Feeling like a failure

I was diagnosed with RA in September of last year and I'm still really struggling to accept it. Im struggling with how much it affects my ability to be a mum at times. I had a brief but beautiful spell of a pain free body because I was on a higher dosage of prednisolene but since reducing it I have flared up so bad I can't walk properly. The backs of my feet reaalt hurt and I'm sure I'm damaging my knee by walking to compensate for the pain and my wrists kill. Any other mums struggle with the guilt? I feel terrible for my little man. I can't play football, I can't chase him, I can't always pick him up when he wants to be lazy, I can't do so much I see other mums of little ones do. I'm 25 years old and my little mans 2. I feel so guilty he has to have the mum who can't walk properly, who can't play properly.

20 Replies

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  • Oh hun, your post just breaks my heart.

    You sound like a loving mom who cherishes her little man. How wonderful all the love he gets from you. He is a lucky little boy <3 . I can actually feel the love you have for him by the way you write. He too feels your love so please don't worry.

    Please stop feeling guilty about the things you can not do with him now. Focus on the things you can do with him, like cuddling and reading stories. You and your sons relationship will be strong.

    Sending you and your little man all my love,

    Sue

  • Couldn't agree more.My children always loved me reading to them.Just being there to talk to them.I'm sure there ideas and suggestions would be something just as good as football and running around after them.

    Best wishes

    Jan

  • Hi BundleRundle, I understand what you are going through. I too had suffered like you, only I was not diagnosed properly. But I have found a way to reduce inflammation. Cut out sugar and gluten totally from your diet. You can get your body's need of sugar from fruits. Switch to rice, this reduced my inflammation. I am on such a diet for the past 6 months, and I have very mild pain. My Rheumatoid Factor has come down to 60 from 150. I don't take any medicine for RA , as I have another auto immune disorder , ITP , that reduces my platelets. Please try this diet as our diet plays a big role in any health issue, particularly , RA. I am not saying you should stop your meds altogether , but an anti inflammation diet will help you a lot, as you are only 25.

    Hope this was of some help to you.

  • Aww bless you.You really need something to help replace the steroids so the gradual reduction is not so severe.You sound such a super mum

  • I completely sympathize. I lived in pain with ra for 8 years, doing as my doctor instructed and taking prednisone, various dmards, and pain medication, which only partially helped and caused myriad other issues including osteoporosis. for the past 18 months, i have taken matters in my own hands, eliminating sugar, gluten, dairy, eating organic, taking anti-inflammatory supplements, having my amalgam dental fillings removed by a biologic dentist and replaced with safer materials, very gradually weaning off all my medications (one by one), and starting low dose naltrexone. i'm largely pain-free now and feel like myself again. everyone's journey is different, but diet and other changes can help a lot. do some research and find a doctor you can work with. it took me a year and a half to figure out what works for me. it was difficult at the time and i didn't know if i'd have success, but i did. i'm sure you can make some changes that can work for you. have hope. trust yourself. you can start modifying your diet today. i wish you all the best!

  • Hi where do you get all this information from please I have been diagnosed with inflammatory arthiritus and just been put on medication. I want to help myself I hate taking medication. Thank you

  • my understanding is "inflammatory arthritis" encompasses a number of diseases including rheumatoid arthritis (ra), which is what i have, and other diseases (lupus, ibd, etc.). your doctor should be able to give you more specific information re your disease. if you have an auto-immune disease, like ra, i understand that changes to diet and lifestyle may improve, but not cure, the condition. i'm not a physician and i can only speak to what has worked for me. the following is what worked for me.

    to gather some pertinent info, search for "anti-inflammatory diets" and your specific disease name. just read many articles, books, reviews, comments by others and start to sort through info. there's a lot of junk out there with the good information. you'll need to start to sort through it. i started with well known authorities like mercola and weil (but i don't agree with everything they propose either) and worked from there.

    amy myers, md's book "the autoimmune solution" gives some good diet info. i used that book and other sourrces to develop the diet i followed. there are many other books out there (do a search or ask your librarian for help). the myer's diet was too rigid for me to follow completely but, i followed much of it; helped me and reduced inflammation and pain. i was very strict for 18 months, eliminating all refined sugar, all gluten, all dairy, all processed food (snacks, deli meats, etc.), most grains including breads of all kinds (i allowed myself organic non-gmo brown rice), bad fats, no caffeine, and tap water. i drink little alcoholic beverages. I eat organic -- lots of fruit and wild salmon, vegetables, good fats (olive and coconut), brown rice, aloe juice, and bottled water only. certain foods and supplements are anti-inflammatory but you'll need to find what works for you (i take fish oil, astaxanthin, msm, etc). the diet was boring and hard to follow; the improvement was very gradual but i stuck with it and ultimately had good results -- when combined with moderate exercise, rest, replacement of dental amalgam fillings. Only when my condition was greatly improved was i able to wean off the pain meds and dmards and start ldn therapy. some other plan and/or order may work for you.

    a good places to start for info on low dose naltrexone (ldn) therapy: lowdosenaltrexone.org

    articles.mercola.com/sites/...

    video by pioneer in area, dr. bihari:

    if you can find a good functional or integrative medicine physician to help you that would be wonderful. my doctors are pretty traditional and couldn't even give me much diet advice. i stumbled on ldn after trying many other things. it doesn't work for everyone but i wanted to try it. happily, my doctor allowed me to do it as i refused to move from dmards (which were of limited use to me) to biologics as i felt they were too risky for me. ldn is working for me (4 months with little joint pain; joint swelling virtually eliminated)

    it takes a while to gather info and sort through it -- but try. at the very least, you'll know more about what's happening to your body and can better understand options presented to you by your physicians. again, i can only tell you what worked for me; i can't tell you what will be beneficial for you. you'll need to start researching and evaluating info. run things by medical experts if you can. good luck to you.

  • I can only reiterate the previous replies you are a very loving mum and.it is amazing how children react and some how have a 6th sense about illness and understand.

    Take care I send lots of hugs xxxx

  • Hi BundleRundle,

    Please let go of feeling guilty as it's an emotion that serves no one but drawings a lot of energy - energy that can be better spent elsewhere.

    It is very clear from your post that you deeply love your little man and that is most important. Loved/cherished children fair far better than those who don't get that true nurturing.

    Are you on any other meds? I would ring my rheumy nurse and explain the returning pain/flare as you reduce the predisone and they may be able to help.

    Ask to be referred to a pediatrist re your feet as they will advise you and can refer onto orthotics who can make specialist insoles to help - it was the best thing I did and my insoles have a dip where my big toe joints go to take the pressure off them. Your GP or rheumy department can refer you to the pedistrist.

    A referral to a occupational therapist will get you advice about protecting your wrists and hands. They will provide splints and other aids if they think it will help. I have soft sprints for typing and 'heavy' stuff like gardening, bed making to protect my thumb joints from strain.

    A physio will advise about the knees - I don't know why such referrals aren't made automatically but it seems that, in most cases, the patient has to prompt it by asking (or is that just here in the East Midlands?). I just politely explained that I wanted a referral for these professionals so that I could be best advised on how to best help myself stay as well as I can and it was done... bit of a waiting time for some but again worth it.

    Cleaning up your diet, if it needs cleaning up!, as mentioned above may help reduce the inflammation in your body. Too much sugary stuff increases my fatigue for sure and potatoes makes my joints ache. I have almond milk to keep my dairy down and keep my wheat intake low... I'll buy gluten free bread when it's on offer (to darn expensive else!) and avoid gluten simply by eating more veg and fruit ... A poached egg on a bed of chopped lettuce with a few raspberries for breakfast is actually quite refreshing!!!

    All the best

    Ali

  • I know it is hard and horrible but try not to feel guilty as they do not know any different. I suspect you are not under proper control yet so you many need to speak to your rheumy team to discuss treatment.

    I have a 27, 26, 16 and 14 year old who have all grown up with me being unable to do 'normal' things. This disease has many ups and downs and you have to make the best of things when you can. I made sure the garden was secure so they could run around and play there without me having to chase them and you have to be quite strict on when you say come here they know you mean it. Stories can be read anywhere - a pop up tent in the garden, under a tree, on the trampoline (if you can get on it - I had a strong step stool). You will be surprised what you can do with them when you are sitting down and them running around. 'Play' ball on the trampoline you can sit down and roll or throw balls around for them without moving too much. Hide things around the garden for them to find - they tend to charge around to find them. Boys are not as keen but my daughter liked to do crafts so a trip to the library for craft books. Board games, memory games (either cards or items on a tray and take one or several away for them to guess), dominos and card games were fairly regular. Enjoy what you can with him and don't worry about the rest. Farm

  • Just remember there are other things you can do with your little man,like sitting in the garden reading to him or sitting with him with your feet in the paddling pool. Yes this disease is debilitating and it takes so much away from us,but you must start to look at other ways to enjoy his childhood. Go online and also ask people on here who i know have children how they cope and what they do to make things different for their children when they can't play ball,perhaps your sons father or grandfather could do those things and you can take photos and put them in an album for him to enjoy so he can see you were with him in his knockabout darling and you couls also weave stories round the photos darling. Hugs darling.xxxxx

  • Hi BundleRundle

    My experience is slightly different to yours as I'm a dad, but trust me we all feel the same pangs of regret that we can't do everything for our little bundles of joy.

    I was 10 years or so into my RA journey when we had our first (a little boy) and had to stop taking whatever DMARD I was on for 6 months before we tried to conceive. Steroids it was.

    Aside: without knowing anything about your steroid regime please be advised doctors will often tell you to reduce them at a rate that causes a rebound effect, without wanting to type it all out again have a read of:

    healthunlocked.com/nras/pos...

    So in a way I was 'used' to having RA before we had children, but as life has gone on I have had other health issues that have also prevented me from doing everything I want with my kids (we have a girl as well now). I've been main carer for them for 4 - 5 of the past 7 years (the boy is now 7 nearly 8) and have had a new knee in that time. Also about 12 months ago I started having serious back troubles meaning I couldn't walk at all for a few months and have been struggling ever since. I still need sticks and my football days are long gone.

    But I love my children more than anything else in the world, as do all parents. And I'm pretty sure they feel the same. They don't really care about what you can and can't do with them, apart from in the short term 'I want to play football' kind of way, but they don't blame you for it, they just moan in the way kids do for a minute and do something else.

    I've said all this before on here, because you aren't the first parent feeling guilty, and you most definitely won't be the last, but another thing I've noticed is that my children are more aware of different people's differing abilities and are more compassionate and understanding than some of their peers.

    None of us have crystal balls (ooer) but who knows what effect this will have on our children? Pretty sure it won't be a negative effect, maybe we are bringing up the doctors and nurses of the future? 🤓

    And you are fairly soon after diagnosis, it can take a while before they find the right combinations of drugs (or diet?) to help you, but apart from my knee and before my back (which isn't RA related) I could do most things with them. And apart from my back I would be able to now, so there is always the hope that your health will improve.

    Good luck, and enjoy him while he's still so young he won't remember any of this bit of his life don't forget, so he won't even know you didn't swing him around your head. 😉

    Ade

  • of course your failure what do you expect, you have not only struggle through a bloody awful illness, you have given birth to the most fantastic little man ever, who has loads of love and cuddles from his mum. you have managed for ever to ensure he is safe, fed and loved. you have talked to him,watch tv with him, played make believe. when he is not well you have had him the bed making sure he is fine, when he has fallen over you have picked him up kissed his owee and made him feel good. All this with a disease which plays absolute havoc with your body , so are you a failure NO YOUR NOT you are AWESOME LADY, who is doing a fantastic job, and you should award yourself a big medal, though no doubt you will settle for a box of chocolates.

    warmest Craig

  • Suzannedale has said it beautifully. Ok you cannot do so much physically, and pain limits your mobility, but your son is loved and it shows so much in your post. Hard though it is try to stop fretting about what you cannot do, and sit and think about what you actually do do and it will outweigh what you don't.

    You are giving him love, security and much more. Enjoy him.

    Best wishes

    x

  • Please don't feel you are a failure, do not feel guilty. You give your little boy love, cuddles, security. That is what is important. That is what he'll remember when he's grown up, not whether or not you played football. He doesn't care about what other mums can do - to him you are the best mum, you are his mum.

    I had the same years of guilt when my two were little, and I couldn't get down on the floor to play, or sweep them up in my arms, or run with them in the park. It is heartbreaking.

    But they didnt seem to mind and from an early age they learned to help around the house and to be independent.

    Now? Both have grown up into lovely, caring adults, happily married, wonderful parents with children of their own.

    Yes, I still feel some pangs of guilt that I can't do more to help with my grandchildren- certainly I'm not safe to look after the very little ones on my own! But if/when the worm of guilt and self pity starts up I just look at my son, my daughter and my beautiful grandchildren and I realise I can't have been that bad a mum after all!

    Your son knows you're the best mum in the world and he loves you no matter what. (Would you ever think he was a failure if there was something he couldn't do?.....I thought not!)

    Just carry on loving him☺x

  • I think you need to go back to your Dr and ask about highering your steroid dosage slightly so you get an even level again and please don't knock yourself down you love your son very much we can tell and you still do a lot for him more than some moms who have no health problems . Stop looking a the things you cannt do and concentrate on the things you can lol xx Dawn

  • Oh do I know im 34 just diagnoised in march I have a 2yr and 10yr old my oldest is off for summer and she has spent it helping me instead of me taking her places like we had planned I have to nap everyday I can barley drive let alone do things with them like I used to I was a very active mom did every with them and for them now its all I can do to go swimming with them. I cry everyday as I see my world is crashing down. I just hope we find some relief soon hunny try and stay positive if you want pm me.

  • Hi Rundlebundle,

    The fact you feel this ways shows what a good mum you are. Please take the excellent advice you've been given here and don't be so hard on yourself.

    Sending you a big dose of good feeling

    X

  • Hi, I was diagnosed with rheumatoid arthritis in 2002 at the age of 42, older than you but I did have a 2year old daughter. I also had a son starting uni and a son of 16. Within a few weeks I could hardly walk and my 16 yr old was helping me to dress and help look after his sister while my husband work's.

    I was excepted for anti TNF when my daughter was 4, and my life got better but I've always needed some help from my family.I've always felt guilty because I sometimes have to rely on them but my daughter now 16 just finished her gcse,s, very mature,caring and empathetic,she's going to study law at uni after her A levels. She wants to be a human rights lawyer helping people who are disadvantaged. You feel guilty now and probably will always do,but your little man will have a bigger understanding of of people who struggle for what ever reasons than most,and the main thing he will always remember is not playing football but how much you gave him your time and support and how much he is loved.Linda x

  • Hi love

    Ahhh as above please do not feel guilty you sound like an amazing mum doing all that she can for her little man .

    There are plenty of other things you can do with him. And it's not long term as once you get other meds sorted or your prednisone sorted again you will be able to do more. But push your doctor to supply something to replace it if they don't higher your dose again. It took me 2 and a half years of being on steroids beforebefore they got my diagnosis right .if they are going to leave you on steroids please make sure you get calcium n vitamin D off them and even alendronic acid which is a supplement that protects your bones, especially if you are going to be on steroids for a while .and please do not feel awful , your doing all you can n your little one will love you regardless.

    Sending big hugs over to you both .

    Get referred to a rheumatologist as soon as you can. To get the best treatment.

    Dee xx

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