Struggling!

I joined this board when I was first diagnosed a few months ago. I rang the NRAS helpline and arranged for a volunteer to ring me and started doing drug research. However I ultimately realised it was all too much to soon! I had not accepted the RA and reading the boards was a bit too overwhelming!

Now I think maybe I'm coming to terms with my diagnosis, I still feel angry about it and have a bit of a why me attitude towards it but I'm trying to deal with these feelings, so I'm guessing now I'm looking for some support and hope!

I'm 27 and my little girl is ten months old, my rheumatologist thinks my pregnancy triggered the RA as before I was relatively healthy apart from frequent chest infections.

I am on Sulfasalazine and still breastfeeding. I really don't feel like it is working! My fingers lock in the morning and the inflammation and pain in my wrists is horrendous! I feel like I'm going round in circles between my GP and rheumatologist and it's exhausting! has any one got any tips on how to care for a young baby when it feels like your hands don't work! Lol!

My mum keeps going on about getting outside help to give me a break as my partner works full time. I'm really against this idea, maybe because of my pride but I just feel I want to be the one to do everything for Martha as the RA already makes me feel inadequate. I did think about giving up the breast feeding incase there are other treatments that will work better but I'm scared I won't be able to prepare bottles etc as I can't unscrew them!

Sorry this post is a little bit babbly! Think I've got so many struggles and questions it's hard to try and write coherently.

Sarah

10 Replies

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  • So sorry to hear how you are feeling. RD is just so difficult without having a baby to cope with too. I know because I too was in that situation 21 years ago. Although I did have the RD before I got pregnant so it did mean that everything I purchased for when my daughter arrived did seem okay. Obviously it wasn't. I don't want this to be a sad post because Sara is now 21 and training to be a doctor for which I am very proud. I did manage to cope with bottles it was the undoing of nappies and vests that were my bug bear oh and night feeds!! If I had to get up in the night I used to go downstairs on my bottom oh the fun I had. I used to look for clothes that could pull on and leave some of the tab on the nappies to try and pull on. It was just about finding ways round the usual tasks to suit me. All I can say is it does get easier and try and stay cheerful. The information available now is soo much more than then and just talk to people . Do not be afraid to ask for help x

  • Hi little-hubb. So sorry to hear you are strugglung so much. X yes its very hard to accept this kind of devastating news that you have ra. I can remember when I was first told I was a diabetic I had the same reaction 15 years ago I could not accept it either...and still dont then to get ra and oa diagnosed 18 mths ago like you I felt very much like 'why me' I was/am constantly dropping things and cannot unscrew things etc ect? My son and his wife have just had a baby boy and I was really upset that I thought they would not let me hold him....in case I dropped him, so far so good tho!!

    You have a lovely 10mth old and yes this disease alone makes you fatigued and feeling useless, let alone still breastfeeding and soon she will be on her toes!! My daughter in law has a very good machine for bottled milk from tommy tippee I think. You just fill one side with water switch on and within seconds really ready to use. Bottle under press button and instant hot wa

    ter. Add milk and back under for cold water. Perfectly made ready to drink at the right temperature. Great for me to use too. Im in full favour of breast

    feeding but at 10 months weening will by now be under way so bottles will not hurt at this stage especially as she has teeth lol!

    Do you have a Mother/ in law or sibling who can help with a few hours respite or mother and toddler group where the baby can roll around without you? Whilst you have a break and natter to other mums, some if which may just be in your position. At 27 its a long road for you so I really do hope that you find some answers also as your body settles back down from having your baby and your hormones return to normal you may find the ra goes into remission? .......truely hope so. Lots if luck and best wishes to you.....big hugs xxx

  • Hi Sarah,

    Sorry to hear that life is so rough for you right now.

    I can offer little input about meds as I am also a newbie but the best thing I did re my emotional response to diagnosis and the RA was to ask to be referred to a counsellor. I did this because I also suffer from depression and wanted to avoid triggering an 'episode'. The counselling allows me to say exactly how it is with no need to hold back or justify my anger, sadness and pure frustration to others who are gallantly trying to 'fix' it a make things alright for me (their efforts are truly appreciated but can sometimes be draining). It might be worth finding yourself similar support to take some of the emotional strain out of your situation leaving you more 'space' to cope with the day to day task of living with a youngster in tow.... God only knows how you parents deal with this disease and family life at the same time - I hope things start to improve for you soon.

    Best wishes

    Ali

  • Hi ya,

    i was exactly the same 2 yrs ago, i had a 3 year old and a 6month old. It is tough, and i found it takes ages to accept it, I'm still working on that now!

    The best tips I can give is try not to be hard on yourself, you are with your little one shes doing fine and she isn't suffering because if you! ( still have to tell myself this regularly when i cant go to the park cause of my fatigue, or cant play horsey because of my hip pain) you just adapt and do a puzzle together for example. Its being with your children, loving them and caring fir them and yourself that counts.

    I too didn't want any help at first, its who I am to just get on with it, not give in, it'll be fine. But by carrying in, it makes the up and down's worse.

    In the end my mum paid for a cleaner every other week, and my mum in law buys me an ironing lady every 2wks. Having time and effort not wasted on the house stuff gave me more energy reserves for my kiddies.

    I know exactly how you feel about being angry, in fact Ive just started seeing a counsellor to help with the 'acceptance' bit.

    practical tips I found, use a pillow under your baby to breast feed, as holding a pillow, not your babies head cuts down on wrist pain

    .

    make sure everything you can is at the right height to prevent bending etc.

    go through different happy brands until you find the easiest on your fingers.

    wearing gloves at night stopped my hands hurting when you have to get up quickly in the night.

    Good luck with it all, ut takes time for the right treatment, but it will come, (never quick enough) but you are in the worst bit right now and it will get better!

    Take care

    Penny

  • Hi there Little_hub!

    With RD, everything changes - and often for the better! Over time your disease may be much better controlled. Therefore I think it's a good idea to act on what is happening in the here and now. I think getting help when you need it is a proactive thing to do, though it can be a blow to your self-esteem if you let it.

    Just imagine you're a kind of PA for someone with RA who has a 10 month old baby .... and you suggest that she employ someone to do housework or whatever. You then find the right person, make a careful plan of what needs doing ... and so on. In that situation you'd feel you'd done a damn good job! So why is it that we so easily feel diminished by sorting that kind of thing for ourselves?

    I think you've done so well to breast-feed your daughter so long. That's just such a wonderful thing to do. With the disease you've got you have to keep it real & that includes acknowledging your own worth fully. And at the same time acknowledge your limitations and find ways round 'em. And simultaneously believe and work towards reducing those limitations & feeling loads better! Just as well we can multi-task, eh?!

  • Hi - I think everyone has said it all really so I just wanted to welcome you here. Sorry you have had to find this place but there are others in your situation here and the support this will provide you is really important.

    I still haven't accepted that I have RA over three years into it - largely because mine isn't following a classic pattern at all. It is a bit like enrolling on the OU to take a degree in immunology though - with only a few good hours a day sometimes to get everything else done - whether that is work or looking after a baby.

    You might want to look into Hydroxichloraquine as a possible drug you could add with the Sulfa if your consultant suggests it? It is the least toxic of the DMARDs and can work very well for pain for some.

    This could mean you didn't have to worry about drugs that could impact on future family planning? I advise you to just take the research a step at a time. Take care.

  • Whatever age you get this disease it is daunting and coping with a baby only adds to the mix. I suggest you talk to your Rheumatology team regarding changing meds with a view to switching to bottle feeding before starting - you have done really well to feed this long. I had to do this with my last child at 4 months and hated having to but at times your needs have to come first - many professionals say it is easier if somebody else does the feeding to get the baby used to it but mine refused and I had to do it. Any new meds can take between 3-12 weeks to kick in so maybe a steroid injection could be an option until they do which would hopefully give you some relief. Although finding the right mix of medication to suit you may take some time but once settled things should be better - I can't say normal but you should find a 'normal' for you. Your baby is too young to know any different. My older children annoy my husband as they have lived with it all their lives and think nothing of it although it was a lot milder then than now. At night I used to use a cool box and bottle warmer and take upstairs with me so I did not have to come down and I had upstairs and downstairs nappy changing stuff - I used to do it on my lap. I found dungaree type trousers easier as I could grab hold at the back when they were crawling away and easier to handle them as they did not come apart in the middle when I picked them up. Farm

  • Hello there, I'm sorry you had to join this RA forum from the disease point of view, but for support it is wonderful! Acceptance is hard and some denial is natural. You have done very well feeding your little one for so long and I think if you both find it satisfying and comforting, then do what feels right for you. Ask your doctor about the possibility of a steroid injection to help you through the bad flare. I was diagnosed with RA post-natally too 42 years ago and it was a very hard time even though I was so happy to be a new Mum. My milk disappeared with the flare which was sad, but I had gold injections and did improve. Had to wait 6 months off gold to conceive again and went on to have 2 more children and breast fed them for a year each (just kept the evening feed on). For me the second and third pregnancies gave good protection against the RA and the breastfeeding to some extent too, but it did return and I'm told it is an aggressive form. Some good tips for you practically above, are you in touch with an OT and health visitor? I only had help from family in emergencies like surgery, but friends were great and we are still in touch after all these years, though geographically far apart. Basically, it does get easier as the little ones get bigger and more independent. My 3 say they didn't miss out on anything and that I was always there for them and for us they give enormous joy and love - and grandchildren. Accept any practical help offered especially for the mundane heavy tasks and enjoy your little one's cuddle times with books and DVDs - they are very special and give you a chance to rest. Good luck and let us know how you are getting on.

  • I would also suggest it's time to hit the RA more aggressively. A combination of drugs can do just that and an interim steroid injection might well give you an initial boost to tide you over. You have done really well with the breast feeding but now it's time to get yourself into better shape, after all that's going to benefit your baby the most for you will be able to do more once the drugs are working.

    Accept any help you can get at this stage for resting as much as possible will give the drugs a chance to kick in and do their work. Best wishes. Jude

  • Hi Sarah

    Sorry to hear you are struggling. I had my RA when I had my son ( now 10) I tried to track down an obstetric occupational therapist but only one then wAs in London ( I'm up North) but we chatted on the phone. I found useful;

    Changing station upstairs and down.

    Use the back of your arm to lift Marthas legs to wipe bottom not your sore fingers.

    Wear wrist splints available for OT. I had 2 pairs so I could wash them as my son once puked on them.

    Check out hip seats from perfectly happy people online. Mine was a godsend.

    Buy trousers with elastic waists and pyjamas rather than sleep suits. I found press studs agony.

    Try to pace yourself. If you have an appointment or trip out pencil in some rest time. And don't feel guilty about putting your feet up.

    I agree with everyone else that now is the time to put yourself first and get some more effective treatment.

    Healthy mum = happy Martha.

    Take care KiKi x

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