Black dog 21

Hope everyone isn't suffering to much and Doodle you are comfortable and just resting and heal well.

So many say they haven't been believed by doctors I had that for years . The worst was when my pain went out of control and my limbs jerks started in 1988. I ended up in hospital for 3 weeks . I was told by 3 doctors I was a fake , attention seeking and mentally ill. And a nurse shouted at me you have only got post natal depression. I was 29 and very frightened. I wasn't allowed to see me children by then aged 4 and just started school and 8 months.

A woman died in the bed next to me during visiting time and I remember thinking is that going to be me.

It had already been traumatic being taken to the ward on a trolley as I remember there where posters on the walls about strokes and wondered if that had happened to me.

Don't really remember much else about those 3 weeks. But I had a very good GP who knew my and my family very well and he told me I was disabled and would help me anyway he can and he did . He sent me to see every consultant he could think of and found me the best neurologist in the country who I saw in 1992. But before that I had to see a psychiatrist in 1988 because of what the doctors put on my hospital records. My husband hated it but we went . She was lovely but my darling man glared at her and only answers yes or no . She said you don't want to be here he said no and she said there is nothing wrong mentally with X ( me) and it's physical. We used to say I had a certificate saying I was sane. I hope that doesn't offend anyone but it's what happened at the time.

There is a point to this I promise.

Thursday had a rigmarole getting the anti virals for my shingles but spoke to my GP who prescribed them for me and my daughter got them for me. Had the last yesterday and pleased to say the rash has gone . I think having the anti virals quickly helped and got off lightly as I know how much my son suffers when he was in his early 20's when he had them but he was to late for the anti virals. Plus I already took tablets for nerve pain and my constant pain. The worst was the 6 day headache and feeling tired all the time.

When I was talking to my GP he said he teaches doctors who want to be GPs and could he use me as a case study . As an example of if a patient comes with various symptoms and you don't know what it is don't dismiss them . As he knows how long it took me to get the diagnosis of the 2 things I was born with. I told him to use anything in my medical records he needed and thanked him because he sent me to see the neurologist and cardiologist that finally diagnosed me and got treatment for my HPX ,PAF and know about the hole in the side of my heart.

It only took me a move of over 100 miles from the black country to Merseyside to get my diagnosis in 2020/2021 for my heart and 2022 for my hereditary Hyperekplexia gene mutation SLC6A5 type 3.

Hopefully those he teaches will learn and not dismiss people like so many of you have . As soon many of use know if we don't tick certain boxes where as not believed and suffer for it. Plus many here are victims of medical negligence and still not had an apology for your physical and mental health problems it has caused. Nor help putting things right.

I told my neurologist to use me as a guinea pig as I am his first patient with HPX and because I ramble here as well as on my HPX group he has another patient because I praised him up and said his name and where he was based . She has a different gene mutation on of the 3 GL ones. If a parent or parents have it so will their children. Her dad and sister have it but they all live in different counties. My mutation means my parents where carriers for it and had 50/50 chance of having a child with the condition. I have it so couldn't be a carrier. My brother hasn't got it nor a carrier for it. Which means my children and grandson's are carriers or got it and my nephew and 2 nieces aren't carriers or have it. Hence my feeling weird and alone all my life.

But I wear my disability with pride and tell everyone about HPX . I know one day I will end up back in a wheelchair but I am doing everything I can do hopefully still have 15-20 years before that happens and I can carry on living an independent life and living it to the full. Only took me until moving here to find me again as I lost me after my husband died only took me 15 years to find me again 😁.

Never give up hope and live each day to the full . 💐

I’m doing ok but can’t do much. Being closely watched by sons to keep me resting. May be missing from BD for a while as now DH may be going into hospital next week. All a bit of a rush and so much to do but I can’t do much to help.
Take care all and I will be back asap xx

Doodle I started by telling you not to worry but deleted it as I know you will. So I'll ask you not to worrytoo much - sure your son's will have everything sorted. You're not meant to be 'doing much' you need to take it easy and get better and stronger. It can't be easy when your DH is going in for his operation and you must feel quite helpless but you need to get better yourself, then you can care for him. Don't worry about posting -we understand and just want you both well. Love and hugs.xxxxx

Nadateturbe Hope you've been OK today. How annoying to have to pay for a second consultation because things haven't been explained properly and fully. I hope you don't have to wait too long to see him again.
I used to like putting in ear rings and have tried clip ons but they nip too much. I've got fleshy lobes! 🙁
HVDY Hope you had a lovely time with your SIL today. Did you have a nice lunch? Went with DH to GP today and he's reduced his BP medication as Distolic pressure too low(which is what I'd told him after taking home readings) so thinks that's why he's having the dizzy spells. Has to have some general blood tests too but receptionist can't fit him in with nurse for another 10 dys.
Whiff It's really terrible how you were spoken to when in hospital those 3 weeks! You must have felt so frightened at not being taken seriously and not being able to be home with your young children must have been so stressful. Thank goodness for your lovely GP- they are worth their weight in gold when you get a good one. I bet you wondered how you coped when you look back at that time. I think we do blot some things out when they're so bad.
I've said it before but you really are an inspiration ,having this rare disease and coping and living with it so well. I don't think it's possible to really understand what some things are like until you've walked in their shoes. To be not believed by those who have authority can be a truly horrifying experience. It's an extremely frightening thing when you know 'they' are hiding things from you and are 'all in it together'.

So glad you are feeling better with the shingles. Your headache sounded awful. Glad you got the medication promptly too. Thankyou for your encouraging words Whiff. They mean a lot. I hope you continue to enjoy your life as fully as you can do without your beloved DH. He would be very proud of you indeed.
Nanny I hope you are OK and are coping. Not sure when your little grandchild is due but know how you are looking forward to him/her .

ScaredycatEllieAnne Candy Hope you are OK.

Wyllow Hoping today you have had some moments of hope. Wishing you a peaceful night. x

Doodle I'm glad you have your sons to look after you both. I echo what Sweetpeasue has said, and will remember you in my prayers. Sending much love.xx

Whiff what a really horrendous time you had those 3 weeks, to feel so very ill and not being believed. You must have been so frightened. It must still be a terrible memory.
Thank God you had a wonderful GP. I dread to think how you would be if you didn't have him.
Yes, it's awful to be ill and not believed. The stress makes everything worse. You have coped so well. You are so strong and inspiring.
I'm glad the shingles have eased.
Never give up hope and live each day to the full . Good advice.

Sweetpeasue I do hope lowering the BP pills helps your DH. I don't think there's much else they can do. My diastolic sits around 60. It can make you feel weak.
I hope you've been ok today, not in too much pain.
Clip-on earrings aren'tgreat. I've had screw on ones which were slightly better. But pierced are best.
I don't mind paying the consultant. Benenden paid the last one.. But honestly, why they can't provide a simple interpretation for the patient is beyond me.

I got my hair cut today. It cheered me up. I noticed my hairdresser had a little plaque on the wall which said "What's said in the salon, stays in the salon".

Hope everyone else is OK yoday.
Wishing you all a peaceful night.x

Night night BD's. (would love a haircut but cant cope with much except for getting by)

Whiff You really are a remarkable person to be so strong and positive, after all you have (and have had) to endure.

Doodle You must be worried about your husband's upcoming operation, but your family will help out, I'm sure. Try to rest as much as you can. Lots of love x

SweetpeaSue Yes, a nice lunch with DH's sister, thanks (we treated her). She's a nice enough person, albeit quite odd. Glad the GP has reduced your husband's BP pills. I hope that will help him.

nadateturbe 60 IS low, isn't it. Re your medical notes - would you be able to Google them? I had the same trouble and typed in some of the words/phrases.

EllieAnne Hope the weather is fine where you are and that you might see a friend over the weekend.

Hope ALL BDers manage to have a decent day x

HVDY thanks. I did Google some and got explanations that could mean ok to very serious. , probably is the former, but I need to understand things.
Hope you have a nice weekend.

Doodle hope you are a little better. Thinking of you. xx

Yes it is low. I've told GPs. Atm it's 100/60. Hopefully I'll get a cardio review soon. Its 5 months overdue. Never mind, it's 🌞. A shower usually gets the circulation going. x

Doodle- just keep resting- your lovely boys are there for you and DH. You can just supervise!! I expect you feel,a bit helpless but you are in good ,loving hands and when DH comes home from Hospital you will hopefully feel stronger and more able to help him, Sweet PeaSue couldn’t have put it better - she echoed all our thoughts.
Whiff- you never cease to amaze us with what you have gone through. The last line of your post is a wonderful motto-
Never give up hope and live each day to the full.
Nadaateturbe- sorry the report was difficult to interpret - as you say why can’t they use language we can all understand. Shame you have to pay out again.
Cathedrals are one of our favourite places to visit- they are miraculous both in construction and beauty. They would have such tales to tell. We are so lucky to still have so many of them.
SweetPeaSue- makes sense that your DH dizzy spells have been caused by his BP meds. Hope now he will be free of them.
Hope you feel well enough today to get out in the sunshine- will you see your Aunt?
Wyllow- would it be possible for you to have a home hairdresser? Sending a weekend hug.
HVDY- glad you had a nice lunch with your SiL. My former SiL is a bit odd too but we all love her to bits. It’s a lovely sunny day here - going for a walk after lunch.
EllieAnne- hope you get out this weekend and have some company.
Nanny- how are you?

Just had a 2 hour chat with my Sister. She is very worried about my neice who is waiting for an Op on an abdominal cyst that is getting so big she looks pregnant. She has been waiting so long what was a small problem is turning into a big one. Lovely to chat though - hope to see her in a few weeks.
Sending love to all BDs old and new and just reading.

HVDY Thanks re DH BP. Not sure how long it will take to make a difference. He reduced dosage this morning so might take a while to adjust (he's had a couple of dizzy spells so far today). Hope you've had a decent day too. Mixture of sunshine and showers here. Done some washing / ironing ,changed bed n made bread. Sounds more than it was but OK with that. Exciting stuff eh?
Scaredycat Yes, did manage to take aunt out-just. Had to postpone it a little but was able at a later time , which she was happy about.
My aunt's daughter had a simular long wait for an ovarian cyst to be removed-its disgraceful really. She had her op a month ago and initially cyst was tiny but was sizeof a grapefruit in the end. Her op was successful and she's feeling much better so I do hope your neice gets her op soon. She must be so uncomfortable -hope it's not causing too much pain.
Nadateturbe My husband is on 3 different BP drugs and the steroids he's on has made his BP even higher (hence upping dose). The diastolic figure was in high 50s and its far too low for a man just over 6ft . 60 is v low so no wonder you can feel weak but it must be difficult to know if it's your MS symptoms or BP. Your systolic figure is quite low too whereas DH's is higher.
The hairdresser plaque is funny isn't it?
They must hear so many stories but it must be comforting for some people who are a bit lonely to be listened to
aswell.
EllieAnne Hope you are OK .

Love to Doodle and hoping you are managing to relax and recover.
Hoping all BDs are OK .

Scaredycat Yes, we are lucky to have our Cathedrals and all the wonderful history. I've also been to Canterbury which was very interesting.
About the neurologist- I just feel thankful I can pay it. He will probably think I'm mad, most people wouldn't bother, but I have to understand things. Medical people forget we only understand plain English.
Lovely to be able to chat with your sister and not too long until you see her! I'm sure you're looking forward to it. .
I understand your niece, my step DiL is the same atm and is concerned about waiting. I hope they both get seen soon.

Sweetpeasue it's shocking how ladies are having to wait so long for these ops.
I dont think you realise just how much you achieved today, and took your aunt out too. I think its lovely to make your own bread, so much healthier. Do you ever make sourdough? Some day......
I've been out, had to meet my DiL briefly about something then nipped into Bon Marche and home. DH wasn't well so I cooked his steak and he said it was nicer than his. High praise indeed. I'm not a cook.
Your DH's BP seems quite a problem. He needs meds to bring it down because of the steroids and yet one reading is too low. I hope they sort it, it's not good to feel dizzy so often. I've just googled how to raise diastolic, it says try doing some exercise, which made me laugh. But really it's not funny. I wonder how long he will have to take the steroids.
My hairdresser works alone in her garden salon, she's lovely. She said with some ladies she's like a therapist.

Hope everyone is OK tonight xx

thank you for weekend hug....I'm not up to contacting family and it's very lonely. Days when I talk to no-one...Such difficult feelings I try not to feel and that goes nowhere....

so returning hugs all round BD's.

Wyllow reach out to your family if you can. Loneliness is very sad. We are here. Hug from me too x
Worried about DHs leg. Hoping they will do the op soon and it works. Sorry for all those in pain both mental and physical. It’s hard isn’t it. Love to all 💕

Wyllow are you still in touch with the Quakers? I know the Brain Charity even though it's in Liverpool help anyone in the country do a befriending service where they call people and talk on the phone other charities do as well. At least you would get to talk to someone even if it's only once or twice a week. I know my daughter did it during Covid lockdowns as so many people where on their own. Just an idea .

I talk out loud everyday to my husband have done since he died I was worried I would stop talking but it still gives me comfort talking to him . I know some people who talk to their deceased parents and that gives them comfort. I have shouted ,swore and blame my husband for dieing but see him with that stupid grin on his face and know he would have said feel better now and I do.

Doodle hope you are healing well. At least you know your husband will have your son's looking after him . Hope he gets his operation and it helps him with his leg.

Thank you all for your kind words. I was brought up in a large extended family and knew my great aunts and uncles. Not brought up with money but plenty of love and attention. My dad always said no such word as can't. My family never treated me as different and our parents always told me and my brother we can do anything we want. I was lucky enough to love and be loved by a wonderful man . We both had tempers and stubborn the children followed us and at times the house was in up roar.
My upbringing was no matter what you just got on with things and let nothing stop you doing what you want. Just do things your way.

We all just get on with things it's just I am a chatterbox in real life and I write as I speak. All of you have faced and still facing worse things than me and you all show your strength even though many of you don't think you are strong I have said it before you are stronger than you think . I see that and you must believe you are . You give support, understanding,help and friendship daily even though going through physical and mental pain everyday yourselves . Why I still write on here is because you make me feel safe and you inspire me to talk about my life .

You are all suffering but it's not a doom and gloom thread and love reading what you are up to from pets ,wild animals ,family and your holidays.

Got over the shingles think getting the anti virals quickly helped plus already on tablets for nerve pain and others for pain and think I had a mild case as the pictures I saw of and hearing from friends when they had it I got off lightly. The worst was the 6 day headache and tiredness.

My garden is weedy but it will stay that way as I go on my first holiday for 19 years in 4 weeks and need to be fit and healthy. Back to sit fit tomorrow and craft group Thursday. My craft group has it's own what's app group so we all keep in touch daily .

Remember you are all stronger than you think and you all help more people than you think as people read but don't feel they can post . The longevity of this thread is testament to how much it is needed .

Take good care of yourselves you are all winners of the courage award🏅. I never say things I don't mean as I forget hence my repeating myself 🤣

ScaredyCat It's awful that your niece is suffering like that. Is she in pain with it? I hope she won't be waiting much longer. I think there are backlogs all over, made worse by all the strikes.

SweetpeaSue I don't know how long it takes for BP to settle when the dosage of tablets has been reduced, but I hope your husband feels better soon. I'm glad you felt ok to take your aunt out. She must look forward to your visit.

Nadateturbe It always feels nice to get a haircut. I don't enjoy going, but my hairdresser (Italian man, 69) and I chat the whole time. The plaque at yours is amusing.

Doodle Fingers crossed that your husband gets his op very soon.

Wyllow It's not good for you to not see or talk with anyone for so long - AgeUK does a friendship telephone service, as does Re-Engage. They might be worth considering.

Whiff Glad the shingles cleared up quickly with no after-effects. You must be really looking forward to a holiday after 19 years! Is it with an organised group?

DH and I are seeing the whole family for a buffet lunch at Son2's, so that will be nice. My damned legs, though, have been bad for a few days. It's sunny and already quite warm out.

Candy6, Nanny2507, ALL BDers - I hope you all see some sunshine today. x

HVDY A buffet lunch with the whole family all together must be wonderful. Sure you'll all enjoy that. Its great that you all get on so well and the children too. Oh, sorry about your legs though- do they hurt more when you're standing for any length of time? DH still had dizzy spell with headache today .Expect it tales a while for meds to help.
Nadateturbe Never tried making sourdough but I like that. Wouldn't be doing it if I didn't have a good mixer with doughhook - too much hassle ( OK, hardwork! ). When DH reached 35 yrs working in industry he was given 'tokens' and the mixer was one of the main items chosen. Hope your DH feels better today. You'll be asked to do his steak more often now! With Polymyalgia steroids need to be taken a long time and weaned off extremely slowly or the damn condition comes back. He's getting some exercise in now in the garden bless him.
Whiff I admit to our home being in uproar too when family all together. Only human isn't it? 😂 I was born into working class family too and no one had the things we have now , did they? Mum used to buy pkts of broken biscuits - choc ones at Christmas along with a tin of red salmon - a luxury but I hated it. Didn't harm not to be 'spoilt' too much.
You are very kind to us.
So you are going on holiday after 19yrs! Remarkable . I hope all goes well for you and everything is organised to help you.
Doodle Hope you are gradually getting stronger and your DH is doing OK. Not sure when he is going in for op but hope everything is sorted out and you can rest easy.
* Wyllow* I've never had as severe a condition as bi- polar illness but I do remember having depression so bad I wanted to isolate myself and not talk to anyone at all, which I did for a time. Doesn't mean because you inflict the isolation on yourself you can't feel loneliness though. I wish I knew what to say. I think it's so hard when you don't want to 'feel' , as if you're dead inside. Not saying you are like that- only personal experience. Please continue to reach out here if you want to. You don't have to comment on others at all. Sending another BD hug 🫂 and ' holding you in the light'. Xx
Scaredycat* EllieAnne*Candy**Nanny Sorry if left out anyone. Hope all are OK.

SweetPeaSue- you had a busy time yesterday- what sort of bread did you make? I bet it smelt lovely.
Glad you saw your Aunt - is she your Mums sister? I loved my one and only Auntie - I look more like her than my own Mum- my Sister is like my Mum. I,m glad her daughter has had her cyst removed my neice is extremely uncomfortable and says she will have to give birth to it soon if it gets any bigger!!!!
Hope DH dizzy spells ease soon.
Nadateturbe- yes isn’t it dreadful that so many younger ladies are having to wait for their Ops. My neice has had a defib/ pacemaker fitted a few weeks ago so that is worrying too.yes let’s hope they get sorted soon.
Your hairdresser sounds nice- you must look forward to seeing her.
Wyllow- oh you must feel so alone it is not good for you. You can always “talk” to us if you ever feel up to it. Thanks for our hugs.
Doodle- hope you are feeling a bit stronger. I can see from the time of your post you are not sleeping so well. Hoping DH has his Op next week and that it will make life more comfortable for him.
How are you apart from the continual concern for DH? Are you able to eat Ok to build up your strength. Think of you a lot- as we all do.
Whiff- good news to hear you will soon have a holiday- you must be looking forward to it very much. Good job the shingles wasn’t as bad as it could have been. Take good care of yourself too.
HVDY- hope the family lunch has been fun - your boys are really good at organising get togethers. I,m sorry your legs have been troublesome - is it because the weather is warmer?
Have a great day though.
Candy,Nanny,EllieAnne and all hope your Sunday has some moments of light .

I've done something bold(stupid?)
I've only gone and booked a last minute break in Lake District yesterday!
Awful bout of pain during night - full painkillers- so feeling quite scared now.
Taken on board about not being who I was ( person without pain condition) . Wanted holiday to be the same experience we used to have but realise it may never happen and couldn't bear disappointment. Anyway, it's done now so , as psychologist says, can't know till you try. Quite worried about DH too but also not sure when we will feel fully well so he feels the same- we can only try. I mean it's not the other end of the world is it? Yikes! Tbh -think my pain is getting worse but I could be doped up here or doped up in a garden overlooking the mountains. DH's decision too. We can always come back. Please someone say we're doing right thing.
Whiff You've given me inspiration. We've not been away from home for 3 and half yrs .