just saying hi

[nuttymoo]

Hi all, I am new to posting but feel the real need to talk to people that understand I may look ok but I really don't feel ok.

[emiliekofi]

Hi Nuttymoo and welcome.

This is a great site to come to when those of us who are fairly new to RD to gain answers from those who are a little more knowledgable or those who have had experienced certain meds, side effects and the general life change RD can bring.

We all know exactly how your are feeling right now.

Hope you find it as helpful as I do

Caroline

[nuttymoo in reply to emiliekofi]

Thanks Caroline, I am glad I decided to click the join button, its already helping just knowing I am not alone

Donna

[Hidden]

At least you look okay - that's something! But yes, everyone here will relate to the invisible nature of the disease which can make others doubt us and even makes us doubt ourselves from time to time.

I suppose most diseases are invisible but RD can be especially difficult to explain to other people. The 'arthritis' part of the name makes folk think we've got 'a bit of wear and tear' and some of the nasties like horrible fatigue are very difficult to convey even if you've got the energy to try!

How are you doing and where are you at with your treatment? If it's very early days for you I'd say live in hope for sure. I've had PsA (similar to RA in some ways) for 3 years and I'm basically pretty well now. Although actually up in the middle of the night with sudden acute knee pain - which I am most definitely hoping is just a blip - I have come a long way and hope your disease is soon 'tamed' too.

[nuttymoo in reply to Hidden]

Hello postle2 thanks for that, its been 6 long and painful months but my GP has been their every step of the way, I have had a lot of time off work and that's depressing but I am not alone I am so glad I found this site.

[Someonesmother]

hey nuttymoo, welcome. I would guess that most of us look Ok but do not feel like that inside. Invisible illnesses are like that

[nuttymoo in reply to Someonesmother]

Hi someonesmother, Thank you for your reply. I do look ok and that's the most frustrating part for me I think, I look at myself and think why cant I just get on with it, I smile and do my best to be positive but I have to say I thought I was going crazy...... turns out I am not I have RA.

[Someonesmother in reply to nuttymoo]

Hahah it is a common story. I keep getting told 'but you look OK'. really? if only I could wear it on the outside you might believe me.

Ho hum. Funny how we doubt ourselves even though we are in pain and only just struggling through the day. Silly isn't it. You will find some very helpful and supportive people here.

[nuttymoo in reply to Someonesmother]

again, thank you to all of the people that have welcomed me to this site, I am already feeling the warmth and support from people that know what they are on about,

Thank you its great

[Hidden]

HI Nuttymoo, welcome!

Yes I think all of us have been through those times where everyone says "oh you look so good" when its taken you half a day to get to that luncheon or dinner and the whole time you were aching and feeling fatigued like you dont want to go.

My nephew recently commented on how "better" I looked and I laughingly said to him "Its all a big coverup... I took a lot of time and effort dressing up with this jewellery and makeup just so people wont know how crappy I feel". He laughed too.

But honestly, this group is very understanding and a great support to each other so whenever you need some advice or just a friendly pat on the shoulder for getting through the day, then this is the place.

[nuttymoo in reply to Hidden]

Hi Netbuddy thanks for your reply,

I totally get that whole cover up, the bigger my smile the worse I feel, that's usually how it goes. I am really glad I have all this advice and information from real people at my fingertips... I am sooo not alone even if sometimes it feels like it, thanks

[Rosieapple]

Know how you feel Nuttymoo, it is such a godsend and a good job we have this forum as non sufferers just don't get it.

What Is so frustrating too is people advising you not to take "those powerful drugs" just take yoghurt before each meal!!!!! Or another lady informed me her daughter said I need to change my diet, she is into Paleo diets and goodness know what other fad. If only it were that easy! You feel like throttling them but you have to stay smiling, sooo hard.

I hope you have a good Rheumy who will help you get the right medications to control your disease soon.

[nuttymoo]

Thanks Rosieapple,, I have the same advice from some friends and even their friends, people I have never even seen let alone met. I have to smile and nod but inside I really want to say, when did you get your degree in RA!!! I have a fabulous GP she is a star and I have a nurse that is too, I even really like the podiatrist but not so keen on the Rheumy, but getting there.

[Hidden]

hey nuttymoo, welcome

[nuttymoo in reply to Hidden]

Mike55 cute puppy, and thanks

[alibromo]

Hi Nuttymoo. Welcome & i love the name, sounds like me :-). Like everyone else has said its a wounderful site & also the NRAS site is very helpful i have just become a member of nras as they have helped me in the past. Xx Alison

[nuttymoo in reply to alibromo]

Oh thank you alibromo, I have never been so keen to check my laptop before its really nice just to feel a part of something useful x Donna

[Hidden]

Because we live in a society we are judged according to looks / appearance / how we appear to others. We are judged to be considered "ok / fine" so long as we "look" okay. In this "image-driven" society we live in, as if how you look is far more important than how we are feeling.

At the same time, if someone has a condition which makes her / him look very ill, unfortunately, I had seen people's discriminatory behaviour towards someone who obviously looked "ill". It's none of his / her fault (recovering from cancer / surgery / surgeries / illness leading to some obvious disfigurement or appearing ill, etc for example), people get judged quite harshly. People can be very cruel and utterly unsympathetic. When my in law had cancer and had a surgery, people stared at her at M & S coffee shop. I get to hear about people with wheelchair getting attacked due to their disability. There are different degrees of issues depending on how badly you are affected. Generally, I find people wouldn't understand these sort of problems until they find themselves in other people's shoes. People might wonder where your lovely haircut was done but wouldn't be "generally" interested in how badly one's RA is affecting you. lol

[nuttymoo in reply to Hidden]

Hello Omega that's very true, I was at the hospital for my appointment this morning and even a couple of people in the waiting gave me the "glare" as I sat in the higher high back chair. lol that's why the chairs are there for people like me that need them

[Metal-legs]

Hi there and welcome, it's a great place to get lots of support here and talk to people who really understand. It is annoying when people say you look ok, the trouble is you can't see pain and this why it's such a misunderstood disease. It sounds like you have a very understanding GP which is good. If you can get on some good treatment you can start getting some life back.I wish you all the very best

[nuttymoo in reply to Metal-legs]

Awe thank you Metal-legs, I have only been on here for a few hours and it already feels like I belong, loving all the welcome messages and my GP is awesome never had one quite like her before. How do you put a smiley face on your message?

[Onslow315]

Hi Nuttymoo,

When I received my diagnosis about a year ago, it was life changing. Could not get it off my mind. It was constant worry. I found new doctor who helped me a lot. Also, I started to speak positive thoughts to myself. I would repeat , "I will be OK. I'm taking good care of my body." Sounds crazy, but it worked for me. I was able to move on. So, come up with some short, positive chant and when you sense your thoughts heading towards "why can't I just get on with it", think of the phrase and repeat it to yourself.

Wishing you all the best.

PS - your name is so cute!!!

[nuttymoo in reply to Onslow315]

Onslow315 thanks because that makes sense, I have been very depressed about my condition I am beginning to get to grips with it and I am writing myself a "try this today" list, so yesterday it was join this forum and its turning out to be well positive indeed,

wishing you all the best too

[bigcatlover]

I've had RA 10 years now, but only just joined this group. It's hard when you feel your friends don't understand. They try to include you, but going out clubbing is now my idea of hell. I used to love to dance, but can't anymore. I totally understand what you mean by looking ok, but not being ok. I live and work in London and use a walking stick to be able to get a seat on public transport. I'm lucky that I've kept my figure and I take pride in my appearance, but that just makes others perception that anything is wrong with you even more so. Does anyone live in the London area? It would be good to have a support group that I could meet up with.

[nuttymoo in reply to bigcatlover]

Hi bigcatlover

I used to like dancing but it was more disco than club but I understand that feeling. I have a big grey boot on my left foot at the moment and a small child in the bank thought it was "like Iron mans" if only

[bigcatlover in reply to nuttymoo]

I've got a lovely heel weighted shoe on one foot at the moment after surgery in Dec. Def doesn't look anything like Iron Man. I did have one of those once a few years back. What area do you live in? I'm in London, which is a pretty lonely place as it is without having a disability to add to the mix

[nuttymoo in reply to bigcatlover]

Morning Bigcatlover

I am not far from Petersfield, only a little train ride into London, on a dairy farm

[bigcatlover in reply to nuttymoo]

Morning Nuttymoo. Love the name!

Dairy farm. Cheese is like my favourite thing ever I may just have to come for a visit.

Thanks for reaching out.

[Shy535]

Hi nuttymoo, welcome. It is a great site full of wonderful individuals who understand. I hope you have a good rheumatologist and your treatment is going well.

[nuttymoo in reply to Shy535]

Hi Shy55, this site seems to be just what the doctor ordered! I don't really have a great deal of faith in my rheumatologist but his team are excellent. Thanks

[allanah]

Hello hello! I enjoy this site, it's not all doom and gloom and the people are lovely xxx

[nuttymoo]

I am loving it so far too allanah x