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 😄
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Fluffybee
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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.
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
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
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 !!
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 🥴
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 ?
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
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
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
Thanks for your post. You've answered a question I had as I've been getting lots of pain in my arms and weakness. 👍
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 !!
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.
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.
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.
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.
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!).
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.
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.
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.
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.
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 🥺😂😂
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.
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I hope warmer weather comes soon for you and all those for whom winter cold brings pain. 
Fed up with meds
Scared and fed up! 
Confused and fed up
Seriously fed up
So fed up and tired
