Sympathy for people who are really Suffering.

[shirlygirly]

Well after reading various posts on here I feel so sorry for so

many, the person with the water infection , people in real pain

and folks who find it difficult to cope with their af. At first you think

well you have to grin and bear it but actually if you are having a

really bad day its quite depressing. When I went to my pre-assessment

I was having a really good day, my heart was like a mill pond not a

murmer. I looked around and thought what am I doing here with

all these sick people and Im going to be taking a space someone

really sick could have. I honestly felt so well it was unbelievable and

when they did the ECG and Electrocardiograph I thought my goodness

I felt a fraud. No TOE required thank goodness.

Sat morning 4am awoke with a start my heart quickly made up for

lost time absolutely dragged myself around the whole day and I

felt depressed to think I could have such a great day and convince

myself Im making a mountain out of molehill about the af but then

you realise it hasnt gone away it was just waiting to get back at you.

I have gained so much from being onthis site and my heart goes out

to the many who have so many other problems to cope with as well.

Hope Ive made sense.

Shirley x

[jennydog]

Shirley, when I responded to your original post I forget to mention previous advice on the forum to take bendy drinking straws and a bottle of water with a sports top. I filled a bottle with Welsh tap water and carted that to Liverpool only to remember that their water comes from Wales too.

They would not offer to do an ablation for you unless it was deemed necessary. Some people do so much moaning and others cope because they have to. After my pvi the EP said " Given your history we were surprised at what we found."

Good luck. You'll be fine!!!!

[shirlygirly in reply to jennydog]

Thanks for reply Jennydog, do you have a dog called Jenny by the way,

ours is Milo a rescue westie, soft as a brush, love him to bits. When

I went away hubby stays with dog. I thought at first you wanted me to nip down to Wales for a bottle water. I must say I would like to

ours is awful, never have it without juice in first only a drop mind.

Your comments are all noted and I thank you for the advice.

Thanks again x

[jennydog in reply to shirlygirly]

Yes, but she died some time ago. An Andrex -type retriever called Jennifer Juniper, Jenny Woolypup or Jennydog. I cannot remember passwords so resorted to this one in her memory.

[Rellim296]

Yes, you have made sense, and I too feel a bit of a fraud, because I don't suffer from many problems and even when I have AF it's never been very debilitating. This doesn't mean it doesn't mess up one's life big time with its unpredictability and the way it has of undermining one's ability to function as one would wish.

All the best for your Big Day.

[Tobw]

I'd just like to echo your sentiments Shirley. i've got an unrelated health issue going on at the moment which might turn out to be serious, but, even so, I often feel humbled when I read what some people are going through on here.

[CDreamer]

Shirley you made perfect sense. The difficulty with PAF and many other illnesses is that it is unseen - ie only you know what is going on by how you feel; that is is paroxysmal ie you are ok some of the time and not at others. This engenders uncertaintity and loss of confidence in ones' judgements and that in turn leaves one with a feeling of anxiety at times and denial at other times as mostly, we want to feel well and get on with our lives.

All that is compounded by friends, family and work colleagues because if we get confused, they certainly do and I believe this gets projected into our environment in an out of awareness way. 'Is she ill and need support or not?' 'Wish she would make up her mind?' Type of reaction.

At present I am really struggling with several relationships because certain friends can't get their heads around my illnesses. I find this very wearying as I now haven't the energy to look after their feelings and will probably end up losing at least 2 of them when I really need support . I don't believe I am the only one in this position. (For those who don't know I had AF, none since March ablation, but didn't recover my energies and was diagnosed with Myasthenia gravis, an autoimmune disease which leaves my muscles very weak). On one level I can be the observer of this dynamic and on the other feel very bereft and rather abandoned when my close friends don't 'get' it.

I am of the view that we need to accept that this may be, how it will be and make the very best of the good times. Yesterday I went sailing for only the second time this year, I am paying today for it but it was worth it just for the memories of how good it was to be with people who did get it, feel the wind and sun on my skin and enjoy the beautiful wildlife and scenery on the south Devon coast.

Shirley does any of this strike any cord with you?

Very best wishes

[shirlygirly in reply to CDreamer]

Sorry its taken so long to reply, I understand the point you made about if people see you getting about they really dont realise how

debilitating it can be and you have the extra burden of feelng low

because of your other health problems. I have other health issues

which although no where near as debilitating as af, cause me so

much anguish that I often have a cry in the bath, even my husband doesnt know the whole story and thinks because I had a couple

of ops thats me ok now. I dont say anything because he couldnt

help anyway, plus its an embarrassing one. Sorry Im wandering a bit,

I think because you feel so weak and tired that you cannot be

bothered to explain it to friends and I know if they feel ok its hard

for them to feel continually sympathetic when they expect you

to feel better at some point. I had a neighbour who every I saw her

was for ever telling me her health issues so I stopped asking. Im

not for one moment suggesting you do that, but Im quite sympathetic

and she did live alone, anyway how bad do I feel she died on her way back from holiday last year, Ill never do that again.

Dont know if I made sense, but sorry things are not good for you

at the moment is there any a light at the end of the tunnel or is

it a permanent thing. Did the ablation cause it. Shirley xx

[Kjporten]

You make total sense. I am constantly having that same conversation with myself. I think it is one of the ways we a fibers get ourselves in trouble. Allowing afib to continue causes the heart to weaken, change shape, other heart issues to start. I try to just accept the fact that this afib thing is precocious and I have to manage it knowing that, and not let it manage me. A good medical staff is supportive of that and will not make you or allow you to feel like you are making a mountain out of a mole hill. Rather you are taking responsible actions for your health. I am 60 and I want to be a healthy active 70 year old. Thanks for the thread.

[Polldoll]

Hi Shirley girly

I have just posted on the afib site I think . You have echoed my thought re the suffer in silence , stop being soft , don't make a fuss , schools of thought and you are sooo right about the total horror of knowing " it's starting again " and from then on for me I know I have 5 or more hours of feeling drained hopeless and powerless in front if me ...

I wish I had called an ambulance the first time because getting the correct treatment that is the strong thing to do , not ' grin and bear it '

I have explained more on my post but just wanted to acknowledge your comments

Good luck