Black Dog 14

HVDY Great news! Fresh bedding, dim the lights, pillow spray? Nice bath beforehand. Snuggle down! And
🥱😴💤💤💤.

Wyllow I dont know how you cope with all you’ve been through. So much emotional drama and physical problems with the CFS. Wishing a better night for you too
Ellie Anne sounds like this lady is notorious for upsetting people. You did nothing wrong. Hope all goes well tomorrow.
HVDY thank you for your concern. No amytriptyline isn’t strong enough to help with DHs symptoms. I think he’s on the right meds from what I’ve read just not a strong enough dose to keep the irritation away. We are gradually upping the dose a bit to see if it helps. Irritation started tonight about 7.15. Which is earlier than it was a couple of months ago.
I think you’re right about the washing machine, better to have a new one than pay an extortionate amount for repair.
Get upstairs to that spare bed now and snuggle up for a good nights sleep. 😊
Sweetpeasue sounds like you had a good blow through on your walk. It certainly is windy. Hope tonight you get to sleep and the worries leave you in peace.
Scaredycat DHs elbow seems much better thanks. Still tender but swelling and redness gone down. Had lovely chat with my nephew. Not seem him for such a long time. Heard all about his family and pets. So nice to see him again.
Oh dear. I’m sorry the news of your sister isn’t better. Sometimes the road to recovery seems long. I hope and pray she’s on the mend now. I’m so glad your BIL is able to visit. It’s awful not being able to see family in hospital so much better when someone is there able to find out what’s going on.
I realise she’s a long ways away but would you be able to go and visit her?
Hope you’ve had a good day Annie

Doodle I've been trying to focus on the anger and write, then the loss returns, tho done it to a certain extent, ie not avoiding issues inside, on the bias its better to gt them out of the way in the day , but feeling ill and at sea:

I'm truly not sure whether going up to see family on Thursday is a good idea, but will of course talk about stand try to work out what I'm frightened of/dread in order to go. Not going will feel so bad, but atm I rely a lot of the peace and familiarity of home to cope: not sure I feel up to being a good gran tho love them so much.

I did mention the nearby hotel idea and son was a bit put out, but I don’t want to burden them with full picture of my health, my DiL is not brilliant on MH stuff - she got a lot of abuse from my Ex all summer and they have their hands so full with 4 kids and one so disabled. I cant talk about EX with them really, just peripherally, they cant understand my grief, they think “thank god she escaped”.

Thinking of you and MrDoodle in his very considerable health struggles (and hoping you can find your quiet space times just for you too). I just wish the right combination of meds could be found. And elderly Quaker friend aged 89 has RLS but got the right dose of the right drug in the end. but her descriptions very vivid.

Your dear sister, Scaredycat, How you must wish you could "make things better". Troubles indeed seem too e crowding in non her. BiL sounds nice, I’m sure he is so glad to be able to speak to you.
I hope you are able to phone her soon now she is less confused? Knowing how you care will help her I'm sure. How is the AF?

HVDY may you have a lovely sleep, and crossing fingers and toes that things go at least reasonably well for DS and GF. May there be even a bit of healing and mutual understanding.

Sweetpeasue well done there for making it to the Biting Beach. And for a better night. and the more pain free breaks the better!

Ellie Anne will hold you in the light in Quakers tomorrow that it will go as well as it might do.

Bests for all BD’s and those reading too.

Doodle I'm glad you had a nice time seeing your nephew. It's good to keep in touch with family.

Wyllow Thank you. I hope that my son and his GF can somehow have a future together. We'll see. I hope you do manage to visit your son and his wife and see your GC. I bet they miss you.

I'm off to bed - I'm looking forward to it . Goodnight all, hope everyone on BD has a good sleep x

Oh Wyllow You have so much to cope with yourself, yet so much care for others, shown clearly there. You are trying so hard to deal with your feelings about your ex and the separation and it must be exhausting--all the anger and grief.

It is extra energy to give to family when you're trying to keep your head above water so I see what a struggle it would be on Thursday. If you are driving thats an extra thing, hope it wont be too far(sorry can't remember distance without looking back). Perhaps youll be more able to make a decision tomorrow. Your son's reaction to hotel would probably be like my own son. You must do what you think best as I do see the difficulties in managing to get sufficient rest , with your CFS and strain on MH in a family home with 3 children.
I really wish you a peaceful night tonight. We care. x

Doodle I do hope your husband has a more restful night tonight. I know you said his RBS started earlier today. Thankyou for your words to me. I know you will have so many worries about your husband yet you always find time for others. I hope you sleep well yourself.

Wyllow I do hope if you go and see your son and family you manage to have a good time and relax a bit. Staying in a hotel will give you that bit of time to yourself so probably a good idea. It’s a hard decision. Wanting to see your family and the grandchildren but are you in the right place to go at the moment.
I’m sure if DH got the right dose of drugs he would be better. We’ve researched it and I think he’s on a lower dose than he needs. The problem is that our GP prescribed a drug for him which worked brilliantly to begin with but is prone to what they call augmentation where over a period of time the symptoms worsen. The neurologist wants him off that drug and onto another. Unfortunately because he’s a top consultant in London we only get a telephone consultation with him once a year. It’s now been 18 months as DHs appointment was cancelled and put back to May. He can’t just come off the drug the GP gave he has to ‘titrate’ between the two but not really got any advice how to do that.
HVDY do you think your son and his GF are getting on better now they are not living together? Sleep tight. Quiet night 🤫
Sweetpeasue hope you too have a good night. Sweet dreams.

Wyllow ‘hold you in the light of the quakers’ is a lovely sentiment. Thank you. How far is it to your family? Do they really have enough room for you? It sounds like a busy house.
Hvdy I hope you had a good sleep.

I’m very apprehensive about this morning but I’m going anyway.
We has terrible wind and rain through the night with trees down and roads flooded. It’s quiet now but there will be damage.

Yes, go, Ellie Anne. Quakers here at 10.30, better get a move on.

Doodle you need that neurologists advice badly, don't you? I think its a good case to contact him and really push for a telephone or Zoom appointment - tell it like it is, you are both really suffering.

Bit better sleep, more like a trough than a haze. Its a 2.75 hour drive to family, which I don't find difficult: driving relaxes me. I need to phone family and own up, but not till I have the right words and thought it through with help.

Sweetpeasue and HVDY I hope your nights were OK: see you later.

Hi all x

Ellie Anne do go to church this morning my love x

We know Black Dog is read by friends who don’t post, and some are affected by S.A.D. Please remember if weather too miserable for us to leave the house - stand on doorstep for at least 20 minutes, wrap up warm !, and let daylight reach the back of your eyes, no I can’t stand on doorstep but will sit by the French windows. The dark winter days will pass , remember to look for the snowdrops, love to all x

Doodle I think son and his GF are definitely getting on better now that they're not under the same roof. I hope you and your husband had a better night's sleep than you have had recently. I think you perhaps ought to push for a call from the Neurologist - you are both suffering, and need help.

SweetpeaSue How are you today? Are you going to ring the GP tomorrow?

Wyllow3 Hope your Quakers meeting was good
EllieAnne I hope you went to church and ignored that nasty woman.

I slept ok last night (I very rarely sleep all the way through). I was up twice, then got up at 8.30.

Anniebach, Whiff, *all on BD*- Hope you all manage to have a decent day x

Morning all
Doodle- glad your DH elbow is progressing nicely. I do think it would be a good idea to get in touch with the consultant it’s too long to go without his help.It’s making both your lives very difficult and you need his help. Are you able to Email him if you can’t get through to talk to him?
Glad you had a happy meeting with your nephew. I guess he lives a distance from you as you haven’t seen him for so long.
Better news re my sister. Yesterday was her first day being able to sit in a chair. She had a visit from her daughter a Grandaughter which I know would have made her very happy. She is also enjoying her food much more so these are positive things to be grateful for. Thank you for thinking of her.
Wyllow- I understand the dilemma you are in It’s wanting to see your family but not wanting to upset them by staying elsewhere. Also feeling nervous about being able to cope with all the family goings on. The security and familiarity of your home is very important to you as well. However I have felt like that so often before going anywhere but it is always so much better than the “whatiffery “ times I suffer beforehand. But you must do what makes you comfortable both in mind and body.
Bizarrely this last 7 days the AF has stayed away despite my mind being in quite a turmoil. But this morning it’s back with a vengeance!! Just have to try and ignore it.
Hope you enjoyed your Quakers meeting - I too think the expression “ held in the light “ is so beautiful.
HVDY- hope you feel more rested after a better sleep. Enjoy your Sunday.
Annie- we had a big dose of sunlight this morning on our walk but it was freezing . No snowdrops but the other day in a country Lane we saw daffodils out - lovely to see them bobbing in the breeze. So,glad you have your French doors so you too can get the sun on your face.
EllieAnne- Hope Church went well and you were able to enjoy being there among friends
SweetPeaSue- hope today is pain free and less blowy. I,ve never heard the expression “nithered” - very descriptive of being col/tired and battered

Wishing you all a peaceful Sundayxx

Church was fine. The other lady wasn’t there and I had a chance to chat later with a friend who has also had problems with her. If it continues we may get someone outside the situation to mediate as it is not good to have ill feeling in the church. But thank you all for your kind thoughts and I hope you have a good day.

What a lovely post Annie. All very true,

Its enough for me that the sun streams through my bedroom south facing window, as long as it's daylight.

Quakers was good as I started in a bad place and ended up in a better place. I also went to the gym just for a shower but ended up with a nice natter too. but have Discovered Something Important (I think) I have a very stiff scar down my tum as they've been in three times down the same scar and it cuts my tum in half and after 15 mins massage things eased a bit. Well, will take the info to the appointment.

That is really s*d's law, Scardeycat about the AF, just as you get the lovely news about your sis and the visit. So sorry to hear it. I know so little about AF except it can vary like you experience.

HVDY that is not only good but interesting about your son's experience. Quite a few people are even married but choose to live apart. Maybe that will be the best path for now, and not let the "oughts' of convention cloud a "good" choice.

Phew, Ellie Anne..you needed today, didn't you? Interesting she stayed away, but good you had a chance to get strength from a good friend.

Re family - its true about anticipation being worse than the actuality, but last time I was there it was that difficult and I feel more tired an vulnerable now thats I was then. but I am clear I need to really talk it through with whoever might help - what can I do that will make me feel as at ease as possible? I cope with bouts of depression and anxiety with my quietness and rests at home, knowing help is not far away if push come to shove.....I lack strategy to behave reasonably "normally" for more than an hour of two at a time.

DoodleI hope you can get another appt soon with that London consultant. It's awful having to fight for attention in NHS though and I feel v uncomfortable about it. I know everyone is doing the same and Ive never felt able to push myself forward. Just remembered an incident as a child waiting for a goody bag of fruit & choc bar in a huge hall before Christmas. All kids had to go to front as they were handed out. By time I got there there was none left! Lol. Youd think Id learn. 😅 I wonder if a higher dose of this new drug will help the RBS and if GP can recommend this or would you need the London consultant's advice?
EllieAnne I hope you went to church this morning and that woman left you alone. Im thinking it would be uncomfortable but hopefully those friends were around for you.
HVDY Glad you were able to get a better sleep. Youll have to start drawing straws for the beds. Its so good that your son and gf are getting on better now. It will be so much easier for them in future. I hope everything is ok with other son too.
*Annie *Its lovely to know you can sit by french doors and see outside. You must feel looked after there with nice food and I hope, some company. No snowdrops as yet.
Wyllow Hope the Quaker meeting was a comfort today. Also that bowels weren't playing up too badly. It must be so difficult to handle that when out and about. I understand what you mean about staying in other homes, especially when you're feeling v emotionally frail and having the CFS. But you shouldn't feel bad about postponing the visit if you're not up to it. Sometimes there are decisions where whichever one we choose is difficult and even deciding can be so taxing when our minds are already full.
Scaredycat Oh I'm so glad your sister is feeling so much better. Its so good to know she's now sitting up in a chair and is able to see more of her family, however short the visit. Im really pleased for you all. Drat that AF! Hope thats short-lived and you can get a break from it again. 'Nithered' a northern expression I believe. Sounds as if youve some nice country paths near you for walks. Wrapping up is vital though as weather meant to get much colder.

Woke up in early hrs with the same thoughts going through head. Why did 'they' say this when it wasnt true or that when.... It WON'T leave me. How can it when questions go unanswered and theres been much deceit by so many. We got up early, talked about why this or that happened, went out for coffee (decaff, horrible) talked about it and drove back where I got angrier, anxious, breathless and in tears. Bowel bad today. I just dont know whats wrong inside me necause I cant trust a word that's been said when found out untruths by all. Hopefully GP tomorrow. I do need help because Im going mad.
Hope everyone's had a reasonable day. x

Sorry was so long trying to find right words for lost that Ive missed others.
EllieAnne Thank goodness your church visit was ok this morning. I'm relieved for you.
Wyllow It's dreadful you've had to be operated on 3 times! Might I ask was it Laparotomy? I was lucky mine was keyhole Laparoscopy but then again my op through tummy was nothing like as serious as yours was, being cysts removed and 1 bowel adhesion(as far as I know). I'm glad you've found the massaging can help. I'm so sorry for your pain, you've so much to deal with. Wyllow you must feel anxious about it all. I feel such a coward being scared but I cant help it because theyve not been honest or upfront. I hope you can come to a decision about what to do about seeing son but you must think of yourself as you need that time and rest right now.

ScaredyCat It sounds as though your sister is getting on well now. Good. Glad she's able to sit in a chair and is enjoying her meals. She must have enjoyed the visit, too.

EllieAnne I'm glad that woman wasn't at your church. Did you say she'd been to 5 different churches before? She obviously can't get on with people much.

Wyllow I appreciate that the younger generations don't always have the lifestyle of our age group - they don't all get engaged, live together, get married and then have children. I suppose they'll find their own way of going on. I know what you mean about not being able to behave "normally" for long. I'm like that too, but I can usually manage to "put on a front" for a short while. I'm glad your Quakers meeting went well.

SweetpeaSue I suppose I'm Northern (Midlands, actually), but I've never heard the word/term "nithered". The medical professions who have dealt with you haven't ben truthful (I know what that feels like) I hope you manage to at least speak to a GP tomorrow.

It's been bitterly cold here (son and husband sit around the house in t-shirts, bare feet). DH and I went out for lunch (son didn't want to join us) and then got some groceries. Too cold for much else.

Doodle

Ellie Anne I prayed for you this morning and have just watched my own church service on the iPad. At the end I though I must pop in and see if there is news. So pleased to see it was ok. This lady has obviously done this sort of thing before and others are aware. Hope tonight brings you peace and sleep without anxiety.
Wyllow glad that Quakers lifted your spirits and you managed to get to the gym too.
With regards to the scar you mention, have you tried Bio oil. It was recommended to me by a nurse to soften the scar that runs down under DHs ear to his shoulder. It certainly works.
Hope you find a way of talking to your son and DIL about visiting them and they are understanding.
Annie lovely post thank you. I look forward to the day when you tell me you can see snowdrops from the French window. If there aren’t any please get someone to plant some for you.
HVdY some people just aren’t made to live together. It will be so much better for your son and his GF and their child if they can be friendly and amicable about things and support each other with the new arrival. You must feel a little relieved at the situation.
Yes we are planning to try and contact the consultants secretary to see if we can email him some questions which should help. He is the nicest of people but so excellent at his job he is much in demand.
scaredycat that’s better news. Been thinking of you and praying for a more positive report. Your sister must have been so pleased to see her daughter and granddaughter. Sitting up is an improvement too.
My nephew is about an hour and a half away from us but lives in the back of beyond. They have lots of animals to take care of so don’t venture out much and DH and I don’t like driving country roads anymore. Was nice to see him and catch up though.
Sweetpeasue we can play around a bit with DHs meds but the real problem is that he was started off on the wrong one (not really wrong but wrong for him) coming off it and transferring to the other one is proving problematic. We will try to contact the consultant but might have to find someone local to deal with but that means another 9 month wait anyway.
I’m going to suggest something that may be impossible for you to do and I in no way want to upset you but could you set yourself a period like a week where whenever this feeling of anger and frustration about what’s happened to you crops up you just pray and say God help me to get an answer to this and I leave it in your hands. Not with the expectation that it will be resolved because it doesn’t work that way and not to say I’m never going to think about it again or putting the issue to one side but just for you to allow yourself a period where you are not going over it again and again. Giving yourself time to rest.
Sorry I’m not really explain this very well. But on a certain day every week I have a problem that brings me anxiety. I know if I allow myself to think about it too much it will ruin my nights sleep and make me anxious and scared. I don’t so much ignore it as think of it as some kind of self preservation to give myself a break. I hope I haven’t upset you. I can’t really explain what I mean but it’s just something I do myself when things get too much. Hope tonight is a better night and you sleep well.

I use bio-oil, (everywhere, to try and reduce the effect of time on skin...) I just wish that I'd used it daily from the last op!

Re -pushing ourselves forward for help - as things stand in the health services atm, we have no choice but to go against the "pushing ourselves forward".

Look, this is the way I see it. Doodle and Sweetpeasue your current situations are pretty desperate in their different ways. I'm sure both of you, like me, think, "oh, but there are so many other desperate people wanting help, its not fair just because i'm articulate etc".

My answer to that is twofold, one, let the professionals do the triaging. You cannot judge how your situation is compared with others. And secondly, its not "just" the physical situation that professionals take into consideration.

It's how the person is coping with it. If the physical condition is causing serious MH problems too then they need to know that. I suspect that I would have had a longer wait with my tum stuff if I hadn't had a very good GP who sent my referral in with a "serious MH stuff" tag too.
Doodle MrD's problems are affecting you both badly, Its possible better drug options would make a difference to MrD. Call out loud. and Sweetpeasue love you have to present to your GP with the MH stuff.

I'm going to ring my sis about the family visit thing and perhaps my very nice first Ex who is my sons Dad for advice as he know them well too.

I can't see things clearly. I know I should ring my son about it but currently chickening out.

(the scar is a long hard one, tummy button to TMI areas)

HVDY re-nithered--it's so well known here though more used by older generations I think. I believe it's used in Scotland too (EllieAnne?). I know you believe me and have your own experience of Drs mistakes. Yes hope to see GP tomorrow. No pre-bookables allowed here.
Doodle Thankyou, explanation of your husband's meds. Its just an awful situation to be in when he's so severely affected. 9mths is such a long time.
Dont worry, you've not upset me. I do pray that God will help and try to believe. But fly in the ointment is 'try' to believe. Also I've a problem with praying for God to resolve it in His way. How would I KNOW? I mean what IS His way. I thought His way is the TRUTH so why would he not want that or JUSTICE. I could pick out contradictory answers to my problem by praying He will deliver me from my 'persecutors' (not right word) but those who deceive me will not win. Or expect that God's answer is my reward in afterlife. The evangelical churches say 'Ask in Jesus name and it will be given'. Ive done that. I pray every night that He will show His hand. But I can't pray with a heart of complete belief. I guess I hope that will be better than nothing and if there's a God he would understand. Sorry if Ive gone on a bit. I know I will sound a bit like a 'doubting Thomas' and Im trying to be honest with God. He will already see into my heart anyway and know my faith is anything but a full one.
Blimey, Ive just disclosed my private thoughts to all now. Well it'll have to stay. You are so kind and I so appreciate your help Doodle. At the bottom of me I'm thinking that how can God's will be different to wanting the Truth. The Dr that knew about the fallopian tubes filling and spilling into abdominal cavity didnt answer my private letter to her but called me on my mob 2mths later. This was a personal call not one to me as a patient as Id left hospital. She was trying to be discreet. So many things and Ive neen deceived so much and still dont know where my health problems will lead. Its this that scares me nut also the knowledge that Drs van deceive like this that I can't come to terms with.
So sorry for going on. You are a star Doodle and I hope you understand. x

Wyllow Sounds a good plan to get 1st ex involved in helping you to decide on visit. You have such good relationship with sister too. Thankyou for your thoughts on getting medical help. I see what you're saying-- at end of day it's Drs decision to make about a patients access to treatment, and he can only base that on what we tell him about our needs. I hate asking for stuff. My GP told me how many hrs of admin and stuff it often takes ( esp referring me to Gynaecologist out of our area) Not in an impatient or funny way, but...
I had to wait 18mths for my counselling so I'm thinking my GP surgery didnt help when I needed it then but all sorts of things come into play. Covid brought so many challenges.
That scar sounds quite large! Im so sorry youve been through so much stuff healthwise and MH. I really admire your ongoing courage. Hope you sleep tonight.

Sweetpeasue I believe in God and Lord Jesus. Not enough, my faith isn’t strong enough. I have prayed for the same thing for over 15 years. Have my wishes come true no. Not yet. Belief in God doesn’t mean we don’t suffer. Doesn’t mean that all our prayers are answered in the way we want them to be. Sometimes God says yes, sometimes no, sometimes not yet. We don’t know the whys and wherefores. When I suggested praying I did so knowing that you have some belief. I wouldn’t suggest it to someone of no faith. It’s not that I believe my prayers will be answered (I hope they will) but because apart from Hope I have nothing. Nothing else will fix this so my prayers are my only hope and sometimes I just have to hand it to God and hope things will get better.
Believe me no one has prayer harder than me on certain issues and maybe God has helped me. Maybe things would be worse.
I just have to persevere and keep on.
Sorry I’ve been rambling on and that’s just my take on things.
I hope all sleep well tonight and have some peace.

(just for the theologically inclined - skip otherwise!!!!!

Personally I don't feel that "god" is like a person who can deliver justice or otherwise, if I did I can understand the agonies of experience that you describe Sweetpeasue in prayers, or being let down.

I think the Spirit resides in human agency to choose to try to be compassionate - find justice - or the opposite.

Quakers talk a great deal of speaking Truth to Power but practically its probably wise to choose who you take on and when.

Choose those in power that might help after hard lessons had.

However I am minded of a lovely chaplain who visited the wards when I was last an inpatient (physical ward). I told him about how I wished I could let Psalm 23 fill my spirit (thats "walk with you through the valley of the shadow of death") but he pointed me towards psalm 22 which might seem a paradox but wasn't for me, it was a comfort, a recognition of suffering.
Here is a sung version.
www.youtube.com/watch?v=UaJ-moIjATU

What you say about hope is so true Doodle. We have to have some hope don't we? Though Ive times when I think I've given up, it turns out that its actually been only transitory but those times can be very dark indeed when feeling alone. We just keep on in the end. Youve been so helpful to me and you've not rambled at all. Thankyou Doodle.
Hope everyone sleeps peacefully tonight too. We all need some peace from our problems and torments.