When does it stop!!!!

duvarayi
duvarayi Member Posts: 68
edited 16. Jul 2012, 07:55 in Living with Arthritis archive
Hello

May I say hi to everyone. I've not been here in months, my laptop hasn't been working and I can't use the computer as I can't sit for long. That became faulty so had to have it repaired and the laptop benefited. My health has been going down and I don't know what to do now. The report says I have possible sero negative arthritis and mechanical back.

My hands look odd as the bumpy things in both sides are not going away since they came out in September, they feel soft as if there is liquid inside when I try to make a fist and are hard when hands are flat. The xray showed a shadow in my spine on top of the degeneration so I don't know if the nurse will give me the results of the xray and bone scan I had in May when I go see her next month. My hands especially my right is so so painful even as I'm typing now. I've been to the dentist as my jaws started being painful and then realised that I clench my teeth. He made me a brace to wear and told me it's because of the arthritis pain.

I cry myself senseless as I cannot even go out of the house when I want. We live in a first floor flat and I've lost count of the number of times I've fallen while my daughter is with me. Mylife has changed so much so I even need help to use the loo. My kids are all I have as my family is overseas. The man I thought I had disappeared in October and when he came to see me last month his jaw was on the floor when he saw me. He told me he never believed me when I sais I was not well and only came over because a friend of his told him he saw me in a wheelchair. I met him on our way from an appointment with the mental health.

My eldest son who is 12 sleeps with me because he refuses to let me beon my own. When I go to the loo he wakes up to help me as I need help almost all the time. I've not had a day without pain since I started being unwell in August last year. I take oramorph, tramadol and paracetamol for pain. I was prescribed hydroxychloroquine and had headaches like I was going to die, could not stand noise and felt like my head was going to explode and could not stand light with nausea on top so called the nurse line and was told to stop it. I am suppose to start methotrexate next month and I've now put all my hopes on it working as I am so so fed up of being sick day in and day out. I sometimes just become weak and like I'm going to pass out, hands will shake and sweat then will just fall asleep and will be ok when I wake up. This happens while I'm sitting and only once while I was standing and fell and the crutches could not break my fall.

We were saving for a dishwasher or a mobility aid or a cheap holiday and had £600 saved and now my daughter as it was in her account went to withdraw it and she has lost it all. I have cried non stop as she has been helping us so much by doing all the things I'm suppose to be doing and I mean without her we'd hardly have a cooked meal, I won't be able to go to appointments, I mean everything would not be possible. She is 17 to be 18 in September, in college and is. Does volunteer work which she's been doing since she was 12 years.

I know she is depressed herself and we fight and I don't blame her. I've taken over her life, she has no time for herself to have fun with friends. Where will we get that money again? I have no parents or siblings I can ask to help us and that means bye to those until maybe next year or so. How do I leave her be herself without thinking about things she has to do.

If I am sitting down had it not been a wheelchair all people can see is my round face and a fat lady if I can call myself that. I despise having to get up as the no one can doubt that there is something wrong with me. I can just about shuffle with the help of the crutches. I can't stand for long and can't sit for long and I'm in pain even while lying down. I have to put cushions in between my knees and ankles and sleep on my left side as the right is painful. Writing, typing is painful and my right hands stiffens and swells and the wrists are painful.

I can go for 3 days without closing my eyes to sleep. I've not had my hair washed and locked in over a year and it's so filthy I'm thinking of just shaving it off. I've missed my youngest's school activities for the whole of his school year. I've only been out once for the boys birthday meal out as they are both born in April but had to postpone it that month as I was so swollen and exhausted from doing nothing mind so went out in May. Going out even for an hour leaves me so so exhausted.

I'm ever so sorry for rambling. What I would like to know is when does this exhaustion and never ending pain I've been feeling for almost a year ever stop? When does life start resembling normal again? When will I start dreaming arthritis body and not walking and running doing this and that like I used to, do house cleaning, cooking for my children?

I'm thinking of going back home but worried about my children's education. I need my mum's hug and just those little words that say don't worry or please don't cry as I do this over the phone. My kids are all I have and I want to get better for them. I've had times when I felt like I would be better if I slept and not wake up.

I'm still waiting for counselling and my daughter started hers last friday.

Comments

  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello sounds like you have a lot to cope with and arthritis is just the tip of the iceburg. The best advice i could give to you is contact your local Social Services Department and tell them what you have told us.
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • Harlansmummy
    Harlansmummy Member Posts: 89
    edited 30. Nov -1, 00:00
    Colin1 wrote:
    Hello sounds like you have a lot to cope with and arthritis is just the tip of the iceburg. The best advice i could give to you is contact your local Social Services Department and tell them what you have told us.
    Colin

    Great advice imo, surely you are entitled to more support!
    Twenty-something mother, home educating my wonderful son and currently TTC.

    My particular flavour of arthritis is yet to be confirmed
  • earthspirit
    earthspirit Bots Posts: 278
    edited 30. Nov -1, 00:00
    i would agree totally with colin - there is so much help out there that would be freely available to you, different housing, mobility aids, carer to wash you hair and help you wash, someone to help with shopping etc. most councils will supply this for no charge at all and this could make so much difference to your life.

    you might be entiteld to benefits you are not claiming too and sure that social services will send someone round to help you with forms etc

    your disease is obviously highly active and i have disease of severe activity and dont take RA meds but in your case it really does sound like you need some help, if even from steroid jabs to help any swollen joints.

    i think putting the care in place with make a huge difference and take the strain and pressure off your children. of course they too have a right to go to school and have a life and be supporting in helping to care for you. seems like you have taken some steps to get help but in your phsyical condition i imagine even things like making a phone call are painful and difficult.

    managing the pain is the main secret to dealing with this condition and sounds like you need help urgently.

    let us know how things go - i know exactly how this is feeling for you and you do need a great deal of support. promise that first thing tomorrow you will ring adult social services and tell them you need help urgently and can they call out to visit you.
  • duvarayi
    duvarayi Member Posts: 68
    edited 30. Nov -1, 00:00
    Social Services gave me help to have a carer come help me with personal care and basic cleaning which is not proper as I would have done it. My hair is dreadlocks and needs proper wash on the saloon sink and relocked. The carer won't be able to wash it.

    I've told the social worker about my fights with my daughter and I asked for help even if it's a letter to help my mum come over and give my daughter a break. She normally comes but has not been since the visa requirement has been introduced, now needs a visa to come over. She didn't need it before.

    The OT gave me a list of things that may help me and told me the council doesn't provide them anymore. Bath lift and grab rails were what I got. She wrote a letter to housing to be rehoused and am still waiting.

    I asked for help apply for a grant that helps with scooter or wheelchair but referral from social worker and when I called to ask who my social worker was, was told I wasn't allocated one.

    I have been asking for help over and over again.

    The rheumatologist I have does not explain anything to me. Doesn't tell me what I have and saw this on the reports. After the first xray he told me there was nothing wrong with me and then told me to go and do eye test to start the hydroxychloroquine. I was shocked when I got the report stating I have possible sero negative arthritis and when I went to see the nurse I told her I don't know what's wrong with me and she told me I have the possible sero negative.

    I asked the rheumatologist to help me manage the pain and he just told me to loose weight. I was speechless and was in tears when I got home and was asking myself if he means to tell me people who in healthy weight don't get all the pains I have? I wondered what he says to them.

    I honestly have been asking for help but I am giving up now.
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    in a way he is right loosing weight does help the joints but you need to see your doc for pain meds if the meds work it should help i feel for your children because you are not getting the help you need not having reached this stage i do not know who you contact but try D I A L or
    C A B with luck they might help you with who and where the help is and how to get different housing.
    we are here to talk to or call the help lines they are very good and might have some of the answers for you. stay strong for you family why can your mum not get a visa??? i know she will have to apply but if she been here before and gone home it should be no problem.
    keep posting and try to keep joints moveing non weight bearing is ok just stretch and move what you can to keep them moveing. if you have swelling try ice wrapped in towel for 10 min. and then wheat bag. good luck val
    val
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Please don’t give up, duvarayi. There is life after a diagnosis of arthritis and it can be good. But you are not in a good place right now. I hope the methotrexate will help you as it has helped me for over ten years. If not, another DMARD will be prescribed until they get the combination that is right for you. You ask ‘when does this exhaustion and never ending pain I've been feeling for almost a year ever stop? When does life start resembling normal again?’ You will feel much better once you are on meds that work for you. However, ‘normal’ will be different. Arthritis involves constant changes and adapting to them.

    I’m sorry the OT only gave you a bath lift and rails. It is not right that your 12 yr old son has to sleep with you and take you to the loo. Have you not been given a raised toilet seat? Would a zimmer frame make you steadier than crutches? That way you would be able to go to the loo independently. And your son would be able to sleep in his own room. Perhaps you could have a bell to ring for emergencies?

    I’m not quite sure whether or not you are using the carer that Social Services gave you as you say it ‘isn’t proper’. If not, please do use the carer. It is proper and necessary and, if the carer can’t wash your hair, perhaps it would be better to have it cut short rather than leave it unwashed.

    You write ‘I despise having to get up as the no one can doubt that there is something wrong with me.’ Duvarayi, whether I’m sitting or standing, no-one can doubt there is something very wrong with me but so what? It’s a disease, not a moral defect. It’s not something to be ashamed of.

    I think maybe you need to try to sort out some things with your Social Worker but, as Val says, talking to our Helplines would probably be a good place to start. I’m sure they will help and I hope you will contact them.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    If you are not getting decent support from social services, you can contact your local councillor (look on your council's website to find out how to do that) or even your MP. It sounds as if you need a proper assessment of your needs and an action plan put into place.

    There are things like cooking aids, something to raise the height of your toilet seat, things to help you get in and out of bed and you should be able to get them. If social services can't provide them, contact CAB as there may well be a charity that will help you.
    Some councils provide an individual budget for care so you can spend the money on what you need. It's worth asking whether yours does.

    I have sero negative arthritis and it was quite a while before I found the drugs that helped but, in the meantime, you should be able to get short term relief from steroids. If your consultant isn't helpful, ask to be referred to another one. Yes, losing weight is all very well but it is very hard when you can't exercise and are stuck at home all day.

    Methotrexate might well work for you. If it doesn't, you are able to ask for anti tnfs as you will have tried two dmards. I know it seems hopeless at this point as I felt exactly the same myself. However, I've just started a drug that helps and I can feel some kind of normality coming back again.

    As others have said, don't give up. You will get lots of support and good advice on here. We've all been there so know how difficult it is.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Duvarayi, I know you've hit rock bottom there's no hiding that, Have you called the AC helpline? They are brill and could help you. You need to get your G.P on side if you don't feel happy with your current G.P change to another you need to sit with your G.P and tell them you can't put any more presure on your children. Do you have any close friends who come round and see you? I know you can't get any lower than you feel now but you've done the best thing coming to us, we can be your friends you can let all your worries and you can talk away all you want. You will get all the support you want here. We will suggest as best as we can but you need the main help from social services and your g.p. When ever you want to get anything off your chest you come and post on here. And I hope you turn a corner and see a positive time for your self now you've joined here.
  • duvarayi
    duvarayi Member Posts: 68
    edited 30. Nov -1, 00:00
    Thank you all for your kind words and advice. They mean the world to me more than you will ever know or understand. I'm sorry I am writing evrything that is going through my mind. I hope you don't mind.

    My mood is so so bad and I do take antidepressants so I don't know if they are helping or not. My GP has been helpful and I told him about my dissatisfaction with my rheumatologist. He then told me that he can refer me to another hospital but then the whole process will start afresh. In my small mind I thought it will be a matter of transferring my file and be taken from there. He said to think about it and get back to him if I want to go ahead. When I went to my last appointment in May I then saw the main consultant and she went back to the xray results and I showed me the shadow in my spine and said to go for further xrays and the bone scan. This left me wondering why the other doctor never saw it.

    I know I am overweight but I can eat all the healthy food and as long as I don't move I don't loose weight. I was walking everywhere before I became ill and now I can just manage the loo and bathroom. I go for weeks without going to the other rooms. When my kids ask me to go watch telly and I agree, the joy they have as they call this rare occurrence my day out even though I take over a whole sofa as I have to lie down.

    The pain is everywhere, everytime. Just putting my foot down is painful and it feels like this disease is settling in as now my knees are more painful than before even while they are straight on the bed and not only when I'm the sitting position.

    My council, what can I say, in November when I was made aware I have arthritis I bought a cooker as we didn't have it because we were doing the house, about to do the kitchen so we were going to buy it after we'd finnished. Anyways when engineer came to connect it he said the connecting pipe is not right under current regulations and to contact council to come fix it. To cut a long story, we still have not have the cooker connected and council lady told me the mini oven we are using is a cooker so they won't be fixing the gas inlet pipe. I don't know how long I still have to wait for them to rehouse us.

    I look at the four walls of my bedroom day in and day out it's like a prison. I was always outside everyday and now stuck indoors. I hate even the mere fact I have to be pushed in a wheelchair to go out and has to be planned in advance and sometimes have to cancel when I'm too bad. I can't just go out as and when I want. This is no life and I really need their help but am not getting it. That's why I'm hoping and praying that the methotrexate works.

    Talking about friends, arthritis is old people's thing is what I hear. You are too young to be like I am and some don't even call so have vanished. Some say it's the work of the devil and leave me fuming. I stopped being bothered as I figured I have enough stressing me already so they can just go to hell.

    The zimmer I was offered and chose the crutches because there is not enough space in the flat as a result I use one crutch indoors. I also can't take a zimmer with me when going to appointments. Last year GP did wheelchair referral and got turned down as they said they give to permanently disabled people. New GP and dietician did another wheelchair referral to a different place and got a form to fill so now waiting to hear what will come out of it. I cannot self propel at the moment due to my faulty painful right shoulder and the arthritis in my hands. I cannot go to swimming as I can only borrow wheelchair for up to three days in a week and book it two days in advance.

    If you've got this far all I can say is thank you for reading as you have taken your precious time to listen to my hopeless life if I can call it that.

    Babs xxxx