anne as its the weekend coming up.

Dreaming much smaller sounds like a very good idea HVDY. Things that are possible. I’m very very glad the lunch went well with Ds’s GF. Really important contact for the future. And HVDY - you should be proud of yourself that you have been so supportive that it was possible today, it augurs well for the future.

Oh yes scaredycat the gap between knowing we need to accept and doing it - but at the same time as you say, not giving up before its necessary - a fine balance to keep. You may be used to AF but it is ever present for you, wel done for coping as much as you do.

I had a better day mainly because I had a good counselling session. Long story short - my depressions are getting worse so I am going to ask for a meds review - given the state of the service, I haven’t had one for 2.5 years. I am drinking a bit too much for me and taking too many extra current meds and depression levels and other symptoms like not wanting to engage with people and assuming no one loves me getting a bit worse. But expect a long wait.

We also discussed levels of support I best need ie whether to go for McCarthy and Stone type flat or ordinary retirement block. I vary on this depending on the mood I’m in, but the truth is my support needs are very high and unlikely to greatly shrink, yet it feels not sure if I want to live with over 75’s only. (I’d creep in as special needs at 72.

I also had a really really lovely walk in the Botanical Gardens in the sun and did 30 mins so hope haven’t overdone it - will fond out tomorrow, as I hd no choice after than go queue for some time n the chemists…but what a boost and the cafe there is re opening next week which of course is a real treat - a short walk and a long coffee if the sun is shining (tho there is an indoors too).

Doodle Oh dear. I'd already looked online at this Urologist but looked again. Only NHS sec number can be find. Directed to the private hospital no. for his private work.

But what I did find was a page of 2 reviews of this Urologist. Both dreadful. One v upset eith his attitude and the rough way he carried out a procedure (compared to a previous same procedure with a previous Dr). Another complained of same thing-a terrible attitude and manner with bad and terse ,sparse communication. I'm really scared now. I will have to think on what to do. As far as I know other Urologist has not discharged me. I'm so worried.

Wyllow You have had a good and thorough counselling session there. You are so good in homing in on our predicaments and helpful with the relaxation and meditation techniques. The Botanical Gardens sounds an excellent place for your walks and I'm so glad you had such a lovely one.Many more to look forward to. You are much cared about here on BD , I know.
I hope you can get a meds review done soon.
You sound v depressed and not wanting to engage with people is certainly a symptom of that. If its your Gym day tomorrow (think it is) then hopefully you will get chance to talk to some that you know and like.

SweetpeaSue That doesn't sound at all good about that Urologist. Could you see someone else? Are you putting ice on your knee? I suppose the next thing will be a CT scan or MRI? It's no wonder you're so fed-up, you've had ongoing problems for such a long time. I hope you have a decent sleep tonight and that you'll be able to weigh up the pros and cons of the distension/Urologist etc.

Wyllow We on BD care about you (as we do each other). Not wanting to engage with others then becomes isolating, causing even further withdrawal into oneself, then it becomes a downward spiral. Keep going out and speaking with other people, even if it's just a chat with people serving in cafes and shops. Hopefully, the weather will stay nice so that you can enjoy the park, etc.

I've eaten far too much again today - these damned steroids have made my appetite go off the scale. Must try hard tomorrow to resist the sweet stuff. Son1 here tomorrow, for DH to fix the handbrake on his car. Hope all BDers have a restful night x

Doodle It must be so nice to see boats on the river. I bet it's really relaxing

Sweetpeasue I think you need to take your DH with you and go and talk to your sympathetic Gp about your concerns. Is the Urologist you are seeing the same one your GP referred you to for a second opinion? Only other thing you could do is to look up some local private hospitals for urology consultants and see if you can find one with better reviews. Having said all that, I know when I worked at a surgery Drs got all sorts of reviews by patients. Some thought they were fantastic whilst someone else didn’t. Also people are more inclined to post a negative review than a positive one so I wouldn’t worry too much.
Wyllow I have tried meditation tapes the most successful one I had was someone describing a train journey through Switzerland. I seldom made it past the first few stops. Trouble is my mind is constantly going over things. Also I would have to use EarPods at night so as not to disturb DH so that’s the main problem.
M & Stone aren’t over 75s are they? Some are for over 60s but without the restaurant’s or offer of help. I thought the ones with all the facilities were for over 70. When we went to stay in one for a trial only DH was over 70 but certainly not over 75.
Glad you had a good counselling session but I think you’re right about trying to get a meds review soon ..

HVDY Thankyou. I'm considering going back to previous Urologist. It was he that referred me for a second opinion. I didn't ask for one. He realised my pain had escalated when I told him GP had added Tramadol to the oramorph the previous day. He was happy to do the Distention to look at bladder wall but not Distention where they repeat twice the technique. I just went with him when he seemed to think I might benefit.
Doodle I think this new Urologist is quite a 'top' man in this field though I'm not sure that counts for anything if he doesn't like listening to his patients. I am so confused. I realise that American views on IC are a bit different to 'ours'. The believe that IC symptoms like mine are valid and only around 10% or less have these Hunners lesions (which diagnose IC) though other 90% still have IC. Tbh Im not bothered what hole Urologists dig for themselves or squabble about. I am only reading about a syndrome that is not fully understood. I was absolutely flooded with silent tears at that consultation and he couldn't care less. I had to walk through a crowded waiting room and I couldnt stop crying. He was so strange.