My story

Hollywood27
Hollywood27 Member Posts: 2
edited 26. May 2019, 09:11 in Say hello
Hi I was diagnosed at 6 with Juvenile Idiopathic Arthritis in my knees, at 16 I was diagnosed with Psoriatic Arthritis in my hands. It has since spread to my elbows, shoulders, hips, jaw and ankles (think I’ve got them all there) and I am now 29. Currently on sulphasalazine and steroids. Have been on methotrexate in the past which worked very well for me at the time but have come off in the hope of starting a family. I am very worried however about how I will be able to cope with a baby, the lifting, carrying, even just sitting still to feed and being able to play with them. Any Mums able to give me some ideas of how they adapt how they do things? I know it’s a long way off for me but it is something I do worry about and it kinda puts me off the idea of having children as I wouldn’t want to have a negative impact on their life from day one.

Thank you for reading and hope to hear from some of you soon.

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Hollywood27
    Welcome to the Forum.We are a very friendly and sympathetic forum full of people who understand what you are going through as everyone here has a form of arthritis and various amounts of pain. There are several forums the most popular forums are Living with Arthritis and Chit Chat, so just choose one and you will soon have answers coming in.
    All the best Christine
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Hi Hollywood27,

    It's very good that you're thinking in advance about the possibilities and potential difficulties of motherhood combined with an inflammatory arthritis.

    I did it twice and I have to say it was by no means easy. Back then (1970s) all I could take during pregnancy was soluble aspirin. It didn't matter first time around as, like some other women in their first pregnancy, I went into remission for nine months. (And then came out of it big time :o ) No such luck with No 2 son. It was a nightmare. There was no No3 :lol:

    I really don't know how I'd have coped without my parents. Mr SW was a really good, hands-on Dad but I was flaring horribly and exhausted. In the end we all went to my Mum and Dad's (about 20 miles away) and Mr SW commuted to work.

    No-one showed me what to do. I just learnt on the job. I learnt to pick them up by folding them over my forearm. I often left them without nappies because I couldn't fasten them. I think the 6-12 months period was the worst because they were so heavy by then and so wriggly and determined.

    I think the most important thing I learnt was to let my standards slip. For me, it was impossible to have arthritis, a baby and a tidy, clean house. Something had to go. The arthritis wouldn't and I wasn't prepared to let go of the kids :wink:

    How you cope will depend on what's hurting most at the time. You'll figure it out. But do accept all help offered.

    I love my sons to bis and their sons too but, if I'd known what was coming, would I have believed I could cope? Probably not. I don't think they lost out much because of my arthritis. Financially, yes, as we were a one income household so they never had the toys and clothes their friends had. But, on the other hand, I was always there to make their friends welcome, score for them all at snooker and table tennis etc.

    As you will know, there can be a genetic component to autoimmune diseases. I didn't know that back then. Mine both had asthma and hay fever as kids. They both outgrew the asthma. The younger one still gets hay fever and the older one has developed coeliac disease. He's fine as long as he doesn't eat gluten so we consider ourselves lucky.

    I'm sorry I can't give any real tips because, as I said, it all depends on what's flaring and when. All I can say is be very adaptable. Think outside the box. Don't try to be like other Mums. Accept all help offered. Forget about tidiness. As with yourself, don't buy them fashionable outfits, buy ones you can get on and off with the least pain.

    I found it the toughest thing I ever did but the most rewarding. We now (on his persuasion) live near one son and holiday every year with the other in California. He'd love us to live there but, medically, they wouldn't have me :lol:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    We rarely hear from mums because they are too busy.

    I look at it all from a different perspective because I was the child of two parents who got what they wanted (me) but had no idea what dross they were passing on. My mother's side of the family donated eczema and asthms, my father's psoriasis. They were fine, I copped the lot but hey! they wanted a baby so that was all that mattered. :lol: . I was born in a time before steroid creams and inhalers so my severe eczema and chronic asthma went medically untreated for many years. By the time I was sixteen, back in 1975, doctors were beginning to understand about the importance of genetics and why auto-immune conditions ran in families so I, unlike my parents, was able to make an informed decision.

    The decision was that my desires and wishes were unimportant because the risk of giving someone else the chance to live a compromised and medicalised love was not an option. Yes, my children might have been OK but their children might not. I did not want the responsibility of playing Russian Roulette with something as vital as health, especially as I had never had it.

    My parents weren't to know because back then nobody did. Yes, times have changed, and yes it could be that children born to mothers with auto-immune conditions now have the meds available to control matters but is that fair for the child? We have had many young women posting about what they want but they never mention what the resulting child might have to cope with in their lives.

    I am not proud of much in my life but I am proud of one thing - that arthritis will not be passed on. I could not, in all truth and conscience, risk condemning another unsuspecting human to what I have experienced. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben