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My story starts very shortly after my son was born. It wasn’t a normal pregnancy, at 14 weeks I was diagnosed with Symphisis Pubis Dysfunction, which saw me confined to a wheelchair or bed for the duration of my pregnancy, which was fabulous seeing as I had a small 2 year old daughter at home who needed me. My son was born via C-section early April 2012, he was 37 weeks, and required oxygen intermittently for the first 48hr of life. Everything seemed perfect, I felt complete. With my daughter I had severe Depression, I dare say, it started during pregnancy, so to have finally fought my demons and to be able to now enjoy my children, I was happy.

Not even a month after my son was born I noticed changes in my body that I wouldn’t consider normal. I ached, I felt more tired than normal and my hair was coming out in clumps. Little did I know, this was the beginning of the rest of my life. I allowed some time before bringing it up with my GP in hopes it was simply hormonal. Things quickly got worse; I was waking up multiple times during the night in incredible pain, with my hands seized up into a fist. Unable to physically open them, I had to painfully pry my fingers open in order to try and fall asleep again. With a newborn and a toddler, I could barely get myself out of bed. My husband was waking up to our son in the middle of the night, and my daughter would have to help me with basic tasks during the day.

My GP referred me to a rheumatologist at my local hospital where I received my diagnoses of Lupus (SLE). I was quickly put on 25mg of prednisolone, along with plaqunil and a script for pain killers to get me through until the steroids took over. Over the next 12 months I would develop a love-hate relationship with prednisolone. I would be so severely hungry I would have to monitor my calorie intake, and on my highest dose I would have anxiety attacks, but I was in minimal pain, and my fatigued was comfortably masked. My main symptoms now included migraines, rashes, sun light intolerance, memory lapses, and the typically described ‘brain fog’. I even had to cut my long, beautiful hair because it now was impossible to brush it.

Mid May 2013 I had a mini stroke. I was driving with my two children in the car and temporarily lost vision in one eye, and partial in my other. I managed to reach my destination and an hour and a half later, normality was restored. I usually had migraines, but this was very different, enough that I mentioned it to my GP who couldn’t believe no one called me an ambulance. I was lucky, very lucky; it could have ended so very differently.

That brings me to now. 3 months ago I was weaned off prednisolone due to weight gain, along with my feelings of anxiety. I had always been a large girl, but never like this. In 12 months I had gained almost 20kg from immobility, pain, and the prednisolone itself. I am instead on 25mg of Methotrexate, which is a chemo drug, but has worked wonders for my joint pain, even if the phrase ‘chemo drug’ is frightening. The nights of my injections are horrible, with the injection site being tender and my head in a spin. I have now been diagnosed with depression once again, and along with being medicated for it, I have the assistance of a brilliant psychologist who is arming me with the tools I need to accept the things I can not change, and change the things I can not accept.

The main change in my life is how my disease and side effects, affect my children. It’s painful to see a beautiful and bright almost 4 year old take over mummy duties when my hands don’t want to function, to have her finish my sentences when I can’t find a word, or to watch her take care of me and her brother on my worse days. The funny thing is, I never know to what kind of day I am going to wake up to, one day I will be ok, the next I will struggle to hold a pen.

This is not a situation I would ever have wanted to bring children into, but to this day, both my children surprise me. This will be their normal, they won’t know me being any different, but it isn’t mine, and it’s something I’m learning to live with. I no longer have a pain scale; it’s measured by tolerable and intolerable, and while it’s tolerable, I have to make the most of my children and my life. I plan my days carefully, if I do too much, I could be paying for it for weeks, and right now my fatigue is at its worst. I have never known tiredness like I do now. Waking up and needing a nap is something I will never get used to, but I will continue to do my best to work around it. I have a family who need me, just as much as I need them. My amazing husband has been my rock through this, he wakes up to our young son, works a full week, takes care of our home and even cooks and puts our children to bed. He reminds me to take my pills, and always puts me before himself, for which, I will forever be grateful for. This is only the beginning of my journey, with Lupus, things can change at any point in time, but with my supportive and ‘helicopter’ husband, and my children, I can do this. I have Lupus, but Lupus can’t have me – or my family.


Posted by gcoventry, 25th September 2013


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  • I love you positive attitude. I hope you are getting lots of support

    Reply

  • I never realised how dilberating Lupus could be.

    Reply

  • Wishing you strength and all the very best.

    Reply

  • Stay strong! Love your attitude that you can have it but it can’t have you!

    Reply

  • is there a support group for this it might help to speak with other people who are going through similar situation to have that extra support for you and even for your husband there could be a support group,i wish you and all your family the very best.

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  • I didn’t know Lupus was such a debilitating disease, sorry to hear of all your pain. I wish you strength through it all.

    Reply

  • You sound like a very strong women and I wish you all the best. Thanks so much for sharing your story.

    Kind thoughts your way

    Reply

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