Take deep breaths and count to 10

We all know the you're too young to have RA or you must be faking look, well this evening it came from the least expected person my mum.

I understand it must be hard for her having to look after me, I'm 23 she must of thought her feeding days were over. My auntie volunteered to pick me up and take me to her house for lunch one day next week too which I was quite excited. Haven't been out I'm days it's the small things that count :-) my mums response was I dont want you sitting around for much longer you better get back to work! I was a bit shocked and snapped back is that what you think I'm doing having a summer holiday. (she helped me walk around the garden earlier which was extremely painful and didn't show any hope of beating usain bolt) my mum just rolled her eyes with the you must be faking look we all see. I no she comes to the hospital so nos I'm not but I can't help feeling she thinks I'm dragging it out. Of course I want to go to work and have a life. Another thing is her hesitance to help me buy a cheap wheelchair so I can at least be pushed around the park. Her response is just are u sure you need one I don't see the point. The point is I'm stuck indoors 24/7.

I hope you guys don't think omg all that girl does is moan but is my little release place. I am really grateful for all your support.

Count to 10............1............2..............9............ 12

:-)

11 Replies

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  • ooh you poor thing. im off to bed.. you can have as much support and sympathy is you like on here. will message you tomorrow. xx

  • I know this pattern, that nearest and dearest seem to understand and then suddenly do something that makes you realise they don't, or perhaps are in denial? Your mum must be finding it hard to accept as you say. Sometimes I think it'd help to have a discussion with a medic or someone about what you may need in terms of help. RA is so difficult to predict, one of my students, an Australian doctor had juvenile arthritis and he was very active, cycled etc. He was in remission.

    You don't say anything about your treatment, or how long youve had ra, but you should be able to get better intervention so that you're not hobbling and in constant pain. Lots of advice and experience on this site

  • Hi Marnie

    Your Mum may be scared. Some people close to us can't cope, so end up saying stupid things.

    You say your new to RA on your profile. In my experience (13yrs) it does take time to get the medication right.

    I was housebound in the early days, the stairs were like Mount Everest!

    You will find lots of support on here.

  • Marnie,

    sadly your not alone in that. its an age mentality,whereby people just got on with it. As they don't suffer with it they don't understand what your going through. I know this sounds trite, but be thankful your mum isn't suffering with it. Ask yourself would she be able to cope. I know that she is worried sick about you and she doesn't know what to do and it is the only way she can cope. Try not to be too hard on her, maybe she's having a bad day herself.

    When my kids are having a bad day i have to say i don't have a lot of sympathy with them,i tell them if they had what i had they would have something to moan about.

    See if your mum could talk to someone about your condition and get help to understand what it is your going through. I know this is not much help to you, but we on this site do know how you feel and i know we will all be sending thoughts to you and your mum.

    Kind regards,

    Sylvia. xx

  • Poor, poor you Marrie you are not moaning just wailing with understandable despair. I know as a mother of three teenagers (one is only 4 years younger than you) I'm often a bit hard on them when they are down - it's worry of course not cynicism - but it doesn't help you when you are on the receiving end of what feels like gross lack of sympathy and maternal compassion? I know this because as a daughter my mum (now dead and gone) always used to almost blame me for the things that were happening and beyond my control? I try not to do this but I think we are almost programmed to follow suit and have to make a real mental effort not to mimic what my mother did to me

    Sometimes I think that since my mum died 18 months ago, although I miss her terribly, I also now feel free to suffer pain and anxiety without her joining in and making all this into her drama too - increasing my stress? Sounds a bit harsh I know but it's just how it is. I do hope I won't burden my boys in this way if they do get really sick but if I do let my fear turn into something brisk and unkind like your mum is doing then you should at least know it undoubtedly comes from great love - even if this is totally misguided when all you want from her is compassion!

    As we get older we want our children to be able to stand on their own two feet - both literally and metaphorically. It's not just selfish but it's natural that as we become increasingly unwell and infirm and approach our final years we need to feel our children are independent for their sake as much as ours. Not much consolation but that's probably what's behind her unkindness. But have a big (careful) cyber hug from me because I would have loved to have a daughter to look after who needed me! Have you got anyone else, such as aunties etc who you can turn to for help and support right now?

    Tilda x

  • Hi Marnie

    I felt such awful sadness when I read your post.

    I might be an idea to concentrate on how you can help yourself, and not get wrapped up in trying to make her understand. I think we all, at first, try and make others understand how we weel, but it is so difficult to come to terms with it yourself anyway. Your mum will get there, given time.

    I used to get so depressed because it was obvious my daughter didn;t understand the disease. In actual fact she did want to, she wanted a normal mum. You situation is the same, but in reverse!

    If your mum is anything like me she is at a point when she thinks she can let go and you can go off and stand on your own two feet. It looks like this might be a bit delayed because of your diagnosis. I have felt this with my own daughter, who has other probs which have delayed what you might call her "flying the nest". It is a bit frustrating at times.

    Mum loves you and wants the best for you never forget that.

    Like others have said, seek as much advice and support from whoever is there to help you. Have you been to the Occupational therapist or Physio therapist. If not, take your Mum with you and let her "eavesdrop" on the session. She will learn so much about the disease, you and how it can affect people.

    My daughter eventually "saw the light" about me and RA when she got on laptop when I was away and saw this website! We had a good old heart to heart when I got back and she was so upset at the thought of how rotten it can be for me and of course she wants me to be around forever and she hates the thought of not being around one day - so she was in denial.

    We are all here to listen to you moan and groaning, don;t worry about that. And of course there is lots of practical advice and help through this site too.

    Make good use of your RA nurse, GP and cons for support, and always tell them like it is emotionally as well as physically.

    Good luck and keep in touch

    Julie xxx

  • Thank u everybody I had a little cry reading your responses.

    This is all new to my mum as until last September I lived with my boyfriend and had done so for a couple of years, a story for another day. I guess she hasn't seen it develop and how frequently I'm crippled in pain. also he used to do everything for me that she now does so I guess she didnt see what was going on behind closed doors.

    I'm not on any medication right now as my White blood cells went down to 0.2. RA has only be confirmed about 8 months so I'm still trying to find one that doesn't make me sick or like a giant rash. Hopefully starting anti tnfs next week.

    Everybody talks about an RA nurse, I don't think I have one??? Everytime I go ton the hospital (which is weekly ATM) I see th consultant. Whats the difference??

    Marnie

    Xx

  • Hi Marnie. I was so sorry to read your post, so sad. But you've had some wise words from mums on here so it will help to have their view point on it. This site is here for you to let off steam so carry on doing so! You should have been issued with the details of your RA nurse, obvioulsy you have not been so ask at your next appointment. Basically they will go through everything with you; I found that I could ask mine loads of silly questions that I did not feel I could to the consultant. You wil be given their contact details so you can get in touch with them in the first instance if you have a bad falir or any worries and they will speak to the consultant and then get back in touch with you.

    Take care

    Mel

  • Hi Marnie,

    Sorry to hear that things are like this at the moment:-( You will find a drug that helps and regain some independence - it just takes time. So hang on in there and use this site and the support on it as often as you need too.

    Hugs,

    Cece x

  • Marnie.

    So sorry to hear you are feeling so bad. Im puzzled by your mum's reaction about your condition. could it be that she is denial? as she doesnt want to see her daughter so poorly.. my mum was a bit the opposite I had a really bad spell of mobiltiy problems. and used two sticks to try and get around.. my mum suggested I got a wheeled trolley like the other 70s use!! my pride/vanity sain no.. and If I has been much worse she would have put me in a wheel chair,.

    I can now with drugs and hydrotherapy walk really well with one stick... not huge distances.. but its not bad.. dont give up.. push for physio,hydro, all the drugs you can get. to help.. the drugs can take up to three./ four months to provide benefit.

    I think you should contact NRAS for some leaflets for you and your mum to read.. you will have better times than this. I am on my third lot of medication, having gained some benefit./mobiltiy improvement now . after week 17

  • I've just read that you're starting anti tnf and want you to know that it can make a huge difference. It has for me, the disease hasn't gone away but I can function autonomously and do a lot of things I want to do . I hope it'll be even better for you.

    My mother had ra and I know from her experience that treatment has greatly improved since then. It didn't necessarily help her support me but I have found support from other sources. Sometimes having a group of friends can help and I've also seen a counsellor at different points over the 10 years I've had ra and that might also help

    Xx cathie

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