Black Dog 16

Thanks, SweetpeaSue I've had cerise, with just a small orchid on one nail only. I'm going to get my toenails done next week.

GP texted me, asked me to ring about my blood tests from yesterday - they said the kidney function was "reduced" (I'm on various tablets, so what?), and that my cholesterol is high - no, it's 4.5, so fine. Told them I haven't taken statins since December, and I won't be doing so. Steroids cause raised blood sugar levels, so, in turn, raise cholesterol. These people don't seem to know anything.....

HVDY Happy Anniversary to you and DH. Hope you have a good day. Never had nails done in salon either-what colour have you chosen?
I'm thinking too far ahead about bladder and I need to stop doing that I know. Thankyou for your encouragement.
,*Wyllow * Hope today goes alright for you. It will give your confidence a boost when you've done that journey but I dont blame you for being anxious-I hate driving on unfamiliar rds. My counselling tomorrow. She was hoping to get me a further set (12) of sessions. Last 2 sessions were spaced out quite a bit as were 'follow up' sessions so haven't seen her for 3 weeks.
Candy What a lovely pic. Must be great to have caravan so close. Those breaks must be good therapy and much looked forward to. There are side effects with most drugs though these are a bit concerning as they can also affect eyes. Hope your day is ok

Took Tramadol this morning and have felt very nauseous. Probably because taken on empty tummy. Not too bad now so will go to book group though don't really want to. Need a kick up the proverbial.

Hope everyone's day is not too bad.

Thank, Wyllow Best of luck today. Yes, many of us know about "existing and not living"

Just popped in to wish you happy anniversary HVDY.

Love pic, Candy

Sorry to tired to say a proper hello
I've got my map printed out from google map as hospital is in strange place and don't trust my sat nav skills yet. Not nervous about the actual consultation its "will I get there". I used to over rely on Ex who used to be a driving instructor and knew every corner of the city.

Psychologist follow up quick call this afternoon after last weeks crisis call really I'm not "living" just "existing" atm but know others understand this, on which point

Sweetpeasue have you got that counselling?

SweetpeaSue You're certainly not selfish. It's understandable that you feel angry and frightened. Have you Googled IC? There are some websites on there with information. Don't even think about any operation to remove your bladder! I'd think that type of surgery would only be done if there was a cancer there. It doesn't sound as though you've got anything like that. I hope you get to see/speak with your counsellor soon. Keep posting, we're all here. x

Doodle I don't want to take diuretics (I'd like to take fewer tablets, not more), I don't have salt on, or in, anything, and don't have processed foods on this diet. I'll try harder. I hope you do manage to get away for a break - you and your husband certainly need it. Is his shoulder pain muscular, to do with his walking aid?

Candy6 What a beautiful photo. Is that where you are in your caravan? Enjoy .

nadateturbe, ScaredyCat,*EllieAnne*, all BDers - hope you manage to enjoy a bit of sunshine today.

It's my wedding anniversary today (43 years, where does the time go?), so DH and I will go out this afternoon, to get him a couple of shirts. I'm going to have my nails done at a salon (1st time ever, a gift from Son2), and we're going out for dinner this evening. x

Evening all
Wyllow you did well to get up so early. Even if I’ve been in bed relatively early, I still struggle to get up. Just not a morning person I’m afraid. Your garden is beautiful. I’m not a gardener but DH keeps it tidy. It’s only small so at least it’s relatively easy to upkeep. I hope your chat with sis helped to make things clearer for you. I hope you enjoyed your meet up with your friend too. It does us good to connect with people who know us well as I think we can open up more and discuss our inner feelings with ease. Good luck for your appointment tomorrow.
HVDY disappointing appointment with the nurse. It will be the fluid retention Thats causing the weight gain and once that’s dissipated, your weight will reduce I’m sure. I can understand how it makes you feel disillusioned though. Don’t beat yourself up for having your crisps, you deserve a treat now and then.
Ellie Anne I hope your tiredness has eased and your cleaning doesn’t make you feel any worse. Hope you managed to enjoy your garden today,
Sweetpeasue what a difficult time for you. I try not to think too much about drug side effects. I know we have to made aware of them but they are often rare and my view is, if we need them, then we have no choice really. It’s a balance. Not easy though. Please try not to worry about losing your bladder, I’m sure it the very last option and would be an extreme option which probably will never happen. I know it’s a worry but try push it to the back of your mind and concentrate on other options. Sending ❤️.
Nadaterturbe no need to apologise to anyone for not replying personally. It’s not expected and no one things badly of you for not doing it. Post and reply when you are able. I hope your day has been ok.
Scaredycat I started to feel the benefit of my AD’s after about 3 weeks, although I had started on a half dose some weeks before so it may have got into my system a bit quicker. Like I said, they’re not the be all and end all, but do help. Frustrating for you to lose your post like that. It’s happened to me and it’s so annoying.
Doodle I’m glad DH’s legs are improving but it’s disappointing that he’s now got shoulder pain. I hope the pain relief helps him. Lovely to have a cafe close by to visit. I’m so jealous of where you live but I’m glad for you that you can live in such a lovely place and you’re happy there. I hope you manage to get away next week. I’d go for it, you can always come back if it doesn’t work out but I’m sure it will do you both good. The view from my caravan is lovely. I’m going to try and post a photo, I’ve not done this before so 🤞!
Off to bed now. Early start for me again. I can’t believe how quickly my swimming comes around. Time goes too quickly! Wishing everyone a restful night and special ❤️ To all those not personally mentioned xx

I hope you get those few days away, Doodle. Yes, my gardener the last two-thirds of it, its longer. Needs keen gardeners to take over.

Wyllow Thankyou. I understand though I'm between a 'rock and a hard place'. There has to be a reason for nerve damage, so if they can't see any reason (as in they dont know about op complications) then they might miss the full picture. I'm not looking for blame, just want them to get a proper diagnosis. I dont think all consultants and Drs have no moral compass- off course not, far from it. But I do see they are presented with a complicated case. You see I know what decent Drs can choose to do and did do when in a corner.

Hope all on BD and reading have a peaceful night.

Ellie Anne you just don’t seem suited to each other at all. It’s a shame you can’t split your house somehow so you can live separately.
Do you spend a lot of time in your garden? It’s nice to be outside in nature. Do you grow any veg or flowers? Do you have a summerhouse? I can’t remember if it is you or someone else.
Sweetpeasue thanks a kind post to nanny . You can write as much or as little as you feel able to. Sometimes there is a lot to catch up on and it’s nice to read others news but sometimes it’s hard to reply to everyone so just do whatever you feel like on the day.
Having a pain that can’t be helped by the drugs you’ve got is a worry. Have you had any more luck getting an appointment with the pain management team?
My husbands pains are nerve related too in his legs. I wonder if there is a different type of pain relief you could get that would help. I’ve never heard of anyone having their bladder removed so don’t know what’s involved. Obviously not something to embark upon lightly but depends a lot on if it would help you. I would think it would be a last resort. Hope you manage to get to book club.
nadateturbe my DH is fed up too. Just wants live to be “normal again”. So many in this thread feel the same.
HVDY oh dear the dreaded fluid retention. Maybe your weight isn’t moving because of the increased amount of fluid. Do you have any diuretic tablets you could take?
Not surprised you’re fed up. Like DH if it’s not one thing it’s another. He hates being told his BP is too high. He says that always make it sound like it’s his fault when he’s done everything he can to bring it down. Don’t give up on the diet you have done amazingly well and I’m sure one packet of crisps won’t cause any harm.
Do you follow a low salt diet? We do. So whenever we have anything with salt in the weight piles in due to fluid.
Scaredycat yes tums better thanks. DH’s legs are improving. He is shedding skin daily as the new skin grows beneath. Looks a bit like someone with bad sun tan. Yes actually a new cafe has opened right by the river so we can have a little walk and a coffee…….and more importantly use their toilet. 😊
How about you? I know you have a new cafe in town but do you have somewhere to walk where you can stop for coffee?
Candy caravan site fees are very expensive. No point in paying for facilities you would only use some of the time.
Views are worth more in my opinion. What sort of thing do you look out at? We are hoping for a few days away next week. I would love to see the sea again and walk by the beach.
Bit worried about how we will get on bu DH is keen for me to have a break.
Wyllow I have Netflix too and have just paid a subscription to get ITVX without adverts. They have some good things on. At the moment I am watching Broadchurch. I love Olivia Coleman i think she’s such a good actress,
Sorry you’ve been in pain again.
I think we may be giving tramadol another try as for some reason DH has now got a pain in his shoulder (is there no end I ask myself) and paracetamol isn’t touching it.
Is that your garden? It looks beautiful. Really like it. It would be hard to part from that I think. I love the way the path leads you in. Glad you met up with a friend and we’re able to do a bit of painting.
Good luck with your assessment tomorrow hope all goes well.

Hi all.
Oooh I,ve written a long post and guess what- I previewed and forget to send😩😩😩
Candy-your MiL must be so glad of your family,s help . It,s the times when she is at home alone that must be hardest to deal with. I hope she will be OK.
I,m glad you are benefitting from the ADs now- how long was it before you started to feel an improvement?
Wyllow- what a pretty garden you have - it looks so inviting.
Glad you got to see your friend and the walk there was good exercise too.
Your family will understand about the weekend I,m sure. Your GC will love doing a Zoom or FaceTime with you. It’s amazing how competent they are on devices at very young ages. Hope the Alien assessment goes well tomorrow.
HVDY- your check up must have cheesed you off. Can’t believe the nurse didn’t know about the Steroid problem. The surgery scales must have been faulty ! A packet of crisps only has about 10 in them so I wouldn’t worry about them.
EllieAnne- I hope you managed to relax and enjoy the sun today.
SweetPeaSue- you are not selfish . You endure so much and your poor head is full of worry and doubt.The need to talk about your worries is so acute. I hope you get to see your councillor on Thursday.
Doodle,Whiff, Nanny,Sallyyy and everyone hope tonight is kind to youx

thanks for good wishes lovely people - I'm going to try and drive not pay the long taxi tomorrow don't want to let it defeat me since he's just looking not the operation. Friday Barium meal will get taxi tho and its nearer.

Mainly I wanted to say to Sweetpeasue you are NOT selfish, anger is understandable (tho I know it makes one feel angry with the whole world and alone and no hope). I think consultants do want to find an answer btw - but some of them may work from the present and not be prepared to allude to the past. Not just necessarily evasion - but the complexity. Just saying, don't suspect them all.

I'm crossing fingers you get to talk to your counsellor and get a few more sessions on Thursday.

why oh why we think about so many things and it's not fair and.....

Nadateturbe Thankyou so much.Take care of yourself. x

Just want to wish Wyllow3 well for tomorrow's appointment.
Thinking of everyone, and apologies to those who mentioned me for not replying tonight. Back tomorrow.
Hoping for a peaceful night for all.xx
Giving you a huge much needed hug Sweetpeasue.

Wyllow Oh indeed. Good luck with the lump assessment tomorrow. Glad you're able to get a taxi.

If I can just reply to latest posts I will find it easier for today as Ive missed many kind posters.
Thankyou Nadateturbe for asking after me. I hope today has been good.
Wyllow That looks a beautiful garden. I see what you mean that it must remind you of creating it with ex. Something so beautiful to come from a painful relationship. Its good that something lovely 'survived' that though.
HVDY Its rotten having these side effects from the steroids. You've done so well in losing so much weight but the extra lb or 2 on Dr's scales will be water. Probably, because of tummy virus, you lost weight so fast that the weight loss will even out a bit more and might stop n start. Hate Drs scales too. In my pre-admission I asked should I take off my thick heavy coat and biker boots. Nurse wasn't bothered. I was.

Ive been shocked at the more extreme pain levels and the way episodes have been more often. The Saturday when I took both painkillers has frightened me even more as surges of pain just came through it.

I know it's bladder pain (IC) but think it might be something more like nerve damage. The IC pain didnt alternate as easy with feeling no pain.
Keep thinking that if it's some sort of neuropathy - well- what's caused it? Obvs thinking that op.
I worry that consultants wont want to find that out as points a finger. Its not as silly as it sounds.
My GP is never there. Not seen her for at least 6 weeks so will need to go to another. No one knows anything about IC.
I feel so alone. I can't talk to anyone about my pain condition.
Can't plan. Couldnt go to book group last week. Not sure if I'll get there tomorrow.

Ive been so angry. Atm just alone. Ive not wanted to post as others have worse and I feel selfish. Not seen councellor for 3 weeks. Hope to see her on Thursday. Hope she has been able to arrange more reg appts as I'd had allotted no. and she was hoping to do that.
The drug I mentioned has so many side affects so will need to know much more. Dont think GPs will prescribe anyway as Urologist says expensive.
At back of mind about losing bladder because of Urologist mentioning it. Just feel, no hope for release.

Wyllow I only had the one packet, and they were low salt ones. I'll keep on with the diet (no choice but to do so). I hope all goes well with the assessment o the lump tomorrow.

Ellie Anne I designed, it was one oft he things that Ex helped with a lot, it but now a gardener keeps it nice for me. So credit to her and I hope you manage to tame yours soon.

I did paint my front doorstep tho after a sleep and no back pain but low.

Wish I could see family in little bits in an easy way. Got some substantial emotional difficulties to get over there all confused with the moving not moving and having to almost certainly say "I can make weekend 19th May and self judgement about being useless as too tired. It seems like a mountain driving to strange place lump hospital thingy tomorrow (assessment, not op)

HVDY I hate doctors scales! Crisps are not too bad its a good idea to keep other munchies away like you do.

Wyllow your garden is beautiful. Mine is a bit of a mess just now but will try to post a photo after the grass is cut . I’m still tired but will go to sons tomorrow and do my usual cleaning etc.
it’s been lovely and sunny here today. Hope you have all had nice weather too.

Wyllow Glad you managed to see your friend. I must make the time to see my mates more often.

Had my annual check-up at the doctor's (waste of time). BP was "too high" (Steroids cause increased BP, which the nurse didn't know. I weighed more on her damned scales than mine - so got fed-up and had a bag of crisps (thankfully, we haven't got any biscuits or nice food in the house). I'll keep on with the diet, need to make tomorrow better.

Hope all BDers have been ok today. x

Am putting off chat with family! Walked to cafe to meet friend and back and that was Ok so so far so good.

Trainers at the gym have said when losing weight often a lot come off at first then the going gets a bit tougher - good luck! Keep on keeping on...

Wyllow You're up early. Your garden looks lovely. I like the curved path and the trees. Our garden is plain, just patio, lawn and a few shrubs. I hope you have a good chat with your sister and family and make them understand. Enjoy your coffee with your friend.

Good morning to SweetpeaSue, Allsorts, ScaredyCat, Doodle, Whiff, Candy, EllieAnne and others.

I appear to have fluid retention (caused by steroids), as my ankles and fingers are puffy - and despite dieting, the scales aren't moving. Not to worry. Hope all BDers have a decent day x

Am in early as went to bed so early. I was not wise and adequately listen to nadateturbe yesterday and was in a lot of pain and had re trigged my back, couldn’t walk much. I read you careful planning strategy for appointments etc and its the way to go. But as we’ve all said here its hard to let go of that which we used to be able to do. And as you say one thing is how to fill the time when vv low energy and brain power - boredom is partly not being able to see people for that contact. I do watch a lot more TV and am glad to get netflix et al.

Doodle you asked about tramadol and yes I do use that if paracetamol doesn’t work. It does bung me up but I fare better with it than MrD. It makes me a bit high and dreams but has been benign thankfully - glad MrD finds cocodamol works, I’m really not familiar with that.

Ellie Anne thought of you quite a bit (I’d read but unable to post yesterday).It didnt surprise me that when it came to it you didn’t feel like lit. Living in a miasma of indifference as you do at home and then a short release sometimes just brings exhaustion, I know how hard you are on yourself please be kind if you just find yourself just able to relax in your home space.

Sweetpeasue its OK to come in just to share about you tho I know that thought, supposing I miss someone out etc etc x I think it a bit of a things for all of us, “I must comment on everyone”when you might have said upthread all you can for now.

Scaredycat well a mornings cleaning is definitely exercise for that day!

So warm waves for HVDY, Candy Allsorts *Whiff’ and a special for nanny.

I’m just seeing a friend for coffee this morning and the trick it to keep it for an hour.
done some research back wise and short swims are probably best if I go to the gym until I get hold of a chiro or similar as the trainer as the gym isn’t specialised enough.

I had a long chat to sis last night; hadn’t yet told her I’m likely to stay locally for a move and why, she thinks it right especially with CFS: next I need to tell my family am not well enough to go up for weekend of the 19th so’s they can work out what to do if anythings else and not get the children all expectant - time I think with a couple of them to try and start Zooms.

Bests to all BD's. the sun is just rising over the garden which looks lovely atm

Evening all. I hope you are all having a nice evening.
Nadaterturbe you do so well in responding on here when it’s obviously so difficult for you. I’m sorry you can’t be as active as you used to be. I suppose it’s something we all have to face. I’m doing a bit less too. I either get too tired or joints ache afterwards. It’s part of the reason why I’m learning to swim as I think it will be easier on my joints. Im not finding it easy though. I hope your day has been ok.
HVDY you’re so good with your son. It must have been lovely for him to come home to a nice clean house like that. He must really appreciate it. I hope your legs are ok today.
Wyllow good news about the planning permission on your house. Definitely an asset. I hope the psychologist helps to make things clearer for you re move. It’s a hard one I know. Glad you enjoyed quakers but sorry you’ve had to cut down on the gym. Could you still go and do something a little lighter? At least then you’d still be there and have the social side of it. Does your gym do classes? Mine does a lot at varying levels. I hope your appointments go well this week.
Allsorts I’m sorry for your problems. You have a lot on. It’s so difficult when suddenly our lives seem to change. I didn’t cope with it well at all. I wonder what your GP’s thinking about not prescribing AD’s? Surely they have a duty of care surrounding a patients mental well-being? I resisted taking them for years but I have say they have been a turning point for me. They’re not always the answer of course and everyone’s different, but I’m certainly glad I tried them. They don’t take everything away, but they have helped me cope better. I hope your day has been ok today.
Doodle No, there’s no swimming pool on site unfortunately. Didn’t bother me when we bought our van but I have to admit it would be handy now. There’s one on the site next to us but you’re not allowed to use it unless you’re on that site. We did look at that particular site too but the views weren’t as nice and the site fees are £2000 more than ours so I’ll do without I think! Glad you got out for a little walk. The weather has been so up and down hasn’t it? Hopefully it will be more settled soon. Hope you’re feeling better and not too tired.
Ellie-Anne I hope you’re weekend wasn’t too bad and I’m glad you got to spend some time with GC. Tiring though I’ll bet. I hope you are enjoying your week to yourself but sorry you don’t feel motivated to paint. I hate decorating and I think I would find it hard to get motivated too, try and do something nice for yourself and enjoy your “you” time.
Whiff I’m sorry about your estrangement. It must be so difficult. Like others have said, your GC’s will be able to make their own decisions and opinions when they’re older and you can re-connect. Try and hold on to that. Do you have any hobbies or interests? Distraction is a good tool from our troubles but motivation can be difficult when we’re troubled I know.
Sweetpeasue I’m glad you are being referred to a different urologist. I always think it’s good when specialists realise their own limitations and are willing to refer on. I’ve experienced it with my son and it has been a turning point. New knowledge and new thinking. It sounds like whoever it is you are being referred to should be able to help, having knowledge of both problems. I hope the GP is agreeable to the new med too 🤞. I hope you haven’t had any pain today.
nanny2507 I’m sorry your grief is so raw. It must be difficult for you. I’m glad you have your family around you. My MiL is going through the same thing. We are helping as much as we can but realise it’s still difficult for her. Have you been offered any meds that could possibly help you at this difficult time? Reach out to us on here when you feel the need. Sending ❤️

Nanny- such a bittersweet weekend for you . It’s such early days and each day will bring its own challenges. The children will bring you comfort and your daughter will be a great support I,m sure. Don’t even try and hold back the tears do whatever feels right for you. Little by little life will become more bearable- take care of yourself we are here for you.
HVDY- good to hear you are resting when you need to- V andT sounds good . Bet it went down well.
Allsorts- overthinking is my speciality- catastrophising is another. You are certainly not alone.
EllieAnne- A 3 yr old little boy will keep you busy - bet he,s full of mischief. Will you see him this week?
Maybe instead of painting you could just look at colours and carpets and what sort of colour scheme you,d like . Use this week to do things you enjoy both at home and out and about.
Nadaturbe- I too find the phone tiring and it takes me ages to post on GN - and forget sometimes to actually post the message and lose it!!
You were certainly a very active person - lots of people have never done those things. I admire the way you deal with your life now.
Wyllow- didn’t walk today - did some housework this morning and felt done in afterwards so had a rest.
Glad your eyes are better - they must have been good drops.
Good thinking to have the taxis to your appointments especially if you,ve had something done.
Hope you enjoyed your Gym visit and felt ok afterwards.
Doodle- hope your tummy is more comfortable today.
How are DH legs today- the little walks will help him get a bit of strength back hopefully. As you say being outside is such a pleasure. Is there somewhere by the river where you can have a cup of tea?
Yes those Shire horses are so beautiful-I think one was Welsh bred - Annie would be proud of him. The riders control them with their legs- how tired must they have been.
SweetPeaSue- hope you,ve had a decent day today.
Love to all

I'm sorry not addressing everyone right now. Finding it a bit difficult and dont want to put all my troubles down when so many worse. Dont want to leave anyone out. I think of you all.