..............so sorry to ask as I know we all have the same difficulties.

I just can't get my head around how fast my health is deteriorating since being diagnosed with RA in June 2012
Until then (and I'm not young) I was really fit, taking holidays walking and climbing in the Dolomites and the Julian Alps etc.
Now it's all ended as I'm always tired, weak and in some sort of pain, Plus my husband had a stroke in July 2012 (one month after my diagnoses)
and last year was further diagnosed with dementia, and now I am his full time carer.

I now have a wonderful consultant, (but I had to wait twelve months to find her) and the initial pain suffered for over twelve months has resided. My joints remain tender but not really swollen, my ribs hurt a lot,
my feet are the best they've ever been and I can wear shoes again, but everytime I go to see another doctor I come away with another condition.

After the diagnoses of my Ra three months later I was told I had Interstitial ling disease secondary to connective tissue disease. There are two patterns shown only by high resolution scans.
Both are progressive, one very much so which is the one he eludes (UIP) to but cannot confirm yet until it's progressed more.

I've recently been confirmed as having Latent TB for which I am now on treatment as the immunosuppressives can trigger it into active TB.
Since October 2013 I have had a very painful neck, initially scanned and confirmed three prolapsed discs into my spinal cord - for this I'm still having treatment. A week ago the consultant suggested (just in case) that I increased my steroids, it has made a big improvement. As you all know steroids only work on RA not OA, so I have RA in my neck.

Early January my back went into spasm and I couldn't move - I have a prolapsed vertebral disc which was helped with good (private) physio and a boat load of drugs from the doctor.

I'm eating very little because my appetite as you can imagine is poor and of course it has meant that I am losing weight. I don't like what I see - a women who is becoming
thin and emaciated.

There - I've told you my story, I'm sorry to do so - you all have your difficulties, some probably much worse than mine.
I'm just so lonely with all this stuff. I was at OT last week and the lovely woman I see asked me if I was depressed - I'm not depressed but I am melancholy - and she agreed.

If you have read all this, thank you so much but I understand if you 'switched off' after half way.

Gogs

Hi Gogs
You are really being hit from every angle. Don't feel guilty about having a moan on here. The beauty of this site is we can say what we really feel and know that people will truly understand. Keep strong. Lots of hugs.
Sue

Dear Gogs,

Nobody with any humanity left in them could possibly "switch off" halfway through reading your post!!!!

You have a friend in me as regards the R.A and the dear old Spine and neck problems too, believe me, we share

those two in common!

As for the other problems, you have my respect and admiration that you are still functioning well enough to share

this with us on the site.

You must really be, deep down, a very strong individual to have coped this far with it all.

I hope that you get any and all help available to you and your husband.

Post on here anytime you feel low and 'phone N.R.A.S. because they may have advice and will certainly give support

I feel sure.

I feel desperately sorry that so much has happened so quickly for you to cope with.

But the reason for this site is to be able to share the bad times as well as good times.

So post away whenever you need to!

With very much love and best wishes to you,

Fiona

Hi Gogs
Am sending a big gentle hug too. I can only repeat what everybody else has said and feel desperately sorry that you have had so much thrown at you. I'm sure the uncertainty of it all does nothing to help your situation and it seems a bit trite

to say hang on in there BUT hang on in there and please don't feel guilty telling us how you feel We are hear to listen and definitely not to switch off!!!

sending love
Julie

Hi Gogs

I don't know what to say that hasn't already been said. You have an awful lot on your shoulders without your ill health.

If I were closer I'd be round to offer more practical support, all I can do is wish you well (and tell you off for apologising for feeling the way you do) and hope things become more manageable for you.

Lots of love

Angie

hi Gogs,

sorry to hear how badly things are for you, you've enough going on with yourself as well as being a full time Carer.

do you have a good relationship with your GP, because i think a good chat with someone you can trust is needed .. mine is like a friend to me and i know i can cry in his room and he will not let me leave until i feel better about things or a plan of action is put in place etc.

i think you need to go to tell him'her you are not eating properly, because at the end of the day your Hubby needs you as well as you needing to feel as good as can be.

also NRAS might have some advice for you,

i know it's not much i can offer other that we're all here to listen, and i know you say you're not feeling depressed but if you're not eating properly then you might well be without wanting to give into it.

come back and keep posting so we can listen,

take care

Suzanne x

Thank you everyone,

It really is so valuable to be given genuine support from those who know the situation.

I took my neighbour out today for lunch as a thank for looking after my husband and allowing me to take a weeks holiday.
I'm so fortunate to have her but I think perhaps she feels fortunate to have us as neighbours - she lost her husband 18 months
ago and I know she finds it really hard at times.

The restaurant we went to is one we have used over many years - meaning I know a lot of the staff.
So like we all do - 'put my face on' and no-one knew just how I was really feeling they just thought I was looking great

Today I was at the physio again and I told her about my fall from a tall pair of stepladders (she's wonderful - well worth the money), she looked at the
hip bruise, tested all my nerves etc. and said my stumbling was due to illness and weakness, and that I was very wasted - which I know. I sometimes wonder
if I'm punishing my own body for letting me down

Thanks again for being there.

Gogs xxx

Hello lovely

I wonder sometimes if all the stuff we go through with ra etc is some test, like the fight or flight responses our bodies go into at the times of need/stress/looking after others.

So sorry to read about your husband, is there any day centres/his friends/places your husband can go for some time for YOU?
Being a carer is an intense hard time at the best of tines without ra etc. my nan had dementia before I had ra & before I was a mum - so demanding & intense. She was my nan but at the same time behaved like a naughty devil!

You need to look at a support network of friends/family/outside agencies to help you out short term and in the long term, carers need caring for has the hospital where your hubby was diagnosed given info out to you regarding offers of help?

I would like to say that sharing things is a way of dealing/coming to terms/taking a huge baggage away from yourself.
I'm sorry I can't wrap my arms around you and give you a squeeze, you are not alone Goggs. Have you had a look online regarding services on NHS in your area/charity help for you and your hubby?

Thank you Goggs for sharing your inner thoughts here, so much love & support for you.
Jane
Xxxxx

Thanks again everyone.

My neck pain is finally reducing after four months, I can already feel the change in me. People are saying
my face looks much better there is no more pain etched on it

I do have a long way to go but today I feel a little better - I'm sure a lot of that feeling has come from the wonderful support I
have received from so many of you.


I love what your dad used to say Rosie, today I saw one of these wooden hanging signs that said - Due to cut backs there will be no light at the end of the tunnel
for the foreseeable future'

Unfortunately I am still losing weight and have lost another pound in the last week. I have no bottom now and believe me it is very painful to sit down

Thank you everyone, I look in every day at the present just to saviour your kind words - they really help.

Gogs xxx

I read something very funny yesterday that I want to share with you - hope it makes you smile!

'Due to government cutbacks there will be no light at the end of the tunnel!

Thanks again to all of you

Gogs xx