I think that being diagnosed with a chronic, progressive, life long illness should come with some sort of warning. Yes, ok you can find out about all the treatments and the help and aids available but no one - NO ONE - told me that my whole life would be turned upside down by it. That everyone else alongside me would be at some point sucked in, trapped and spun around for a bit too. Nor that it would last for so long, or that when it finally calmed down it would leave a trail of utter devastation behind it. With the added complexity that it could and would return without warning, spiralling yet again out of control.
It’s terribly unfair that my little family has been damaged by RA. Even worse is that it has reached further than that, for those that let it pull them in that is. There are a few who hold on so tight and refuse to let it take them, I have to admit I am slightly envious of them. I didn’t know that having RA would affect so many people and for that I can only apologise. I don’t want to have it, I didn’t ask for it, neither do I have any control over it, so I guess that you’re either with me or you’re not...I don't have a choice.
When it’s you that's ill, in so much pain and in the dark as to what is wrong the emphasis is all on you as you search for answers and a diagnosis. The relief that diagnosis finally brings is enormous; at last you can begin to get better and get on with your life. When I was told I had Acute Inflammatory Poly Arthritis I thought, ‘well that doesn’t sound too bad, that’s ok I can cope with that’. It was only when I saw the Nurse about starting my medication that she told me that I had RA. I was completely shocked and spent the rest of my appointment in a daze. I heard what she was saying and nodded and agreed to things but the only thing that stuck in my head was “…you have to go through a grieving process and then you can begin to put your life back together”. What was she talking about? I’d have a few pills and I’d be fine. It wasn’t until I saw my GP and discussed RA in more detail that it finally sunk in and I broke down and cried for ‘me’.
So, that’s when it hit, this whirlwind. This violent, dangerous thing that had come and gone leaving nothing and no one untouched behind it. It has changed everything, forever. I had gone from just being ill to always being ill, for the rest of my life, for the rest of my children’s lives. Although I might get good days and weeks and months, I'd never be well. Fighting it is a slow and arduous task often with unforeseen setbacks. Two steps forward, one step back.
I battled on and on through that first RA year. I welcomed the Spring, Summer, Autumn of 2007. I was not going to let it get me again I’d got my life back! I could do everything and anything I wanted and I did. But I was tiring, along came a bad Winter and I was knocked right back down again. That was the first time I really appreciated the impact my RA had on other people. I began to rely on my neighbours and friends and family to do my stuff, my jobs, look after my children. My responsibilities were dealt out to others. I was giving away all my good cards, again.
It's unreasonable that so many people have to be involved in my battle but then without them I wouldn’t get any 'better'. Hurricane RA has so far visited us year after year after year. I wonder if others can see the pattern too?
This has been another difficult Winter and I am waiting for it to blow itself out…it is coming to an end I can feel it but it’s not quite done with us yet.
Written by
emandedmum
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I really feel for you and know how you feel. It has changed my life and my family and friends but hope you are lucky like me they have all supported me,also my work. Without them I could not go on but you must. You have to adapt, look on the bright side and there is one for sure. OK I have to be james bond and use gadgets to help me and look at problems in a different way and sort it out. I went to Paris for the first time the other year. First time I had been abroad, RA is not going to stop me or my family from having a normal life. Please do give up, look forward not back at what it was.
I know I that have to approach things differently now, it's just tough that sometimes others don't see it so clearly. I've got lots to be thankful for and loads to look forward to
I guess I'm trying to explain why I'm being unintentionally self-centred, RA makes you that way whether you like it or not. I can't be spontatneous, I've got to plan in advance for everything to ensure I'm not too tired or in too much pain and I feel like I say no an awful lot! But there are ways around it all. I had no idea that there would suddenly, because of me, be so many people involved in our lives. That's what I'm trying to say, you should be warned that you'll need more people, in a different way to usual and that it'll be for a lifetime!
Its a illness that requires us to be selfish when the need arises, its ok to farm out to other people who understand the disease, but to others i think not. Its an old persons illness will be on the tip of most peoples tongues and they cant believe it when you try and explain that it isn't. I tend to have a close circle of helpers when i need a tad more care but i can sometimes sense their anger/frustration be it at me or the illness. I had a terrible 2010 what with new meds and this year has been bad so far but without the help of said friends i would have been suicidal. I will also state that i have taken a very active self management both with the docs/consultant/rheummy's this has maybe got on peoples nerves but they dont take the drugs do they. So chin up onwards and upwards so they say
thibk you hit it on the head, it is like a death, the loss of the life you had, i am only just coming to terms my mysedl , best wishes ali x
I always think of the life I once had and how RA as destroyed it, I know that deep down but now after 17yrs have no choice but to come to terms with it.
I would have a good few days and think oh I'm getting better! there was no way it was going to rule my life I was the one in control, but I was so wrong. Yes I can be in control but only by living my life around RA. I hate what it as done to me but most of all my family, life would be so different I think my son as missed out on so much.
But, I can't keep punishing myself and neither can you Jo, we have been dealt RA and even though it as turned our lives completely upside down we have to adapt our lives accordingly. You will get there Jo believe me I know, it's sink or swim time I'm afraid. Make the most of the small things you can do with your children, mine was mainly reading.jigsaws,card games etc and let others do the rough and tumble and running around.
I could go on but I think you know where I'm coming from.
Totally get it, no need to elaborate! I just get fed up of saying "sorry, can't do that" but try really hard to do all that I can, even if it's from a distance watching someone else do it...humph...it's way better than not being here at all though x
Come on guys, yes it's a horrible and unpredictable disease but adaptation is the survival of life and mankind. With controlled disease most people diagnosed in the last 10 years or so will have an almost near normal life. Yes, taking the ruddy pills, but so what? It keeps people in a job, you are contributing to the world economy!
I'm fiercely independent, I will not have things done for me, but it has ensured that I don't give in easily and when I do everyone knows how bad I am. I self manage as much as I'm allowed and this keeps me positive. Jo, things do get better ... really!!
Thanks Lyn, I have to admit that things are better than they were but after a particularly stubborn flare I'm exhausted, emotional and just feeling sorry for myself!
I very rarely ask for help, but then again that's my main problem...I find it so hard to do so, so I suppose RA has had a positive result already in that respect?! I struggle on through the stresses and strains but have had to admit defeat on more occassions but why the heck not! Other people do it for lesser reasons than the fact they can't move. One day I'll repay the favour I'm sure, in one way or another x
Your right Lyn, the more independent your are the more rewarding it is for yourself. It is about not giving in but also about not being afraid to ask for help if you do need it.Yes it's damned hard at times we all no that, RA may have taken most of my life but my independence! That's mine! lol
I just think that when you're diagnosed you should be offered some advice or help with how to try and maintain a normal life. Apart from being told I'd basically died and my old life was gone there was nothing. Am I crackpot for wanting to know what will happen to me? You hear things like "your prognosis is good" when all you feel is shockingly terrible...!
I'm still a newbie, 3 years in and I only just feel like I'm coming to some sort of conclusions about how this thing works for me...just touching the surface of it all really and this latest scare had me worried. It's frightening how quickly things go downhill and when you're on the slope it's hard work trying to go back up again!
So, I'm trying to remain positive, not to worry, to avoid stress (er?) and to rest but sometimes that is difficult to do when I'm on my own. Maybe I'm expecting too much of myself, I don't know!
Until a month ago I had no one apart from my partner and my mum to talk to about all this and I value you all so much, whether it's info, advice or a kick up the bum please keep it coming! x
p.s I'm fine.
yes they dont deal with the person, the holistic approach, its oh dear are you a little depressed, cue poke out eyes with sharp pin(well I like to! want to change consultant, told she wouls sort out pain management or counselling and has done neither!!),
I so agree that a holistic approach to diagnosis and management of RA would be great. Unfortunately, that is sadly lacking across the medical profession and other services. I don't necessarily think they don't care, I think they are just constrained by budgets, lack of time, massive caseloads and often lack of knowledge. They know the 'text book theory' but are often less able to deal with all the 'extras' that come with a chronic illness or disability.
Having said that, I also think we have to be pro-active in sharing our knowledge and experience with others. The best testimony to what helps and what doesn't help comes from people who are living with or caring for someone with the condition. This works best when it is done in partnership with professionals and services so that they can use this input to shape existing and future services and make sure that budgets are being spent effectively and really helping people.
I think NRAS and HealthUnlocked are taking positive steps in that direction. I've found these sites to be the most positive and useful points of support and information since being diagnosed with RA. I love everybody's blogs and comments and have felt a lot more positive since joining.
Hopefully Hurricane RA will downgrade to a smaller storm soon. I wish you lots more better days and less of the grotty ones. I love your posts and think you're a really talented writer.
Thank you for your compliment Ann, it's nice to be appreciated!
Before I began to really search the web for people diagnosed with RA (to be truthful, I was too scared to) I didn't really 'know' anyone else with it so I am so happy to have stumbled across you all on here! It has been and will continue to be a big boost to all of us knowing there is a someone out there with an answer or a kind word or a gentle hug or a swift kick in the right direction should we need it!
I'm outside enjoying the sunshine today wondering what an earth all the fuss was about, hurricane, what hurricane?! xx
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