Rotten thief

[Sailaway]

The disease, that is.

I lost my job today because of RA.

So that's my independence, mobility, ability to do the things I love to do, I can't even sail away any more. What's next...? In fact, what's left?

Fed up.

[Hidden]

Hey there, I am so sorry you lost your job I really wish there was anything I could do other than sympathise!!!

RA has taken the life I built for myself away as well. I had a job, good friends and independence but then I was diagnosed I couldn't get proper treatment, was off sick over 3 months and had to quit eventually to move back home to Switzerland in order to get proper treatment. I sometimes still struggle with the way RA has crossed my plans but I am on the way up again. I really wish you all the best and that you will eventually beat this mean, thieving disease!!!

Hugs and take care, Christine xxxxx

[Hidden]

So sorry to hear this, Sailaway, tell me are you a boater?, have you a big boat?

Iam not in a brilliant position either,, and after todays waste of time appointment with rhuem dept nurse it still all rumbles on.. I Was in tears in appointment I have works meeting on april 9th and still even todays appoint no progress have to see consultant on april 30th FOR her decision.. all started with an emergency registrar appoint mid dec and still no progress over any new drugs or treatment!!, I said to them work id going to love this!!, how can I promise to work more hours and or days with no treatment .

Employers attitude needs to be challenged? and even more the NHS with it slow and indifferent aproach to treating patients .

I would rather pay for decent health care, it says it all that Swiss miss had to go home for decent treatment.

[alibonura]

so sorry to read this, i know its hard n u prob dont feel like it but try to keep positive, sometimes i feel exactly like u n wonder "what is next" xx

[helixhelix]

I really can't imagine how awful that must be. I left my job too, but it was more my choice as I couldn't bear to hang on for years until they finally gave me the boot for ill health, so I threw in the towel. And my RA seems to be much more controllable than yours, so I also have no idea how you have managed to struggle on with an RA that is really not responding properly to the drugs. So much sympathy, as it sounds totally grim. The only glimmer of hope I can offer is that not working full time has allowed me to look after myself much better, and that's made a big difference as drugs now working well. So money is a worry, and It's still a bit odd not working for lots of reasons, but life is ok again now. You're still you, and it'll take time but I really hope you can find a new way of being that satisfies you. Polly

[Dotty7]

I'm so sorry to hear this. I too lost my job because of it. The worst time wasn't when they dismissed me, but some months earlier when I realised that actually I couldn't do my job any more, and that when they came to capability proceedings, I wouldn't be able to contest it because they were in fact right.

These are tough times, but there will be better times to come. It takes time to get your head round, but you will.

Take care,

Dotty xx

[Sailaway]

Wow, I'm overwhelmed by this response and your kindness - thanks everyone, very much.

Summer - yes I've sailed since I was 16, first dinghy racing then river sailing and for the last 26 years coastal sailing. I met my husband through sailing and we have a small old, traditional yacht which we keep on the west coast of Scotland (an hour or so from home). I miss it very much and it's probably what I'm most emotional about losing.

[Dotty7]

Have you still got the boat? Maybe not working for a while will give you back enough health to be able to get back aboard. I've not now worked for nearly a year, though I was properly despatched last autumn, and I am using the time to spend more time than ever with my horses and do things that I like doing. RA hasn't gone away (I wish!) but it's retreated a bit because of being able to rest and lead a healthy outdoor life.

Don't despair,

Dotty xx

[Sailaway in reply to Dotty7]

We do still have the boat, and I'm hoping that once the weather's a bit better we can get afloat again.

[Dotty7 in reply to Sailaway]

Go for it! RA takes away so much, it's really important to hang on to the things we love if we possibly can. And if not, to find some new things we love.

Dotty xx

[miss]

Sorry to hear your news. This diseases really is rotten. Give yourself some time and maybe you could spend more time doing what you want to. xx

[alicn]

So sorry to hear what a difficult time you're going through at the moment. It's such a cruel loss of independence and self esteem let alone the financial anxiety. All I can say is hang on in there, try to keep strong and positive, sending virtual hugs x

[Hidden]

I am so sorry to hear this Sailaway. We used to have a traditional boat too - a Blackwater Sloop. Sailing used to terrify me but I was willing to keep trying - my husband is a skilful sailor but we live inland these days so no sailing for now. There's always loss with this bloody disease but anyone who is used to living life to the full will find a way round it in time - easy to say I know.

I know how you feel.

Luce x

[natellie36]

I know what your going through sailaway,if you remember my post not long ago r.e working and ra,i work for the nhs going through a redeployment process at the moment and have done alot of research into disability discrimination in which i'm going to be writing a letter to newspapers and goverment to say yes i have ra but please don't put me on the rubbish heap.

Please take time to look after yourself and try to relax,ra is an awful disease and so is the meds.

Natalie

[lynn-bel]

Hi

Can you still go sailing if you have people who can help or can crew for you ('ark at me with the sailor jargon, and me petrified of the water!) It would be awful for you to have to give up something that you love so much.

I stopped work by retiring a few years early, my choice. I was getting way too tired to cope with the busy and stressful job I had. Financially it wasnt the best decision but you do make adjustments so that you can live a good life.

If it cheers you at all, I have felt loads better since leaving work due to the absence of stress and not having to work the long hours. It will give you time to look after yourself and look at ways of managing the disease. Have a good look around for activities to take up so that you aren't bored or feeling useless.

I took a writing course and am about to start a digital photography course - I had won some Open University vouchers so am using those.

I dont know the circumstances of your job loss but I didnt think you could be dismissed due to RA (or manyother disabilities) but I assume you've considered all that.

If its a done deal and you have to accept being unemployed, try to see the positive side, difficult I know but try to open more doors so you dont notice the closed one. There is a lotyou can do and ifyou are going to apply for benefits, get CAB to help or any other org. that helps "disabled" and don't be put off, keep fighting!

Wish you lots of good things, you arent alone, we are always here to help and listen.

Lynn xx

[Neonkitty]

So sorry Sailaway. I had to leave my job as I was convinced it was what was bringing my RA on. I found once I got to feel better I decided to do things I had always wanted to as I was too busy working in that rotten job. I have had someone to support me though so I know I am fortunate. I hope that as you start to come out of this awful spell that good and different things will happen to you. I ended up with a Bachelors and Masters Degrees in Art and although I have always been an artist (graphic) I went back to study part time and it all stemmed from there. Hopefully I am going to do something else related. It doesn't matter what you want to do ... if you want to do something purely for recreational studies or socially ... Whatever makes you feel happy. Just now I am in a period of limbo and it is not good, but I know it will change and it is hard when everything we know and take for granted goes out of synch.

I keep thinking of the Orinocho Flow song when I see your name and hope you can soon sail away again.

Love and hugs

Julie x

[Sailaway]

Once again, I'm blown away by your wonderful messages because you clearly understand but have words of hope and encouragement for me. I'm so very grateful, and very cheered up!

My attitude today is totally different to yesterday, I can see opportunity and freedom ahead. All the difficulty and restriction is still there, but there's also hope and space to create something new.

Thankyou all x