Need to share how I am feeling

tillytop

I have written and posted this message several times and then taken it off again because I don’t feel I can post openly and honestly but I have just got to get this out so I don’t explode/implode or something. No replies needed.

Over the past few years I have pretty much lost faith in the medics for reasons I won’t bore you with but an appt I had on Tues was just one more example.

I have had an unexplained cough for several years, along with chest pain, intermittent breathlessness, pitting oedema of my lower legs – all of which have been mentioned to the GP/rheumatologist periodically and brushed aside as not important, or stress related. So as with the many other unexplained things I have got used to living with, I was just getting on with it because there was really no other option. But I became frighteningly breathless again towards the end of last year so I felt I had no option to go back to the GP. Since then I have had 2 CT scans, 3 chest x-rays, a multitude of lung function tests, 2 appts with the chest specialist, 3 courses of antibiotics, and trial of a steroid inhaler but my breathing is no better and I am no further forward as to what is going on. Although that is frustrating, it is not wholly unexpected, but what I am struggling with is the emotional roller coaster associated with being told different things by different docs.

GP has told me cheerfully that he is pretty certain I have untreatable rheumatoid lung disease. A locum rheumatologist told me in December that she had never heard of a lung disease with intermittent symptoms like mine and implied that it was in my head because I was depressed (which I am, but that doesn’t mean that my physical symptoms should just be ignored). The radiologist reported that my first CXR showed infection – but when the chest specialist looked at it and said there never was an infection. The lung function test the GP did showed severe breathing restrictions but the first thing the specialist said was that he was going to disregard those results – presumably because he didn’t believe them. My first CT scan was reported normal but when the chest specialist looked at it he said it wasn’t normal and more investigations were needed specifically to check for clots on my lungs. The second CT scan confirmed no blood clots and so far no-one has changed their mind on that one thank goodness. The breathing tests I have had at the hospital have been normal – because both have been done on days when my breathing has been better, so that doesn’t help either.

On Tuesday I went for a follow up appt with the chest specialist. It was a different doc this time and, guess what? The initial CT scan – the one which was reported normal first time round, but which the first specialist then said was not normal, is according to yesterday’s doc, completely normal. So, having been trying to get my head around the idea of lung disease – specifically bronchiolitis obliterans – for the past few months, apparently my lungs are “pristine” and now they want to investigate my heart instead – which takes me back to the chest pain, rapid irregular heartbeat, lower leg oedema etc which I have been flagging up to various docs for the last few years, only to be ignored!

I am just so angry and frustrated and feel at the moment that there is no point going through any more tests because it’ll just be more of the same and, no doubt, at the end of it I will be none the wiser and the pains, breathlessness etc will still be there. I am struggling so much to cope at the moment and feel I am barely managing to keep my head above water. Home, instead of being a nice place to be, feels like a prison because I am so limited in what I can do and the days stretch ahead endlessly with seemingly little to look forward to. Added to which I have been terribly upset by a falling out I had with my Mum a few weeks ago during which she said - and I quote – “we meant it when we said we would do whatever we could to help you, but if we had known how long it was going to go on...” which told me in no uncertain terms that the offer of help was time limited and I have, to coin a phrase, used my credit. So now I just feel guilty for imposing on their lives so much, and stupid for taking the offers of help at face value. And that’s quite apart from the almost unbearable guilt I feel for the impact my health has on my wonderful, long-suffering husband.

To me this doesn’t feel like living – it feels like barely existing and I am constantly aware that it could so easily be over and done with if I choose. I am not even remotely frightened by that possibility for myself but I just couldn’t – and wouldn’t - do it to my husband – which just leaves me feeling even more trapped because there is no way out. I have polished off half a bottle of wine this morning, mixed with a couple of codeine just to "take the edge off" how I am feeling and I know that's not going to help but I don't know what else to do.

Thanks to anyone who has read this far.

stickywicket

My dear, lovely Tilly. It ought to be wonderful to see you here on this forum again but the circumstances mean that it isn't. I'm so sorry life is treating you so badly. As you know, I managed to find this post when you put it up briefly the other day and I replied to you then.

My views haven't changed much so I won't bore you by repeating them. But I will repeat - ad nauseam, if necessary - how valued you are on here, what a terrific job you do of supporting others with your understanding, empathy and generosity.

That, in itself, is of no help to you with your own big health issues. I wish I could help with those, Tilly, but I can't. I do think though that, if you would allow us to, by coming on here more often, we might be able to help with your feelings of despair because you would become more aware of just how much, and how rightly you are loved and valued. Don't be alone, Tilly. ((((()))))

lululu

tillytop First I want to say how impressed with the way you have supported and helped people when you can while you have been feeling so bad.

I can't really offer any help but have you considered having a chat with PALLS (Patient liasion Service) at your local hospital. They are there to help and support people in your circustances. You can tell them your story and they may be able to help you I think they can also go with you for appts. etc.

I really feel for you tillytop.

suzygirl

(((Tilly))) you are one of those people I would love to wave a magic wand over. I am constantly appalled by how those in the 'caring' profession treat their patients.

A chronic illness has a huge impact on us, our minds, bodies and emotions. It just erodes away our self confidence and worth, till we question what is left. Yet, we still plod on, and on. It takes courage to admit we are struggling, and allow others to show their kindness by supporting us.

Manyof us on here are happy to reach a hand out to you, so grab on and hold on tight. Maybe together we can pull you back up???

Huge (((hugs))), much love and a cuddle from Izzy x

Turbogran

oh Tilly i do really feel for you you are going through such a lot at the moment but as others have said please dont try to do this alone allow all the lovey peeps on here me included to as Suzygirl says pull you up again and support you (((((()))))) coming your way. hang in there.

Numptydumpty

Dear Tilly I just don't have the words to comfort you. You are so supportive of everyone on here, you deserve so much more. You are practical and caring, you have so much to offer. I am really sorry you are feeling this low.
Just remember we are always here for you, just as you are for us.
Thinking of you and wishing you well,
Numpty

tillytop

Thank you so much - I can't tell you how much I appreciate you taking the time to reply and I already feel so much better for having felt able to share honestly, rather than doing as I usually do and trying to pretend it's all fine and I'm coping.

The sun is out here now which always helps me to feel brighter and I am going to make myself a sandwich and a cuppa and sit in the garden for a while.

Thanks again.

Tillyxxx

pinkbritishstars

Leaving you a hug Tilly as I think you need a load of them at the moment xxxxxxxxxx

janie68

Oh Tilly,

Have you told your hubby how you are feeling? I hope you feel a bit, I mean a really little bit better after posting, you were very brave to do that. It takes a lot of guts to really say how you feel.

We a re all here for you, we cannot help you practically, I am sure that peeps would do if they could. We are all with you and support you with no limits.

Keep posting will you?

Sending lots of hugs

Janie x

dreamdaisy

Oh my lovely, lovely tillytop, I am very glad that you have found the courage to post. Many of us 'older' hands on here are fearful of being too honest in what we say in our posts, especially when things are so very tough, but as you have always told me if it's a personal post then of course you put what you need to say. You have and well done. You have so much going on, the RA is possibly the least of your troubles at the moment and I know that none of us can 'help' as such but we DO care, very much indeed and please stay in touch with us, PLEASE. DD

Poppyg1rl

Tilly my lovely,
I'm so sorry that you've been treated this way. It's appalling and so unprofessional to say the least, if your Drs were in any other profession and repeatedly made mistakes and got things wrong, they wouldn't be in that job for very long would they?..these so called 'professionals' seem to be the exception.
Tilly, families deal with a loved one suffering a chronic long term ilness in lots of ways, but saying that you're effectively 'out of credit' is shocking.
I'd like to remind your Mum that you don't ever stop being a mother, there is no 'time limit' to support and unconditional love. I pity her if she doesn't realise the wonderful treasure of a daughter that she has in you.
It's her loss Tilly, not yours. Your husband is probably suffering along with you honey, you both desperately deserve more help than youve been getting, I would suggest ringing the helpline Tilly my love and talk it out with them, they are wonderful and sometimes it helps just for someone to listen.
Sending you all my love, chin up honey, you know we all love and respect you Xxxx

JuliaHod12

Dear Tilly

I concur with all the others postings.........you are worth so much more than the terrible service you have received.

I applaud you for having the courage to be honest about how you feel as well..............thats a thing i really struggle with.
As for your using up all your credit..........hmmm seems a few members suffering from that one as well.

I hope you get resolutions and the help you deserve

Julia x

Puschinka

Dear Tilly, let me add my warm and sincere wishes to all the others from the warm and sincere members on this forum. I'm so sorry you're feeling so down and have no words of wisdom :? except that hopefully the support you're receiving from your friends here will help you a little.I really hope so.
Unkind and thoughtless remarks hurt so much, especially when they come from your own family.
I did the 'bottle of red wine-to take the edge of- thing' just the other day (it didnt take any edges off, just made me really ill for three days !)
Hope you feel a bit better soon. xx

CJHunter

((((x))))

Take care Tilly.xx

theresa4

Hi Tilly

Its so unfair at the way youve been bounced pillar to post through the system with no answers at the end. I really feel for you.

I cant add much more to what others have said but I will say you are a great person and despite all youre illness you have been a great support to many including me. Im so pleased you finally felt you could post on here how you are really feeling. Thats what this forum is for. Im sending you much love and hugs right now ((((()))))

Theresa xx

mig

(((((((((((((())))))))))) Mig

julie47

Tilly I haven't been around for a few days but I am glad I have just popped in for a moment today. After reading your post I just wanted to send you a massive hug ((((((((((((((((()))))))))))))) and say, dear tilly you have always been there for me and given me such lovely advice and support and for that I thank you.
I am just so very sorry that you are feeling so down and hope that very soon you will start to feel a little better.

Just Remember that You are a well loved member of this forum. You can see by the lovely responses you have.

Take Care
More ((((())))))
Love Juliepf xxx

tillytop

Thank you so, so much to you all for your kind and wise replies. I will reply properly when I can wake up, having been asleep all afternoon :roll:

Tillyxxx

jaja

Hi tilly....sorry to hear how unprofessionally you have been treated ....im sorry i cant do much for you but send you...(((((((((hugs)))))))))


Nothing stays the same...good times or bad times everything passes....

JAJA

emsjane

Ohh Tilly, you poor love!! Don't you feel like you want to scream at all the professionals and say, you're not listening to me!!!!

I often come away from appointments and think, why didn't they ask me this and that!!! It's so frustrating cos then i feel they haven't really got the whole picture of whats going on with me and then i think well how can they treat me correctly if they don't know the full extent of whats going on!!!

I worry alot about the way you are talking, you do sound really, really depressed. If you are feeling desperate at all, please don't suffer in silence, even if you ring the samaritans and talk to them or come on the forum and talk to us lot, we will all be here for you!! Im pleased to hear you have a supportive husband, but i know sometimes you don't want to keep talking to them about your problems and loading it all on to their shoulders, so please come and talk to us as you know we all understand and are happy to listen.

Im sending you a big (((()))) x

ritwren

Dear Tilly, what a shameless way you've been treated! It's taken real guts for you to come on here and open up your heart and I'm glad to hear it has helped a little to get things off your chest. The forum is always open and you know there are people here who care about what's happening to you and want to send hugs and support in any way they can, I'm one of the many people who wish things were easier for you and you had satisfactory answers.
Do keep your appointments to find out what's happening with your heart even 'tho you might feel it's too little too late. Could you speak to another GP about how depressed, let down and upset you're feeling? I'm sure you know that the helpline here will help in any way they can as well.
I hope things improve for you and you realise how valued you are. Big hugs, Rita.

barking1

Dear Tilly as a newbie i dont have the words to express how i feel about the way you have been treated, please dont ever give up you are worth far more than that , and keep posting so everyone on here can be as much help as possible xxxx take care of yourself xxxx Jane

babytiger

So sorry to hear that your getting treated badly Tilly,agree with everyone else. You take care ((((( ))))))) xx

valval

hi tilly i am so glad you shared with us that is what we are here for i know it must be so frustrating but please go for what ever tests they want we love having you as part of the forum. i just do not understand how any one could say if not out right that there is a time limit to how much they would help i know you for one would help others how ever long it takes but not every one are as careing as you. enjoy the sun when you can it does help


(((())))
val

tillytop

Thanks again all of you - so very much - for taking the time to post on my thread, specially when so many of you are struggling yourselves.

I am feeling very guilty for posting about my falling out with my Mum because I don't want to portray her in a bad light. So to set the record straight, I need to say that my Mum and Dad have been a huge source of support to me over the years and particularly so when things have been so very difficult over the past 4 years or so. The problem arose because my Mum felt that she didn't know what more she could do to help and that I needed professional help to cope with what was happening. She was also struggling with her conscience because she felt guilty for wanting to do her own things rather than being there constantly for me. I completely understand all that but, because my Mum doesn't find it easy to communicate what she sees as difficult things, she tends instead to bottle it all up and then it all comes out at once, often in quite an aggressive and hurtful way. And then she feels guilty and tries to make it right by going over and over it again, backtracking on what she has said and looking for reassurance that everything is ok - which is how the "if we had known how long it would go on" comment came about. And because she still feels guilty for wanting to do her own things (which she shouldn't) she says to me almost daily "if you want some company, we are here" which I know is not what she wants - particularly as they are often accompanied by hopeful comments like "how lovely that you are managing on your own" which is what, understandably, she would like to believe - both because that is what she wants for me, and because that enables her to get on with her own things without the guilt. Because I am aware of this, I am trying really hard not to let her know how things really are, so I do my best to pretend and the sad thing is that I don't ever feel now that I can go and see my Mum and Dad - even just casually to say hello - because I feel that I will come across as needy and they will think they have to stop what they are doing to spend time with me which isn't the case at all. Equally I don't feel I can even ask my Mum for a cuppa occassionally because I feel that will be construed as a request for help which she no longer feels she can give. So unless I am specifically invited to go and see them, I don't - and because that doesn't happen often I see them less and less.

I suspect all this makes me sound very selfish - which is my overriding feeling. I never for one moment expected anyone to live their life around me - in fact that is the last thing I want. I hate burdening others with my inability to cope. My husband is absolutely wonderful and I know how lucky I am on that front but I feel he must dread coming home from work sometimes, not knowing how I will be. He tells me all the time that I must feel I can talk to him about how things are - which I do - but it doesn't stop me feeling so very guilty because I am not coping and I am making life so very difficult for both of us.

Realistically, although I am struggling hugely with the physical stuff at the moment and can't see the wood for the trees, I think it's the emotional side of things that I am finding hardest and I hate feeling this out of control and unable to cope.

Think I am rambling now - but having the opportunity to write things down might help me gain some perspective. And on a postive note, we are hoping to be able to go out for the day tomorrow which will be lovely if we make it.

Thanks again.

Tilly xxx

lululu

Tillytop I know it is dificult but why don't you ask your parents to maybe meet you in town for lunch or something, meet on nutral ground in puplic so that then you will not be able to argue. Don't leav it too long till your next contact. Sound like you and your mum are very much alike - don't say how you really feel till it festers and then it all tumbles out. It is hard tilly but you have got to try to make it right with your parents because that is so important for you.