|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
|
Hi i was wondeing what others tell there famlie .? Well my famlie are all over the place and don,t see me that offton . My perants may be see me every other month .As ita a good drive to theres So perants are in the 80s deaf so as i look fine i won,t tell them whats wrong they know i have R.A but not the rest .For me thats how i am going too leave things . They don,t know anything about my Scleroderma the skin the scans .This way i don,t go half way across the country to find my deaf Mother has spoke too my deaf Aunt with all things well mixed up .Ha ha .  As i am moblie and look fine i just leave it as that . christine The chocolate eating housewife ...The washer woman .....naughty lady
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
|
Hi Christine, I have different strategies for different people: My hubby - i tend to leave information inadvertently lying around for him to pick up / look at at his leisure. We tend not to discuss RA regularly, although he is very understanding and helpful he does find the unpredictability of the condition pretty difficult to understand & I try not to burden him too much with too many of the day to day niggles of RA, as I think it scares him a bit! As he's generally on a mission to keep me grounded & make sure i don't do too much all in one go, I'm pretty sure that every now and then i completely exasperate him.......  My girls - know about RA and are interested in learning more from the internet and talking with me. I have always worked with people with disabilities so they are very accepting and aware of lots of conditions and situations that affect different people in different ways. I do worry about passing it onto them (....this worry keeps me awake at night sometimes...) I always try to be positive and proactive - talking about ways I can overcome problems, coping mechanisms etc. My twin sister, Jane, knows EVERYthing - we both have a good moan when things get too much - she helps me, i help her.... i dont know WHAT I'd do without her! She's a trained nurse - when i was first ill i borrowed ALL her nursing textbooks and diagnosed myself, taking the book with me to my lovely GP who is usually the best but still managed to say "lets not think about worse case scenario's." A year later i was officially diagnosed and cried with sadness then relief at just knowing what it was and that finally i could get some treatment / medication that might help me cope better. My elderly uncle who we look after, knows a little about RA but not a lot - just enough to understand why im so clumsy putting his eyedrops in! My work colleagues know a little about the condition and are supportive - making sure i can work downstairs early am, helping with some tasks that i find difficult but also realising that i can be fiercely independent and just letting me get on with things sometimes... My direct line managers and senior managers now know a LOT more about the condition as I have shared NRAS information for employees and employers and also recently raised strong concerns about necessity to improve workplace experiences for employees with disabilities. & Things have got MUCH better! I am now also a great believer in visual communication, having inadvertently been quite proactive in sharing "visual" information during a recent 2 day work conference - everyone now realises my boundless energy is in no small part due to the power of power napping! 
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
|
Dear Christine, I have had R.A for approx. 15 years. When I first became ill, my children were about 18, 17, and 14, however the youngest child was living in America with his Father at that time. As far as the kids went - I told them that I had R.A - but hid as much as I could from them. This was quite easy as my 17 year old daughter had allready left home and my eldest son was in his "sleeping all day" phase and consequently we used to pass each other like "ships in the night" as I got up in the day-time! My dear partner Steve and I had known each other for 11 months when I became ill. I told him everything right from the beginning, and for a man who had a phobia about Hospitals - boy! he doesn't suffer from that anymore! My Mum has known since I was diagnosed with R.A. Mum is 80 now and I know that I cannot help her in the many ways that I would have done prior to the R.A. (I am also an only child!) I can tell the kids much more openly now how I feel - but I think that they have a pretty good idea of how I have been affected. The two eldest have had blood tests to see if they would develop it - but they have tested negative up to now. Best wishes, Fiona 
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
|
Dear Fiona,
May I ask what the blood test is? I have never heard of this before.
My experiences are slightly different as I have grown up with RA as have my children.
I have incredible support from all my family and as you know, my hubby and children..what a blessing they are.
And also friends although I only talk about it with two or three in detail.
Much love,
Amanda
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
|
Hello Well telling my famlie when i look fine and at moment joints are ok and i am moblie and swim drive do the housework cook iron garden go to gym work for red cross and my friend My sister in law is ok as she is a G.P so when i housesit or look after children or Dogs .She is fine too work with .No promlems . But its worse .The rest think i have just R.A . But i have a lot more scleroderma overlap causes raynaunds skin on my face is tight and calonises on my finger tips . I now have P.A and my skin is getting covered in psoriasis .(athritis causeing the skin to go mad ) i have roseasa the red sort and ance roseasa and dermitis on my face and neck . plus a numb leg which might be a stroke i have had ?Or M/S i have the head scan on thursday .next then what ever afterwards mixed tussue or contive tussue is what i should say i have .But at first it was R.A and all my joints where swelled and i used a wheelchair when we went out .Only because i /we are liveley so if i could not walk or need a rest we took the chair .But wonderfull MTX day gone by .The rest of the dx came afterwards i kept quite about that .I don,t think i have normal run of the mill R.a So i am getting worse .But i am not telling any close famlie a part from our son .If they understand then its fine .My mother or my Father repeat al sorts over the phone which they have not heard right . they are deaf i have famlie all over the british ilses . So the best thing is not too say much .Even my sister and brothers don,t really know . So they don,t know the half of it .Ha ha don,t know how long i will get away with it . i have no pain and can walk to town .Do the shopping so must be normal ha ha i think if i get worse or inmoblie and can,t hide it .Then i will have to say what i have or somthing that sums it up in one go .As unless they understand whats the point really of saying Somtimes i hear what my mother has said .She has it all wrong and it is so funny .When my eldley Aunts and uncles ( all still here in theres late 80s and 90s ) Are repeating on the phone .yap yap yap  love Christine The chocolate eating housewife ...The washer woman .....naughty lady
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
|
Hi Christine, You sound like someone who just gets on and copes well with whatever things life throws at you! Glad u got us tho' so u can tell all about your different health issues. I really hope your scan brings positive news / treatments for you and that sometimes you find time to relax and treat yourself xx My uncle is VERY deaf but often pretends he has heard things when he hasnt - leading to him getting things muddled up. My sister and i are always having to check out the latest news / events in the family in case things have been misheard / misinterpreted - the worst was when he told me a distant relative had died - you can imagine my shock when i bumped into this relation a few days later in the supermarket!!  ....How often do u go swimming? Its great exercise - i REALLY need to go more often but its a bit COLD!!  Love Liz x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 56
|
Mandy told me that She had RA on our third date. I think I either said or thought "So what? Is it catching?" I did some quick searches on the web and found out what I could about RA and its causes, effects etc.
On our next date I said that I was OK with her RA and that we would work through it together. Two months late I proposed, Mandy accepted. Next year (sometime) we plan to live together and maybe get married in a year or two's time.
I have learned that while there is nothing I can actually do to lessen the pain/discomfort that Mandy is feeling other than divert her pain into me for a short time (I am a Spiritualist with very basic healing power) the important thing is to be there for her. Just standing alongside he giving her support whilst encouraging her to keep her independence and humour.
I look at the love in her eyes and nothing else has any importance. RA is a bloody nuisance but we have adapted to its whims. We building our lives around it always remembering that it is there but pushing it into the background where ever possible.
What I am saying is that you have to be open and up front with your husband, partner etc and tell him/her straight to his/her face that you have RA but you are still be person that you were before being diagnosed. Just that you are more fragile and vulnerable than you were before and yes please a hand to hold or a shoulder to cry on in most welcome.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
I'm afraid there is a lot more to it than that John, don't forget most of us have been with our husbands/wives/partners pre RA.
So not only have we to adapt to living with RA, there are the memories of all the things we were able to do before as a family but cannot manage now.
I agree we have to be honest with each other but we also have to cope with knowing that our husbands/wives /partners have had to adapt to our illness just as much as we have.
That is what's good about the forum, we can let off steam without upsetting our other halfs!
Doreen xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 56
|
Hi Dorat
Of course there is a lot more to it than that. In many ways those who have been with their partners pre RA are in a better position to cope. Everyone, Mandy included, is grieved by the fact that she cannot do now what she could do pre RA. She becomes fustrated and upset. She feels that she is letting me down by not being able to do the things that she feels she ought to do. So far we have put things into perspective and have adopted an approach to RA that seem (at this stage) to be working. We did this by having long and frank conversations into what is important now and what was important pre RA.
Yes, perhaps by coming into a relationship with Mandy armed with only a limited knowledge of RA is a handicap. But we don't see it as such. We see it as a start of a journey. If anything dorat Mandy having RA has brought us closer together. It has certainly made me appreciate her more and the things she does in the house and when we are out. I can now tell by her body language and voice when she starts to suffer. I then compensate by just being there. A gentle carress or kiss or even running my fingers through her hair. Just enouth to let her know that I am there and that I care.
Never forget that your husband/partner whatever feels useless and frightened when he sees his love one suffer. Some males I have spoken too feel they have to be STRONG for their partner. NO! They have to be caring, gentle and helpful.
There has been a lot of emphasis on the old site (quite rightly as most contributors are those struck with this vile disease) on those who are stricken by RA with no reference much to their other halfs who suffer too.
We too have to adapt to the illness, we too cry, we too remember the old days (though not in my case obviously).
Oh dorat don't you realise that we are already upset. Don't you realise that we too suffer from this vile and evil illness. You suffer in pain and a feeling of uselessness. We suffer emotionally, we suffer silently in many cases because we have to be there (willingly) for you because we love you.
Please realise that your partner loves you and stays with you because he loves you. He loves the woman he married. Yu are the same woman he fell in love with and married. His emotions and feelings are the same but he has this deep feeling of being useless to do anything to ease your pain and suffering.
Now I am getting emotional so I had better go.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Yes John I do realise that my husband still loves me, we have been married for 30 years!
I have asked him about this "feeling helpless" and he says he doesn't because he knows what to do to help me when I am in pain.
Also, I don't think I am the only one who likes my husband to be strong. I would hate it if he cried whenever I was in pain, it would make me feel guilty for upsetting him.
This is something you can't generalise on, it's like everything else with RA, we all react differently, and have our own ways of coping.
Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
I have to say I agree with Doreen on this one. I couldn't cope with my illness if I also had to cope with a husband who got very emotional. Each of us and our other halves copes in a different way. My Steve is wonderful and I am very happy with the way we have adapted over the years. Steve doesn't feel useless - he does everything he can to help me and is the best support anyone could have.
You say that we don't appreciate how our husbands feel - of course we do - but the main reason for the existance of this site is so that those who have RA can support each other.
Jean
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 56
|
Jean
No. This section section is aimed at the husbands/wifes/partners of sufferers and how WE can help each other help YOU.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
THIS section - yes - but you were referring to the whole of the old form when you said
"There has been a lot of emphasis on the old site (quite rightly as most contributors are those struck with this vile disease) on those who are stricken by RA with no reference much to their other halfs who suffer too."
.
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 56
|
This section did not exist on the old forum hence my post. It does exist on this new format though. So there is now a outlet for people like myself.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Yes John it is an outlet for people like yourself but this particular thread was started by an RA sufferer.
The only people who know what it's like to have a disease like this are the people who have it.You can not generalise, each of us has to work out with our own husbands/wives/partners how we cope with it.
It's the same as with everything else, what works for one couple may not work for another.
Doreen xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 312 Location: Surrey
|
Well, as a bloke with this crappy disease, I want my wife to be strong! I certainly couldn't cope if she started crying her eyes out when I'm in pain. I would much rather her leave me alone and get on with other things! Stewart. A friend is someone who knows all about you but loves you anyway!
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 56
|
Then you are all harder than me !
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
|
Hi
I would not be able to cope with RA if I had to worry about Richard crying every time I was in pain
when I was also told I had MS aswell (less than a year ago)I needed him to be strong for me until I could get my own head around it
I do not think our partners are harder
if you can take this I will be straight with you
I have noticed you writing posts before I am so pleased you have found Mandy and she you
you give me the impression that you are the only partner who cares about this illness and the pain Mandy goes through you are not
most of us on here has lived with this illness for quite a few years so has our partners and families
we all need to live life to the full take one day at a time and not to worry about upsetting our partners (this causes us more stress and pain)
I am not being nasty to you and I am sorry if I have misread your posts but you are not the only person to care
Mary L
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 312 Location: Surrey
|
John-H wrote:Then you are all harder than me ! John, it's got nothing to do with being harder. But it has got something to do with coping with a disease/ diseases that are lifelong and can be seriously debilitating both mentally and physically! I know you are fairly new to this condition but others have lived with it and it's consequences for years. In my case nearly 23 years! You have to deal with Mandy's condition in the way you see fit but others are giving their own opinions, maybe which have altered over a long period of time! Best of luck to you and Mandy anyway. Stewart. A friend is someone who knows all about you but loves you anyway!
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 872
|
Quote from Dorat #15 "The only people who know what it's like to have a disease like this are the people who have it.You can not generalise, each of us has to work out with our own husbands/wives/partners how we cope with it.
It's the same as with everything else, what works for one couple may not work for another."Paul and I have had similar conversations, very like Doreen's quoted above: Over time, we have worked out together what works for us and I'm sure what works for us is different to what works for others, we are all of us so very unique and things / life situations etc do change over time - we are all SO much more than just people with RA. I know when I need a rest, feel a bit down or in pain, want to scream etc and so does Paul, also I know how he feels even when no words exchanged - for us actions often speak much louder than words when supporting each other but then we have been together for 21 years. Most importantly we're both absolutely sure we're always there for each other, whatever life throws at us..... one thing I am very certain of is that I don't ever want Paul to really and truly experience what RA is actually like, but he does empathise in his own way. John, it sounds like you and Mandy have worked out what really works for you and that's great, I wish you both all the very best because that is the secret i think - working out what works best individually, as a couple, as a family unit, in friendships, life etc Best wishes and happy smiles to everyone ~ Liz xxx
|
|
|
|
|
|
|
