Dear Hubby….

On By Claire Saul (PainPalsBlog)In chronic illness, Ehlers Danlos Syndrome

Dear Hubby,

I woke up this morning wondering how we got here.  If we had known on this day all those years ago what was in store, I wonder if you..or I…would have turned up at Chelsea Registrar’s office?Scan0023

But we did, and here we are, having weathered the storms, the unexpected, the joys and some dark times.  Back then it was just going to be us and your beloved Lotus 7, having been told that babies were not likely when I was diagnosed with polycystic ovary syndrome aged 20.  The first storm – for you at least – was the realisation, soon after we bought our flat in Fulham, that we couldn’t afford the parking space to go with it! So the first Lotus 7 had to be sold as leaving it on the road – even the posh road to Bishop’s Park and the Palace that we overlooked – was not going to happen.  Scan0025

Of course at this time we had no idea about Ehlers Danlos Syndrome – had never heard of it – we just knew I had a host of problems and had already undergone major back surgery and was very bendy. Life in London was great, wasn’t it?  I don’t think that brand new kitchen was cooked in very often as we dined out down the Kings Road or in Fulham most nights.  But all good things come to an end, and you began craving another sports car(!) so the hunt was on to move out of London.  Soon after the move to our first house came another joy in the shape of a second Lotus 7. But within months came probably our biggest unexpected piece of news….I went to the GP for a once over before starting a new job, feeling generally unwell – and came out 3 months pregnant whilst taking HRT.  Hmmm….that little 2 seater didn’t last long either.

There has been redundancy; more babies – including the tummy bug that didn’t go….oops! your little girl…..3 caesarians & increasing back pain; another house move to the same road as your in laws(!); hideous working hours for us both, including 6 day weeks and night shifts; increasing migraines; more dislocations; IBS; school choices; more back pain and finally on the eve of Obama’s first term in office – the straw that broke this nurse’s back!  Then a career lost – permanently.

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And 2 becomes..5

We are quite a few years on and many more major surgeries to add to the list.  Not forgetting the Ehlers Danlos Syndrome diagnosis – for me and the kids.  A life threatening illness for one of our parents and then your own health taking the full brunt of all our traumas. That was a scary time for us all to watch you disintegrate.

But…..we are here still standing – you at least! Me – I spend more time on the ground these days (laugh everyone!).  The kids had to grow up fast and have all turned out to be pretty bright (not sure where that came from), independent & resourceful – so long as we’re not talking about tidiness and cleaning!!  We have had to accept that I need you to officially be my “carer” – which I still hate – as my health declines, and this has been hard for us both having worked and earned from the age of 18.

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Look what arrived today!

But…..with a bit of juggling, fantastic parents and wonderful friends we are doing ok, aren’t we?  No we haven’t any money for holidays, and we worry about being unable to help the kids out financially, but this has led to our young adults working and earning – be it paper rounds, babysitting or writing websites! We are spending more time together as a family, you are enjoying setting up your own small venture and taking on a role at the kids’ old primary school, which has been the making of you. Who would have thought it a couple of years ago!  You never – or rarely – complain about me and I do know that on those really bad days, when the pain flares and I can’t settle, or the black dog (not Sam!) surfaces I can be awful to live with.  Plus there are the endless trips to hospitals across London and the different specialists to keep track of.

Neither of us signed up for this, but then you never know what is round the corner. In a funny sort of way maybe life is actually more fulfilling now.  We certainly both have almost encyclopaedic knowledge of Ehlers Danlos Syndrome and all that goes with it!

So back to the beginning…..it was a pretty dreary day and actually raining when we walked out as Mr & Mrs (at least I did prevent you walking me over the road to Stamford Park!) 25 years ago.  But today has been a bright, beautiful autumn day – Happy Silver Wedding Anniversary, hubby!Scan0024

love Claire x

Dear Hubby

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35 thoughts on “Dear Hubby….”

  2. What a wonderful tribute, and such a heartfelt, honest account of the ups and downs over the years, especially for you, that have made you and your relationship too stronger. Happy Anniversary to you both ♥
    Caz x

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      1. Good luck with that!
        Can’t track down an email for you, but wanted to let you know that Chris and I are planning a trip to Australia – to do a Big Lap in a motorhome – next year. We’re setting off in March and will be away for up to a year. Will definitely see you before we go. I’ll get in touch next time I’m coming up so we can try and catch up. xx

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  8. Suzanne [globalhousesitterX2]

    Having a supportive person to share your life is so priceless, and it is wonderful to celebrate it. Actually, we should do it more often 🙂

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  16. The Dream Girl

    I’m still trying to get over the shock of the diagnosis.
    Happy anniversary. I hope I’ll be saying something like that to my husband in about 13 years (my husband and I have been married 7 and he has definately stood by me through all the crying, pain, hospital stays, medication trials, bad medication side effects, diagnosis’s and everything else.)
    So far- EDS, Osteoarthritis, Hashimotos, IBS/Gluten and lactose intolerance and I’m waiting on test results for Ankylosing spondylitis due to inflammation in my hips and spine and I’m off work due to potentially 2 types of arthritis flaring with a pulled muscle in my shoulder.
    Genetics are a pain, aren’t they?
    I’m hoping neither of my girls end up with any of what I have.

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