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Funny Old Week

September 21, 2012

Yes it has been a funny old week. I’ve been up, I’ve been down, I’ve been all around and I have come to the conclusion that I’m bloody well damned if this stupid illness is going to define my life anymore.  Throw your pills at me, throw your insomnia at me, I’ve got things to get on with, I’ve got people to see and, ok I might have to make some adjustments here and there to allow my body to accomodate it, I’m going to get on with it thank you very much.

I’ve never responded well to being told what to do, it’s a big part of why I’m self employed and over the past 4 months I feel as if my life is being dictated by doctors (albeit well meaning doctors).  Of course I’m going to do what they tell me, but I’m not going to let them dominate my life anymore.   I guess a few events hit me this week and made me think…

On Monday I had my regular opthalmology appointment, more bloods, more tests and the conclusion that my body needs more time to adjust to the medication levels and so to keep things as they are for another week before tapering the steroids again next week.  He advised me that the recent bloods have confirmed I have ‘lupus anticoagulant’  which I understood to mean that my blood is liable to clotting and then told me the rheumatologist would be exploring that with me (this reminded me I still didn’t have this appointment).  I left the appointment a bit scared and, with the absence of a rheumy appointment, googled this ‘lupus anticoagulant’ and terrified myself even more.  I rang the the rheumy secretary and, as suspected, they have nothing booked in for me and it looks like it’s going to be a long old wait before I can have my anxieties about this alleviated.    I spent Monday night a mess, really worried, really depressed, fed up with my rubbish body and generally feeling sorry for myself.

On Tuesday I woke up and decided this was silly, that I have to focus on what’s important in my life namely, my daughter, my husband, friends/family and my business.  In the afternoon I had to go into my daughter’s class to meet her teacher and see her classroom with all the other parents. It became apparent to me that I really had no idea what topic she was doing at school and I realised I’ve been so worried and focused on my situation I’ve not had the time and energy to dedicate to her life, of course I spend time with her and talk with her, but I’ve not been ‘all there’.  It also became apparent that she is finding the transition from reception to year one far more unsettling than we thought she would and I’m sure this isn’t helped by the anxiety that has been at home – no matter how hard we try to shield her from the worry, she’s not stupid  and she (like me) is a sensitive soul.  Tuesday evening I reminded myself that I’m a mother first and foremost and that I need to be strong,  if I fall apart our family unit suffers (and besides the housework doesn’t get done!).  I had 7 hours natural, uninterrupted sleep on Tuesday night… the first and only night since starting steroids.

So the beginning of the week gave me lots to think about, I realise that in order to maintain my strength and keep living my life I need to discipline myself.  If I’m tired and achey I need to rest, I need to not feel guilty and lie down, watch some TV or read a book and chill out.   I run my own business which, although a blessing in flexibility, brings a whole load of other pressure (hey now’s a really good time to develop a whole new ecommerce system) and I need to be sure to not overload myself.

Wednesday onwards has seen me being gentler on myself and the other people in my life.  In fact yesterday afternoon, right in the middle of the day, I went to the cinema with my best friend to see Queen Of Versailles (loved it, what a tragic/funny/interesting film).  It felt so naughty to be sitting watching a film when I ‘should’ be working, but was fun, a good change of scene and a break.  On Wednesday I snuggled up and watched Downton Abbey at 3pm in bed. Today I’m ok, I have energy – for now.

So during this funny old week I have learned there’s no point focusing on something you can’t change, as it won’t change anything. Focusing on my illness depletes my already limited energy reserves and is only serving to make me depressed, it’s doing enough damage to my body without me allowing it to damage my mind too.

I guess you could say, this week I have learned that this condition (whatever it might be as I still have no firm diagnosis)  is now part of me, it’s part of my life and is likely to be so forevermore.  I guess you could say that this week, I’m reconciling and accepting my situation and deciding to put it to the back of my mind rather than allowing it to sit at the front.

 

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From → Uveitis

One Comment
  1. For what it is worth, I know of many women with lupus anticoagulant in the infertility community who never knew they had it until they lost one or several pregnancies. The live a happy, healthy life and simply require some meds when trying to conceive, then go on to continue their happy healthy life. Hard as it is to accept our illnesses, it is something we have to do if we want to enjoy the today.

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