Reaching out, finding others like myself, sharing my story in hopes it will help!

[orchidcass77]

I found this today, it says exactly what has changed recently within me. I know I have a purpose here, I know my story is not over yet, there are people who need me, there are people who need to hear my story. There are people who shouldn't be as alone as I often feel. I want each and every person struggling through this disease to know that if no one seems to understand, they can come and talk to me, I will be there for them <3

[allanah]

Get that completely x

[popsmith1874]

You've hit the nail on the head and it's how I feel at times, and I'm sick and tired off people saying you look alright and when you tell them what's wrong they say oh my fingers sore or my knees sore, if only this disease was that simple xxx

[orchidcass77 in reply to popsmith1874]

Every day at least one person will tell me they understand how they feel cos they have a terrible cat scratch or a twisted ankle, I recently had a pregnant lady tell me (single mum of four all natural births without pain relief) that being pregnant was like having a disease. No they definitely don't know how we feel x

[Rednoseday_01]

What a lovely thing your doing ...In my household they don't understand cause I'm not moaning about it just trying to live my life as best as I can. WORK is the same it's so annoying when I hear someone say oowww my back ooww my arm is achy today I have to say welcome to my world only triple that pain or ache you have ! 🤔🤔🤔

[orchidcass77 in reply to Rednoseday_01]

I really try not to complain too much now so I often hear "you must be feeling better" I just give what people want in hopes they will take time to ask again. I feel bad cos the only people who stuck around when I couldn't stop myself expressing the pain, was my kids. They are also the only ones who know when I say I'm ok but I'm not really x

[Eiram50]

Well said Orchidcass

There is always someone less powerful who need support in finding their voice, their path. If you feel in a position to help, more power to you .

Marie

[orchidcass77 in reply to Eiram50]

Thank you x

[Lesley_ann]

Hi orchidcass,

I needed to see that post tonight. I've not posted for a while as I had a chest infection that took 3 lots of antibiotics and steroids to clear all over Christmas and New Year. At the same time as trying to fit my appeal in to go to a tribunal. When I had assessment and M.R. I tried to explain how pulmonary fibrosis works especially as mine seems to be progressing quite quickly.Well on the back of my report the assessor put a tick in the box to say " based on her knowledge and observation she doesn't consider there is anyway they should be consider to review my case in the foreseeable future as she doesn't see that there will be any significant changes in the future " The M.R. agreed ! I have asked that the assessors (mine was a young woman 1st year O.T. student ) be more medically trained as she had no idea P.F. is an incurable progressive lung disease with a limited life expectancy in some people. I am so angry with the whole lot of them, I very nearly scrapped the lot untill this morning when I scrambled everything together and spent the day filling it in as needs posting tomorrow. Nothing like living life on the edge eh Cass but then we've been doing that for a while havent we. Take care Linda xxx

[orchidcass77 in reply to Lesley_ann]

Thank you for your reply Linda what a nightmare. It's beyond incomprehensible that people making these decisions have so little medical knowledge, I sometimes wish I'd completed a PhD instead just so I may be respected on my word about my own medical issues! Even before I learnt about interstitial lung disease I knew the lungs once damaged couldn't heal themselves x

[scotslass333 in reply to Lesley_ann]

Just to say good luck with the tribunal, definitely go for it, keep pushing - it's really awful what we have to go thru - you might remember I had to get my MP's support to finally convince them! All part of the huge national lack-of-money problem which IS very difficult, and I don't have an answer to, any more than the government does at the moment. But each of us with chronic, serious illnesses deserve a fair hearing, a fair system - so fight on Linda. x

[orchidcass77 in reply to scotslass333]

It took me two years in the appeal system to finally get my benefits, what a struggle it was and I do believe it made me much more ill, I couldn't even walk by the time I got there :/ it's awful how they make us fight every step of the way. We already feel bad enough we can't do all these things and cannot work. Even once we do win, they awarded mine for three years even tho i have an incurable progressive disease which in that time has become deadly so this year I will have to submit another claim. Admittedly I'm now under constant care so technically it shouldn't be a problem and my benefits shouldn't stop. But what should and shouldn't happen doesn't come into this equation. They just want to believe the worst in every person. It seems the general population have now been swayed by the government into believing that we (disabled and unable to work) are now the scourge of the country robbing them of their hard earned taxes. We really do seem to be castigated for a situation we have no control over. I do hope you get your appeal win. The most annoying factor is they will go thru all the stages turning you down along the way but with a disease like RA you will win at tribunal. They just try to keep numbers down by refusing and hoping you will give up the fight and that works on some people. The money they waste and the lives they risk just to be sure we are not on the con. They should come to these forums and would have all the info they need about our lives x

[cyprusmum in reply to orchidcass77]

Hear hear agree with your reply. Some of these Drs /examiners/assessors should try to walk a day in yours and many others shoes and see how they get on.

[orchidcass77 in reply to cyprusmum]

Thanks my health and social care exam was partly based on the Beveridge report and the birth of the welfare state "The Beveridge Report of 1942, (which identified five "Giant Evils" in society: squalor, ignorance, want, idleness and disease) essentially recommended a national, compulsory, flat rate insurance scheme which would combine health care, unemployment and retirement benefits." and bow the benefits system seems to hold most of those "giant evils" as their core attitudes. Shame really, Beveridge had the right idea, yes without a doubt there will always be those who abuse a system meant to help those in need....that however does not mean that those in genuine need should be held accountable for cheats....they are there in every walk of life. It's hard enough living like this without being castigated at every avenue x

[Hidden]

Wow, this is how I feel too. Isn't it wonderful to talk to people who know how we all feel?

[orchidcass77 in reply to Hidden]

Glad it helps x

[scotslass333]

That's so good, and I REALLY needed it, thanks so much. No-one understands like us who actually have the disease. I gave a leaflet on Fatigue to someone last week, a part of it said "people may not understand how you feel unless you tell them" - so underneath that I wrote" or even after you tell them!!" Just my frustration, I suppose, mainly because I've no family /relatives, so prob expect too much from the few friends I've got left!! I really need to find a proper carer/general helper, but we all know how hard that is don't we - social care crisis etc?

So thankyou thankyou Orchidcass - I totally overdid it yesterday and now feel flare-y, of course - but reading your post makes me feel a bit less alone.

PS think I will have to change my username to Grumpy Old Woman, becos I definitely am!!! For many years I've kept a diary and was looking back at one, before I had RA - what an eye opener, like reading about a totally different person....guess it's not a great idea, then, to look back. 😩 xx

[orchidcass77 in reply to scotslass333]

Scotslass omg you know I actually said exactly that yesterday. My pain levels are high too and I can't stand up much at all right now so I'm grumpy. I told my son to tell his friend sorry I seem to grumpy old woman please tell her I used to be fun before lol. Most his friends have known me forever and tbh they are my only friends that care about me, sad really. I used to be the "cool mum" all the teens loved me and would come to me about everything. I've changed so much since I got sick it's ok to look back fondly. We have no choice to accept that our present and future are definitely gonna be different from our past or the future we had planned. To put a positive spin on it, none of us know what's to come. We can still have a good future, we can find ways to achieve that which feels impossible. I'm sorry you have no family, mines severely limited too but I have lots of children so im very lucky there, except I wish I could be a more active able bodied, happier mum of course. My 19 year old son is my full time carer and I now get 30 mins a day professional care for personal needs but that was incredibly difficult to get! My son is now having a hard time and it seems the pressure is too much for him (he has lots of other pressure too, but I'm his mum and want to ease it) I'm now concerned he will have a breakdown :/ I wish this wasn't all on my kids heads but I only have my mum and she works and is getting on a bit now so I feel awful to ask her too, she does all my appointments with me as my son isn't driving yet. I really would consider getting someone as a carer, give them the carers allowance then at least if they are getting paid to help you you won't have such a worry about putting too much on your other relationships. I'm glad my post helped x

[scotslass333 in reply to orchidcass77]

Yeh - it's tough all round, and hard sometimes to think positive but I DO try! You've got it much harder than me, all these complications. I understand your worry about your son too, as Mums we do the looking after (I have a daughter but she lives in America, God help her!) - all your advice and thoughts are good, thanks again. Keep smiling! X

[orchidcass77 in reply to scotslass333]

Thank you for making me feel better about myself. God, I think it would kill me to be so far from my kids bless you that must be a worry. x

[RA22345]

it is so reassuring to see what you all have to say on this forum. I am having a bad spell just now and feel a bit low. Doctors always make me feel like a timewaster. With the pressure on the NHS I don't see much hope of getting support from there. So this us somewhere to at least feel understood and put things in perspective. Thanks.

[orchidcass77 in reply to RA22345]

You should check my YouTube videos explaining what happens to us when docs ignore us, I think you will find it both shocking and familiar

youtu.be/gbhcRHG5fn8(Not working as expected?)

[orchidcass77 in reply to RA22345]

And part two of my story is here. youtu.be/X0qjnYP5YjM(Not working as expected?)

I know thirty minutes watching is a bit long but it's a long story I'm amazed I could edit it down to that lol

[linda-5502]

Yes I agree I am fed up when you tell people you have RA they have arthritis too . Also they say how well.i look!!!! Oh if only they knew what we all on this forum have to put with so I have stopped telling them but after reading your words I AM going to tell them four and square we should not be the forgotten ones take dare every one we do have a voice xxx

.

[orchidcass77 in reply to linda-5502]

So true. I will be literally crying out in pain unable to go to the toilet and people will show me a splinter and yell me they feel my pain. Or you get those who say things like "you should be grateful you don't have cancer!" I've had cancer, I'm well aware of the horrors many cancer patients go through but for me personally, my cancer was cut out I got up everything went back to normal. This disease has literally destroyed every part of me, I don't even look like me anymore! As for what's going on with my lungs I would genuinely have more chance of survival with lung cancer than I have with rheumatoid lung x