Black Dog 14

Wyllow3 I just wanted to say I understand your feeling of isolation because of M.E. (I prefer the original name).
It's so difficult to make arrangements and keep them, and most people don't understand. I'm lucky in that I don't live alone, but I miss other company. I joined art classes and go when I can. It's good because we chat as much as we paint. And I can leave early if I'm tired.
I see very little of my family who mostly live in England.
It takes a lot of getting used to and learning to accept being alone a lot of the time.
I hope your chat with the CFS folk helps. x

It’s snowing here quite a lot. This is the third time I’ve been up tonight. I’m thinking of you Wyllow and hoping you are sleeping. Not sure if I’ve eatery something that doesn’t agree with me but I’m not feeling great.
I’ve just seen a fox running across the gardens outside.
Thinking of all those who are homeless in this cold. Hope they can find some shelter.

nadateturbe my DH was diagnosed with ME nearly 30 years ago. He had to give up work because of it. Hope you are managing to cope with it.

Doodle hope you dropped off in the end. You do have a lot on your mind with DH atm. Hope the echocardiogram is helpful in revealing information. (quakers are weekly Sundays but there are Zooms 3 a month I join in).

nadateturbe good to hear from another "in the same boat". About 14 months ago I could cycle 16 kilometres without so much as blinking an eyelid - no rest needed - so everything has happened in a year oh so fast. probably most difficult is never doing anything in the evenings except a monthly Zoom.

I slept right through for 8 hours, and think "being understood" helped a lot. Sweetpeasue I hope your nights a better one, and *Scardycat can you get down to the sea with the snow? visually quite something, but the roads aren’t great certainly here.

Hope you remain snow free HVDY

may or may not go to gym just lingering in GN waiting for some oooompf.

Hope we get Annie news soon. Bests to all BD's posting or just reading.

Doodle Hope you managed to get more sleep and you're not coming down with something. So terribly cold now, - 5 here this morning though just frost and no snow. Its shocking that anyone could be sleeping out in this!
Nadateturbe Im sorry about your isolation because of ME. Ive read of other GNs with it and I hope there is more research that will provide some answers and help. Your Art classes sound good and such a great way to meet with others.

Doodle hi, and thanks. I got medical retirement from Civil service about 10 years ago. I had to claim/fight for it myself as union didn't think I had a case with M E.
It's not an easy life as you know, for the partner too. Especially when there is little understanding.
But it must be very very difficult to be alone. I am on a forum and I read about people not having proper meals for days, and no help from social services.
I try to be grateful that I had so many good years and just make the most of my good days. My level of activity varies greatly, from almost nothing for 3 days to housework and an hour in the shopping centre.
My husband is very caring, and my faith helps.(and jigsaws!)

How is your husband now? Do you find it difficult?

Doodle So sorry that you had such a restless night. I hope you manage to catch up on some sleep. Oh, I love foxes. We had one, years ago, that used to come into the kitchen. We used to hand-feed it ham and cheese. It's absolutely terrible that there are so many people sleeping rough, especially in this weather, whilst illegal immigrants are put up in 5-star hotels.

Wyllow3 You slept for 8 hours solid - you must have needed the sleep. It certainly helps to get proper rest.

SweetpeaSue How are you this morning? It's -1 here, frosty but no snow. Aqua aerobics was cancelled again. I'm faffing about doing washing and putting the dry stuff away.

I hope all BDers has a decent day. I've got a chicken casserole cooking in the slow-cooker. Comfort food for this weather x

Thank you Sweetpeasue.

Wyllow3 my advice is don't give up hope. I used to cycle, hillwalk, sail, and more. Then..nothing! Just a long time surviving. But it has got better.
And recently I have been out to an evening concert! And a long lunch with friends. So you may well improve with time.
Socialising I find is the most tiring thing. Little and more often seems to help me improve, but we are all different.
Listen to your own body. Do what you need, regardless of others. You come first. Just my advice.
My two aunts are coming to visit this afternoon. I know tomorrow I will probably spend in bed. But that's OK. I will have enjoyed the visit.
I hope you all have as good a day as possible. x

Early afternoon greetings all. nadateturbe that's encouraging. I can do a little more than you, as all know I go to the gym when I can, but you do pinpoint one thing - socialising is as demanding as physical exercise. I limit social natters to an hour then just sort of fade out. Even with online chats. Brain fog.
I actually have an appointment wonder of wonders with the CFS people - booked it this morning for February, not surprised at the wait, glad to get anything. Mainly I want to explore what is "too much" to do/best ways I might heal as everyone is different.

My coping strategy is that I have a cleaner and a gardener so any energy I have goes to gym or people things not housework.

do you think it was stress that was your trigger - years of pushing yourself at work? Or was it a big flu episode or similar? Enjoy the Aunties.

Well - I went back to bed and slept the morning through! That means somehow I'm less stressed today and if that carries on all positive. What changed overnight!

Wyllow glad you slept well. What good news you have an appointment to discuss your CFS? Good idea to do what you can but not berate yourself when you feel it’s too much.
Sweetpeasue I took some pain killers then went back to bed and slept till 10 am 😱. Lovely looking out at the snow but we won’t venture out in it.
nadateturbe it is difficult to get medical retirement early for ME. My DH was lucky to have support from his GP and work.
He had always been so fit and well and hardly ever had time off before he contracted ME. Glad you have support from your DH. Such a help.
My DH has numerous health problems. ME was the first but since then heart, cancer, stroke and more, so it’s hard to tell how the ME affected him. He improved considerably from the early years of ME. Never quite got his memory abilities back but was able to lead a fulfilling life and walk and travel until recent years when other conditions have made him far less sprightly.
Have a lovely afternoon with your aunts.
HVDY just heard last night that my son and DIL are getting an air fryer for Christmas. I think they will make good use of it and from what you say it could be a good purchase. Wish we could join you for that hot casserole. We have cold chicken tonight 🤣.

Nadateturbe- ME/ CFS must be such a tiring condition to live with- never knowing from one day to the next what you will be able to do. You and Wyllow explain eloquently the problems you face day to day .
Do you sometimes draw or paint at home? I belonged to a Life Class before Covid and we continued via Whats App when it started. Often with more nattering than drawing!!!
Hope you have a happy visit with your Aunts- how lovely to have them
Wyllow- you must have been exhausted ! Hope that good sleep is the start of more restorative rest. I think your coping strategy is very well thought out and you certainly have your priorities right!!
Glad you have a CFS appt booked for the New Year so you can have a better idea of how to go about things.
Doodle- glad you finally managed to get to sleep- it’s so lonely awake during the night.
You and DH have had so much worry about his health. It’s marvellous how you have managed to enjoy your travels and
walking with so much to deal with.
The snow is still on the ground here but no more thank goodness - it’s so cold. No walking today- so nervous of slipping over. Can’t believe I used to ski all day when I was younger - now I mince about in a couple of inches!!
Hope you have a peaceful night tonight.
HVDY- sorry Aqua Aerobics was cancelled again. Somehow washing and tidying doesn’t sound so much fun.
I too can’t bear to think of those poor souls who are sleeping rough - life is cruel sometimes.
SweetPeaSue- hope you are having a good day.
Annie- wondering how you are and hoping you have some positive news soon.
Love to all BDG

Doodle - you and DH have been through so much. I'm glad he has even been able to do what he has, and it must have forged great closeness between you.

Wise move in the ice, Scardeycat Good for you with the class. I've dropped out of my local craft group, but it hasn't gone away for the long term. I've actually got a degree in fine Art and done most of a city and Guilds, but don't have the oooopf to do anything just now.

Reading posts here, I realise that I have been pushing myself far far too hard with CFS. I wont get better if I don't "cut my coat according to my cloth". I don't "cook properly" but use the microwave to make sure I have something like salmon and rice and something green or carrots once or twice a day.

Sweetpeasue what I found out today was that with this strange relaxing I'm having guess what - yup, bowels far better. I'm convinced how stress related it partially is. However we don't always get a choice with stresses, do we? Can't wipe out anger and hurt just for the convenience of a bit of our body!

Scaredycat Motorway journey must have been quite scary. Id have been the same as you. We stop travelling to son when its dark on motorway as the lights just dazzle all coming towards you but - thick snow-that's frightening. Son got back yesterday night thankyou. Always worry when hes so far to travel. We never stop do we?
Doodle Do you still have the snow there? So cold I think it will take some time to thaw. Sounds wise to stay in although it can drive you a bit cabin crazy sometimes. Were your painkillers for your knees?Hope you're ok. How is your husband today?
HVDY Such a shame about your Aqua-Aerobics again. Pity they got rid of the chap and replaced him with that machine. I love chicken casserole, especially with leeks(only 60p a pack in Tesco 😉) Thankyou Ive been fine today, thank goodness.
Wyllow Glad you got some more rest. It does take energy to chat, even for those without ME, so you must find that really frustrating. I think with some people who are perhaps more extrovert they seem to get energised by being in company--its quite strange. We're all different aren't we? So pleased you have appt with CFS people.
Nadateturbe You used to be so active and do so many things, you must miss them. I hope you had a nice afternoon with your aunts.
Annie We've not heard from you for a little while, I hope things are ok for you. I hope your hands are not too painful and you are still able to enjoy some tasty meals.

I watched a sparrow this morning trying to make the hole in a blue - tit box bigger. It kept trying to gain entry to check its size. This went on for nearly half n hr! Must have taken a lot of precious energy and determination to do this. When it left DH went out and filed it a little larger. I hope it returns but does anyone else think this is strange?Never seen it done before by a sparrow. It must be so cold to want shelter so much.

Hope everyone is ok and managing to stay watm.

ScaredycatSorry I missed your post. I take ages texting-wish I could do it with the 2 thumbs Ive seen young people do it with! I get nervous of slipping too. Hope your AF isnt too bad today.
Wyllow Im sure you're right about the bowel problem. It is a vicious circle but it keeps reminding me that its been inflicted and Im scared it gets worse as I dont think adhesions can be monitored or seen with scans. I believe it can be seen if the bowel is pushed or pulled in at places though the adhesions themselves cant be seen. Sure your sister will know more about that. Hope you get another good night's rest.

Oh Scaredycat I would love to ski. Never have and far too old now. We don’t go out for fear of slipping over either. Like you, no more snow but very cold outside.
Do you still do your art class? I would love to be able to draw or paint but have no natural artistic ability.
Wyllow DH has been through a lot of health problems for so many years. Can’t believe how many different things he’s had wrong with him. We keep plodding on. Since he felland broke his ribs he has aged a lot. That and Covid had a huge impact on his health. He does his best to keep upbeat but sometimes it gets him down. I’m just grateful to have him with me.
Wow I didn’t realise you had a degree. You must be very clever to have a degree in fine arts. How lovely to be able to appreciate things around you.
Stress is responsible for so many problems in our lives. It sure has an impact on mine. Be nice to think you might feel a bit better by taking things easy for a while. Be kind to yourself.
Sweetpeasue so glad you son is home. That’s a relief for you.
Yes still got snow but not much. Just what’s left from this morning. No the painkillers were for my stomach. Don’t know what was wrong last night as I don’t often have stomach ache but I didn’t feel great and couldn’t settle. Can’t complain though. Nothing like what you and Wyllow have to put up with. What a lovely little bird story. That’s kind of your DH. Poor little birds. I feel so sorry for all who are out in this cold. Since getting older I notice it so much more. We are lucky we can afford the heating I just feel so sorry for those who have to choose between heat and food especially where children are concerned. I love watching birds too. We have a lot of white gulls and for some reason lots of magpies. The gulls like to land on our roof and then at a given signal all fly off together.
I’m a two finger typer. Can’t manage the thumb thing either.
Annie if you’re reading we are still here looking after each other and hoping you can join us again soon.
To all who need a kind word and understanding pop in if you feel like a chat. Everyone welcome.

Wyllow It's good that you've got an appointment. February isn't too long to wait (although it seems it). You seem to have some good strategies for coping. You must have a real talent for fine arts, to have a degree. Are you feeling refreshed after all your sleep?

*Your poor husband. He's had a lot to contend with, hasn't he? You, too, as you've been looking after him. I don't know much about ME, but my eldest son has Fibromyalgia. Don't know if there are any similarities? I hope your son and his wife find their air fryer helpful.

You used to ski? It takes me all my time to *walk on snow . Thankfully, we haven't got any here yet.

SweetpeaSue Glad your son is there ok. Enjoy the time with him. I always feel sorry for birds in cold weather. I leave food out for them (but the pigeons scoff mosst of it). One of the things I've got the GC for Christmas is a kit for making bird boxes - they've got some nice trees in their garden, and also some outside their dad's house.

Nadateturbe Hope you enjoyed the visit from your aunts.

Anniebach Hope you're still doing well and that you'll be able to move soon.

Hope everyone has a relaxing evening. The man I'm going to be helping out regularly rang me today, we had a chat and I'm going to start seeing him twice a week after Christmas (DBS check needed first). Keep warm, all x

I don't know what happened to my post!

Sweetpeasue hoping the sparrow returns. Will be so good to watch if they "Adopt" the home. Just so hoping that your health returns enough to enjoy enough.

Yes Doodle feel so grateful for what we have in this weather, warm enough house, food, little treats.

Having the degree gives great pleasure even if I don't use it, intellectually you learn ways of seeing: ways into "culture stuff".

Coming to terms with not using the qualifications I have got in my life due to very long term MH stuff - eventually - has taught/is teaching me what does Really matter?

Love, family if we are fortunate, friendship, and if we can maintain it, curiosity even when other things fail. Still working on self compassion, over much guilt...make mistakes, there should be a tablet...

If I were inclined to be sorry for Ex - and I do have compassion at least she of the time, tho the damage inflicted is substantial atm - I'd say his total inability to give up on what he THOUGHT he should have in life, achieve in life, difficulty in valuing what is true and honest and have gratitude - is what I'd name.

I just missed you, HVDY. What a nice idea for a present (and its something have been meaning to get for here!)

Congratulations - it sounds very rewarding, and the right number of hours.

So, Im devastated tonight.
Solicitor is not taking case on. Basically it all comes down to the missing info about fallopian tubes spilling contents of uterus during op into abdominal cavity. Its gone from my medical records so I cant prove it, yet I know its true because of what the consultant told me. She ramg me on mobile 2 mths after I appealed to her by letter. We spoke of it. But she wont get involved.
So, Im angry but most of all feel stupid--to even think for a nanosecond I could challenge this.
I cant think clearly what to do. I dont think I'll ever get over the blatant cover up and deception involved. Even the latest consultant has lied about the procedure and what he found. Again.
My main problem has been my naivety. Held me back all along.
I dont know how to handle this. I feel utter despair and Ive been assaulted both physically and mentally.
I dont know what to do anymore. Having such bad feelings.

I'm sorry. Youve all enough on. I have come to GN and BD because I didnt know what else to do or where to turn. It really doesn't matter in the scheme of things. We're all only a speck of dust anyway.

Sweetpeasue I’m so sorry. After all you’ve been through. I’m sure you feel thoroughly let down. Can you check your GP notes and your hospital record to see if something is in there. GPS should have copies of letters.
If it is true there is no record I can’t think what to suggest. You have battled so hard for this for such a long time.
I can’t think of anything to say that will help in this situation. I just hope you know that we care for you here. Please try and get some rest tonight. So sorry for you. x

Sweetpeasue no you aren't a speck of dust. I'm sorry for your news:

What Doodle says.

Dear Doodle. I thank you so much for caring and replying to my post. As you have understood, so well, all along my predicament and believed in me and supported me throughout, I value you as a true friend. My medical records from hospital were applied for from Subject Access Office. They had to be signed before posting them on to me. Legally this should be within 40 dys. It took 45 dys and they were in the hospital to be signed well nefore this. I believe they must have been interfered with then. I have prayed so hard that justice, God's justice, would be done. Perhaps it has been but I dont know Doodle. I just know I feel that justice in this world has failed me. Bless you Doodle. I hope you and your DH sleep well tonight. Thankyou. X

Dear Wyllow Thankyou. Just seen your post. I do feel a speck of dust. But you were right about the cavalry.