Fed up with this psin

[Fluffybee]

Over the last few weeks I’ve been having quite a bit more pain than usual, I know the cold doesn’t help with this condition so I’ve been careful but what really gets me is I cannot hold anything (baby) average weight, I’ve tried my spray, sitting down does help but sick of it holding me back from the things I used to do and want to do.

I know I’m being selfish as there’s people on here who have far far worse and been through so much.

Just wanted to have a vent about it really, that’s it !!!! Feel a bit better now 😄

[Milkfairy Heart Star]

Snap 😫

[Fluffybee in reply to Milkfairy]

Group hug needed 🤗 how are you now ?

[Sunnie2day]

A bit of a vent is good for the soul I hope warmer weather comes soon for you and all those for whom winter cold brings pain.

[Mallowme]

I know exactly how u feel. It’s so frustrating. No like threatening as such but like altering and limiting. There’s no fix or cure and u have to learn to live with it. The only thing u can do is make the most of the good days. My cardiologist finally wrote to my doc and said mri isn’t helpful in diagnosing MVA... completely different to the BHF website. Feel lost, alone and fed up. No help or support as COVID has taken over the world.

[Milkfairy Heart Star in reply to Mallowme]

You need a second opinion.

A referral to St Thomas's hospital

[Mallowme in reply to Milkfairy]

I wish... I am going to save and try and get a private consultation later In the year when this peak settles and more normal health problems are being considered again. Thank you. Xxx

[Milkfairy Heart Star in reply to Mallowme]

You are entitled to see the St Thomas's team through the NHS.

[Mallowme in reply to Milkfairy]

Next time I speak to my go I’ll ask. It’s months till I speak to cardio again. Thanks Milkfairy. Xx

[Milkfairy Heart Star in reply to Mallowme]

You can also ask your Cardiologist to refer you for a second opinion.

Once the Covid pandemic has calmed you could contact your Cardiologist's secretary and ask for your Cardiologist to do the referral.

[Mallowme in reply to Milkfairy]

I’ve only ever spoken with the registrars. It seems to be someone new each time, I will just keep asking and hopefully they will want to get rid of me and so refer me on. Xx

[Milkfairy Heart Star in reply to Mallowme]

That's part of the problem. You can ask to be seen by the Consultant Cardiologist who is responsible for your care.

[Fluffybee in reply to Mallowme]

It’s certainly a hard one I admit, I’m fine for a while but every now and then it gets to me like it does to us all

We’re all here for you so don’t feel alone with this, there is a few of us on here, I’m sure anytime you want support and a kind word someone will be only to happy to be there for you !!

[Fluffybee]

Snap with the sleeping, I was in so much pain the other night it was awful, heat seemed to help on top of GTN, pain relief and a bit of time to work, as this is my first winter with this condition I’m struggling with it. Ive taken all of your tips and used them. I’m starting to accept this is lifelong and need to learn to live with it, stress and cold being my main triggers it’s hard to get out of your life so need to learn to cope with it alongside life 🥴

[Milkfairy Heart Star in reply to Fluffybee]

You need to count your spoons 🥄🥄😊

[Fluffybee in reply to Milkfairy]

Oh yes the good old spoons I’d forgotten 🤭

A question I was going to ask if anyone knows is, can micro vascular dysfunction come under the umbrella of ischemia ?

[Milkfairy Heart Star in reply to Fluffybee]

YesMicrovascular dysfunction and coronary vasospasms both cause myocardial ischaemia.

[Fluffybee in reply to Milkfairy]

Ok thank you Milkfairy

my Gp mentioned something along those lines but he wasn’t sure. I am assuming and I know you cannot say as we are a peer to peer group, but that because of this micro vascular dysfunction can cause possible serious heart problems ?

[Milkfairy Heart Star in reply to Fluffybee]

Here's the research.

eurointervention.pcronline....

Here's what the BHF says

bhf.org.uk/informationsuppo...

[Mallowme]

Sorry for my grumpy post. Caught me off guard. Son has been sent home (Friday) from work as his boss has come to work with a positive COVID result. Yes really. They even all had to stay to finish before they could come home. They are now hassling him to have a test so can be back at work Monday. He’s an apprentice, so scared for his job. I’m upset and angry as not feeling good anyway without sanitising everything in sight and dealing with a youngster with ‘isolation’ issues. Just worried and a bit scared about the next few weeks.

Fluffybee I really hope you have a better day tomorrow. Xx

[Fluffybee in reply to Mallowme]

Honestly don’t worry, it all gets us down, on or off guard !!

Awful about your son in that situation, fingers crossed all ends up ok with him.

I know the cleaning and sanitising is so important but there’s so many things that get touched just going from room to room.

I’m sure we’re all with you there on being worried about this terrible virus !!

[Mallowme]

Thank you for your kind words. It all seems to come at once. It’s interesting u say you’re so tired. I wonder if it’s the cold. Xx

[Magicfairy]

Hi Fluffybee, sorry you have had a lot of pain to cope with 😞, also know how frustrating it is being limited with what you can do, no way are you selfish, it’s normal to be fed up especially with the fight you’ve had just to get dental treatment, and nothing worse than being in the wide awake club 😩, on a positive note spring and summer is on its way, can’t come quick enough this year, wishing you well 🤗 xxx

[Sunshinebrew]

Same for me I’ve been worse the past week putting it down to the cold weather haven’t been able to walk the dog so my daughter has been walking her can’t wait for summer to be here

[Hidden]

Thanks for your post. You've answered a question I had as I've been getting lots of pain in my arms and weakness. 👍

[Fluffybee in reply to Hidden]

Hi Snoweybm

When do you get your pain, sorry I mean what are you doing when you get it, exercise, etc !!

[Hidden in reply to Fluffybee]

All of the time. I have been pushing myself lately. Afternoon it starts I suppose as I'm getting more tired. By evening it's in full swing...

[Fluffybee in reply to Hidden]

I get mine when I walk after a few minutes, doing to much, holding something that’s a bit heavy, sometimes for no reason, get breathless as well even just standing and holding something, seems weird but that’s what happens, my Dr said it’s because the heart has to work harder walking with something in your arms or standing like that which then brings on the pain, makes sense !!

[Hidden in reply to Fluffybee]

It does, I can only describe the pain as though my veins feel like they're shrinking.. Does that sound familiar?

[Sunnie2day in reply to Hidden]

Does make sense to me, that's how my (presumed) MVA feels at times. It's the weirdest feeling but shrinking describes it quite well!

[Mallowme in reply to Fluffybee]

Wow reading these posts it’s like you’re all in my head, just shows this is a real condition. Thank you all for giving me my sanity back. Xx

[080311]

So sorry your having a hard time at the moment, hoping for warmer weather so you can get more comfortable. I am the carer for my husband and he had a fall a week ago, luckily nothing broken but he is every colour of the rainbow! So I am more tired than usual, hurt my back trying to get him up, we have had so much snow, very pretty but not good for even getting out to the bins! Have had my vent now😂Hope you have some walnut whips in😂 keep safe.

Pauline xx

[Fluffybee in reply to 080311]

I’m so sorry 🤗🤗🤗 is your husband ok apart from being so sore and bruised ?

What an awful shock for him and you to be in that position.

I hope your back gets better soon.

Do you have anyone nearby to help you ? Get shopping etc, the virus is stopping a lot of help that people may normally offer doesn’t it.

Get better soon look after yourselves, you must be exhausted 🤗🤗🤗

[080311 in reply to Fluffybee]

It’s knocked his self confidence, very nervous again now, hoping given time he will get better. The stroke took his left side and some of his sight 5 weeks after my surgery 😩 but we have managed for the last 4 years. Pulled the muscles in my lower back and my right arm. Need to rest it but haven’t got a choice have to keep going 😂 So sorry the walnut whips are in short supply, your posts always cheer me up.

Hope you get some relief from your pain.

Take good care

Pauline xx

[Fluffybee in reply to 080311]

My goodness you’ve both gone through so much 🤗

Biggest hugs to you both, pleased my ‘whip’ woes cheer you up 🤗🤗🤗🤗 xx

[Sunnie2day in reply to 080311]

Yikes on the fall and you having to 'soldier on' despite having pulled some muscles helping him up! His rainbow bruising can't be helping matters, when I'm bruised like that even if it really isn't painful, just looking at it makes me hurt so your husband is probably not helped by that, either.

Have you thought about any of those home lift assist things? My neighbour has several (he has MD) and the council has been super about fitting those sorts of things. The only thing they can't help with is a lift assist recliner but they delivered a lovely electric bed for him last summer. He's in a wheelchair full time now and so doesn't need the lift recliner but swore by it until his condition progressed to the point of needing the wheelchair full time.

Lift assist recliners are an amazing home help as are electric beds (raise and lower to help a person get in and out), and if you don't have a wet room, a motorised lift into the bath is an easy retro-fit. He has the retro-fitted bath lift and now no longer needs a home visit to help with bathing - he's continued having a sense of independence which has been a huge boost to his confidence as his form of MD progresses slowly.

Worth looking into.

[080311 in reply to Sunnie2day]

Morning Sunnie,

It’s been a difficult week, but things are improving. He hasn’t any pain just really knocked his confidence. We have a wet room first thing we had done after his stroke. The boys got him a recliner lift up chair after his stroke that’s been wonderful because it’s a little higher than a normal chair it’s easier for him plus it can heat the seat and back and can give you a massage 😂, They are talking about putting a chair lift in just to make sure he is safe.

It’s my lower back, I did some damage 20 years ago trying to change a tyre on the car! So it’s not as good as it should be. I know it will take a few weeks to settle down, but I will be ok. Normally rest does it but can’t do much of that!

My Dad used to say getting old was the pits he wasn’t joking 😂

Hope your doing well we have finally lost all the snow.

Take care of yourself

Pauline xx

[Sunnie2day in reply to 080311]

Aren't those home assist items super?! I now confess to some heated-massage chair envy

Our snow was thin on the ground and melted off completely a few days ago - supposedly the middle of the coming week we'll be seeing heavy snow but I'll believe it when I see it blanketing my garden

My dad used to say growing older isn't for the faint of heart and he was spot-on with that!

We're well enough and hope the same for you - speedy uncomplicated recovery to you and your husband (pulled muscles and rainbow bruising, ouchie!).

[080311 in reply to Sunnie2day]

Must confess myself to using his chair when he as been in bed this week the heat and the massage on my back as been wonderful 😂 Ordered that goodie box for Paul from The House of Bruar should be delivered Wednesday, quite excited to see what he thinks. Certainly looks wonderful. Did speak to customer service and they couldn’t have been more helpful. Have put in lots of things I know he likes Haggis, Black pudding, some venison, gammon smoked salmon and some pork sausages with black pudding! Some pies and cheese. Some healthy treats some not😂 it’s been so long since we have seen him in the flesh you must feel exactly the same, not being able to have a hug for such a long time. It’s very hard.

Pauline

[Sunnie2day in reply to 080311]

We've given up on a 2021 reunion and are now planning for a 2022 one - hope floats!

Oooh, their haggis is wonderful, even better than our local butcher's so your son should be haggis happy for Burns Night

[080311 in reply to Sunnie2day]

Oh that’s good to know, bought last years from my butcher and shipped it down, along with some of his black pudding. This year Stornaway black pudding! And you say great Haggis he will be a happy camper! I have given up making plans, one of the granddaughters said the other day, I was 15 when we first went into lockdown and I will be 17 before we come out at the earliest. Felt so upset for her she should be having a great time, but she is at home with her parents doing her A levels on line.

I really think there are going to be lots of problems building up and once this is over it’s going to take sometime to pick up the pieces.

Pauline

[Sunnie2day in reply to 080311]

Whoa, 15 when lockdowns began and likely 17 when it ends - that actually is one of the best 'putting it into perspective' comments I've heard yet. Makes me feel even more sorry for the young people going through this.

Is she keeping a journal or is she blogging? My grands are, their parents told them they should and all five have taken it up now. Both sets (3 from my daughter, two from my son) are thinking of it as a school assignment but their parents are seeing it as something to put in their memory boxes to be looked back at in 20 years or so.

[080311 in reply to Sunnie2day]

Yes both that are here are keeping a journal, those in Australia haven’t really been in lockdown.When Maddie said about her age it really gave me pause for thought. She missed the celebration that had been planned for her 16th and her 17th will pass by as well.

She as missed so many things even getting her certificates just picked up from the school office at a set time! No celebration of getting her grades and moving on.

There are so many young people who have missed out on mile stones in their lives.

[Fluffybee in reply to 080311]

Hi 080311

Oh you know it’s absolutely horrific!!!!!! NO walnut whips for around 3 weeks now, everything I see looks like a walnut whip, it’s like one of those cartoons when a cat sees a bird thinking it’s cooked and ready for it 🤭🤭

I’ve had some walnuts but not she chocolate and whip for a whole year now 😂😂😂

I have home delivery and my shop doesn’t have them so I’m walnut whip bereft 🥺😂😂

[Sprit]

Sending all of you a group 🤗

[Mater123]

I'm the same !! X everything keeps dropping out of my hand.And after working all week I have to stay in bed all day sat.

When what I should be doing is ckeaning my house and spending time with my daughter and son.

This pure exhaustion is so frustrating

[Gazzer83]

Hi,

I have lived with my condition for almost 18 years, since I was 39. Frustration at not being able to do the things you used to do is the biggest factor. Even now I still get wound up about it and I know that I will pay for it with my body's reaction to this. Unfortunately you just have to learn to accept the changes. I found that sitting in a quiet place for 20 to 30 minutes helps me be calm and focus on my breathing and calmness.

Hope this helps.

Gazzer.

[Mater123 in reply to Gazzer83]

Yes it does thank you so very much. Stay well

[Mater123 in reply to Gazzer83]

Yes brilliant thank you 😊