You all seem so in control, how do you do it?

Northstar

When I first joined in Feb 2012 I remember reading many posts, all so positive, with many of you having accepted the confinements of Arthritis so gracefully. Many of you were battling on with such tenacity and had great confidence in the direction your treatment was going to take. Could not bring myself to post my story. But today has been my tipping point sick of the pain, lack of mobility and having to rely on my husband for everything.

I am 36 and was fine two years ago (loved the fast life, being active enjoyed living life at 100 miles per hour, believe it or not enjoyed being stressed!!. Married with three young children I used to run for charity and for fun.) then just started to feel generally unwell and tired all the time, doctors were clueless. Told I had IBS.

Then the strange weeping and bleeding sores on the body came, so disgusting especially for a body conscious young woman. Still the doctors were baffled, all sorts of creams prescribed but did not work. Then I went on holiday last year and woke up unable to bear weight on my upper arms (put it down to the long drive to ST.Ives.)

Two days later my middle finger bent in towards my palm and was stuck fast, the doctors said it was "trigger finger" would need an operation. Referred to a hand surgeon. A week after that my full body was affected I could not move or walk. Finally a junior doctor joined the dots and did a blood test for inflammatory markers, mine were through the roof.

Diagnoses severe Psoriatic Arthritis, medication loads, primarily Meth currently 17.5mg being taken up to 25mg with the intention to add something else. Going on to injections when the nurse can see me been waiting 4 months. As I have reflux disease meth making it so bad. Can't take anti inflammatories due to this as I am in the pre ulcers stage, on 100mg of esemeprazole, domperidone, and lots of gaviscon advanced as per gastro consultant.

When does acceptance come still so angry!! I am nothing like the person I was, don't even look the same. Sick of bumping into people not seen for a while and seeing the shock on their face. My children have been robbed of their old mum.

stickywicket

When does acceptance come? That's a tough one, Northstar. Certainly not, I'd suspect, after two years in which your life has been turned upside down. You need first to grieve (old-fashioned word but it seems appropriate) over what you have lost and it sounds as if you've lost a lot in a short time. Don't be so hard on yourself. You've been through a lot.

These auto-immune diseases affect us differently. Some unfortunate ones, like yourself, seem to get very aggressive versions: others manage reasonably well once the meds have kicked in. If I seem calm and accepting it's because I've had RA most of my life and have had plenty of time to accept it. Also because I've still managed to do most of the stuff that was important to me. Acceptance can't be forced. It will come in its own time.

I hope the injected meth will help. I'm OK on the tablets (with hydroxychloroquine) despite a dodgy tum due to years of anti-inflamms.

I'll bump up an old thread on Acceptance' for you but I think what you really need is time. Take care. And keep talking to us.

valval

hi so glad you feel free to post it is a big step but we try to stay positive but all of us have good days and bad we support each other when times are bad but it is a bit like the loss of a loved one you go through a whole range of emotions as you are finding out keep posting we will help you all we can but non of us has answers as we all differ in how it affects us and how we cope good luck val

elnafinn

Hi Northstar

Goodness, you have and are going through it and I am so sorry. No wonder you cannot accept the situation you found yourself in. You have been on a rollercoaster these past two years and must have been a terrible shock for you and your loved ones.

We all use the forum for various reasons and we have different forms of arthritis and some are not so "nasty" as others. You are so young too for all this to have reared its ugly head and at such speed.

One thing we do know is that when we call in here we will receive support, a kind word and as much help as we are able to give.

Have you been offered light therapy by the hospital? For some this is of help and others not. Do you find the sun suits or aggravates?

I wish I could help you, do call in as often as you wish and someone will always be here to have a chat with you. That can be of some comfort, well I have found that in the past.

Gentle hugs
Elna x

fowls48

Hi Northstar


Everyone on this forum has helped me on the road to recovery with this disease , They are a fine bunch of people , i know i would not have managed
with out their support.

******* 5 star treatment .


fowls48

Folara

Hi Northstar

I'm not sure a lot of us have really accepted our lot in life, I certainly haven't. I hate the whole being a cripple thing and I miss my old self terribly but I have to get on with things as they are now.

I like to come on this forum as there are so many going through the same or very similar problems. Uncle Arthur knocked on our doors and we let him in without realizing what a miserable old goat he was and now he won't go. So we all jump in each others pockets and share our spoons and collectively help to push old Uncle Arthur into the broom cupboard under the stairs.

Fols x

earthspirit

northstar i feel so sorry for you in both the mental state and the physical one. this is the right place to come for support tho and in help with the meds and their effects.

i agree that there is a grieving process and although i dont have any skin issues i do have aggressive form of RA. im much older than you though and have a daughter your age so i have been able to live without the severity and somehow perhaps my age has helped me in acceptance.

alternatives arent discussed much on this forum (i havent been around long so i could be wrong) - have you tried gluten free or eliminating things like potato tomato and other nightshade foods. have you had physio to help strengthen your muscles. have you had the option of hydrotherapy?

could you go swimming with your kids? are they old enough to help you a bit more round house? do you get finaicial support you might be entitled to?

i know your question was about acceptance but i think this also comes from having help to do day to day stuff. if you are trying to carry on as you were before, then this is not a good place to be in and will make the burden seem much heavier.

sometimes its the disability as much as the pain gets to people but accepting there are some physical things you cant do is the best place to start.

the acceptance thread is a really good one and to me was honest heartfelt and let me feel that i could cope, when i read of how others learn to cope and accept.

hopefully you will read a few lines, a few words that will click in your mind when you read others views, that helps you put your own brain in control, in the way you perceive others as doing.

elnafinn

Hi Northstar,

Me again! :roll: Even though it is most difficult at times and especially for you at the moment, which I can fully understand, do try and not let "arthur" get the better of you. Show him who is boss. :shock: :x
Try to think of at least one positive every day, I am sure you will be able to do that. Why not write the positive(s) down each day, it is always something to look back on which could be of benefit to you. With three children, although hard work they will keep you buoyant and you will always be their mum.

Gentle hugs
Elna x

suzygirl

Hi, I am 40 and have been ill for 5 years now. It has been a journey rocky and emotional but am emerging tougher, resilient and slightly more patient. In some ways it has made my marriage stronger and in others it has changed. Still have bad days and get soooo frustrated with myself. It has taken me ages to get to this point though. Some 'accept' quicker than others.

I was stubborn and denied it and made things worse. You do need to grieve, you have suffered a massive loss and you need time to accept, adjust and come to terms with it all. Some once on a good combination of meds, live a near norrmal life. Talking to others in the same boat helps, which is why the forum helps. It stops me driving hubby insane with my moaning

You have to listen to your body and learn to accept that things have to change. My house is not immaculate, but my lads are happy. I have help with cleaning and ironing. Meals are a challenge but we struggle through. If I have to go back to bed when I have seen my son off to school so be it. Your priorities change and you have to learn that you can't be supermom anymore, but that you can still have a happy life.

I save my energy now for things I enjoy rather than cleaning!! I still haven't got my meds sorted and unfortunately I wont be able to work again. I am content though.

Keep posting and talking to us. We understand and want to help. I didn't mean to ramble on about myself but wanted to share my experience. I was super active and rarely sat down, always on the go. I hated bumping into people with my steroid moon face and crutches, wheelchair etc. You get through it and learn to laugh. You communicate better and more honestly and you find out who your friends are.

Take care and a ((( hug ))) from me.

frogmorton

Dear Northstar

You poor thing! No wonder you are still so upset/scared/angry/terrified/etc etc.

We have all been there - and some of us (me) do it again all over every now and then when life feels extra rubbish.

Having said that in some respects you haven't yet got your medication sorted totally have you? So things really should still get a lot better than they are.

A lot of us have stomach issues too an can't take some anti-inflammatories. Have you tried the newer Cox2 inhibitor types? I take Arcoxia myself.

My main piece of advice for what it's worth is to get informed (only reputable sites like A/C), and keep talking. By talking I don't mean necessarily to friends and family, but to people who understand such as us lot There may even be a local A/C branch near you where you can meet others (some also young and previously dynamic), who are in a similar position.

Fear of the unknown and the future is the worst thing for me personally so this forum has been aa absolute lifesaver.

Please take care

Hope to see you posting again soon.

Toni xxx

dibdab

Hi Northstar,

I really just wanted to add my voice to those sending you good wishes and positive thoughts. I can't honestly say that I have "accepted" my Ra, but I am slowly learning to live with it. As others have said there is almost a sense of grieving for the things we have lost, but in a way what I have gained is an enormous warmth and care from many people who willingly help me at work and at home, even the children show care and compassion-only this afternoon a 7 year old at school watched me carrying my bag with my splints on sore wrists- he came over and said" can I help you, I could carry that bag for you"- and my heart was warmed by the spontaineous caring.

Maybe if you could find a space for recognising and recalling the positive moments it will help you through that process of coming to terms. Sadly for most of us here life will never be the same, the activities will have to be adjusted or maybe even surrendered, but life is for living, and those who care for you and value you will no doubt love you as much and be there for you through the stuff stuff.

Take care and keep talking, it really does help.

Deb x

refereerick

Hi Northstar,
Its 'orrible this lark ain't it?
I am 41 and 8 week ago's I was a healthy self employed builder, and enjoyed football, cycling, walking etc. It hit hard and fast and within a week I couldn't walk or hold a pen. It comes as a big shock but you just have to adjust your goals, for me, one day was a hard days graft at work, the next was if I could walk as far as the garden! I've only left the house in this time to go to the doctors and hospital. But you have to stay positive and as one chapter in life closes so others open up.
I hope you learn to cope with this soon, its rubbish but we can't do nothing about it so we have to make the best of it. Keep your chin up and try to be positive when you can, we all have our ups and downs, we just have to try to make sure the ups outweigh the downs.
Take care, we're always here! Rick x

lindalegs

Hi Northstar,

We do know how awful it is for you at the moment as we've all been through it. Possibly, in our hearts, we never truly accept how we are because only the body becomes arthritic not the brain.

Remember you are the same person you always were, you haven't changed, your body just restricts you physically. Please accept and even ask for help with things as a lot of energy can be wasted through struggling to be independent. Do things yourself if you're able but don't fight too much because you'll end up frustrated and hurting.

We are here if you need to talk and there's also the Helpline (number at top of the page).

Luv,

tjt6768

hello from me too Northstar.. I'm really sorry to read that life has changed so dramatically for you mi dear... It's a horrid disease eh?
I'm really sorry but I can't advise much on the acceptance etc. I can't remember being erm, normal lol..
I'm really happy that you have been confident enough to start posting though and I hope it's the first of many..

Best wishes and I truly hope today is a good day for you.

kathe

So sorry to hear that you are having a hard time.
hopes it get better
I was born whit artherist , so it's always been a part of my. But I have had periods of my life when I have been symptom free anf feelt great. But the arterist has been inside my all this years.When it last year decided to come back,all sorts of toughts came to my mind. Why now, why can't I get youst some more years?
But now time is great to bee sick, it never fits in be sick in life.
But I had acepted that this is nothing I have control over.
I have support from the people close to me, but I don't feel that they always understands what a battel it is always beeing sick. But they really supports me.
I have a great job, but I have taken a choice not to tell every body about may artherist. And when I tell someone about It I tell as littel as I can. At work I like to bee youst me . But of course there are people that now, but I don't like when people are feeling sorry four me. It is so great beeing t at work and gett my mind of the artherist. But some times it is really hard beeing me, but I have things in my life that gives me meaning. When people stops to talk and ask how are you doing. I always say fine. Not because It's fine but it is so much easy to answer that and to tell them whats wrong. But I have people I tell everything to and that really helps when the artherist is bad.
Some of the toughts I have , We don't have control I think. I'm a strong person, people say, but they don't now the battel inside of my . It is so hard, but you youst have to hold on. And have things that make you going.

REALLY HOPE IT GET BETTER FOUR YOU.Hope you understads what I have whritten , (I'm norwegian).

elnafinn

So true Kathe. You do have to have things to keep you going, to look forward to, things you are interesed in and to have the feeling of being of use and loved.

The Scandinavians are such lovely people. My mum is Finnish. So I am biased, of course! She is 88 years old now and has had a hip and knee replacement. She has lived in England for about 63 years.

Elna x

stickywicket

kathe, there are so many words of wisdom in your post. You do come over as being a very strong person but even strong people can 'wilt' a bit at times. As you say, it's not important that everyone knows how things are for us. As long as we each have a few people to whom we can turn when things get really tough, that's enough - but those people are so important, aren't they?

kathe

Yes that so importent to feel needed and loved. SO you have scandinavia pearents that great.


That so impotent to have that people I life. I have had a really hard time finding people that I can really trust after I loost my best friend in cancer . But I'm so thank full that I have found people that I can trust an tell things to. Because it' is not to have people feeling sorry, it'is youst to have them listning to what I have to say.So importent to have good friends that stands bay your side when life is hard. That's whats ceep me going, to now I have poeple that love me and that care about me. And my jobb, I really love it. It'is the best jobb in the wourld. But whit my artherist I have found out that it is not sure if I can have the same jobb all my life. So I 'm going to take school in my free timevnext semester. So if the artherist gett wors I have something to turn too. But of course I hop it gett better and I can have the same jobb as I have now all my life. But having artherist really getts ou thinking about every thing.

earthspirit

those people you can be totally honest with are the most important in your life. my RA is really severe, im not taking the dmards and i have weepy friends, ones who talk in hushed tones to me & my own mother treats me like a geriatric, pretends its all ok and tells me "your face looks fine so you are ok". she plays it all down to relatives i dont see very often and makes it worse for my 3 children behind my back (who then come and tell me that they dont like this twofaced stuff)

my mother is telling lies to people who are close to me and i find this really stressful but i cant say anything cos i know in part she has concerns for her own mortality. she is 75 and though had a triple bypass is very healthy now. she had minor back surgery to have a single osteophyte removed and commanded sympathy from everywhere and i had to remind her that i have dozens of inoperable exact same thing.

i feel even more deeply for those i do trust and know that i can lean very heavily on them to help me cope with my mother. i am fortunate that my 3 kids of 17 20 & 32 can talk about my health in the way I want. i am a total realist regarding my own condition and accepted the possible further disability and probable shortened lifespan because of my disease. my dad doesnt live with mum and although i dont see or talk to him that often, he thinks like me so at least i have one parent who can handle my disease.

i have spoken to many people who have had really damaged relationships and broken marriages as a result of arthur in their lives and i do feel huge empathy for them as its a lonely path they walk. my partner does vast amounts for me in care and in providing the very best of delicately cooked meals and its painful when he knows that actually nothing that he does has any effect on how i am day to day. we been together a long long time - not married but the "in sickness & health" vow is there none the less.

i do think however, that it is up to the sick person to emotionally support their partners/husbands/wifes as being a carer is a very though and hard job. even though you might be very sick, you have a duty to others to not be selfish and i know that many people struggle with this aspect.

[Deleted User]

Hello Northstar,
You ask when the acceptance comes. For me, it didn't come yet. I have been suffering from RA for the last 8 years. Like yours, it's very aggressive. I am now 33. I still remember well how it is to spend all day on Oxford street shopping, then come back home, sit down for half an hour and be like new again. I still cry from time to time feeling sorry for myself and missing those happy days. Right now I'm seeing psychologist who is helping me to deal with my disease. Because even after so many years I still find it difficult to accept it. To be honest I don't think I will ever accept it. I just try not to think about it and fight it with drugs, surgeries and whatever else helps.

kathe

Sorry too hear that you are struggling so mutch Nesia too. Hope that talking to a psyshologist helps you.
I think we all cry sometimes when it's hard.I'm going true a hard time now having medications that stop working. I know other people see me as strong but when I'm alone I cry and it's hard. But when I'm alone I thik about all kind of things. And it is not easy to accept beeing sick but I think it is an importent part of getting better. I often think :"So I 'm sick but I go to work, do housework and all the things that a healty person do" I have artherist ,but the artherist do not controll my life" . I have found that it is the littel things in life, like going up the stairs , wasch the car and so on, things that regular people take four granted means so much to me when I can do. But of course we all cry, sometimes I cry me self to sleep and it' is not good but , the next day is a new day . But of course it is hard , but I have to gett true it four may family and friends.

christinac47

hi there i have O&A and at frist i could not cope with being sore all the time could not do things that i done before.docter saying am depressed when i was only upset about being in pain,,but i am still trying to find a balance with it you will learn how to live with it in your own way but just remember if you have a good day do not over do it ,just enjoy but dont do to much i learn this too the people in here are great to talk to take care and keep things as normal as you can your body will tell you if you are doing to much all you have to do is listen to your body when you feel tried.

christinac47

kathe wrote:

Sorry too hear that you are struggling so mutch Nesia too. Hope that talking to a psyshologist helps you.
I think we all cry sometimes when it's hard.I'm going true a hard time now having medications that stop working. I know other people see me as strong but when I'm alone I cry and it's hard. But when I'm alone I thik about all kind of things. And it is not easy to accept beeing sick but I think it is an importent part of getting better. I often think :"So I 'm sick but I go to work, do housework and all the things that a healty person do" I have artherist ,but the artherist do not controll my life" . I have found that it is the littel things in life, like going up the stairs , wasch the car and so on, things that regular people take four granted means so much to me when I can do. But of course we all cry, sometimes I cry me self to sleep and it' is not good but , the next day is a new day . But of course it is hard , but I have to gett true it four may family and friends.

so ture kath i am the same i work all the time i live in a top 3 flit flat and do housework,need to get someone to do my garden as its to hard but i take every day as it comes some bad some good so true

amet1

hi nice to see a newbe on here ,acceptance is hard for me too, i suppose its like a process, i get angry and depressed at the things i no longer can do, just sold my piano :x and moved downstairs, things have to be done and tablets have to be taken but i dont accept it and never will, i will carry on as much as i can and probebly will still be angry everytime the disease progresses. not good emotionally though and i do pay the price with depression.i too wish that i could be more accepting of the dianosis i have.but its a loss of dreams for the future that hurts, and trying to come up with ways around the illness that allows me to do what i want regardless, still early days for me (2 years) so maybe all that will come never been a patient patient lol,good luck with your journey......

dreamdaisy

It's not an easy thing to face Northstar, all of us know that. I am in my sixteenth year of PsA (which has led to OA in my knees and ankles) and yes, there is so much that I miss but I rarely think about that now. The 'you-ness' of you is still there but you are under the cosh of this disease and that is draining your energy, emotion and spirit. In time that draining will cease and you will find your way of coping, your way of fighting back, your way of dealing with this disease and its unreasonable demands. Until then we're here to listen, encourage and support, so please come and talk to us. We who have it get it. Those without probably won't. I wish you well. DD

Northstar

I am truly overwhelmed by all your responses, I hope I did not insult anyone by underestimating your own backgrounds/journey, rather naive of me to think you were all so "controlled", sorry. I don't ever want to let PSA get me like it did the other day, so insular and self centered all I could see was me and what it was doing to me, like I was the only sufferer in the world much to my shame. That is not the person I have ever been.

I come from a family of stead fast cope we will types !!!, when I was diagnosed my dad told me I had fought for many things in my life and one more round wouldn't hurt. I would like to think I am going to keep getting back up.

But for the first time when reading your replies to my post I felt understood for the first time, no blank faces looking hopelessly back at me. For that I would like to thank each of you from my heart. You have all been an inspiration!!!

I read the recommended posts regarding acceptance too, and there were many tears the first since diagnoses, strangely over my vast collection of beautiful shoes all gathering dust in their boxes. My fantastic husband came in whilst I was in mid sobbing to ask what an earth was wrong, all I could manage was "my shoes my beautiful shoes." He now thinks I have lost the plot for sure. Thanks guys XXX