Black Dog 16

Glad it was a bit better Sweetpeasue today.

I used to make my own clothes and do a lot of art but have blocks about doing it as in what's the point etc - for years now. So picking up some stuff today was a plus. Your M n S garment would be quite complicated to shorten the sleeves because of the embroidered cuff edge, you'd had to make a tuck in the fabric higher up.

HVDY I hope you feel a little better today. It must have been a bit of a shock to get the letter through the door. They have been so quick to find out about this Microscopic Polyangitis(hope Ive spelt that right). I'd never heard of it before but from what Ive read its a form of vasculitis. I hope the medication is kicking in and will help your leg symptoms. Fantastic losing 3Ibs in only 5 dys, you must be thrilled. Hope you had a mice afternoon with family.
Scaredycat You are not letting the AF win by walking alone and thats so brilliant. I expect your confidence will grow with each walk. We just need the weather to warm up a bit. Its so cold here but the blossom is coming out. I know you have some lovely woodland walks. Are there any bluebells? Cant remember when they're due to appear.
Wyllow It must get on your nerves, not to be able to do the things you want to do. I hope that sleep has given you some more energy. I believe emotional stress can deplete energy with ME/CFS too so you're right to not plan too much. It must be like a fine balancing act. Nadateturbe seems to understand this too. You'd think more would be understood about this illness by now and there would be some solutions.
Do you sew and alter clothes? Wish I could do that. Bought a lovely Kimono type Dressing Gown by Rose at Autograph from M&S. The sleeves are so long and they're cut in a certain way with a n embroidered cuff edge.
Whiff Its good of you to encourage us and reassure us with your success in overcoming the trials youve had in life. It works both ways, listening to your stories and its good to hear how you've 'come through.

Have had a good day today. Started v flat but had DGS this afternoon and its distracting from worries and they can be so funny. Son 2 back offshore for a couple of weeks. I make sure he and GF have their own time when he's home but nice to pop in at times.

Hope Doodle and DH are feeling ok today and have had some quality sleep. Also that EllieAnne is getting along ok with daughter.

CandyNadateturbe and any Ive forgotton. Hooe you are all ok.

Slept not spelt.

My body is telling me wha to do. I just spelt 3 hours and feel fluffy. Warning alert to take care and stay in bed.

Scaredycat - you are right, going out with mobile is a safetey net that allows more than otherwise achieved. Knowing one can reach out counts a lot.

Doodle- sorry you were troubled with palpitations but I,m sure it’s due to all the stress you are under right now. Also your overwhelming tiredness must be so difficult to cope with as well. I hope you got some restorative sleep last night.
Yes I,m scared of feeling ill while I,m on my own which is silly really as I always have my phone and my watch can alert too. Will not let it stop me though.
HVDY- oh I,m so sorry that you have had that diagnosis - anyone would have Googled as I,m sure you had not heard of it before. It would explain the nosebleeds I think. It’s so good you are already on treatment - glad they have seen after you so well.
You have done brilliant with the weight loss- just make sure you eat enough to keep your strength up.
Hope you have had a nice trip with your son and his girls- lovely to be with the kids - they always cheer you up don’t they.
Wyllow- Concentrating on the can dos is so very positive and maybe you will surprise yourself with what you will be able to do as you get stronger . It may not feel like it now but you have a new life on the horizon .
Today is a day to replenish your strength and just do things you enjoy.
Whiff- that was another encouraging story of hope and perseverance you wrote today. Hope you are having a good day today.
Love to all

That's pretty certain then HVDY. And the treatment (which I did look up). As you say, having a diagnosis is a mixed blessing for it but also a point to move forward from. Well done for the weight loss. We're all behind you egging you on.

Yes Whiff, it will be all that, and your story is a great encouragement. My mind is on planet Zog today, ie loads of sleep but "duh". A day not to think of big things tho will ring GP to see if MRI results in.

Got to the chemist where a long queue was lightened by a delightful small child who played "clap your hands" and his brother who was dinosaur obsessed. Taking my brain back to bed but done a bit of sewing, Have some charity finds that need tweaking but found it difficult to get started but I have.

Wyllow moving is very stressful but for me it's what I needed. After I had no one dependant on me it was a mill stone round my neck and I wasn't happy. Happiness is under rated. Once I decided to sell it was a weight of my shoulders and I detached myself from the house emotionally. Selling and buying will drive you to the brink and sorry to say your mental and physical health will suffer. But I promise you it was well worth it. I had 2 buyers pull out in me one day of exchange and second 4 days before exchange. But luckily the bungalow I had my offer accepted on in July 2018 they kept for me as it was empty. But didn't become mine until August 2019. The thread on the house and home forum. Stress of buying and selling tread saved my sanity . And found I wasn't alone it happens a lot.

Like I have mentioned decluttering not only declutters you home but your mind. And meant I could let go of things that held awful memories . I didn't realise how much they had held me back. My only worry about moving after I found my bungalow was would I like the neighbours. But I couldn't wish for better. In my old house I could have been dead a week no on would have noticed . Here if I am not seen for 2 days I get a knock on my door to make sure I am ok.

I moved over 100 miles from the Black country to north west and the people are so different. Here I have made friends by joining my sit fit group and my wonderful craft group. Live closer to my children which they both wanted for years. But as some know my son gave me the boot as his mom in May 2020.. Luckily are paths will never met as I live different part of the county. 40 mins a car.

As much as it will effect you health wise moving will give you a new life. I didn't realise how much I needed that . Also I found me again . We get so wrapped up in our labels I lost me. And found people liked me for me warts and all..

Yes I see my daughter and 2 grandson's each week. Which gives me great joy. But I live an independent life. As I did for 13 years before my move but had my parents and mother in law to look after.

I am so glad I moved not only the people here are so different and caring. Health care is so much better I finally know 2 things I was born with HPX,hole in my heart and have treated for HPX and PAF. As my hole doesn't give me chest pain and not in the connections in the chambers of my heart it's safer to leave it unless it causes chest pain. Found about the hole in 2020 only diagnosed with HPX year ago.

I finally say I am disabled as I have been since I was born but never called myself that until last year. Doctors since 1988 have said I am. But it felt wrong to me without a diagnosis. But know I own it.

If you have health problems and your loved ones do as well it has the knock on effect of making your own health worse. It's a vicious circle and only gets worse if your loved one gets worse. But you find an inner strength that you didn't know you had. All here shown that strength time and time again. Be very proud of yourselves. I have said before live can be good,bad and down right awful but it's life and no matter how hard it is live it to the full.

You have all shown such courage and strength I don't know how you all do it but you do and you give support to others so they can face each day. Me included. You have all helped me so much you will never know how that makes me feel.

Keep going you all inspired people who just read but feel they can't post . Your words are very powerful and help so much. It's testament to how much this thread is needed as it's the 16th. If my maths are right that now over 16,000 posts with the ones on here.

Keep going no matter how hard and look after yourselves. X🌹

Wyllow I've already had several blood and urine tests, chest x-ray, nerve conduction tests and been seen by 2 Rheumatology consultants and a Neurologist, so I suppose they know, but I'm glad to have been dealt with so very quickly (I only went to my GP in Feb, so things have happened fast), and I'm pleased to be on treatment. I'll try to focus on what I can do (I can do everyday stuff, just a bit less coordinated than before).

It's a grey morning, but DH and I are going to go somewhere with Son1 and his girls later (not sure where yet because of the weather forecast). I started this diet on Sunday, and I've lost about 3lb, so it's a decent start. I'm hoping to get 2st off by August. Hope all BDers had a decent sleep. x

I do feel I have a disability and have for some time. How much I let on depends on the situation. Its kind of relief admitting it. I suppose there was a point relatively recently when I realised I won't "get better" in some way like be able to do"normal" things people take for granted.
Had a Quaker Zoom which was quite nice but people were going off to London and this that and the other and writing books/poetry things I used to do but dont expect to again.

I'd rather concentrate on the can do's these days mostly. Frustration uses so much energy up.

HVDY I admit I dont a actually understand this. Do hope you will get more information soon. x

I read up on it too. Of course you are sorry for yourself, its all very uncertain .... all new.....
How can they know if it is certain or not HVDY - further tests?
Hope you get to speak to someone who can help as soon as possible.

SweetpeaSue Glad the counselling went well. It's good that you feel at ease with your counsellor.

Wyllow I'm not coordinated or physically strong enough for a lot of jobs now. A part-time office job would be great, but at my age, I'm unlikely to get one. I hope you have a better day tomorrow.

Doodle It's no wonder you're so tired, with lack of sleep, all these appointments to attend, making various arrangements, and looking after your husband. It's a 24-hour job for you. on hasn't moved out altogether - he can't get broadband connected until 22nd, so is having to work from here or his GF's until then.

I've felt low today because it's finally dawned on me that I'm disabled (a term I dislike and have denied about myself). I had a letter saying that the hospital thinks I've got Microscopic polyangiitis (So I Googled it and wish I hadn't). Things could be very, very much worse but I'm feeling a bit sorry for myself. I'll be in a better frame of mind tomorrow. Hope all BDers have a restful night x

Doodle I'm sure the palpitations you had must be because of so much going on with your DH. Its no
wonder you are so tired with full days in hospitals and worrying about test results then nights of no rest for you both. I hope you can have a day to yourselves soon when you're not flying back and forth to the hospital. It must be difficult keeping track of all DH's meds as he has so many conditions. Ive been thinking of you both and hoping you were ok. Much love to you both and dearly wish you a peaceful night.

I didnt hear a peep..of course you must be exhausted xx

Ellie Anne glad you arrived safely, Hope things are going well with your DD and you have a nice evening together .
Sweetpeasue glad the counselling went well. I’ve never had one to one like that but don’t imagine it’s easy to delve into your innermost thoughts and feelings,
Wyllow sometimes there is too much going on to be able to think of new things. I’m feeling a bit like that at the moment,
So much has happened in the last week and I’m trying to keep my thoughts in order as people keep phoning (hospitals) asking DH questions or booking him in for more tests. I have been writing things down on a daily basis but it is exhausting. Moving house is a big job but also exciting. Perhaps put it on the back burner for now,
HVDY strikes me your brother has no idea how hard housework is or how much you do day to day. A Cafe job would be hard work. Do you feel a bit flat because your son has moved out perhaps? Are you still looking for another job?
I agree joining things on your own can be difficult if you aren’t particularly confident.
Scaredycat yes so many tests it’s hard to keep up. What is it that makes you anxious about being out on your own, is it your AF? I had palpitations a little last night. I think I just got a bit worked up by all these tests DH is having and then sitting there waiting for the results is nerve wracking.

I can’t get over how tired I am. I keep nodding off in the middle of things. Just done so twice in the short time I have been typing this post. Sorry if I’ve been snoring 🤣

I wrote a post then didn't press post.

Crash just got worse till gripped by anxiety and hopelessness so have taken extra midst interrupt it.

Sweetpeasue you were right in every respect I was piling on too much too fast. Its a long habit that when I get an idea like the move part of me immediately and profoundly thinks, if I don't make it happen NOW then it never will.
But of course some of it is evasion of the pain inside as loss triggers past unresolved losses ALWAYS

so I fight them with "bright ideas". So loss stuff it grows inside then eventually I wear myself down with "doing" and whats inside comes out.

I'm glad what your counselling focussed on for...well, what could be more nice than slowly feeling more at ease about being with family? Won't come overnight of course but glad you've "chalked it up" with counsellor.

HVDY I do have some local arts/crafts groups, local library knit natter and so on, its the CFS stopping me in this respect. I am a social animal by nature, not as shy as some here,

and I think you are -

you like to be usefully "doing" with others. Phew cafe work is pretty demanding tho part time I can just see you enjoying natters...(cake temptation tho massive) but now the DS's are settling I hope something meaningful comes to you and maybe a bob or two doing it.

*Scaredycat" I was thrilled to read of your baby step forward a longer walk well done.

(My target city is 40 mins drive to nearest seaside: currently it is over 3 hours, so to answer your ?, yes, it is something I could do alone, a drive, little wander, and coffee.)

Bests to all BD's and yes Doodle on my mind as so many ??? for what can help MrD

HVDY Flat days are horrible. Its not great having to restrict foods either. Can make things thoroughlymiserable. The other thing you said--not easy going to things alone. I should mix more but, like you, not easy in fact damn hard. On your feet all day in a cafe--doesn't sound easy! 😩
Scaredycat I always tell myself that once Ive been out for 10 mins walk I'll feel better. It must be hard for you to walk alone but youve done well there. I bet your confidence has risen a little. Weather so changeable here. Hope you saw some interesting things on your walk.

Hoping everyone is ok and Doodle and husband haven't had too bad a night.

HVDY Yes thanks-counselling went well. Its often exhausting as I'm gently drawn into examining some of my thoughts(like those had on family break) but we get on very well. Your son must be so thankful for all of your help and 'saving' their furniture. Hope your legs aren't too painful today.
Wyllow I did feel and hope you weren't taking things too fast. I believe moving house is near top of list of stressful events, along with Divorce or bereavement. You have so much to cope with in the present.
Only yourself will know when to make actual steps towards moving.
You must be in such a bewildered and scary place right now that to escape it and 'move on' is very understandable. You are a brave and proactive person and you can and will do the moving when you are ready.
One day at a time. You will get there. So sorry you're having to be in 'the place' where you are right now. x

I meant "my husband is happy to be at home"

Wyllow3 I'm sorry you feel so isolated. It must be very difficult. Are there any groups you could join? College courses? I keep thinking I should make an effort to join something but it's not easy going to a new place alone (my husband is very happy to be Your health problems are another thing for you to deal with. My brother suggested I get a job in a cafe . I don't know how he thinks I'd be able to carry a tray full of pots or meals.

I'm feeling quite "flat" today. (If only my stomach was haha).

How is everyone else today?

Doodle- I do hope that you both managed a decent sleep last night. You must have been worn out. Good that the ball is rolling now and more tests have .been arranged. So stressful for you though- hope today was a peaceful one.
HVDY- hope your brother and his wife were well- she would have missed seeing you with the Day centre closed.
Yes what a good job you were able to rescue your sons packages - it’s always a worry with deliveries. I hate it when you pop out for a minute then there’s a card on the mat saying you,ve missed something.
Wyllow- would you be able to visit the sea when you next go to see your family. I expect the kids love the beach. It would be nice to have the sea nearer in your next home.
Sorry you are having a difficult day today- take it easy and see after yourself. How is your back today?
EllieAnne- so glad you have arrived safely . I hope you enjoy your time with your daughter and that she’s not too stressed.

I went fr a longer walk on my own this morning- felt nervous but it was lovely out and I,m glad I went. DH was at Gym.

Whiff,Candy,SusieWakie, Nadateturbe, and those who are just reading hope today is kind to you.

Not a good day. Crash after too much future planning and not enough taking care of myself in the present or allowing time for grieving and coping with the car crash of the ending of my marriage. Yes good to look forward but not enough living in present, and living in present isn't a happy place with everything going on...CFS, Back, Lump, bowels, and sheer isolation.

Hope its a decent ssh, Sweetpeasue and that today is an OK one with DD, Ellie Anne.

More "well done's" for being a great mum, HVDY.

EllieAnne Well done on the driving. Hope your daughter wasn't too long and that you have a nice time with her.

SweetpeaSue Hope your counselling session helps.

Met my brother and his wife, only for a couple of hours, then went to Son2's house as some parcels had been delivered (flat-packed furniture and some kitchen things) and they'd been left outside (since yesterday, apparently). Good job we're nearby.

HVDY Cold and windy here too. We're just going for a coffee and snack then I have counselling session.
EllieAnne Well done with the driving. Hkpe your DD shows up soon and you have a decent day.

Drive accomplished!
No sign of dd and house in its usual mess(she gets annoyed if I tidy or clean). So I m reading my book and waiting for her to appear.