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Hi, Im new to this, 12yrs ive managed, now i need help

LynnezLynnez Posts: 4
edited 15. Sep 2016, 05:22 in My Child Has Arthritis
Hi everyone. I hope that someone will read this & be able to offer some advice. My son who is now 21 was diagnosed with jia at the age of 9. We have had many ups and downs through out the years. Fighting medication, not turning up for appointments, massive flare ups, realisation that he cannot manage alone, long periods of remission, getting life back then wham, its back again. He is now in the worst state I have ever seen him, all his joints are now affected, no medication appears to be working. I fear he is giving up hope. He is very emotional, not himself at all. He has closed everyone out. Locks himself away for days. I don't know what to do.
Sorry to come on here with such depressing news. Please may I just mention that we have had some good times too

Comments

  • dreamdaisydreamdaisy Posts: 31,541 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am very sorry that you have had to find us. I am not a parent but do post on here because it's probably the quietest of all the boards on here; parents are busy people.

    I am not a doctor but it sounds to me as though your son is depressed and no wonder. Arthritis is an insidious disease and it affects everyone in the family group, not just the one who has it. It sounds as though he has just had enough of it all (we all get like that from time to time) but how to turn his mood to something more positive is going to be very hard. Would he consider counselling? Would he go to see his GP to talk things over? If he has friends I guess they won't have a clue about tough life with arthritis can be and wouldn't be able to offer the support he needs. I didn't begin mine until I was 37 but I know the frustration of medications not doing what they are supposed to do and the feeling that you are in the grip of something which is shaking you like a whale does with a seal.

    I think you both need professional help which is not connected to the medical side of things, these are emotional issues and they need different treatment. Who has been supporting you over the years? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Hello lynnez. I see that dreamdaisy and I are both thinking along the same lines.

    There is no good time to get JIA but just before one hits adolescence is definitely a bad one. I guess much of the normal ups and downs and battles of adolescence would now be focused on the disease and medication. Long periods of remission, paradoxically, wouldn't help as they would only give your son fuel for his denial.

    When he's been in remission has he been on medication? Which meds has he had and what is he on now?

    Your poor lad is going through the mill on the emotional front as well as the physical one. If he 'locks himself away for days' do I assume he is not in work or study? If not he'll be quite cut off from his peers and isolated, again, physically and emotionally. Maybe sorting out that side of things would empower him to deal with his physical problems. Have a look here at what the Samaritans do for young people. No-one has to be suicidal to contact them. Just unhappy. http://tinyurl.com/pywjf5p .

    As a mother of two adult sons (neither of whom always acted like adults :roll: ) I feel for you. Yours might have brought some of this on himself by refusing medication and appointments but now he's older and hopefully wiser. He needs help and he needs to take charge of his own disease. You, too, need help and support because you must be worn to a frazzle by all this. Maybe you'd find it useful to ring our own helplines just for your own sake. And we are always here to listen and support.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • LynnezLynnez Posts: 4
    edited 30. Nov -1, 00:00
    Thank you for the replies. I can only apologise for not replying sooner. Unfortunately my son has been escalating his road of destruction. He has turned into someone that I don't know. When I last posted on here, he was in work, a very good job, with a fantastic caring boss that would do anything to make things easier for him due to his illness, he refused to go, now he has lost his job. There are loads of things that im not happy with now, it has escalated to the next level. I have tried to get him to see his gp or his consultant, he refuses. Now I have run out of ideas and strength, all I can do is leave him to it. Does anybody know if there are specialist organisatons out there to help
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    I'm so sorry things are no better, lynnez. This must be an awful situation for both of you.

    You ask about 'specialist organisations' that can help and I'm wondering what sort of specialist organisation you mean. Arthritis Care have The Source which is designed to help children and young people (http://www.arthritiscare.org.uk/PublicationsandResources/Someonetotalkto/Helpline/TheSource ) but it seems to me it's not just the arthritis and your son is maybe very depressed. You could try to get him to ring Samaritans but he's an adult and you can't force him. You could always ring them yourself though as it does help to have someone to share problems with. Or you could ring our own helpline.

    Being a parent, especially of a young adult, can be very frustrating and very worrying. At the end of the day, all you can do is love and support him but, if he's living in your home, you're entitled to set some ground rules and make him do his fair share of work.

    I hope things improve but, either way, remember we are here for both of you.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,541 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello again, I am sorry to read your latest post and I concur with Sticky: your son is an adult so you cannot intervene on his behalf but I think this is more than the arthritis (and that is bad enough). Arthritis affects the whole family, not just the person who has it, its poisonous ripples touch everyone and it is not an easy thing with which to deal.

    He may not wish to speak to his GP or consultant but I don't see why you cannot contact them and explain his current situation: they may be able to recommend organisations to help you but your son has to decide to help himself and that can be very difficult to do when one is lost in the pain and hopelessness of our conditions (and they are hopeless because in this day-and-age of cures, when illness of any kind is regarded as a complete no-no because it interrupts our 'lifestyles', the knowledge that the majority of us auto-immune arthritics don't have one is tough). Females are usually more willing (and able) to contact people and speak about their troubles than males,: I wonder if he is battling with issues such as low self-esteem, his role as a man, his failure to cope with the demands of the disease: it's a complex business being a bloke even when you're a healthy one. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LynnezLynnez Posts: 4
    edited 30. Nov -1, 00:00
    Thank you both for replies.
    Just to keep you updated........................... Probably the most wrong way to deal with the situation........................but, I exploded on him. I suppose I was really quite nasty, without going into too much detail, I think (hope) I made him realise he is is on a road to nowhere, and I was not going to allow myself and his sisters to go with him.
    I hope Ive persuaded him to go to see the GP and he has now asked his sister to go with him. Appointment not paid yet.
    I have told him for a week he deals with things with out me, I need a rest.
    His sister has told me that he has been quite productive today, although he is extremely tired and irritable now.
    Will keep you updated..............Im off for a nice long soak in the bath :D
  • dreamdaisydreamdaisy Posts: 31,541 ✭✭✭
    edited 30. Nov -1, 00:00
    Who cares if it was the wrong way? If you have given him a jolt then that is a very good thing - he needs to be aware of the effect he is having on you and his siblings, that you are all unhappy about his having the disease but possibly more than unhappy about the effect his behaviour is having - he can also factor in stress and worry which he could ameliorate by being more mature in his approach to the disease and self-aware about the effect on you all due to his selfishness.

    Chronically ill people can be very selfish at times due to the demands of their conditions, living with on-going pain, tiredness, a strict medical regimen, lack of energy and the general sense of 'missing out' on life is tough, especially when young, but he does need to shift his perspective and hopefully you have shocked him into making an attempt to do just that. Please let us know how things progress. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    You could be right that you did the wrong thing but equally it might have been exactly what he needed to jolt him out of his rut. If he is depressed about his whole situation then he might well have been so wrapped up in himself he was blissfully unaware of the impact on others.

    I hope the appointment will be made today. If he is to take more responsibility for himself and if he has a good relationship with his sister, it might be helpful to let them get on with things and for him not to feel that either he or she is reporting back to you all the time. Easier said than done of course.

    I hope this will prove a turning point for you all.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • darcymay35darcymay35 Posts: 2
    edited 30. Nov -1, 00:00
    Hi I am going through exactly the same a yourself my daughter is 13 and she had arthritis in every joint of her body since the age of 3 , she is so depressed with this awful disease and hasn't been to school for 12months now ! , the arthritis has completely destroyed her hips and its extremely painful for her to walk , she has had every treatment and medication that is out there and we still can get it under control, I am so worried about what her future will be like and how she is going to cope , she is so unhappy and stressed and there's nothing I can do , any advice?
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