My Husband hates me...

... or at least that's what it feels like most days. This illness has totally killed anything we once had, he is pretty much my carer, he does the washing, the shopping, the bins, the dishes, walks the dog twice a day, entertains and takes our son T swimming, to drama and to rugby classes, he cooks every day, puts T to bed and even though he knows how much I struggle, I think he just doesn't see it sometimes. I try my best to help out as much as I possibly can, in fact most days I do way more than I physically should (which has resulted in me getting worse over the years), but at the end of the day he does more than the average husband and resentment is coming between us.

I can't remember the last time we laughed together, in fact I hardly ever see him smile. He is constantly moody which in turn causes an atmosphere and so I just try to keep quiet. I can't remember the last time we had a meaningful conversation, talked about the future, our wishes and dreams etc. but I guess that is a lot to do with not knowing what the future holds for me - of course, in reality no one knows what the future holds but even going on holiday would be too exhausting for me, we haven't been away since early 2012 after I had recovered from my bowel cancer op and then it was just the two of us, now we have our son to add to the mix. I know that hubby would love to go to Vegas one day but it would be way too challenging physically for me plus now that I am no longer working and my savings have run out, money is tight because we have to pay for childcare every month, we didn't even get to go on honeymoon, so as you can see, it's understandable that he is not happy, sometimes I just want to run away or worse, I feel that they would be better off without me.

When we first met I had only just started to show symptoms, meaning I could work and could exercise, obviously not as much as I once had but enough to keep my weight down. Since getting worse over the years and also developing pain from Fibromyalgia it is absolutely impossible for me to exercise. I used to love love love dancing, I used to go two or three times a week so was dancing at least 4 hours a week, plus I'd also do work outs at home and go to the gym & sometimes practice yoga, now that I can hardly walk up a flight of stairs I am three and half stone heavier than I was when we met, so it's no wonder he no longer fancies me, in fact I can hardly look at myself in the mirror.

I know that my health conditions make married life difficult and horribly complicated and as much as I struggle I know that he does too (in a different way). It's not helped by the fact that this illness is invisible and because I am proud, I try not to show when I am in pain or struggling with exhaustion, I just cope by crying when everyone has gone to bed and get cuddles from our faithful labrador.

I guess he knew what he was signing up for when we got married and it's O.K for him not to be O.K with it all sometimes too. However one of his best friends had it and got better and I think that he thinks this could happen to me, where as in reality his friend was probably suffering from Post Viral Fatigue Syndrome from which people do recover.

I think that we both just have to realise that life isn't a fairytale for a lot of people for lots of different reasons and this is the hand that we have been dealt and we just have to get on with it as best we can.

The best I can be today

Do you know how hard it is for 

me to hold my tears inside?

I lost the life I once knew and it is

so very hard for me every day.

I may look strong, I may have

you fooled, but what you didn't 

realise is that I fight each day to

be this way. So please have 

patience with me. I will never be

the same person I once was. 

Just know that I am trying to be

the best I can be, for today...

Having a Mummy with a Chronic Illness.

I have wanted to start writing this blog for ages but just didn't know where to start, so today something happened that has really got to me and so I figured that today was as good a day as any to begin. 

Well it is 2.45 on a Friday morning and as usual I can't sleep, my eyes are stinging from many tears, I ache all over and my bones hurt - rather like having a particularly bad cold or flu back in the days when I was well, these days since I have been living with this stupid unpredictable illness for over 9 years in varying severity, aches and pains are an every day thing that to be honest don't ever go away, just get worse at times but never completely disappear. 

Anyway as I referenced above, today my soon to be three year old son asked me - "When am I having my party?" To put this into perspective, most of his main friends are children of parents I met through N.C.T. classes and therefore his friends all have birthdays around this time of year who's parties he has been to recently. He knows his birthday is coming up soon and so it's not unreasonable for him to ask this seemingly obvious question - but it broke my heart... I have been fighting with the idea of arranging a party for him for weeks now but know that if I do, it could cause me to crash, so can't risk it, especially as last weekend I ended up in bed when I should have been travelling to see my 8 year old nephew for his birthday (and that was only caused by going to have my hair coloured so having to sit bolt upright for many hours). All this has lead me to question whether it was fair for someone like me to bring my son (T) into my world. It's not like he was unplanned, quite the opposite in fact, he is an IVF baby and I question myself daily whether I did the right thing bringing him into the world of having a mummy with a chronic illness.

He didn't ask for this, being my son means that he hardly gets to meet other children his age because I find it difficult to go to toddler groups with him as it's so tiring for me to keep chasing around after him and I find standing up for too long a challenge as my heart rate goes up high. Also he has a different daily routine than most children his age, I have never been a morning person so we don't put T to bed until late in the evening so that he gets up late in the morning meaning that I have less one to one time with him (which can be challenging at the best of times, let alone on a bad M.E day) and he gets to see his daddy in the evenings when he gets home from work and his dad can help me by getting his supper and playing with him, getting him ready for bed etc. Anyway - as I was saying, we don't go to many toddler groups (even if I am having a good day) because they all start hours before we are awake. 

It is now the following day - despite going to bed so late, I still got seven hours sleep but am feeling rubbish - as if I've had two hours not seven. My brain is only working at about 40%, my limbs feel so heavy and my throat is sore. I have no energy, everything is a chore (hey that rhymed! he he!). I am supposed to be going out with my lovely next door neighbour tonight to celebrate my birthday, just a meal out and a few cocktails but I'm not sure if I can do it. 

Right I'm going to sign off now, I'm not really sure who I'm writing this for, just me or whoever wants to read. If you are reading this then a big "Hello" please ignore the way I am writing, I know it is all over the place.