Black Dog 16

Wyllow It's hard when those low days hit, isn't it? I'm glad that your cleaning lady cheered you up though. Do keep going to the library, even if mainly to chat with the nice women there. I ought to try to read, but find (since the stroke) that I can't retain things so well. I hope tomorrow will be a better day for you.

It's been a decent day - I went to the day centre (Dh dropped me and picked me up). I still feel shaky, but nowhere as bad as yesterday. It was lasagne, salad and garlic bread, then we made cookies. Son1 called round, unannounced, so that was nice. I gave him a bagful of fish and meat from our freezer, and I'd bought him a dozen socks and a shirt (yes, he's nearly 42 but always broke ).

Hope all BDers have been ok today x

Worst black dog night for some time and extra meds. My internal wrecker at work. All set to ring the crisis line today but didn't. And my lovely cleaner cheered me up coming in this morning.

I had such a lovely walk on Tuesday but should have spent yesterday resting. Or doing one thing nice instead go mundane stuff that just made me feel so alone having to do more than I should be just to keep fridge filled and so on. I'd wanted to go to the gym today as have missed it people wise but will have a PJ day. had a very moving moment yesterday tho: I went to the library the first time since the very last night before Covid. When I was very depressed before that I was reading 15+ books a week just to "not think"and the librarians were so kind and suggesting ideas etc.
I expected all new people as there have been cut backs etc but when I walked in - there they were, lovely women, and 2 of them were retired but missed it so much came in for a Wednesday natter and volunteering helping out. They were so warm it was a bit much, it reminded me off too much of those times and of course Ex.

But I'm not going to be daft and avoid it. My fear of going back to that obsessive reading won't come to be and why miss the lovely people?

I'm sorry yesterday was all dizzy, HVDY, countdown to the end of those steroids!

Candy what a lovely day yesterday with the family. May there be many more.

Sweetpeasue the worry about the procedure is very understandable. Always will be when the medical advice cannot be crystal clear. Just wish as many pain free or lesser times as possible for you. You re certainly making real efforts to get the diet right. (its made a difference to me on bowel side - tho very restrictive, better than alternatives).

Doodle it was heartening to hear of the church and friends time.. Makes such a difference. and you are right recommending watercolour pencils as a good starting point. Mine are Lakeland. Thank goodness MrD has been a little better of late.

I'd be delighted Scaredycat if the anti'd reduction works and it enables you to do longer walks etc. Slowly does it tho but by bit.

Warm waves all BD's. Bit out of it today will try to do one nice thing and accept I messed up and to try and learn (the hard way).

ScaredyCat Glad you're getting on well with the ADs. They help many people. Your GP sounds very good.

nadateturbe My longest-ever 'phone call lasted 6 hours! It was a friend, many years ago. I love to talk .

Doodle Yes, she'll be our 3rd GD. DH's GP reckons she's tried to chase his heart scan results. They won't talk to me about his records, of course. Glad you had a nice day, both at church and then with your friend. Great news about your DH feeling better of late.

SweetpeaSue Glad you got a swab test, hope you get some antibiotics sorted soon. Good luck with the knee x-ray. It's no wonder you're worrying about the distension, it sounds quite invasive.

Candy6 The dog sounds very loved. Labradors are such beautiful dogs, so gentle and cuddly. Your daughter and her husband will love the canvas. What a lovely gift. Glad you had such a nice day with your brothers.

Wyllow You appear to be going through a low period at the moment. I hope that soon changes.

I felt so very trembly and dizzy yesterday that I didn't go out. I missed aqua aerobics. I don't feel safe to drive at the moment, so DH will drop me at the day centre this morning (If I go). Counting down the weeks until I finish the steroids.

Hope all BDers manage to have a decent day x

Hi all, just caught up. Had so many phone calls this evening! Mostly I don’t get any but everyone seems to feel the need to speak to me this evening about one thing or another! Anyway all caught up now.
Nanny I’m so sorry you are having such a bad time. I think your GP should definitely sign you off sick. The so called “compassionate leave” is never enough. I had sick notes off my GP when I lost my dad for as long as I wanted. You need to take as much time as you need. Your GP should also be able to help you with counselling. Thinking about you and sending hugs.
Nadaterturbe your words to Nanny were beautiful and very poignant and resonated with me. Yes, my grandson is tiring but we feel lucky to have him. My DD suffered secondary infertility after having him and despite IVF attempts/miscarriage decided to call it a day and be thankful for what she had. It’s been hard for her but she seems to have accepted it better than me. I so wish he had a sibling and I suppose I’m upset for her but we have to move on and like I said, we are grateful to have him. Hope you enjoyed your time at your caravan. I’m still at ours and hopefully staying until the weekend. We don’t get the opportunity to stay much longer than a few days so are making the most of it.
HVDY yes, like I said to Nadaterturbe we like having GS and the dog just tags along! The dog was the baby before they had a baby and is dearly loved. I’m glad you got an explanation for your shaky feelings. These groups are good I think for information and support. It’s somewhere to go to ask people who are going through the same thing and understand. Lovely news about another GD. Your son sounds like he has a really good relationship with his step-daughter. He’s obviously got a very loving family himself and has given him a good grounding for his own family. I hope your DH gets his results soon.
Doodle glad you got to go to church today. Your painting together sounds lovely. Much more sophisticated than me meeting up with mine and drinking Prosecco! I’m glad your DH is doing well and the iron transfusions are boosting him. My son used to have them and they did the same for him. Much better than taking iron meds. GS’s dog is a golden Labrador. He’s 13 now and we’re not sure how much longer he’s got. It’s my Dd and SiL’s wedding anniversary tomorrow so I’ve had a canvas done for them of DG and the dog. It will be emotional when she sees it but will hopefully become a much loved reminder for them. No, I’m not in work this week thankfully so I’m enjoying some time off. I hope you have a good day tomorrow too.
Whiff you do have a lot to put up with. I truly feel for you. Strange you having to educate the consultant. I suppose with rare conditions it can be a learning curve for them too. I hope the knowledge you share is put to good use and you get some benefit from it too.
Wyllow sorry you’ve had a bad time with BD but sounds like you’ve managed to get through. I hope you manage to get the rest you need so you will feel rejuvenated tomorrow.
Scaredycat I didn’t realise you had lost your son and DH. How awful for you. You do so well helping all on here when you have been through so much, I hope this group has helped you too. Yes, DD and SiL had a good time away thanks. They are reluctant to ask us to do any “extra” babysitting as we help out a lot with childcare for work but I don’t mind when they have something special on. I’m glad your AD’s are helping and side effects have calmed down. That’s the trouble with meds I think but they do say any side effects ease after a while. Your GP sounds quite supportive. I had to contact my practice myself about a follow up but they should be doing these as a matter of course.
Sweetpeasue glad your morning pain eased and hope you get the results of your swab test soon. Hope you get your knee sorted. I know it’s hard trying not to worry. I’m a worrier too and I envy those people who can just push things to the back of their minds, my DH is one of them.

I had a lovely day today. My older brothers came to see me at the caravan and we had a lovely time. They’ve both had very sad things happen to them in the last 6 months and although I wish these things hadn’t happened to them, one positive thing about it all is that it’s brought us closer together and I’m glad to support them in any way I can. Take care all and I hope you all have a restful night xx

Caught up with you all and now too tired to write much except I felt "with" people in their days. I had to do practical stuff - could not be left longer - and over tired and pulling myself out from the afternoon black dog sesh.

Lots of thoughtful words for Nanny was glad to read them. I cant speak to your loss Nanny as mine is loss-but-living-loss but I do agree with Whiff that talking to someone who has been through the experience is what's helpful not a "trainee" unless they are exceptional.

Nadateturbe My DH googled info about watercolours and tried them though found them difficult and prefers acrylics and oils. Everyone must have different preferences I guess. It must be lovely to paint when you have such lovely scenery around your caravan. Yes thankyou, rang GP. I did my post in two sessions so didnt see yours. About the low acid diet, I'm not going to concern myself with the dairy. The diet can be so restrictive that many believe it is not feasible to do it without missing out nutritionally. No Urologist has even mentioned it to me - the ICA is American organisation but thinks it might help if there's a particular food that sets off a flare-up. Ive now found quite a bit of conflicting information about it's validity. I'm going to continue to limit caffeine and some known high acidity fruits.
Hope you sleep better tonight.

Sweetpeasue we’ve done it again. Crossed posts 🤣
Glad you had a better day and talked to the GP. Hope the results of the test come back soon.
Good idea to get your knee checked too.
Made me laugh about your trip to the hospital with the bikes and scooter 🤣. My mum and dad never drove either. We always had to rely on one of dads brothers for a lift.

Went to church today. So nice to be back. Spent a lovely afternoon with friend dabbling with watercolour pens. So nice and relaxing.
Whiff I was so pleased to see your response to nanny. If anyone can understand and support her it’s you. I didn’t realise the Cruse people had such little training. I’m sure, as you say, it’s one of those things that if you haven’t been there, then you can’t understand how awful it is.
A very thoughtful reply.
Do you have a group or contact with other sufferers of HPX. There is always comfort in knowing others are experiencing the same things as you are.
Wyllow yes a return visit to JL is in order. How have you been today.
HVDY so pleased to hear your son gets on with his partners other daughter. It could be so easy for her to feel left out when the new baby comes. Another girl. 😊 will that be 3 granddaughters for you then?
I’m really surprised your DH hasn’t had the result of the heart scan. Have you asked your GP to chase it up. Mine got the results within 48 hours but that might have been because the heart failure nurse met him in the diuretic lounge.
Good news about the support group. Always good to check what others experience.
nadateturbe I traced a picture from the internet and painted some flowers in a watering can. The watercolour pens are really good (mind you I don’t know how long they last). Very easy to use and come with a nice pointy brush end so they can paint fine and thick lines. Got mine on Amazon.
DH is doing well actually. He is feeling better than he has in ages. I think the iron transfusions are giving him a boost.
Scaredycat a lovely post from you to nanny too.
No no baby swans that I’ve seen. In fact not spotted any baby geese or ducks yet either but it must be soon. They grow so quickly. I love seeing them in the river but always get scared one of the little ones will get lost…or eaten 😥
Good to hear your GP is keeping in touch and your system getting used to the ADs. Hopefully, the benefit will get better too.
Glad you got out today. We must do a walk tomorrow although it’s been quite cold and windy here.
Sweetpeasue I hope you made contact with the GP about the discharge. How have things been today?
Candy you sound as though you had a full on weekend. I bet your DGS really had a great time with you. It makes you wonder where they get all the energy from doesn’t it. What sort of dog does he have?
Are you working this week or off for the bank holiday?

HVDY Hope last night your legs weren't painful again. It must ne reassuring to find others with the same thing in the Vasculitis Facebook group,especially realising that tapering off the steroids other have had those same symptoms. You'll be counting the weeks off until you're finished with them.
Whiff I hope you've been ok today. It must be difficult to put up with your symptoms and never knowing when or where you might fall. It must be good to know youll be helping others with the HPX through your Consultant gaining information from yourself too.
Nanny Thinking of you and hoping you had a better night's sleep.
Scaredycat Those were warm words for Nanny from yourself who has suffered so much loss.
I'm glad the side effects from ADs appear to have settled and you are beginning to geel a little better. Ive never learnt how to ski but I can imagine it is a very exciting thing to do. You have been so brave, it looks a bit scary! Your Nan sewing her fingers together more scary though especially hearing about it as a child.
Dont know what the weather is like where you are but here it's been really cold so my sandals won't be worn quite yet.
DoodleI've had the sizing issue happen to me too with items of clothing. It's annoying having to mess on taking things back. I'd have thought with bras it would be different though. My story about needle through finger turned out to have a funny side. Neither mum or Dad drove, hence Dad's scooter. Quickest way to hospital, a mile away, on Dad's scooter. Mum set off first on pushbike and we sailed past her on the way there, peddling like mad! 🤣
NadateturbeWyllow CandyHope you're all ok.

Ive had another decent day painwise after the mkrning pain. Talked to a GP, swab test done. Told him I'd done dipstick test in urine to test for acidity and came across really high leukocytes (which is sign of infection somewhere in body ). Think he's waiting for result from swab test before issuing anything. Left knee really hurts putting weight on it(MRI 5yrs ago found meniscus not in line with knee cap) Never had bother again till now so booking x-ray tomorrow. So most med stuff sorted.
Still afraid of Distention op but I'm not sure I should say anything to Urology secretary as I could be left without any investigative op at all. I wish I could stop worrying about it.

Scaredycat thanks for kind comments. What a caring GP you have. It must be very reassuring that she follows up. It's great that the ADS are helping.
Doodle I forgot about you living near the river. You'll enjoy even short walks there in this lovely weather.
Hello EllieAnne HVDY and Nanny hope you are OK.

Hello Candy it's lovely to have the grandchildren but extremely tiring. Hope you're enjoying a good rest.🙂
Doodle I didn't know you could get watercolour pens. Must Google.
I'm trying a simple watercolour in the caravan and doing an acrylic of a local church in my art group. I just googled Simple watercolour for learners, very basic.
Enjoy your session with your friend. I wonder what subject you chose.
Sweetpeasue no, I meant I am home from the caravan, although I do often have to rest a day or two before a class or appointment. Have you rung the GP about your new problem of discharge , I think you need to.
The diet does indeed sound complicated. I wonder if you could use something like almond milk.
HVDY 21/2 hrs on the phone is definitely not a lazy day! I don't think I've ever talked that long. I didn't realise your husband was so ill. I hope you get some results soon.
Doodle Thats disappointing about the bras, such a nuisance too. I've noticed the same thing in M&S and not just with bras.
I think we all notice a decline in abilities suddenly as we get older, but I've a feeling the pandemic made it worse. Of course your husbands fall will have contributed to his decline, poor man. I'm sure he's fed up. I hope better days are ahead for you both. I meant to say about your bandage, we find all the ones in our local pharmacy are very tight. My husband buys online. He has arthritis in his wrist.
Whiff I'm sorry you are still grieving so much. Your dear husband would want you to be happy. I'm sorry counselling was unable to help you.

Wyllow- Great walk for you yesterday and a happy meeting with your friend. Something like that can give you such a lift can’t it. How did you feel physically after walking?
We walked this afternoon and it’s so hard to feel so slow and shaky after being so active all my life. Can’t believe I used to Ski and do lots of other sports. Sorry you went down in the afternoon but you do seem to have got your head in a better place with some good and positive thinking. Hope you are having a good day today and that your operation wound is healing nicely.
Nadateturbe- good final thoughts for each day- there is always something,however small to be thankful for. I love what your counsellor said about your Mum - what a beautiful thought.
Nanny - I wish there was something I could say to take away the pain. It’s such early days for you and you have not had enough time off work to be able to see after yourself properly.
My daughter went back to work too soon after we lost both her brother and my DH together- she had to come home again. I carried on but suffered years later.
Whiff is right - let your emotions out- wear your pjs - scream and shout if you feel like it- cuddle your pets- but please talk to somebody if you can. Sending you a quiet hug.
HVDY- your family always sound lovely- it’s good to hear how you all support each other and have good times. I agree with you about falling out - life is too short. The new baby will have so many people to love her.
Glad the Facebook Group is helping you. Reassuring to hear that other people with your condition have been the same - 6 more weeks is a long time but hopefully each week will see an improvement. The baby will be here by then.
SweetPeaSue- Glad you got out yesterday - Auntie must have been pleased to see you. What a treat to feel well enough to have a trip to the shops- hope it’s warm enough to wear the sandals soon.
Such a shame you then had the worries and Whatifferies later on.Your mind gets no rest as so many thoughts flit in and out all the time it’s so tiring for you.
Hope you got some help for the Green discharge today- it sounds like it needs attention asap.
Doodle- the canvas painting sounds interesting- it would be nice to see when it’s finished.
My Nan sewed her fingers when she was young- when I was little that story horrified me!!
What a strange thing with the bras- another trip now to change the uncomfortable one. I hate wearing bras and do so only if I have to- I always feel like they’re strangling me.
How is your wrist today? Is DH still being chef?
Are there baby swans on the river yet?
Candy- hope your DD and SiL enjoyed their break away. No wonder you feel tired now though it’s amazing how much one little boy can do in a day!! Hope you,ve caught up a bit with sleep.

My GP texted me today to ask how I was getting on with the reduced ADs. I expected a call but she is very kind and at least I didn’t have to wait in all day!! They are helping and the side effects have calmed down - thank goodness.
Take care allxx

HVDY2 glad you found that Facebook group at least they can answer any questions you have and share experiences. I know because of the Hyperekplexia Society Facebook page and everyone's willing to share their experiences I know understand why my body did and does what it does. I am no longer weird I have HPX and no longer alone. I am 65 now and know I was born with this condition. There is no cure as it's a mutant gene in the brain receptors. But having my diagnosis means the world to me but still have to explain it to people as it's rare. Little is written about it and what is sounds dismissive . It's called a startle reflex and triggers falls. But it's more complex than that. Because it's rare what I am learning from others with it I am passing on to my neurologist as he hasn't any patients with it . He is learning about something new. Which does make me smile I am teaching a consultant neurologist who specialises in abnormal body movements with a string of letters after his name.

Keep in touch with your group and you can learn from eachother. Like here you are not alone .

Hope everyone is having a better day.

I've joined a Vasculitis group on Facebook, and asked on there about this shaky/trembly/unsteady feeling. A couple of people have said they've got that, and it started when the steroids were being tapered off. Good to know that. I can put up with another 6 weeks (although I haven't got a choice) if I think I'll be back to "normal" at the end of it. Hope all BDers manage to have a decent day. x

Nanny2507 It's very poor of your employers to only allow you 2 days' compassionate leave. (My DH's place allowed him 3 hours, on the day of his mum's funeral). It is still early days for you, and things must still be raw. Have you got any friends who are widowed, who would know how you're feeling?

SweetpeaSue The discharge needs sorting out. You need antibiotics. It's bad that the consultant's answerphone is full, so I hope you manage to get through ok.

Doodle Son2's GF's daughter is excited to be having a sister. She gets on well with Son2, sent him a Father's Day card last year, and asked him to go to Parent's evening at school. Her dad is very hit-and-miss with his visits and doesn't pay anything to her mum. Strange that 2 bras of the same make can be so different. Annoying, too. Hope you get the black one changed.

Wyllow DH has just been signed off work for another month (still not diagnosis/results of heart scan), but he does a little bit - he mowed the law recently, puts the washing on the line, that's about it. Hope you had a good rest last night.

Candy6 Children can be tiring, can't they. Good of you to have your GS and dog. You'll enjoy the rest now that they've gone home.

nadateturbe, ScaredyCat EllieAnne, Whiff and all - hope you're all ok. x

Nanny I'm so sorry for you. I wonder would the doctor maybe give you some sick time off work. It seems like you need it. At the very least you need to speak to Cruse or another counsellor.
I know it's not the same, but when my mum died, my counsellor said, at the minute your mum is in front of you, but one day she will walk by your side. It's very early days and your grief is very raw.
I too will hold you in my prayers.

Evening all, sorry not been on for so long. I had some very busy days last week what with work, supporting family, childcare etc. we finally got away to our caravan on Friday and had GS plus his dog for the whole weekend so that DD and SiL could go away to celebrate their wedding anniversary. It was lovely but very full on. GS is a very active child and wants to be ‘doing’ all the time. We try, but tires us out. He went home last night so we’ve been for a nice walk today, then I had some admin for DH’s business that I just couldn’t put off any longer and am now exhausted (again!). I’ve read all your posts and am all caught up but I’m so sorry I can’t respond personally. I’m sorry for all of you who are in pain, both physically and mentally; stressed grieving or just plain fed up with things. Sending lots of love to all and I’ll be back on everything tomorrow. You’re all super supportive of each other and it’s such a warm, caring little community that I’m grateful to be part of. Love to all and wishing you all a restful night xx

Nanny I assume from your post your husband has died I hope that I am reading that correctly. I would never ask how a widow is as I know exactly how you are feeling. The moment your husband took his last breath you lost half of yourself and you will never be whole again. I never use the word soul mate as I am an atheist. But went your husband died you lost not only your husband but your present and future. And that's hard to face on your own. The fact your work was so unfeeling to give you so little time off is ridiculous.

Your husband would want you to look after yourself. It's not easy and even when you eat you will find you lose weight . I call it grief weight loss. Your body is so consumed with grief it effects not only your mental health but physical health as well . Grief is a physical pain it's your bodies way of trying to keep you from doing to much. It's trying to protect you both mentally and physically. You will be going through all the stages of grief but not everyone goes through in the same order. The loss is bone crushing,all you want to do crawl away and hide from the world and cry . And you cry so much your chest and eyes hurt . Then the rage and anger hits you and if like me I didn't realise that would happen. I felt I was wicked being so angry at my husband for dieing and leaving me to face the rest of my life alone.

If you want to cry,scream ,shout ,swear at your husband or hit a pillow do it. And talk out loud everyday to him I promise it will help . I have shouted at my husband and blamed him for my house sale falling through twice and the estrangement with my son. I have even blamed when I can't open a jar. But then I see him with that stupid grin on his face.

You are in the very early days of grief so and there is so much to deal with only deal with what you need to now . The rest can wait. But you must take care of yourself. You say you have pets and that will give you an excuse to do things. Animals are very attune to their owners feelings and I hope they are giving you comfort.

I can't say life will get easier it won't. The loss gets worse . My husband died 19 years ago and I have learn to cope but the grief is worse and still gets overwhelming at times. But I have learnt not to fight those feelings. Took me years but I was only 45 when my husband died our children where 20 and 16. But still had both parents and mother in law who needed me. So I did the worse thing possible and I pretend to be brave and only broke down at night in our bed . I would hate you to suffer like I did . I was a fool.

Someone mentioned Cruse they may help but only if the person you speak to has been widowed as only a widow can understand how you are feeling.. Someone who has done a course has no idea what it's like. I speak from experience my children wanted me to a bereavement group I did it for them but it was useless. The leader had done a 12 week course and was married and the next person to my age was a man 68 the women where in there 70-80's. They left home 2 years after their dad died it's what I wanted . They had their own lives to life but I couldn't. I spent from 2004 until 2019 existing and only by moving I now live my life to the full.

But my grief is still as raw as when my husband took his last breath.

Nanny read the does it get easier thread on the bereavement forum. You will see you are not alone.

Hopefully I have got your post right and you have been widowed. If not sorry for rambling if I got it wrong.

Of course that all you want Nanny I so wish someone can talk to you who can help.

That sizing thing...is just weird, Doodle. You wouldn't expect it from JL and it will have to go back!

I agree with Doodle Sweetpeasue about the discharge need ing attention asap in case it needs anti b's .

Glad it was an easy going day HVDY. DH seems to be doing more than he did when he first stopped work.

Nanny Ive only just realised you had posted when I daw Doodle's reply. I wish I knew what to say. Words feel futile. Like Doodle it's astonishing that you have only been allotted 2 dys compassionate leave. I'm really shocked at that. You will no doubt need those holidays yoube had to give up. I so hope you can get some help from Cruse you need someone to listen to you - someone who really understands your grief and pain. You sound worn out. I am thinking of you and so hope you get the help you need.x

HVDY so nice you all get on. The 12 year old sibling will be excited to have a brother or sister too. Does she get on with your son? I’m just going to paint some flowers I traced onto a canvas. Have no talent but I enjoy doing something.
Hope the consultant gets round to phoning you soon.
Sweetpeasue I hope you’ll have another try to contact the pain people tomorrow. It’s not good they have so many unanswered calls.
Yes I will be careful with my machine. Keep my hands out of the way. I can set it to run very slowly so should be ok.
Hmm yes I think that discharge needs to be checked asap. Must be some sort of infection I would think. Get through to the GP early to make sure you get an appointment.
Don’t give up hope. You had a good day most of the day. Something must come of these appointments to help you.
I went to John Lewis today. Bought 2 bras, exactly the same except one black and one white. The white one is a great fit and comfortable……..the black one I can’t breathe in and feel like I’m being strangled. So much for the sizing!

HVDY Rotten having a night with your legs being really painful. I hope tonight is better for you. It's lovely that your son's girlfriend is so nice and you're all getting on so well. Makes such a difference for all the family to get along and sounds like your GDs sound delighted. Good you've had some nice chats today.
What's strange about this IC fiet is that neither Urologists have remarked on it. Only realised yesterday that dairy foods too are acidic so that would mean stopping my porridge too unless just made with water and no cheese. Think it's far tol restrictive to be healthy and some extremely acidic foods (lemons) have opposit effect on urine acidity. Fed up with it all. Head's going round with it.

Dear nanny I wish I knew what to say to comfort you. You are grieving and I’m not surprised you find work difficult. Are they being kind to you? Do you have any family or friends nearby to talk to? Perhaps you could ask the GP for something to help you sleep. Also maybe contact some group like Cruse. They have a helpline and can give support. You need to talk to someone. I cannot believe you only had 2 days off from work for compassionate leave. That’s ridiculous. Holding you in my prayers. Please try Cruse and see if they can give advice. x

HVDYHope you've been ok today. It must feel awful to have all these side effects and not be able to get any feedback from the consultant. I dont know if you managed today. Sometimes you just want to forget about it all as it can get on top of you. I rang Dr's secretary (Dr been put under for pain management-found this out by ringing another pain management Dr) twice this afternoon but I couldnt leave a message as recorded message said answer phone was full so call back another time. 😡.Thankyou for your words of encouragement.
Nadateturbe Do you mean your staying home for 2 dys to reserve energy for art? Crossed fingers for you that get there. I only climbed H that once and knees killed next day. Cant believe that I felt old that day because I'd turned 40! 😅 The feeling I need to pee is there on and off about 50%of day and drives me mad but part of IC I think. Doing without choc was the main worry for me. However dont think this IC diet is all it's cracked up to be. Looking at acidic and alkaline foods today and see lemons on alkaline list. Not understanding I looked into it and acid in doesnt mean acid out(urine) as after going through kidneys it ends up making urine alkaline. Been really confused by this. I do know caffeine is diuretic but very tiny amount in milk choc. And you weren't rambling it was good of you to take interest.Still using Rich Tea bisc tip.
WyllowI'm sure the meet up with friend did the world of good. Sorry your mood dipped later and hope your night isnt too bad. What you say about so many of us having such changes in health is true it seems to have such a big impact on our MH too. I had a better night's sleep than usual which was good even though still had frequent loo visits. That good long walk must have built your confidence a bit. So pleased about back behaving.
Doodle Its amazing how you are managing to not let wrist hinder you and I'm glad you are managing some sewing. It must be difficult. Be careful with sewing machine though. I once used an old treadle machine when I was 15 and needle went right through my finger so trip to hospital on back of Dad's scooter! The urine retention is horrible though sometimes there's not much to pass but it feels like there is as bladder feels bloated. However it seems I now have yet another problem.Over last 4 dys developed green discharge (never in my life has this happened) so will have to call GP tomorrow. Your poor DH has had so much over the last few years. Hes an inspiration for me as he keeps plodding on.
EllieAnneScaredycat**Whiff**Candy**Nanny Hope you are all managing.

After painkillers this morning early, pain alleviated v quickly and we took aunt out to supermarket and cafe. Afternoon went out to M&S and Next, bought sandals. Felt normal as pain stayed away. Realised 'new problem' worse when got home so mood dived. Dont understand why I should have this. Thinking all sorts and wondering if I sufferef a Pelvic Inflammatory disease after 'that' op when had such bad uterus pain for 18mths afterwards. Still have to sort out if I'm down for op or another consultation. Trying to keep mind right.

Take care everyone and hope you all have a peaceful night. x

nadateturbe Glad your back has been easier. Yes, we're a close family, all get on well together (can never see the point in falling out). The Rheumatologist was apparently going to ring me last Wednesday, but so far hasn't. I'll just keep on with the tablets (I take 6 daily this week, they're reducing weekly).

Wyllow I'm glad you've had a better day today. I haven't got Cellulitis - had that many years ago, then a few years ago I had it in my face - the rash isn't hot or raised. It's Petechiae, caused by Vasculitis. Like you. I think most of us on BD are having to accept our limitations nowadays. Not easy, is it?

Doodle We really like Son2's GF. We'll pick her (and her 12 year old daughter) up and go somewhere. Our girls are excited, as their cousins on their mum's side are in their 20s. Eldest GD hopes baby will arrive on her birthday (4 days after due date). Watercolour sounds nice. My dad used to like that. What pictures will you do?

SweetpeaSue, ScardeyCat, EllieAnne and others - hope you're all ok.

It's been a grey day, and I've been very lazy. DH's sister rang me, and we chatted for 2 1/2 hours! Son2 rang for 1/2 an hour, and 3 friends texted me. (we all text regularly) I'm very lucky to have nice people in my life. Decided not to ring the hospital (no point), but after a night of my legs being very painful, they're ok today. DH just gone out to meet old schoolmates, so I'm having a couple of vodkas. Hope everyone has a relaxing evening x