BLACK DOG 26

Thanks for comments about MS. I didn't know there were different kinds HVDY, must Google that. I don't want to have a lumbar puncture. Firstly it can be painful and cause long term effects. I have problems with my upper spine especially in my neck, which I am controlling well (cervicogenic) so I don't want to risk it. Also the neurologist last time told me the treatment can cause side effects and he wouldn't recommend it at my age. If I suffered a lot of pain I might consider it.
Researchers at Nottingham University have developed a way to diagnose MS by MRI to save people having lumbar puncture, which will hopefully be adopted in the near future.

Hi all
Sorry - yes I had my appt at the clinic with a truly delightful person . He put me very much at ease and did an examination of the problem which is the inner bottom eyelid. He said it was not anything to worry about and called it by a very long name which I couldn’t say so said just call it little bumps!! They are fluid filled and it won’t matter if they leak. He wants to keep an eye on them so said to see him again in 3 months but go back sooner if they cause any problem. Phew!!
Doodle - I didn’t mean to forget you! Sorry.
Your words are both brave and sad at the same time. To acknowledge that acceptance is possible will give you strength . You are doing all you can to get out and enjoy this new way of life- hopefully a different kind of contentment may come one day. You are a special and loving person.
Goodnight allxxx

Doodle It's what families do - try to support each other. We all do that, don't we? DH must have had sleep apnoea for many years without knowing, so I suppose he's no more at risk of something than before he had the CPAP machine. He says it makes his mouth dry (a logical person would take a glass of water to bed, but no). I leave him to get on with it. Jaffa and I love the space of a king-sized bed, DH is in a double. You must, of course, miss your husband terribly. Nothing anyone can say or do. I do think of you often. You've got a good family and friends, although I realise it isn't the same.

nadateturbe I was awake quite a lot in the night, then at 6 (to let Jaffa in the garden - left the door open for him and went back to bed - and 7am before I finally got up at 8 (very late for me). When DH and I used to stay in hotels on holidays, people in the next room used to bang on the wall because of his snoring!

Wyllow3 I'm glad your appointment went so well. Cutting down/out some medication will surely be beneficial in some ways. Go steady. The photos are great. Stunning scenery. How lucky we are in the UK to have such greenery (all the rain we get). You're so right about simple pleasures in life - birds chirping, the fragrance from flowers, blue skies, quiet parks.

Hope ALL BDers have a restful night x

Sweetpeasue that was such a disturbing night. It sounds like your husband was having a panic attack and couldn't breath. No wonder you felt angry. I hope the trip to Tarns How made you both feel a bit calmer and relaxed. It looks like a lovely area. Even if you can't walk far, just being out in nature for a little while or sitting looking at beautiful scenery can distress you, and help you feel happier. I hope tonight is better.
Lovely photo.

(BTW, MfW means meeting for worship)

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I’m sitting in my car high up on a High Peak ridge: I needed to get out and ‘fly’ in the car

Earlier when I read all today’s chat I was sitting in a quiet and very comfy Italian cafe restaurant. I am due to meet a Quaker friend there tomorrow.
I was very nervous this morning and got in an unexpected techie tangle over paying u tube to go advert less. You get 2 months free then it’s around £12.99 a month, worth it for me.

The appointment went extremely well. The information I had given and concerns raised paid dividends. My meds suggested changes all accepted but longer thought and a plan developed for reducing the diazepam, which is superb for temporary use. Please don’t use my problems with diazepam, anyone, frightened of using it an emergency. I mean, people use it when they’re frightened of their flights.

As regards advice on Ex, after discussing these last 5 days when I told here I would like to contact him for safe coffee space, on the understanding it was a ‘no blame’ discussion and I would walk out if it became one, I got the go ahead without reservation.

These five days, after all, I’ve had so many emotions, I’m still processing it, but all changes have been for the better. But the session today was mainly processing all the feelings I’ve been having and most valuable for that.

Today was a very rich and full day to read indeed. Could say a lot to many.

I was struck nadaturbe (sp?) by how long your post was today. I pondered, if you are unable to see friends in real life, just as I took advantage of black dogs to have online friendships, when ‘confined to the house, it is a way ahead for you too. What I am going to say is just speculation.

It’s from my experience, that when you cannot access the big things”, my way forward was to try and find sustenance and even pleasure in the small things. The view from the caravan.
People watching if you can manage a café.
If you cannot actually do something, try and imagine it with pleasure not pain. Your painting is a huge example of this, and you are ahead of me on that. I haven’t started sewing or painting yet.

It’s a hard road.

I even imagined something that has helped me that may not work for you at all. It’s because I have had such a good carer, that I know the value of somebody else just driving me around, saying very little looking at the trees, smelling the wind talking about ordinary things. But I’ll stop there.

* Scaredycat* I’m just hoping and praying that your appointment will go well, just waiting to hear.

Candy I found it hard to slow down too, and I just make myself exhausted. When I know an answer to this, you will be the first to know.

Nearly all my adult life, * HVDY*, I have had a separate bedroom. Sometimes I’ve slept the people I’ve been with, but to be honest, not very often I’ve been with people who like their space and to choose when to come together. Therefore, it seems just normal to me!

I’m still sat in the car . I had a meal in the café, so I’m not hungry. Time to head home, I’m tired, I had a long but gently yoga session after the appointment.

Doodle I feel so sad for you, missing your DH so much. Giving you a big hug.x

.....posted too soon. A snoring partner is a real problem. My son kept us awake and now his poor wife suffers. I'm sure lack of sleep has affected her health. An operation didn't solve it. Hopefully they'll have a spare bedroom soon. It's good you have one.

HVDY aqua aerobics, ironing, no wonder you fell asleep!

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Caught on camera this duck enjoying its reflection.
Vanity, vanity , all is vanity.😂

Dear Doodle I can understand what you say about ' contentment'. How can you ever feel true contentment with your beloved? I think I'd feel the same. I hope, though you will feel the joy of knowing others who can share with you their experiences of knowing that special bond and that loss. Sending a warm hug.

Candy Missed your first post, sorry.
I do hope you get your sleep apnea sorted as its so debilitating to wake unrefreshed . I think , after a while it catches up with you and can make you feel quite ill.
It's nice to get away to your caravan and break with routine , though it's nice to get back home too. We all need a change now and again don't we.
Whiff You're so right about this thread - we come in as strangers and become friends and share our thoughts, worries and anxieties. It is like family. You must be so relieved to get your ramp put in - it should make a huge difference for you. Lovely for you to get away to see your relatives - you never let your disabilities get in the way. So brave.
HVDY Oh I see your DH isn't always using the CPAP - does he find it very uncomfortable? I've never seen one so not sure how it's worn. Good idea to adjust the beds! Thanks for explaining the 'headbumps' thing- sounds so cute.
Nadateturbe Oh I do feel for you ,your illness stops you from doing so much. What a long post - it must have taken a lot out of you. My own condition is nowhere near as bad as your own but I do understand the complete exhaustion at times. Sometimes the very thought of doing anything is overwhelming- 'thinking' can exhaust. I wonder if it is MS . I can understand you wanting to find solutions and answers. Oh, yes - a magic wands. Your Dr sounded nice.
Plum bread is very much like a spiced 'tea loaf' . It's made by a bakery "Brysons' in Keswick. In their cafes it's toasted and buttered. We had ours in a Brysons in Windermere. ( Not meaning to advertise!)
Doodle I hope you've been OK. Thankyou for caring. We are having as good a time as we can in the circumstances but it's hard. Woke in the night to DH shouting ' Get it off me' - he was half asleep but awake and he said the weight of the cover was suffocating him , yet he had no cover on him. He remembered this morning though. Beginning to feel quite angry now about how he's been left like this. I will use that feeling when we return. 😡
Wyllow You must have been so fit to ride everywhere on your bike . Hope there are many beautiful bike rides ahead for you. I'm sorry there are such sad memories of certain times with parents. I'm sure you're not alone with those feelings. I'm one of 3 sisters and it's amazing how differently we remember things as children or teenagers. Middle sis is so like my mum- quite feisty and strong willed- . My mum understood her so well - less so myself I think. We can still love , even if we can't understand our differences iyswim.
Do hope your appt with psychiatrist went well enough today.
Scaredycat You must be looking forward to getting your little cat friend - and hopefully some headbumps too.
Thankyou ,we have had a nice trip to Tarn How's today. Not sunny but thankfully warm and dry. Weather much better than the weekly forecast ( shhhhh!)
EllieAnne Thinking of you and hoping you can make your friend's funeral. Shows how much your friend's DD has appreciated you supporting her mum with all her troubles. It's so nice she can talk to you.

After late start we drove to Tarn How's. We couldn't walk far but it was so beautiful and we'd go back there again next time we come here. We both realise it's best not to come in the summer hols though-- so busy. Some photos today if I can send of Tarn How's.

Ellie Anne how kind of you to talk to your friends daughter. Must be hard for you. I know she had a troublesome son was the daughter ok? You were a good friend to her mother.
HVdY I can’t but help think what a big benefit both you and your Dh are for all your grandchildren. You are there for them a stable base no matter what is going on. Your son is a responsible father too. Hope the school can help.
Yes our church group is quite strong. There are a number who go every week and some others who come when they can but all are welcome and we have two new young men (always useful when some heavy lifting is needed)
Is it dangerous for your Dh not to use the CPAP machine?
Whiff that’s a heavy duty ramp. Nice and sturdy looking. Glad it’s been fitted for you. Well done for your e excise classes and your travels. Nice to see you back here.
Candy thank you for your kind thoughts. I am doing the best I can to get out and enjoy things and whilst acceptance is coming, contentment I will never feel again. To me contentment means being totally relaxed and at peace. I will never be that again until I am with my beloved. I accept where I am but as they say in Star Wars, it’s life Jim but not as we know it. Hope you’ve had a lovely stay in your caravan. Cleaning it was always the bit I disliked most about ours 🤣
nadateturbe I’m sorry this fatigue is continuing. It might be worth confirming it’s not MS because if it is perhaps they can help. How many years have you been like this now? Don’t give up hope, it can improve. Love and hugs.
Scaredycat plum bread sounds delicious. Never had any
Have you had your eyelid looked at yet. Hope all is ok.
wyllow Im glad you’ve got a good friend to talk things over with no matter what age. Having someone who understand is vital I think. I am lucky to have people like that in my life.
Of course my best friend and companion, the one who knew me inside out is now in my heart soul and mind. I miss him every second of every day.
Sweetpeasue I hope you’re having a restful time and things are ok

Whiff Glad you got the ramp fitted. It's probably made things a lot easier for you to get out. I remember the long palaver you had to get PIP. Hope you're keeping well.

Wyllow3 Hope the appointment went well. You've been getting on brilliantly recently.

nadateturbe So sorry you feel so unwell such a lot of the time. Whether you've got M.E. or MS, the symptoms would be there, but I'd imagine more could be done for MS, in the way of drugs and help groups. There are different types of MS, as I expect you know. I hope you managed to get to your art class.

ScaredyCat My husband chooses not to use the CPAP a lot of the time, and he sleeps in the 2nd bedroom when that happens (I had years of listening to that row near my ear!). That room is at the back of the house, and the beds in both rooms aren't against the adjoining wall, so I don't usually hear him. How's your day been?

How's everyone been today? I did aqua aerobics, some ironing, then fell asleep for an hour . x

Scaredycat thanks for explaining plum bread. Did you have your eye appointment or did I get that wrong?
And yes, I'm doing paintings of the Mournes.

Hi all
HVDY- How does your DH manage on nights he doesn’t use his CPAP?
I do hope your son’s meeting with the school proves beneficial for your GD. She is obviously a good kind girl at heart - she will be pleased with her gift.Ah she’s in a difficult position and probably wasn’t too keen on the truanting but the bullying is so intimidating for her.
Hope Jaffa enjoyed his cudddles.
Whiff- so nice to have you here again. That ramp must have made your life a bit easier- it looks a good job.
Llandudno is lovely isn’t it. Does your brother live near you?
You are a marvellous example of tenacity and making the most out of life. Take care Whiffx
Candy- I do hope you get more help from the better GP. Tiredness like you describe is very debilitating and there must be a reason for it. It’s good to have you here again.
Although you,ll miss the caravan I expect you’re like me and always feel happy to be home.
Nadateturbe- I learnt a long time ago that dust will still be here when we are not!! Much more important for you to seize the good days and do the things you both enjoy.
Plum Bread is sold in a supermarket in Keswick in the Lakes. I don’t know but think it might be just local to there.
What a beautiful spot your caravan is in- it must be very inspiring for photography and Art. Hope you got to meet your friends..
EllieAnne- hope the4 is no clash of dates- it usually takes a while to arrange a funeral. Your friends Daughter must have been so glad her Mum had such a good friend in you. Good for her to be able to talk to someone who knew and loved her Mum too.
Wyllow- your new friend sounds somebody whose company and counsel you will treasure.Not often we acquire a new Brother is it. Love your Croc friend too- she was a find.
Your day yesterday after its little slip up was full of interest and I love to hear you talk about ‘tired contentment’ . That’s how it should be.
You explained about your parents and people from your past.
Enjoy your friendship and don’t worry about the future. I think it has had a calming effect on you.
I hope today’s MH appt went well. You have put so much work onto it and have made huge strides over the last few weeks.
SweetPeaSue- hope you are having a lovely day togethers

Love to all those mentioned and those not.

Good evening everyone. I so wish Ihad enough energy to finish when I start posting. And scrolling actually makes me lightheaded. I'm a bit useless at staying in touch, with RL friends too.
I went to the GP today and told him how much worse the fatigue and brain fog is, and how limited my life is. He asked what I would like him to do, had I anything in mind (which is nice I think) and I said, Yes, wave a magic wand and make me normal. But seriously he spent ages going through my record and consultation/tests reports, we were there quite a long time, and the only thing he could come up with was to see the neurologist again and make sure it's not MS which the neurologist thought it could be, but I don't see the point. it won't change the symptoms. My life is so limited now. and I feel quite faint a lot of the time. But he doesn't think it's heart related, i.e. the mitral valve thing hasn't got worse 9had aheart monitor recently) If it's not MS then it's M.E. and he said sadly there's nothing they can do. I know there's no comparison, but I have watched a film called The Sea Inside and I can understand how the main character feels.
Moan over! Hello again everyone! And good morning (I started this last night)
HVDY, I'm glad your dizziness is eased, I hope you get the pills sorted, you've been on so many different ones, I hope it's only a matter of upping the dose of your present one. I can't believe how your GD's mum treats her. No wonder she has self esteem issues. I'm glad she has you and your DSs family to help her, poor girl. Can't believe her mum works in a school. I wouldn't want her having anything to do with my children. It's amazing how your nephews daughter is so cheerful bless her. I also have a 50 year old relative who is affected, its an awful illness. You must have needed that sleep yesterday morning.
A mug cake sounds a good idea, I must see if i can find a recipe. I too hated cookery at school, we had a choice in second year to concentrate on either domestic science or science. It was great never to have to sew or cook again. Everyone cheered when I was given my choice because it was well known that I wasn't really sick at home most cookery days.
I'm sure your GD got a pleasant surprise with the money put into her bank. Doesn't it give us so much pleasure to give to our family?
Wyllow you have come such a long way, but please don't overdo things. I'm so glad you are back at Quakers (what is WfM?). And have made a good friend. I didn't know about your little granddaughter. It's very sad, but she sounds happy and cheerful, bless her. I'm sure you're looking forward to August and seeing them. Good idea to get a light bicycle. I have two , one in the caravan. I haven't ccyled for a couple of years, and I can't believe I used to cycle up the north Antrim Coast. This is a good time to get one. I wish you many happy cycling days. Perhaps take a picnic lunch and stop somewhere scenic.
I hope today's appointment goes well. You have prepared so well and are working so hard at going through everything in your past.
I loved the Mozart piece, he was a genius. I listen to classic FM a lot too.
Scaredycat You're right - "blow housework". We're only doing essentials, and trying to enjoy the little energy I have. But it's not much. On Sunday we had a short walk and lunch, and that was it. Even writing this I am getting hot and faint. That was a lovely day you had on Monday. Family are so important. And another cyclist! i too used to walk up steep roads. But you are right, roads are scary now, although where I live, drivers seem to have a lot of patience. We have a river close with a nice path and lots of cycle lanes on pavements. I misunderstood about your steering wheel. I thought you were saying it was so hot in this weather. Hope your eye apointment is ok today.
Sweetpeasue I'm glad to hear you are relaxing more now. It takes a while to settle. How long are you there for? The evening sounded lovely and peaceful in the garden, and yesterday morning too. I'm really curious about this plum bread. I've never heard of it. I hope today is going well, perhaps you'll have the boat trip. We have been on Lake Windermere. We also went to where Beatrix Potter lived, which was interesting.
Doodle It's great you have such a special close friend. It makes such a difference to have someone like that. and good family support. I'm glad you're doing things and enjoying some happy times. I know it won't ever be the same, but you have such a good attitude to acceptance and getting on with it. Something I try to have with my condition. I hope church is good today, I'm sure it will be.
EllieAnne I hope you're ok, and as you say, I hope the funeral doesn't clash. it was nice that her daughter contacted you. You were obviously important to her mum.
Candy that sounds like an awful problem, having to be active when you're tired. I don't know how you do it. I hope the GP can help. we haven't spent much time at the caravan. It takes more than an hour to get there, and I have gone from driving myself to DH driving me and still being exhausted. I live in hope that it will improve.
And yes Wyllow our caravan is beside the sea and the Mourne Mountains. Beautiful spot.
Whiff you are doing wonderfully well, in spite of your problems, a great example of KOKO. The ramp will be very helpful, nice to hear how you are.
I have done little yesterday or this morning apart from this post. DH has made breakfast and tidied, in the hope that I can meet freinds from art for an hour later.
Love to everyone, and those I may not have mentioned.xx

Morning all
Sweetpeasue I now realise you are away on holiday and it sounds so lovely. It will do you good to recharge your batteries in such a lovely place.
Doodle I’m glad you are managing to enjoy your new life. You have so many happy memories to look back on and you must feel very privileged to have shared your life with someone so special. Acceptance is important and key to contentment but sometimes difficult to find. I’m glad you found it.
Whiff so nice you have enjoyed some breaks. Your ramp must make a huge difference to your daily life. You are indeed inspirational.
Wyllow hope your appointment goes well today. You seem to have prepared well which can only be a good thing. You are working through things from your past and creating a personal timeline which will help you to let things go I’m sure. Good luck with the cycling. I haven’t ridden a bike for years but they say you ever forget! Good luck with it.
Ellie Anne how lovely that your friend’s daughter chose you to speak to. She obviously sees you as a caring confidant. I’m sure it will have helped you too to talk things through with someone who understands. You were a good friend to someone who obviously had a difficult life whilst at the same time putting yourself at risk too. A true friend.

I’m going home from my caravan today so need to clean before I go so must get on with it. Hope everyone has a good day. Love you all including those not personally mentioned.

(correct, when she died, third paragraph)

I put that all very clumsily, didnt I?

What I meant was that in certain respects, things were not good at all with my Mum and Dad, I broke an important "code":

And in the 1990's I found a "Mum", and got close, and when he died, I did grieve. (I got very drunk at a party and did actually cry)

And it looks like I could go through this process with X, the Quaker whom I have been referring to. Although 4 years back there was a sexual "pull", as well as emotionally there being a profound understanding, its not there now, I am likely to remain close and go through his aging process and death too.

And given my past that is a healthy thing.

I just had one of those lightbulb moments, although its such a profound idea I cant be sure.

My Dad died suddenly when I was at odds with him big time about the thing, outside family, that mattered most to him, his servant political beliefs.
It was like rebelling against very strongly religious parents (they were genuinely idealistic communists) - a no go area, a betrayal.

He shouted terribly at me, the only time ever.

Although years and years later in therapy I realised I'd believed my anger had killed him, the guilt hadn't gone.

Now...think about it. I've known the elderly Quaker for years but never have had as intense conversations as yesterday and today. And an "ease of mind" has crept in..

...a senior male figure who has a very different world view, who like and accepts me as I am, as I do him, can talk about stuff like death with him, etc etc, arrives in my life.

And he will of course not get weller over time and there will be death and a funeral and. a proper mourning (my family did none) to speak of.

(I have been down this road before, I got close to an 87 something Quaker woman and of course she aged, I visited, and was asked to do the eulogy.)

.Hey, it's great to see that ramp, Whiff, makes all the difference - sad to hear it was needed. Yes, you do "koko" , all credit to you. I'm hoping the neurologist can be helpful.

It's clear the PIP award made all the difference, I recall those dreadful days waiting and waiting. I also recall the old craft group didnt suit and is the new one a lot better?

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Thank you all for the warm welcome. Been having more mobility and others problem since I was in hospital early January for a week. But I keep on going . Like you all do.

Nothing stops you strong women for getting through everyday no matter how you feel. And your commitment to helping others is something you should all be proud of .

The longevity of this thread shows how much it is need and has become a family . Families come in shapes and sizes . Even a family of strangers can become more important and supporting than blood relatives.

But you know me I keep going . Go to 2 exercise classes a week, still do mine at home ,joined a new craft group once a month which I bake for and go to a cake and cuppa group which meets monthly.

May went to Llandudno for 5 days and came back on Friday from spending 5 days with my brother and sister in law.

I now have a ramp fitted by the council as my left foot kept falling off the step. I call it industrial chic.

Still rambling on but I am not the same as pre January but seeing my neurologist next month.

Glad to see you are still all together and new members. Also very glad the trolls haven't invaded this important thread. They have been a menace now for months .

Take everyone. 😘To you all.

Pictures of my ramp 😃

Oo I missed lots of posters when I was writing and having a coffee.

Good to catch up with you Candy. I'm sorry your sleep apnea was not taken seriously -it will make a great difference getting it treated, and I wish you well with that.
Being busy is sort of necessary to you I know, easing off is hard but it sounds as if you might try and work on it a bit? x

My dear Sweetpeasue, it's just what you both needed - respite- I can picture you both resting up in the evening, with the fresh air and the views. May it long continue.

Doodle you say, "I don’t have the contentment or joy I had with Dh but I can still enjoy being with people and doing things. I think acceptance is a key thing. Accepting your life has changed and wiping the best you can with what’s left. I am grateful for the time Dh and I had together. He was (and is in my heart) a very special person"

How far you have travelled through pain to get to this point - you are a special person to do this and it's a lesson.

Yes, giving into "'acceptance" - that says it all.

Candy6 My husband was diagnosed with Sleep Apnoea, after many years of terrible snoring. The consultant said he'd never seen a case as bad - he'd been waking/stopping breathing 62 times in an hour! - severe is 30 or more. He's got a CPAP machine, which helps enormously (when he bothers to use it). My GD still sees her mum once or twice a week, but doesn't live there. Son1 has got an 8am meeting at school tomorrow. He's previously asked for support for his girl. Unfortunately, the school is really poor (they were in "special measures" a few years ago). We support her as and when we can. LG is an absolute joy . I hope your GP will refer you for tests. Best of luck with that.

SweetpeaSue The place sounds idyllic. I'm glad you're both having such a nice time. Relaxation is what you need.

Doodle They're planning to remove one adrenal gland (there are 2, which sit more or less on top of the kidneys) and think that will sort it out. Chatting with others and finding pleasure and comfort from your faith is good. Do the same people go each week?

Wyllow3 I love Agatha the Croc . LG has got a similar one, but probably half the length. I so admire you for doing all that cycling - I've never ridden a bike, didn't have one as a child. Fancy being a day early for the appointment! Better than a day late. It's so good to know that you're so settled and happy lately. GD1 was such a help to us with LG today, so I paid £25 into her bank account. She's a good kid but easily led. The "friend" she's been truanting with was one of the bullies a year or 2 ago (she thinks if she stays onside be won't be beaten up )

Time to have a cuddle with Jaffa - he's been hanging around for a couple of hours and I haven't spent any time with him today. Hope ALL BDers sleep well x