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Newly diagnosed - That acceptance thing again and families

PaleogirlPaleogirl Posts: 75
edited 24. Sep 2016, 15:12 in Living with Arthritis archive
I was reading the other thread on Acceptance and on shoes which made me think.

I was only diagnosed last week and have mixed emotions. My grandmother died of complications from the disease. I was a young carer and my childhood was dominated by my family working around my grandmother's illness to the point we really didn't get a childhood.

My mother has always been obsessed with the fact she may get RA attributing every little niggle to it potentially being that. I did some nurse training back in the 1990s before leaving to have major surgery and I remember a tutor telling me if anyone was going to get it, it would be me as it often skips a generation, so it has always been hovering as a grisly joke in the back of my mind.

I went down to the doctors with a thumb that wouldn't bend and a belief that there was nothing wrong other than getting middle aged, my GP who is very far thinking decided to do blood tests and X-rays as s belt and braces. Even so his colleague refused to accept I had anything other than neurotic tendencies.

So in terms of acceptance, I'm slightly relieved I have an excuse not to wear heels as I've never liked them. I feel slightly relieved that I can exercise and not have to beat myself up about not being brilliant at it. I can slightly accept it as it has lingered at the back of my mind for years even though I didn't have it.

What I find harder is to accept the diagnosis as correct when everyone the medical profession particularly accused me of being a neurotic, middle aged hyperchondriac. It feels very strange for these same people to be jumping up and down now saying is there anything they can do. Doesn't the world change when it's perceived you have a "real" illness.

I'm finding it hard that given their previous attitude I am now on the maximum dose of what seems like every drug in the cupboard and from being a mailngerer now I have to have blood tests every two weeks.

I'm finding it hard to be told so abruptly that my social life as is now over, no Friday night glass of wine etc

And finally the attitude of my family. From aunts who say pah it's not that serious they can stop it with a tablet now, don't indulge her. She's nowhere like our mother. My mother who says I don't think you need the tablets, it's not that serious, I think you are just encouraging them. My brother hasn't even contacted me because it's not worth it.

Essentially the consensus is, it's a touch of arthritis, everyone gets it at my age but not everyone makes a deal out of it. The deal being the doctors giving me tablets.

My lovely GP said, give them the leaflets and the ones with the drugs on and ask them if it is still fine! He thinks because of my medical history I have a much higher pain threshold and didn't realise what as going on. This was echoed by the consultant who said, I don't think you realise just how ill you are.

I don't know if anyone else has found one of the barriers to acceptance is everyone else telling you, you are just a drama queen.

Comments

  • daffy2daffy2 Posts: 1,713
    edited 30. Nov -1, 00:00
    It's early days yet, you have a great deal to try and come to terms with, so I can understand your reaction to your less than helpful family.Unfortunately even those 'loved ones' who are well disposed to the arthritic member of their family can commit faux-pas or not 'get' the problems being faced as you will see from reading the posts here. In your situation I would be inclined to concentrate on your own problems and getting to grips with it all and let the rest think what they will - if they choose to disregard what the medical profession is saying to you that's their choice.
    The forum is here to support you, and is able to do so because between us we know what it's like. I 'only' have OA, but it is compounded by other conditions, and my middle sister still has not grasped that quite a lot of my life is not so much 'don't want' as 'do want but can't, or not as I would wish'. She has had a couple of very serious medical issues(one life-threatening) and has recovered, so can't understand why I'm not doing anything to help myself, as she sees it, and why I get worried about the future.
    Be kind to yourself, take your time, talk to us. Try to focus on things which give you pleasure, however small they may be, to try and leaven the lump of the medical issues. Being 'mindful' and 'living in the moment' may be uncomfortably trendy but for many of us they are a way of life - a sunny day, kindness from a stranger, coffee with a friend, birds in the garden - and are all part of the acceptance process.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh dear, you are struggling with everything in your life and no wonder. You have experienced ill-health in the past (and overcome) but your latest diagnosis, as far as you are concerned, appears to be in a league of its own.

    You are not on the maximum dose of every drug in the cupboard, far from it but this is very early days so that will skew your thinking. I reckon that your attitude and thinking about this latest health setback reflects your shock and that's completely understandable. This disaster of life is meant for other people. not you.

    Acceptance is a very individual matter and won't happen in a week, a fortnight, a month or a year. It takes time and you have not had a great deal of that so far, have you? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmortonfrogmorton Posts: 25,580 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh Paleogirl

    That makes so much sense when you hear all you've just said.

    Many of us have family and so-called friends who make us feel we are making mountains out of mole-hills. I tend to agree with the GP and would indeed let them read about your meds and see whether they fancy trying them!!!

    As for your brother I hope he will contact you in time, he could well fear the same for himself given your joint upbringing. Or he might be like mine who has an aversion to all things medical incase he's called upon to help in any way! When Yours does contact you I am sure you will be the bigger person and just be pleased to hear from him.

    I was going to suggest the acceptance thread....acceptance of something like this takes a long time. Often I think I am there then something goes wrong and I realise it's an on-going process.

    As for your Friday night glass of wine - I have mine every Friday night if I can. Just a few weeks when you 'behave' until bloods show whether the drugs are ok for you. If they aren't there are others to try.

    I think I may have told you that in the early days for me I wasn't very nice - I wouldn't make plans incase I had to cancel and was pretty resentful of those around me who seemed to get of scot free :oops:

    After a while I realised it was safe to make plans and now I really do have an ok life I promise you.

    As for those who think you are being a tad dramatic about it all. Use us, share your anxieties with us. We understand and won't make you feel a fraud, a wimp or anything at all other than who you are because you know we actually do understand.

    Sending you extra ((()))

    Toni xxx
    Love

    Toni xxx
  • PaleogirlPaleogirl Posts: 75
    edited 30. Nov -1, 00:00
    The disease I'm pretty accepting of, I've been in pain most of my adult life, that's why the GP thinks I didn't notice this at first. He thinks given the amount of swelling other people would have been knocking his door down,

    It's the drugs I'm not fond of.

    Don't have an option of conceding to the illness though, everyone including work has decided I can carry on as if I don't have it. It strikes me everyone who expects me to do everything for them is having a harder time accepting it lol
  • frogmortonfrogmorton Posts: 25,580 ✭✭✭
    edited 30. Nov -1, 00:00
    Very good Paleogirl!!

    I forgot to mention that you can ask for anti-sickness meds if you feel queasy the day after your MTX.

    I think, now that you have such a good GP you'll get them if you want try them. I also forgot to say 'well-done' for taking them

    Love

    Toni xxx
    Love

    Toni xxx
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    As the others have said it's early days and it takes a while to take in the different news. As for family My Mother is still not excepting that I have Arthritis and other medical problems including Epilepsy (she has experienced me having a seizure as well!!) and Osteoporosis. As for my ( Late, passed away in April) Father, he once told me to buy a bike which hurt as seeing as I had shown him my medical report. I just hope you can get your family to understand and accept what is happening to you Arthritis wise as support from your family and friends is an important part of living with Arthritis.
  • BruthaBrutha Posts: 51
    edited 30. Nov -1, 00:00
    Paleogirl,

    I always tried to get on. I was 100% capable and willing to take on anything. Regardless of the aches and pains I always tried to manage as best I could. My other half was always first to moan about her aches and pains. She monopolised it. So I just did my best and let her take all the rest and lie ins etc. Then it built up too much and I booked myself into a rheumatology clinic privately, too much pain for too long. After a MRI scan and ultrasound on my hands he gave me an injection and said "there's define toy something going on". It was amazing. I could move my shoulders properly for the first time in years- I have always had dodgy shoulders, I thought that history was causing the problems there, honestly thought my shoulders were limited to half movement forever. I was wrong. Additionally the morning pain in my feet had gone. And many other minor pains cleared, pains that I hadn't realised I had.

    Fast forward 18 months and I am on three dmards (including methotrexate) and the other stuff as well of course. Slowly things are improving, they tell me. I certainly have far less instances of flared joints, but things have had to change.

    I am starting to find my acceptance. And for me it is not being embarrassed when I need to take a day for myself. When I don't do the housework or DIY that needs doing because it doesn't suit me to do it that day. I never say the arthritis is bad. I just say I need to rest. But I have made damn sure that if people are asking me "how are you?" They know they will get an answering that will be at least as annoying to them as that question was to me.

    My kids, 12 and 9 years old respectively, have accepted that some days dad can't play football, some days I am on the sofa -(it won't sit on itself you know!)- They have got used to it. Mind you they have also accepted that some days dad will get pizza for dinner out of the blue, simply because I ain't cooking today. Enough was enough so pizza it is.

    My other half is certainly pulling her weight now. She is no longer dominating the rest time. Quite simply I take it if I need it. I never used to and she has accepted that change.

    Outside of the Mrs and the kids my other family have not complained to me for a while. But I learnt quite early on that they weren't capable of understanding. They had their own lives and their own lives were certainly very full. So I couldn't blame them. But over time they know to offer me a seat, if I need it (often do of late ) I will take it. If I don't need it I won't take it. They also accept that I will blow out plans at zero notice if I have to. But this has taken time for them to get used to this.

    It's a new stage in their relationship with me. All of them. Arthritis is a great teacher. I have learnt a lot about myself, auto immune diseases, but most of all I have learnt a lot about many people in my life. The cream always rises to the top.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Arthritis not only affects us, it affects everyone who knows us and Brutha's post illustrates that very well indeed. I understand his exasperation with the 'How are you?' enquiry but that is part of the social 'oil' that lubricates human relationships. My reply is 'I'm fine thank you, I could be better but I'm pleased I'm not worse.' That answers the question, satisfies the social niceties and that's important in maintaining and retaining our social networks. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Brutha wrote:
    Paleogirl,

    I always tried to get on. I was 100% capable and willing to take on anything. Regardless of the aches and pains I always tried to manage as best I could. My other half was always first to moan about her aches and pains. She monopolised it. So I just did my best and let her take all the rest and lie ins etc. Then it built up too much and I booked myself into a rheumatology clinic privately, too much pain for too long. After a MRI scan and ultrasound on my hands he gave me an injection and said "there's define toy something going on". It was amazing. I could move my shoulders properly for the first time in years- I have always had dodgy shoulders, I thought that history was causing the problems there, honestly thought my shoulders were limited to half movement forever. I was wrong. Additionally the morning pain in my feet had gone. And many other minor pains cleared, pains that I hadn't realised I had.

    Fast forward 18 months and I am on three dmards (including methotrexate) and the other stuff as well of course. Slowly things are improving, they tell me. I certainly have far less instances of flared joints, but things have had to change.

    I am starting to find my acceptance. And for me it is not being embarrassed when I need to take a day for myself. When I don't do the housework or DIY that needs doing because it doesn't suit me to do it that day. I never say the arthritis is bad. I just say I need to rest. But I have made damn sure that if people are asking me "how are you?" They know they will get an answering that will be at least as annoying to them as that question was to me.

    My kids, 12 and 9 years old respectively, have accepted that some days dad can't play football, some days I am on the sofa -(it won't sit on itself you know!)- They have got used to it. Mind you they have also accepted that some days dad will get pizza for dinner out of the blue, simply because I ain't cooking today. Enough was enough so pizza it is.

    My other half is certainly pulling her weight now. She is no longer dominating the rest time. Quite simply I take it if I need it. I never used to and she has accepted that change.

    Outside of the Mrs and the kids my other family have not complained to me for a while. But I learnt quite early on that they weren't capable of understanding. They had their own lives and their own lives were certainly very full. So I couldn't blame them. But over time they know to offer me a seat, if I need it (often do of late ) I will take it. If I don't need it I won't take it. They also accept that I will blow out plans at zero notice if I have to. But this has taken time for them to get used to this.

    It's a new stage in their relationship with me. All of them. Arthritis is a great teacher. I have learnt a lot about myself, auto immune diseases, but most of all I have learnt a lot about many people in my life. The cream always rises to the top.



    Mark, that's an amazing post and thanks for the insight into your changed circumstances.

    I think you're dealing with everything brilliantly and I love the way you are using your arthritis as a tool to better understand the world and people around you. You have faced things square on and your matter-of-fact – and quite unselfpitying - honesty as regards what you can and can't do, and when you can and can't do it, is something that most of us take much longer to acquire.

    I'm sure your kids will be proud of you, even more so as they get older and understand better. And so they should be.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • BruthaBrutha Posts: 51
    edited 30. Nov -1, 00:00
    Thanks both of you, have to be positive, cos otherwise it's stress then flare! Daisy is right about the social interactions of course. Catch me on a bad day and that's what happens though. Always something to work on, and that's definitely something I must deal with better.. Will try to follow your good advice on that!

    Mark
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I remember my mother saying to me when I was a child (and extremely ill with my eczema and asthma) that feeling poorly was no excuse for bad manners. I might be having a bad day but family, friends and acquaintances won't necessarily know it so why should they bear the brunt of my troubles? :? My husband and I have established code phrase so he knows what's what and what he may have to do. 'I've had a rough day.' is enough to send him into action. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • PaleogirlPaleogirl Posts: 75
    edited 30. Nov -1, 00:00
    Have to say my other half has been brilliant. He is I think relieved that I have finally got a diagnosis as although it seems quick, from seeing the GP to seeing the consultant I have of course been ill for a while.

    He works for a disability aids firm so we found that quite funny.

    The reaction of the medical profession and all the GPs in my practice has also been great. They can't do enough for me now I've been diagnosed.

    I find it quite weird because the medical profession are now you need to take it easy you have a serious illness etc where as friends and family who were sympathetic before my diagnosis are like oh that's all it is then, just a touch of rheumatism aren't you making a meal of it with all the drugs for something so petty.

    I think I am most disappointed though in my work colleague who has RA but is not on any tablets. She has been to my bosses and told them not to give me any leeway over the next few months and that I needed to be worked "harder than anyone else as I need to keep at it" she then gave me a lecture about the fact you have to pretend it's not there and act like normal.

    Now to be fair through all of this I have never taken a day off work, I've continued to swim for 40 minutes three times a week, I have worked, driven, tidied etc through all the pain and the exhaustion. I don't regard that as giving in. My GP thinks it's because I refuse to give in I didn't realise I had the condition in the first place.

    I still have to take my border collie and whippet X for a walk and play every day as they really don't understand but I let them off :)

    My boss is leaving at the end of October he wants to get a plan in writing about potential working from home and short days for the next few months as he wants to protect me. He has been concerned that I've been looking very ill at work and he wants to help as he knows his successor not only dislikes me but is a micro manager who likes to make everyone sit at their desk for 8 hours so he can see them.
  • frogmortonfrogmorton Posts: 25,580 ✭✭✭
    edited 30. Nov -1, 00:00
    Well how lovely :)

    This post is good to read - I looks as though you are working through a lot of what has happened to you and sound a lot less shell-shocked!

    Your boss sounds really great and definitely you should get on with getting plans in place to protect you and enable you to continue to work and be a productive employee.

    I'm not convinced by your colleague who has RA and no meds though....very odd. I would try and avoid dialogue with her about your own condition. :?

    The dogs are a very useful 'tool' to ensure you have to go out even if they now run on their own some of the way and the swimming is excellent exercise for you.

    I am very pleased to know you have a fantastic and supportive partner as well....his support is really the most important component to coping with a long-term condition.

    Marks reply to you illustrates this very well. The tables have turned in his relationship and now his partner is supporting him more and he has clearly learnt to pace himself. A really inspiring reply there :)

    Paleogirl ,you carry on doing what you are doing and hopefully the meds will do their bit for you enabling you to carry on living a full and fulfilling life :D

    Love

    Toni xxx
    Love

    Toni xxx
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    Have you talked to your GP about a "reduced hours" note? I was on this for several months before my neck op, the idea is to help keep people working rather than being signed off completely. My GP discussed my job and hours and made a recommendation and it was reviewed 6 weekly, it doesn't count as sick leave and you remain on full pay.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
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