Need to share how I am feeling

applerose

Hi Tilly. I'm quite new here but it is obvious you have some good friends on here who want to help you through this. Please keep posting on here and let us try to help cheer you up a little. I think it is a good idea to contact patient liaison. I'm sure they will be only too happy to help. (((hug)))

magenta

Hello Tilly,

I don't know what to say to you other than I hope you start to feel better soon. You're having it hard right now but it will get better. We're all here for you, so anytime you want to talk, we'll be here to listen and try to help as much as we can.

Take care Tilly,

Magnta x

jillyb1

Don't know you very well , Tilly , but wanted to send hugs and positive vibes and to say that if your hubby is half as good as mine is ; he won't be feeling burdened , he'll just be wishing he can ease things for you and wants to take care of you ~ allow him to do so ! Jillyb

bounce

Tillytop,

It took great courage to put into writing how you are Really feeling. Your 2 posts had me crying, as My family have been through the same kind of emotional stress for the lack of better wording, I can understand how you and your husband are feeling along with your parents. and especially you with the mis diagnoses, and the stress and strain all of that brings, but you must for your own sake keep up with all the appointments and tests that will be coming your way.

I can only imagine that you could be feeling like **** the appointments that you have had enough of them only to find out that the doctors and specialists cant even agree on a result, I can only think that you want no more of it and what happens, happens, but please dont think that way, go through all the rigmarole of the tests etc, you will get a proper result findings in the end,

Your parents seem as they are lost on how to cope, and yes harsh words have been said, and cannot be taken back, I bet you are a lot like you mum personality wise, if not I apologise,

when serious illness, longterm or terminal, people try to deal with things their way, its not neccessarily the right way, yes there will be tears, tantrums, fights, harsh words, despair and a lot of crying happening as things are being tried to be sorted out.

It can take time for relatives to avaluate "how they are" towards other relatives are, and there is no manual for it.

It was my mum going through the life changing tests and finding out the results etc, I thought I was coping with it all well, but really I wasnt, things were said that never should have been said, feelings hurt for a long time, but through all of it, and relearning on how to deal with the situation better we all forgave each other for the whole situation, and I helped "care" for her for 4.5 years before she left us.

what im trying to say probably rather badly is that everybody will behave rather differently then what is normal, but everybody will rally round fantastically soon enough, family always do. just wait a wee while.

I am sending you a shedful of hugs, well wishes and lots of good luck, when I first started on here you were one of the first to welcome me into the fold, and for that this young upstart is very grateful for your kindness.

I hope reading this that you realise that Im not belittling your situation or taking sides with anybody, your two posts caught me by surprise and this is trying to say I can see what you are going through and that I can understand it too.

well I hope it comes out like that, if not im so sorry, but im trying to be supportive, im out of practice at that lately.

all the very best wishes to you,

and always keep your chin up.

Love

Julie XXXX

ironic

Oh Tilly, no wonder you are down, unforgiveable to be passed to pillar to post but to have the worrying waiting time in-between would have got a saint down.
I hope the investigation on the irregular heart beat is taken seriously and an appointment does come through quickly for you.
Don’t worry about saying about your mum, we all feel like that at times. It is so difficult to find a balance with family. Especially when so called professionals who are supposed be helping you are being so wildly contradictive with their findings. Yes your mum wants to do things and must feel very frustrated for you both. The days are long when you are confined indoors. Is there a way that your mum or dad could have a regular day/afternoon round at yours? Do you both like baking or crafts that you could share? I hope things will be easier when the weather improves and then maybe you could get into the garden a little more.

Lots of gentle hugs, and I do hope you manage to get out tomorrow.
Lv, I x

ruby2

Tilly
In my time here I found you supportive beyond all expectations.
Its hard to have to battle against those we trust ie health professionals, we expect them to give us all the answers.
Times have changed I suspect..

My rheumy told me my series xrays showed 'improvement' (i was shocked), it was obvious she was looking at the xrays in reverse order latest first ..followed by the newest, the dates where even on the pictures.
I was dumbfounded and let it be!...(I shouldn't have) and later appts with different professionals my opinions were supported (there was no improvement how could there be?) from that day.

We feel we are questioning their integrity and experience but sometimes I think they rely on questions to prompt them to 'look again'..

Re mums
I often hear myself spurt a sentence to my daughter (then think I sound like my mother) But when I evaluate what I was trying to say , I think thats probably what my mum was trying to say.(it just doesn't come over right)

However.
(not trying to defend her) but
Did she mean to say ...if I had known it would take so long ... I would have done this, done that.. done the other ..all in the hope of trying to help you.

only you know the rest of the conversation, but I wonder if she really had your best interests at heart and like mothers often do ..it just came out wrong?
Tilly I only say this as a mother she probably is trying to help in her own way.

Tilly I do hope you llift soon we are all here to help you through it.

How good is it that you can put it all down here so clearly for us all to interpret (in our own way) and help you sort from many different perspectives.

Much love and hugs too.

barking1

Hi Tilly
how are you today? ,really hope you are feeling better (((()))) xx Jane

tillytop

Thank you so much again for all your wise - and kind words.

I really do know that my Mum and Dad care. I also know that communication is not always easy and people say things they don't mean and I am certainly not blameless in that respect. My Mum and I have always had a regular (or as regular as poss) Thursday morning "meet up" and that has continued wherever possible. It's just been more difficult than normal since we had words.

I know I do need to go for the heart tests when the appt comes through -meantime just waiting to hear back from the rheumatology nurse as to whether this latest suggestion of possible heart involvement will delay my already very overdue Rituximab infusion further. Hopefully not cos once I have that I can start cutting back on the pred which I know from past experience does tend to make me depressed.

Weather is not brill here today but I think the plan is still to go out somewhere later on and that will be lovely.

Thanks all for your support - I will do my best to stop wallowing now and get on with it.

Hope you are able to enjoy your weekends - and thanks again.

Tillyxxx

liesa

Hi Tilly....
where to start... firstly (((big hugs)))
i have been in smaller similar positions with diagnosis then you... yes its RA no its not its this its that and its the other.... tests for this tests for that....

im still here and thankful for that.. i love my hubby Steve and family more then life itself and i truely wonder how they have put up with me over 25 years with pain/stiffness/depression/surgery, MRI scans showed nothing but arthroscopy showed bone on bone in my left knee... yet after new knee fitted im still suffering from same or worse pain in same leg....
i decided along with consultants etc the only way forward for me is a gastric bypass so less weight will help my joints etc...
now the hospital docs that know about my descion =have started going on and on at me to have GB, i have such a fear of anaestetics im afriad i will die... but still they go on.. i walked out on my rhuematologists and feel this is what upset my renewal claim for dla... i put that rhuemy down as consultant....
anyway....
i lost my mum 16 years ago and mother in law (whom i adored) very very suddenly and just so glad it didnt happen that time we had had words and not spoke for a few weeks... we made up thank God

i guess my words here arent so much of comfort but more to let u know we know and understand how you are feeling and wish we could help.. we cant but we are here to listen to you and offer sympathy and hugs albeit cyber ones

hpe the Drs do get to the bottom or as near damit as they can... i would think of using PALS someone has to answer to someone....

take care and hugs and love for you xxx

dachshund

Hi Tillytop.
some times people say things they dont mean and after wish they had not said them.
i hope you enjoy your journey out.
((((((((Tillytop)))))))))
we care about you please come on here and share your worries
with us.
take care.
joan xx

barbara12

Hi Tilly
I am so sorry I have only just seen this, you have given so much support to others on here and you really deserve our support, I do think the worsted things is being ill and now knowing what on earth is going on, I really do hope that sometime very soon they will get to the bottom of this and give you some answers.
Has for your mum and dad of course they care, we all say things we shouldn't ...I really wish I could help more...but you know where I and the others are..
Sending you loads of very gentle hugs...wish I could give them for real...((((())))
You take care xxx

jillyb1

Have a good day , Tilly , and by the way there's nothing wrong with a good wallow ; sometimes it's necessary ! Jillyb

suzygirl

Tilly, I hope you manage to get out today, it is often a good medicine. Please do go when you get the heart appt. I was dismissed when I first mentioned my rapid heartbeat and palpitations, I had a monitor but didnt expereince it when I had it, so as I was young they dismissed me.

A year later I collapsed and was given a heart scan which showed heart damage and problems due to the problems I had mentioned. I am only 40, but my heart is that of a 90 year old. Subsequent scan has shown more damage, leaking valve. So please do go, as it is so important.

You are not wallowing, I have never come across anyone, less likely to do just that!! You are expereincing a truly difficult time. RA on its own is enough, but whenit affects your whole body, heart and lungs etc it becomes a very different story. When the supposed docs aren't up to scratch either, you are battling on all fronts and its exhausting.

Your mom must find it hard to watch you suffer and feels helpless, she also needs her own space and she put it badly. As a mom myself I often say the wrong thing, but I know that your mom loves you. She may feel out of her depth.

Its a shame you aren't local, I would meet up with you!!! I have a couple of local shops I pop into that give me a lift. Just charity shops, but Ioften find something to give me a smile. My local small garden centre does the same, it has a selection of funny cards, that make me giggle, somea bit rude!!!

Keep talking Tilly, we are here to help you.

Sending you hugs, and positive vibes for a good day x

diamond

Dear Tilly,You are doing the right thing by sharing how bad you feelat this moment in time.Talking helps us when we feel particulary low,you certainly are having a tough time.I hope you will feel better very soon.Kind Regards.xxx

skezier

Hi Tilly,

Nothing to add to the others and just leaving a (((((((((( )))))))))) and a nudge fro the deer. Hang in there my friend Cris xxx

tillytop

Thank you again everyone so much for your continued support and kind words. I have felt so trapped over the past months and I just didn't feel able to share on here how I was really feeling. But I am so very glad I did and I am overwhelmed by your kindness, wise words and support.

We did manage to go out for the day today and have just got back having had a lovely day. Just being out and about, in the company of my lovely G, has helped me regain some of my perspective and, for now, I feel much brighter.

Thanks again for being there for me.

Tillyxxx

stickywicket

I'm very pleased you've had a good day out, Tilly. Now plan the next one :P

It sounds as if today has been better and that's good but don't feel you have to pretend it'll stay that way. We're here for both the good days and the bad ones. ((()))

bounce

Tilly,

I am so glad that you have had a great day out, and you are in a happier frame of mind over whats been going on in your life.

it took great courage to put down your innermost feelings, and Im glad you did, as you have found that we are all one giant family, ( thats what this forum feels to me),

we are all here for each other, when one falters for any reason, we are all here, to lend any support that is needed, and to me it feels great, in giving and receiving, if any of us has a problem the family gather round you in one big swoop, and that really makes a lot of difference to how you feel.

I must admit I hit rock bottom when we lost our beloved dog Ellie, and everybody was so kind and said the right words to bring me back from the dark hole I was about to jump into, I had to battle a nasty bout of depression, and it was the great people who helped me through it, and to bring me back from all the dark thoughts and feelings I had.

You are never alone on this forum, and if I can help in any way I will. although sometimes the words come out wrong, my heart is in the right place, if you need to vent then vent, let it all out, as its much better out then in, and also you get a different perspective of things then what you can think of when your back is against the wall, for want of better wording,

sending you a big hug, and kind thoughts your way

all the best

Julie. XXXX

emsjane

Tilly, I'm so pleased u had a good day. Life can seem so hard sometimes, but u never know what's around the next corner! Hang in there and I'll keep my fingers crossed u get sorted health wise and try and have a few more nice days out with ur hubby. The good weather is on its way and we could all do with some of that

tillytop

Thank you so much for everything peeps - your support really has helped me and I am feeling much brighter again today. Although nothing has actually changed, I don't feel so desperate about it all.

Thanks again all.

Love Tillyxxx