Hello again,
Do any of you receive help or support from a loved one/friend/professional in the day to day management of your AF? Practical, emotional, functional etc.
If so please share this with me.
If not, please tell me what you think you would need or appreciate?
TIA ☺️
Generally my husband or daughter will bring me a cup of tea in bed each morning ☕️😃
Fibfab,
My wife gives me functional support in that as my AF is partly controlled/managed by diet and she does the food shopping (and I do the rest including booze) she is forever reading ingredients labels on packaging and additionally interprets my nutritionists recommendations as to what to serve for the main meal of the day, and the timing of it too. To over simplify it, I am gluten, wheat and oats free .......... but hell, much more than that too.
John
I get very little support from my family . Maybe partly my fault as I'm quite independent and don't like a fuss but I sometimes feel rather alone in my struggles.
This morning I have woken up to a heart rate or 110 instead of my usual 68 and have just taken 2.5mg Bisoprolol as a pip. We will see what today brings....(.Husband went off to work at 6.30am even though he should be retired at 71).
Good for your hubby Yatsura. I am still doing 36 hours a week at 74 and am having a ball. 😀 Actually, I haven't time for retirement 😂😂
MOH - 86 - finally gave up all business interests in December. Who needs retirement?
Did your heart rate revert to normal?
Yes Jean . ..over several hours but back to normal , thanks !
Despite asking my partner and family to read up on AF they still question me whenever I don't feel good...Expect me to walk for hours around shops
walk for miles over sand .Go out in hot weather and cold and be around for their problems.. Thankyou to my little dogs who love it when I sit down so that they can snuggle up to me.
Define help & support - functional? AF certainly hasn’t affected day to day living unless I had a very bad episode which rarely lasted more than 3-4 days but I had to stop doing the sports I loved which meant I lost a lot of friends. As my husband is significantly older and in pesistant AF with other problems I would say I support him a lot more than he me as he is less and less able to do the things he used to do. But these things happen with age and any condition and really not specific to AF.
Emotional - I haven’t felt the need for emotional support and would probably go see a counsellor if I did as family and friends just get fed up of hearing about your problems and are usually much more interested in their own.
Actually AF is the least of my worries, it’s managed, I go out and about when I can and it’s usually the other conditions which pull me down and are often much more immediately concerning. But then I have been living with it for the last 12 years so I am used to it. It is usually people who are newly diagnosed who need the most emotional support and information.
Could you explain your agenda more explicitly? I am not sure what you are wanting from us or what you want this type of information for? If for research - create a poll or a a survey on specifics. By the way AFA often do this so why don’t you approach them for information or even just pull down ‘polls’ and look at the results.
You may find these of interest which may help you.
healthunlocked.com/afassoci...
healthunlocked.com/afassoci............
Hi Fibfab
I'm not sure from your name whether you're male or female, but we females are very good at listening and counselling each other. I think men don't do that so much and wonder why. Do they see it as a sign of weakness I wonder? Come on men please tell us?
I've had AF for 14 years and I feel my family don't want me to talk about it now. They've heard enough and the sympathy that was apparent at the start has worn off, though when in AF and out walking with my younger daughter and family she'll ask them to slow down for me.
She asked me if I'd go on holiday with her and we're off to Croatia at the start of October, she said to me it will be cooler there for you at that time of year. So she's subtly caring for me. I'm feeling so well and full of energy at the moment, been in sinus rhythm for two months and not on any AF meds other than Warfarin. I'm really hoping I'll be that way when we're away. We plan to walk, cycle and swim.
People on this forum are the only ones I would open up to about my AF and the way I feel, because let's face it they know exactly how AF affects you. I can't speak highly enough of the care I've received here. Thank you, and love you all for the way you've supported me through my ups and downs.
I have one special friend I made on this site years ago, she's been my rock and cares for me via email as she lives hundreds of miles away. I can text or call her at any time and she knows she can do the same to me. We communicate every day without fail, giving each other caring and moral support at all times. I truly thank god for her.
Jean
So lovely to hear about your special friend. I had one too, but today is her funeral! She died from brain cancer. She was the sister I never had.
Oh Hylda, bless you, I'm so sorry to hear that. Will be thinking of you.
Big hug.
Jean x
Oh Hylda Im so sorry to hear that. Im sending love and prayers.💕
Hylda. I'm so sorry for your loss. I often find it much easier to share how I really feel with friends on this forum. Not really close to family. My daughter and I haven't spoken in over 3 years; I don't even know where she is.
I have a good friend here in Atlanta who is very supportive of me. But his healthcare philosophy is so different from mine. As those who read my posts can tell I believe in fighting the system when it isn't working for me. Independence is everything to me and his thinking leans toward the doctors know best.
My Afib is very well-controlled mainly because I have a wonderful Electrophysiologist who listens to me and allows me to always be the other half of my treatment team. I don't like meds in general. My pace and ablate has worked perfectly and he got me off all meds. When I wanted to get off anticoagulants he went to bat for me and helped me qualify for a Watchman device. That's working perfectly too. Some days now I hardly give a-fib a thought.
And he keeps me sane. Often my visits spend the first 5 minutes or so catching up on a-fib stuff and the rest of the time he helps me deal with stressors in my life that have nothing to do with any of my physical problems.
I also have a wonderful primary care physician who "gets me". I would like to leave Atlanta and move to a smaller town but the thought of breaking in new caregivers at 75 is overwhelming to me.
My a-fib and thyroid forum friends help keep me grounded, informed and able to keep up with knowledge I need to continue to manage my own healthcare. I miss being a nurse (retired 12 years) and I feel I help at least a few people here and there on my forums.
In the early sixties I was a music major in college. My mother spent years pushing me in the direction of being a concert pianist. But I knew inside I didn't have enough interest or ambition for that. One day I found the guts to stand up for myself and go to nursing school. My mother was angry but I did it and had a very good career for almost 40 years.
For me the hardest part about being a senior in the US is we are often warehoused in senior living, homes etc , often treated like children,and kept safe for our own good. Actually it keeps us out of society's hair in my opinion. We don't seem to have much value to a society geared to the young.
As usual, just my opinion. Thanks for listening. irina
Hi Irina
We seniors are treated like children at times, my daughter thinks she's in charge and seems to have started telling me what's right and wrong - huh - she can try! In hospital we're treated like children too and they don't really want us to give our opinions on anything, so I can imagine just what it's like for you.
I believe the most important thing we need in life is mental stimulation. Lack of this leads to lethargy and a downwards spiral. Thank goodness for the internet, though getting out and about and lively conversation is just as important!
Jean
PS I would really love to hear you play the piano.
Thanks. I find I 'call out people's behaviour when they treat me like a child. There is one staff member who thinks I'm a bitch because early on she called me 'dear' and another time I was sitting in the lobby and she walked by and patted me on the head. I know she meant well and it wasn't the end of the world but I wanted to nip her behavior in the bud.
I believe when you are working with seniors you need to be oriented about how we like to be treated-with respect for our age, what we have accomplished in our lives and understand we are not children and don't like condescension.
When I worked as a nurse it was my job to treat patients respectfully and now it is her job to treat me the same way. No slack cutting from me on this issue.
I think for many. this forum is the family they rely on for support. People need knowledge and to understand their condition and the "there there pat on the head and a lump of sugar approach" may work for a hammer v thumb situation but seldom for any long term condition .such as AF. It is the same with any such chronic condition and as others have said constant exposure produces indiference at best over time. HUL AF Association forum is a 24 hour warm blanket of help.
I get support from my other half. On the days when I've been off, ill and unstable she's always told me to not apologise and it is what it is. Doesn't always make me feel better but I know she's not putting any additional pressure on me. It was hard at first, and even though she's a nurse it still scared her. But she is the most supportive loving person I could ask for, and she's learnt a lot.
My family 60-odd miles away help when they can, my parents are both retired so can be down here within 3 hours if needed. Sometimes this has its disadvantages as I tend to go a bit "inward" when I'm unwell and mum can be quite highly strung/overbearing. Even though it comes from a place of love it is challenging.
People in my workplace are supportive unless they are in positions of responsibility. Some people I've known 5 months and have never seen me in my clinical role are more supportive than those I've known 15 years and seem "tired of it all" like I, in some way, am not tired of it all myself. Not that I'm a drama queen or constantly bang on about it, they're just indifferent about it after seeing it happen so often for so long. Having said that people I don't directly work with who have known me between 1-15 years are always happy I'm back (even when I was behind a desk) and are always pleased to see me and asking the other half how I am which is VERY uplifting but at the same time makes the attitudes of some "old guard" more of a let down!
Then of course there's this place. A sounding platform, a vital cog in the wheel of information and a boost when you can help someone who's going through something you've experienced or seen before. And glimmers of hope that people are out there living a life day after day and managing this beast.
I can't agree more. And I think having another place to vent helps take pressure off our families who must be around our illness all the time. Sort of like long distance respite care for them.
And they need it. My hat is off to anyone who does 24/7 care.
It's one thing to go to work, care for your patients, and go home at the end of your shift to a glass of wine. Quite another to not have time for a break when you need one.
Like most people in this forum who have had AF for years, we get on with everyday life. My GP tells me to limit my heart rate to 180 bpm during exercise (I'm 72) and that's all the support that I need. Balanced against surviving a stroke, impaired vision, and an upcoming fast track prostate biopsy. AF is "small beer".
When I was first diagnosed with AF I was in Hospital, had been admitted with HF. I had also been diagnosed with breast cancer two days before. I spent 12 days in hospital, had all the tests ect. When the cardiologist came to see me, he did not mention the HF only that I had AF and that this would be controlled by the drugs he had prescribed, he was a charming man but rather aloof, obviously did not feel the need to explain more to me. There was no mention of lifestyle changes or anything about side effects of any of the drugs, nor did he really tell me what AF was all about. As this was all a bit of a shock to me I had never heard of AF before I did not ask enough questions. I was given details of a AF nurse to contact, although a lovely lady she did not help a great deal. When I left hospital I was also given a contact of a community HF nurse, who visited me at home and thereafter I saw her at a HF clinic and could contact her by phone at anytime. She was my main source of info and support and even tough discharged from her care some time ago I still speak to her when I have a problem. So to me not enough was explained to me in the beginning so felt very lost. AS soon as I got home I was on my computer googling away lol I found lots of information some good, some confusing and some downright frightening.
About 6 months later I found this site and it has like many others have said been a god send. You can ask anything from strange symptoms (which medics when asked, never seen that before, not the drugs, donn't know answers) and find someone has had them to questions about procedures is here. Plus of course the humour and friendly people here.
I have support from my family, my hubby can sometimes fuss over me too much!!!. He knows that if I am not feeling too good I like a bit of peace and quiet and to get on with things slowly. I will tell him if I really need help. I do as much as I can, I know my limits and know when I overdo things (and tell myself off for being stupid). AF is not my only health problem, plus the aging process life has to go on and you must make the most of what you have. I am 72 and AF came into my life at the age of 67 plus the HF and breast cancer, before that I thought I was pretty healthy and envisaged that in my 70's I would be very active, I have had arthritis for many years but have coped with that, but it was not to be. Inside I feel years younger, if only I had the body to go with it.
Cassie
Know how you feel about the betrayal of the body. I find it hard to accept the difference in what I can do now at 67 and what I could do 10 years ago. I need to rest a lot more than I used to do and I find the pain of widespread tendonitis wearing. The afib is definitely not the cherry on the cake! My husband is very supportive but he too is aging and I like to keep up with what I see as my work .
I dont have any formal support like a support group. If there was one, I would go. This forum serves as great support and I trust the people here. My family, mostly husband is there for me. I dont really need physical support but it is great to know there is a person in my home that would do anything I asked or just his presence is comforting. I joke with him that I need to die before him because I dont want to be left alone, lol. I must also include our little rescue dog Pepper. When I am in a fib, he sticks right with me, wants to lay on my chest if Im in bed. I guess he knows something isnt right. Thankfully it has been almost a year since AFib has occurred. I dont even think about a fib on most days, which is huge progress for me. The first couple years it consumed my mind
This forum helps heaps!
I am hoping to learn more about how to support those with AF and pass this information on to others.
I believe that some of the most important things are: understand what AF is and associated risks, know the potential symptoms and what the different medications are. Healthy diet and lifestyle too plus exercising and sleeping well.
I have realised from this forum that anxiety is a huge issue. This is what I am hoping to get help with for those in my support group.
I think it’s also important, when supporting someone with a chronic medical condition, that you need to look after yourself too.
Please let me have your thoughts on this and anything I may have missed 💚
Harefield support group
Support needed please ..
New Patient support group in Surrey! All welcome!
