So.... I'm in a bit of a funny place and trying to figure out what having PSA means for me.
I developed my first symptoms within days of giving birth to my gorgeous little 2 year old ( head to toe psoriasis flare and a really painful toe joint). The toe joint was put down to being bashed during labour and I was prescribed Diclofenic which seemed to completely clear up my joint issue. My exhaustion and pain were all put down to the child birth, but I just never seemed to get better. I thought that maybe I was depressed, but I could still enjoy myself and laugh with friends, look forward to events. Nothing seemed to make sense! I did lots of google/soul searching and came up with PSA.
I was diagnosed last summer after a bit of a battle with lots and lots of doctors who told me that it was impossible for me to have arthritis as I'd tested negative on a RA test (Yikes!). I'd even had a little celebration, thank god I don't have arthritis! (oh the irony!) I suppose I should be grateful that it was picked at all.
After a consultation with a rheumatologist, they agreed that it was most probably PSA (I've suffered with P since a teenager) and I've been on Sulfasalazine and Celebrex since last November.
I had one priority, that my illness would not affect my child. I absolutely do not want my child to end up caring for me. I do not want him even to really know that I have this illness. I don't want him to feel sorry for me. I don't want to feel sorry for me!
Soo... I went around life with my usual vigour - lugging toys around at baby groups, carrying my child around on my hip everywhere because he doesn't want to be put down, getting up through the night with him, starting my day at 05.30 (I'm blessed with an early riser), basically pretending that there is nothing wrong with me and that life will continue NORMALLY. That was until, I had two impossible weeks.
My child and husband went down with a vomiting virus, for 5 days each, my elderly father was rushed to hospital (still not really recovered). I'm a stay at home mum and I don't really have any well family apart from my husband (who does so much when he can but he also works) to help. I've had a really unpleasant flare which started properly on Sunday (but I kind of had one last week too) and I've just been in so much pain. I had to 'out' myself to the other mums at baby group today (I didn't want them to think I was lazy for not helping out) and I also had to explain to my two year old that mummy couldn't pick him up today because she was poorly - and it broke my heart...
I really don't want mine or my child's life to be defined by this illness. Is this possible? Tips/advice please!
Of course you can. You need to take all your meds, keep stretching and keep moving (all easier said than done.) hers how dumb I am I didn't know my mom had it until she was 85 (I was suspicious when I get it and both my older sisters thats a different story each approaced it differently)
Do what you can do, adapt to what you can't and define that as normal. I though it was COOL to be able to run the washing machine when I was 8. I also though it was cool to be independent. A parent always watching to make sure I didn't get too far out of line, but always being able to do a lot on my own. My parents didn't play outside with us etc (later i learned my dad didn't want to try and compensate too much) But I gotta tell you I spent a lot more MOM time being read to cuddling etc than my friends. NEVER did I need to be entertained. Now I know raising kids is more formal these days. Long gone are the go outside and play now OR ELSE moments. Its all activities, lessons and play groups/dates but it doesn't have to be and honestly your kids won't suffer..... You COULD become THE HOUSE. Believe it or not we were. both as a kid and as parents. We just had to be sure NOT to make a mess we couldn't clean up.
I teach college students, You don't even want to know how many of these kids can't make decision, or do much beyond "hooking up" (it seems they don't date because they don't know how to do anything beyond watching videos that hasn't been organized for them. Walk out of class most are on their cell phones. and most of those are checking in at home. I'm not trying to make a good story here. Its scary. My course syllabuses now have to be step by step or the Dean is on me. Even class notes have to be the on the website so they can compare. The best students FWIW seem to be the rural kids and the lower economic kids.
YOU will define normal in your house if you define things as NOT normal thats what they will be. The goal is to raise kids who will be independent (if not driven) adults and care for others while valuing relationship first. I don't see how that will be any different/. Even if its painful to say "Honey Big Girls don't need carried, but I'll hold your hand for a while til you get used to walking by yourself" Get used to those moments raising kids are full of them, whether its leaving 'em behind at school the first day or walking them down the aisle at their wedding......
Thank you, that helps. It helps to know that you weren't 'scarred' by your childhood experience, and you're right, we have so many cuddles and books - perhaps the bright side of PsA are the quiet times and cuddles :-)
I have missed you and your warm wisdom Lamb. I am glad my kids were raised rurally and don't know we have money.....hee, hee, hee. They will figure it out for themselves when I am dead.
I've had PsA since before I had my two children (now ages 15 and 12). My suggestion is to be open with your child about your illness. My kids are compassionate and caring toward me, WITHOUT feeling like they need to be my caretaker. You will simply find alternative things to do with your child when you can't do something physical. I did a million hours of reading to my kids, playing games, make believe at home, making houses with sofa cushions, playing blocks, you name it. Not every parent can run around and be physical. Children are resilient. You'll be OK.
Thanks everyone for taking an interest. It's good to know that it can be done. I completely agree that so many kids are way too dependent on their parents, but when you're the only one not treading that path it can feel a bit scary. But I'm guessing as Lamb said, this isn't so much about PsA as just raising kids! Thanks all!
I have five homeschooled kids, and care for other children as well. My PsA is so severe it has landed me in a wheelchair on and off. I have a collection of canes and crutches. I sometimes can't use my hands or lift my arms much. My children are learning to see life through eyes of compassion for someone living with a disability. They help out where they can. They rejoice with me when I'm able to do things I haven't been able to do in a while. They are learning that living with psoriatic arthritis, with pain, and with the unpredictability of PsA is just life - not some horrible thing - and it doesn't mean that I enjoy life any less or am able to give any less. Actually, they now have a mom who is more available, more present, more joyous, and more thankful for life's little blessings.
I can't pretend that I have it all figured out because I have some very bad days emotionally as a 35 year old stay at home mom but I relate to you in many ways. My daughter was 4 and my son was 1 1/2 when I was first diagnosed. I knew something was wrong well before that when it felt like I was dying just to carry a baby to the car and take them places and when I had rotator cuff surgery because my arm "looked like a 60 year old construction worker" (words of ortho) for no reason. Lots of my back pian started when I was pregnant and I agree it was like I spriraled out of control from that point on. I couldn't carry my one year old and went through the same issues. Now two years later I have had 5 shots of enbrel and am beginning to see some positive changes. I am open with my kids. I say, "I cant do that right now because my back and neck hurts" or "lets play on my bed." They are defiantly getting use to it and I try to never let them feel like they are taking care of me. They do know that they can help me out by picking things up (shouldnt kids do that anyway-ha ha) and that I need lots of down time. My six year old is beginning to know my flares and what causes them so well that when I get carried away she says "mommy you better not do that or you will regret that." At first it made me sad when they played doll house and my kids would always make the mom lay down because her back hurt, but now I laugh about it. Don't get me wrong - I have very very bad days and I basically live hour to hour- but we are all adjusting and I think they will be stronger kids for it. A few months ago I was very depressed and desperate and right now I feel better mentally and emotionally. It is very hard dealing with the daily temper tantrums and responsibilities when you are in terrible pain and cant get up- but these past few weeks I have taken deep breaths and tried new ways of handling everything.
I can only second what many have said so far. My son saw me go from an almost unstoppable third-degree black belt to a crying mess on the living room floor. Now that I'm doing better he loves the fact that I am home with him and his baby sister. The only thing that has happened to him as a result is that he is more aware of how his behavior affects others than your average 7 year old. Just the fact that you worry about it tells me your son will be just fine. A good parent is one who is involved in their child's life and it sounds like you are very much a part of his :)
Thanks everyone, feeling better today, still a bit of pain but the GP gave me some painkillers and extra anti inflammatories and it looks like the flare is on its way out. Thanks for all your advice and shared experiences. I sometimes wonder whether this is just part of being a parent. Even the healthiest people get sick sometimes, doesn't mean that your children will end up caring for you!