Saturday, 23 January 2010

Changes and Voyages of Discovery

To anyone who has been checking in and wondering why Living Well with Lupus ground rather rudely to a halt in November last year, I can only apologise and explain that the final trimester of pregnancy has been rather more eventful than I would have liked ...

Shockingly, my usually ‘picture of health’ strapping husband Tony suddenly became very ill himself at the end of November and it has lasted rather longer than we would have hoped, coinciding with the chaos of the festive season and beyond. All of a sudden we found ourselves in a weird ‘role reversal’, where I experienced how it feels to be ‘carer’ (a full on job, hence the absence of any Living Well with Lupus posts) and he got to experience what it’s like to be an energy drained ‘patient’. If nothing else it’s been an insightful time and given us a much deeper empathy of each other’s position. Suffice to say both of us discovered that both roles are far from fun. Thankfully, he is gradually recovering now and is back at work (although working from home which means he is using the laptop during the day and by the time he has finished ... well put it this way, when it comes to bedtime I beat my Granny’s early nights, so please forgive me if I am a little remiss for the next few weeks!)

As for the lupus throughout all this, it’s had its usual ‘ebbs and flows’ which have been carefully monitored by my doctors and my medications have been adjusted accordingly and although I am exhausted, I seem to have survived these turbulent times, and miraculously this pregnancy fairly unscathed so far.

When I say ‘miraculously’ that is exactly how I feel because not long after my wedding in 2006 on my 31st birthday when I sat in hospital being infused with cyclophosphamide the prospect of ever being able to start a family seemed remote to say the least. It is with this in mind that I say to any 'loopy' in this position now (although I acknowledge it may feel hard to believe): I am not talking about 'miracles', but I do believe that with due patience and care and it does take time, it is usually still possible to find ways to get what you want from life regardless of lupus as it's a condition where things are rarely set in stone.

Anyway, with all this behind us it is only now that we are all just beginning to accept that 'if we have a baby’ might possibly be becoming 'when we have a baby’, and the whole thing is looming on us - fast. Just four weeks to go! The ‘grandmums’ have both even dared allowed themselves to buy their first baby purchases.

So, how does it feel? Mostly we are just very excited, but in terms of Living Well with Lupus being parent raises a host of new questions (and thanks to you for some of the advice you have already passed on - it's good to feel there is a 'loopy mum' network out there!). How we will manage? Sleep deprivation is a massive problem for any new parent, but when you throw ‘lupus haze’ into the mix and I wonder how ‘loopy’ Mum’s survive?

The other question is how to explain the illness and its consequences to a child?

As if in direct answer to this particular question, I was delighted to hear of a new children’s book ‘Mama, Won’t You Play with Me?’. It’s written by a ‘loopy’ Mum called Meg Walsh who herself had to grapple with the problems of lupus whilst raising her family. Meg Walsh explains on her website that the story helped her children understand the importance of love and family as they could strongly identify with the central character 'Dudley the Duck'.

So, if all goes well, I am certainly going to order a copy and make sure it is on the bookshelf ready for our little one as it grows. Not only will it be a good way to help start explaining, but Meg Walsh will be donating a portion of the proceeds of book sales in May to the Lupus Foundation of America – all good stuff.


Gilly said...

Dear Daisy

It is good to hear from you again. I'm sure that I was not the only one who had begun to wonder if and then worry that you might not be well. Very sorry to hear about Tony but glad he's on the mend. Keep well and keep strong, you're going to need it!

Good wishes

Hua said...


I am new to your blog and I have really enjoyed reading your posts. You have some great information. I'm glad to hear that your husband is starting to get better. I'm looking forward to reading more of your posts.

Director of Blogger Relations

Lupus and pregnancy said...

Lupus is often found to affect females in reproductive years. Women detected with lupus are advised to avoid pregnancy because it could lead to miscarriage. If pregnant women is detected with lupus, it can effect her kidneys and foetus. One should take proper care when conceiving and should go for regular check up.

Daisy Seale-Barnes said...

Hi Gilly

Happy new year. Yes, sorry to worry you. Thankfully, I've been unusually well for the last few months which is incredibly lucky considering everything else that's been happening. Fingers crossed it lasts. How have you been doing?

Thanks for your support and encouragement. Will keep you posted.


Daisy Seale-Barnes said...

Nice to hear from you Hua. I am glad you have enjoyed reading the blog and found some of it helpful.

Please keep in touch and I look forward to having your comments.


Daisy Seale-Barnes said...

RE Lupus and Pregnancy

Thanks for your contribution.

I am lucky enough to be in the care of one of the world's leading lupus medical centres and the understanding I have from them is that the view women with lupus should not get pregnant is very outdated.

There are many complications linked to lupus and pregnancy including miscarriage, but with proper medical supervision and care there is no reason most women with lupus should not be able to have children.

With proper ongoing medical support throughout the pregnancy and proper timing (ie not at the time of a lupus flare) it is most certainly possible.

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