As many of you may know I had a hell of a Christmas and New Year, what with my health and my daughters run in with armed police officers. Well 3 month down the line and were no further forward, sadly no good news it's all bad. The police refuse to pay compensation for the replacement front door/frame for my daughter and we continue our fight, we've now made a formal complaint to the IPPC, fingers crossed that goes in our favour.
My health has continued to get worse, I had a Myocardial Profusion Scan on 30th December and that showed my heart was not pumping properly and I had showed Arrhythmias. I was then booked in for an Echocardiogram, results now in. Heart Failure, with less than 40% pumping fraction and Tachycardia........
OH my god, how do I deal with this.
I now have constant chest pain (not sure if it's my heart or stress/anxiety) and on top of all the other pain this is leaving me unable to walk to the end of the terrace (I live in a small cul-de-sak only 18 houses). Now my GP is suggesting stopping my anti-inflammitories and DMARD's...
Great.... He thinks he's putting even more pain onto me he can think again.
My plan is to wait until I see the cardiologist to discuss treatment options and to heck with my GP's suggestions.
My biggest worry through all this is; I'm on my own so when I should be resting I can't, there's always something to be done, plus I have 2 dogs which need looking after, exercised and fed.
You wouldn't believe it but despite, heart failure, very high BP, kidney disease, A.S and Osteo arthritis I look so bloody well, it makes me sick and no one believes I'm so ill. It's marvellous what a touch of foundation and lippy can do!
So to get to the present, I'm almost at the point of giving up and just asking to be put down.
I'm also thinking about arranging my funeral on a plan (something I've thought about before but now it seems more urgent). I've also, thought about making a living will just in case things go down hill quickly (I don't want to live with no quality of live) something to discuss with the cardio nurse.
Also, I'm trying to get rehoused into level accommodation and the council don't want to know because I've had addaptions in my home, it's policy for someone to be considered for a bungalow you have to be in desperate need or over 55. Most people want to turn the clock back I need to turn it forward. lol
Sorry to put all my stress onto you guys but I really needed to get if off my chest. Now hopefully I'll be able to think more clearly, be positive and get things moving forward.
Lots of love and good wishes to all
Beth xxx
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Beth58
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Beth, things aren't getting any easier for you are they my love. I really don't know what to say to you as you are having it as hard as anyone i know at the moment. All i can do is send you cyber hugs and kisses and lets hope for a better future for you.
Thank you so much Sylvi, it means so much having this site and being able to offload and the support I get from you. xxx
Beth I just wish I could say or do something for you that would make it all seem better. I can't but can offer you a huge cyber hug and tell you that at least you have put my own worries and problems into perspective - which will be of no consolation to you of course. I think you are desperate and you should easily qualify for a bungalow if I ran your local housing office but I know, even from my own experience, that the most worthy people and causes are not always the ones that get flagged up for priority attention so am also, like you, a realist. All I can suggest is that you go back to your GP and explain how bad things have become psychologically for you now as a result of all these conditions - the fear, worry etc. He may then get on the phone to your cardiologist and the other specialists and get a plan of action in place before you crack completely. Don't say sorry - that's what this place is here for! Tilda xxx
I agree with you Tilda, I just don't have the energy at the moment I feel like I've lost my fight. Rather ironic that I used to go into peoples homes to assess their needs and find support and make referrals on their behalf and now I can't do it for myself. xxx
Hi Beth, well it sounds like your worst worries have happened and you must feel gutted and understandably so. I think its great you have made plans on how to cope with your heart condition and i suspect at the moment its putting the RA into second place for a change!
Have you thought of talking to the British heart foundation they are very good and knowledgeable about how to cope with the heart failure ...as long as you dont desert us on their blog site lol!!!
Also your GP could refer you if the hospital has not already to the specialist cardiac nurse. They are very good for getting you help around the house and with supporting you or directing you to help with housing, aids etc.
Also when you see your GP about your RA treatment ask him for back up with your other needs, they can get you a care nurse or refer to Social service help.
Another place of real help when you are in this situation is as i said Social services. I know lots of people dont want to do this but they are wonderful when you need this help, they can help with housing etc etc and benefits and a million other things. And as Tilda says you could get real help with a action plan.
I know this cos I have a family where all my eight uncles , my dad , and my grandmother, and now me all have RA and heart conditions and these are the people that helped our family. I wish you all the luck but you know once you get someone like the social worker to do the fighting and trailing around for you it gets much easier, honest.
With all that practical stuff over! i wish you lots of luck and wanna give you a big hug and say "there there "with a nice cup of hot chocolate in front of a warm fire and make things better for you. Keep talking to us, we are your familyxxxx
Cheers Allanah, thank you so much for all your support over the last couple of month. I know what I have to do just don't have the energy, I know your right, it's only going to take on call and hand it over to someone else to sort out on my behalf. xxx
Oh yes and I did want to add that my dad also had arhythmia as well as diabetes, high blood pressure and gout and he lived a full and active life until he was 73, and was starting to get altsheimers and went for a swim in sea with a very cold undercurrent and drowned. You aren't done for yet Beth so please don't give up - although sorting out wills etc is a sensible thing that everyone should do. TTxxx
Cheers Tilda, sorry but I couldn't help but laugh. Rather ironic ain't it.
I haven't seen the Cardiologist yet so not sure what's caused the heart failure, it could be congenital and we just never knew until symptoms started or the Tachycardia or even the heart failure causing the Tachy, I'll just have to wait and see what the Cardiologist says about the Profusion scan and Echo results together.
My GP indicated there'll be more tests to find out exactly why my heart is failing me. God knows what they'll be. lol
Thank you so much for the words and trying to cheer me up. xxx
Laugh away please that's kind of what I intended - my dad would have wanted to cheer you up too so he wouldn't have minded either! So hope test results aren't as awful as you fear and sure there's stuff they can do for you anyway. It's the undetected heart problems (like the one that killed my mum 2 years ago!) that finish people off unexpectedly not the ones they have diagnosed usually. TTx
Yeah that's something like what my doctor said, I left him saying: "I'm off home to feel sorry for myself" he laughed thinking I was joking but boy am I, tears enough to fill a river at the minute.
Really I'm still in shock at the minute, we weren't really expecting to find anything and I was blaming inflammation in my breastbone for the pain.
Sadly for us lot once diagnosed with any form of Arthritis inflammation seems to get the blame for everything. xxx
On top of everything that happened with your daughter, it's really not fair for you to have been loaded with so many other problems. I really hope that your cardiologist will give you more positive news about what could be done to help. And the techniques available now are remarkable. But please moan away whenever you want - I think you're well entitled!
And I'm sure your daughter wouldn't want you to be stressing about her problems when you've enough of your own. Hard to do I know, but you need to try to focus the energy you have on yourself in the short term. So loads & loads of sympathy, wish we could email virtual cups of tea!
As well as the others things suggested do you have some like a Helping Hands near you - they are really wonderful volunteers who do stuff for people (they drive my mother to her hospital appointments if we can't do it). There are also organisations that organise volunteer dog walkers - I know you want to take your own 2 out yourself as that's so much part of having a dog, but perhaps while you're feeling so bad it could help to have someone to call on. The one that I volunteer for is only local to me (I can't have dog of my own at the moment, so it's great getting to play with someone else's every now and then), but a bit of googling might find someone who'd love to help.
The other thing is that I don't think it's morbid to do stuff like wills and funeral plans. I've had to deal with a number of funerals - most recently two close family members one without a funeral plan and one with. What a difference. It is a huge help to those left behind to know that they're doing what the person wanted, never mind the whole money side of it all. It sounds a bit wicked but since the funeral plan takes care of the basics I've also left my family a humdinger of a funeral to arrange, so they won't have time to miss me they'll be too busy dealing with the exact things I've asked for. And I've done a living will too - and I have no intention whatsoever of needing either for a long time to come, but just wanted to be sure that my intentions were clear.
I hope you get to see a cardiologist soon. Take care. Pollyx
I have spoken to you before about my dog - she is a golden retriever called Honey !
I do feel sad when i read your blog but know we have all been in such low places and somehow we pulll ourselves back up - which i am sure you will do with help.
If i lived near you i would walk your dogs with mine ! i would love to and it brings a tear to my eye because i know i cant x but i agree with Polly about getting someone to walk them even if you have to pay as you will feel better knowing they are enjoying themselves - i know it is something you would rather not do but think of it as only temporary and i am sure they will love the company of the other dogs and the fuss you make of them when they come back ! !
So sorry to hear you are having such a rotten time, its just not fair and you have been so helpful to others on here. I hope the cardiologist gives you some help. Terrible situation with police, I had a similar problem, with them walking all through our house when we were away and the teens were on their own, they had no right, twas just a bit of misic!
Could you get a dog walker to help a couple of times a week. I know the feeling when you are sore and the dogs are gazing at their leads longingly.
I also understand, you can look fine, bit of make up does wonders, when I was in work, people used to say you look great. Some came into work without a scrap of make up (the martyrs) and of course they looked worn out.
I hope you feel better soon, and don't be planning funeral, thats v depressing and not a good thought to dwell on. a living will is ok though.
Sorry that you are going through so much trouble, good luck with your compaint to the police hope you get somewhere with it . I hope you get to see a cardiologist some time really soon, i have 8 members of the family with your condtions, and a couple of friends and my grandad is the oldest at 86. It is huge shock, but they can do a lot for all of these conditions, there are betablockers, nd you cn have a pacemaker fitted to control the arthymia, and that does work for a lot of people. my grandad has had heart failure for 25 years and my dad for 28 years they are both with us, don't give up, give yourself time to get your head around it, and ask all the questions you need, for tacyicaria they can give propanalol, a beatblocker and that works really well. My friend has been on that for a year, and i have been too and it works a treat. Your rhumy and cardiologist need to work together to sort out the meds, so ignore the GP, they are not a rhumatologist. Easier said than done, but please take care of yourself and wacth your stress levels, sending you a hug and warw wishes, hope you see the cardioogist soon, and that you know easier times than what you have just had. Hang in there. x
Beth I always find your advice so sensible and compassionate and insightful. Now you need some of that. Is there anyone in your life who can take responsibility for driving things forward while you are so low? It sounds as though you're in shock - hardly surprising. Reading the comments, it does sound there are good options to pursue, but maybe you need someone nearby to do a bit of fighting for you. Xxx
Beth, It sort aof brings a lot of other peoples problems into prospective. You have received some very comforting replies above and I can't add anything to that but send you lots of love and support. x
You guys are wonderful for helping to clear things in peoples heads.
I had a really bad day yesterday, lots of pain and tears (the weather didn't help, lots of rain, snow and strong winds).
This morning I woke feeling very sickly took a anti nausea tablet (which I forgot I had) and wow. Nausea almost gone, still feeling chest/back discomfort but much better and feeling so much more positive.
I realised answering someone else's question that that's what I needed to do for myself. So happy to say; I made the call and arranged for someone from social services to come out and see what they can do to help.
Thank you all so much for all the virtual hugs, support and advice.
It proves during our bleakest moments there's lots of love and support out there and tomorrow is another day, so never ever give up and ask for support when needed.
Hi Beth, sorry to hear about your heart failure. When we lived in the UK my husband worked as a heart failure specialist nurse in the community. I am not sure which hospital you are being treated at but many of the cardiology depts have cardiac specialist nurses working for them. If not get in touch with the British Heart Foundation who should be able to get you in touch with the nearest BHF specialist nurse. There are a lot of drugs around to alleviate any symptoms (I know, more drugs) and off load the heart so don't despair. I hope that you get to see your cardiologist soon. In the meantime, take care of yourself. Wx
My consultant is based at the Freeman in Newcastle, I knew there was specialist nurses but not sure how to contact them. I've received written results and an appointment for next month so I'll ask the nurse then about other support available.
I think if I get as low and desperate as I did last week I will ring the BHF and ask if there's any counselling near me. Initially I was in total shock and frightened for the future and the plans I had.
I am having some degree of breathlessness and terrible nausea at the minute and my BP/heart rate is dropping quite low for me (I normally have high BP and heartrate over 110 even at rest) today it's dropped to 90/50 with a heart rate of 51 needless to say I'm dizzy everytime I stand up, so frightened to drive. The sooner I see the cardiologist the better.
Hi Beth, hope that you are ok and the symptoms have subsided. Also I hope that you have spoken to a specialist nurse and or seen the cardiologist, but I won't hold my breath on that one. take care of yourself. Wendy
Hi Wendy, I'll save you holding your breath, as you've guessed the answer is no.
I can't do anything without becoming worn out and breathless, had a couple of bad turns so went to see my own doctor who thinks the it's inflammation and anxiety. My BP and pulse are still fluctuating (high then very low, like a yoyo) and nausea.
I'm glad to say I've got my appointment to see the cardiologist next month but if things get worse I'll be phoning an ambulance. Just worry about the dogs if I end up being kept in hospital.
By the sounds of things you need to be seen sooner rather than later. Is there a friend who could look after dogs or put them into kennels if you need to go into hospital? maybe good to have a plan of action if needs be.
Yeah I've arranged for my son to stay at my house and when he needs to go to work, the girl who grooms them has a boarding business too so they'll be spending time with her and her family. xx
With the marked drop in BP / heart rate I hope that your GP is monitoring you closely, is he aware that you feel dizzy - if not please contact them asap. I am glad to see that you will be seen at a specialist centre, the Freeman always had a good reputation. We both worked on a cardiothoracic ITU in London many years ago (it's where we met ! - Aaah). Take it easy and keep your chin up. Wendy x
Beth, I have only just caught up with some of the blogs. I am so very sorry you are having so many problems with your health.
Do have a word with the BHF anyway - they are very good at helping, listening and putting your mind at rest. I also have heart trouble in the form of Angina so I am monitored carefully with the drugs I am on so that they don't cause further problems. I also have asthma so sometimes don't know if it is Angina pain or asthma problems. Good luck with the cardiologist - there are so many good drugs available that enable you to lead a normal life. (I know, I am on 3 a day to help my heart and it has been ticking over nicely for the last 8 years)!.
Social Services are very good = I had them come out to me 3 years ago and I now have equipment to help me. I am sure they will do their best to help you as well.
Sorry to hear your claim to the police produced the usual brick wall response. I know you don't feel like it at present, but do persevere with the claim. They got the wrong house and they need to pay the compensation. Have you applied for any benefits such as Housing etc? Do persevere with the council and trying to get rehoused into level accommodation. Sometimes your MP can help with that or your local Ward Borough Councillor.
I think we all think about funeral plans from time to time. I know we have been and thinking of going to our local funeral directors to make arrangements. It doesn't hurt to plan in advance no matter how many years down the line it is before we drop off the twig. I've never thought about a living will although I know people who have done them but when my father was very ill we did talk about it and he decided not to be rescusitated if it came to it and in fact, he wasn't. As his next of kin and also his Power of Attorney, I had to sign the forms at the hospital.
You could consider making a Power of Attorney in the event of illness so bad that you need hospitalisation. Nowadays you have to have two - one to deal with illness and one to deal with finances. They were supposed to have made it easier but ended up making it more difficult! Typical.
Will be thinking of you and will send you a separate message with my phone number in case you would like to talk.
Try to get as much rest as you can. It is difficult with 2 dogs which need walking but perhaps a friend could do that for you for a while? Or is there someone local who does dog walking? Sometimes people advertise in their local shop - might be worth a look. Lots of love and hugs. LavendarLady x
Dear Beth, I am so sorry to hear your bad news, have you heard of the cinnamon trust,? they can get volunteers to help you walk your dogs.
I have an older friend with a congential heart problem and high blood pressure.. the two lower heart chambers didnt form properly at birth and he didnt find out until recently, he has been stabilised with medication .( he has less than 50% heart function).
and takes his dog for short walks and does gardening.. he like you and me lives on his own so there is hope dont give up
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