Wednesday, 16 January 2013

The cold, hard truth

I've been putting off this blog post as usually I try to write with a little bit of humour and hopefully wit to lighten the mood however this is, unavoidably, a bit of a downer. I have been writing and re-writing this post in my head for a while now and whilst I feel a bit nervous about baring my soul, I feel this is something I need to write in order to get things off my chest. I have been thinking for some time about the possibility of having a baby whilst suffering from ME. Whilst I know many other women have this difficult decision to make, each person has different circumstances, support networks and values. The following is merely my own, very personal take on the situation and as such is just an opinion based on my own experiences. Please be gentle with me! 

I never really thought I'd have children. When I was a teenager, we had it drummed into us by our families, school and the media that getting pregnant at a young age was a disaster akin to the end of the world. Having sex, getting pregnant and having abortions were scandalous topics in many a secondary school playground, talked about in hushed, shocked voices and woe betide any poor girl who happened to find herself in this unfortunate predicament. Such was my determination that this calamity would not befall me, I can actually remember praying that I would be infertile so I would never have my life ruined in such a way. All the drama and hype about procreational matters served to put the fear of God into me and in fact the job was so well done that I continued to feel that terror well into my adult life.

Of course, not all the blame lies with the social attitudes of Britain in the 90's. The truth is that even without that pressure, I simply have never felt particularly maternal or mothering and as a young girl, then a young woman, having a baby was never something I imagined I would ever want to do. The times I have been asked before x-rays or other medical procedures 'Is there any chance you could be pregnant?' have always been met with a look of horror and the reply 'I hope not!'. Whilst this was quite endearing during my teenage years, as time has progressed it's not such a good look. The last time this happened  the look of horror on the nurse's face was equal to my own as she tried to work out what sort of a monster I was. After all, that's what we as women should do, shouldn't we? Get married, have babies, worship our husbands, don't answer back. Well, I for one was not going to conform to what society expected me to be. I was my own person regardless of gender so why should I give up my body and my life to perpetuate the patriarchal stereotypes and nonsense just because it was what was expected of me? No, I certainly did not have any desire to have children, thank you very much!

Or so I thought.......

It turns out that nature is a tough opponent to pick a fight with. It turns out those smug nurses at the contraceptive clinic were right when they talked about biological clocks and leaving it too late. At the time, I didn't want to listen as I found it offensive these women were telling me I should be trying for a baby at my age. Actually, I still think it was pretty wrong of them to try and hassle me to come off the pill but they were right about the biological clock. For since I hit my thirties a strange metamorphosis began. If there was a baby in the room, I no longer had to be the furthest thing from it. Quite often I even wanted to hold it! I found myself imagining what it would be like to have my own. Unused to these strange feelings, and unsure as to what to do, I decided that in order to buy a little more time, I would only get pregnant once my partner and I were married. Thus, the decision of whether or not to have a baby would be put off, possibly indefinitely. Secretly, I hoped this would be sooner rather than later and a sensible person would have had the proper chat with their loved one about marriage and children and the future. For me, I put off the serious talk as I was so scared my partner would want me to have a baby, yet even more terrified he wouldn't. It felt like my beliefs and upbringing were waging a biological battle with my ovaries and I didn't know which way to turn.

It was at this point that two momentous things happened. The first was that my partner proposed and I finally saw this as the sign I was waiting for. If ever I was going to have children then once we were married would be the time. Slowly I began to gear myself up for the possibility of motherhood. The second momentous thing is that three days after we returned from our honeymoon, I became ill and never recovered. Having spent the last 17 months unable to work or live a normal life, I have had plenty of time to pause and reflect on what is important to me and what I hope for the future. The cruel, cruel irony is that I finally managed to work out that I do want a baby, yet I am at a stage where my health will probably stop me from doing so. I know that if I hadn't got ill, I would possibly already be a mother by now. I look out my window and I see four of the women in my small cul-de-sac have had babies within the last year and I envy them. I look at Facebook and see photo after photo of scans, babies, children on their first day of school smiling and looking tiny in their too-big uniforms. I see status updates about pregnancy, and birth, and all the million and one events happening to the children of my Facebook friends. I am pleased for them yet at the same time find it an alien concept that they are so lucky whereas I am not. These days I almost find Facebook too happy, preferring to stick to Twitter where no-one minds if you have a good whinge. Perhaps being restricted to 140 characters makes negativity more palatable.

Still, I am not writing this in a 'woe is me, isn't my life terrible' attempt for sympathy and understanding. I know I have only myself to answer to for leaving it so long before considering motherhood. There is advice available for women with ME who wish to get pregnant and there is always the possibility I will recover before my fertility takes a complete nosedive. There is no way of knowing for sure what the future will bring but I feel I have to face facts. I am 37. It takes all my energy just to look after myself and at the moment I am severely limited in what I can physically do. Practically it would be unwise to try for a baby, financially a disaster. Even if I improve, there is still the very real likelihood of relapse. Personally, the thought of not being able to look after my child properly is far, far worse than the thought of not having a child in the first place. The strain it would place on my husband, the effect it would have on our child, the worry that Social Services might get involved are all significant concerns. Then there's the matter of hereditary genes - after all, with hardly any research being done to find out about my illness who can say whether I would pass this on to my child?

So now I am trying not to dwell on the nights I dream I am holding my baby and can almost feel the fierce, all-consuming love that only a parent can really know. I try not to imagine little footsteps echoing up the stairs. When I look out my window, I try not to see my child playing in the garden, shrieking with joy or skinning their knee and crying for mummy. I try to forget the names I have already secretly chosen for my imaginary son or daughter, to forget the look of wonder in my husband's face as he holds his nephew in his arms, the knowledge that he would make such a loving father.

Instead I remind myself of teenage me, who perhaps deep down knew that motherhood was not the path I would take. I think of the cruelty of a world where there are no guarantees. Where healthy people and healthy children can have their lives changed in an instant by illness or death. An uncertain world of financial collapse in a country where the rich have declared war on the sick, the poor and the vulnerable. A world of global warming and climate change, overcrowding and over-consumption. I remember that my life is nothing more than a drop in the ocean, a mere nanosecond in the existence of the universe and that in the grand scheme of things it really doesn't matter. This may seem melodramatic but it is of some small consolation to me and as time goes on, I find myself more accepting of my circumstances until the day I can finally make peace with this illness and move on. After all, having ME is sort of like parenthood - poor sleep, lack of social life, hardly leaving the house, financially draining. It's just instead of a child, the one that needs looking after is me.

Thursday, 3 January 2013

So this is Christmas....

I forgot one teensy weensy factor in my last post. I was so full of the joys of Christmas and how, through pacing, I was going to have such a wonderful, magical time that I forgot all about my body. The one thing that could truly throw a spanner in the works and what a huge, heavy spanner it was.

You see, throughout my illness I have been trying to make friends with my body and work out exactly what it is that is making it so unhappy so that I can do my best to make it better. I thought we had managed to come to some sort of understanding, a truce perhaps where if I treated it well, it would be kind to me. It seems I was wrong as just before Christmas my body and I had an almighty falling out. Aches, pains, fatigue through the roof. With only days to go until the big event, I was reduced to a tired heap under a duvet.

Of course, the signs that the positivity of my last blog might be a bit OTT were there before. The cards I had made and sent in plenty of time became a sore point as in return I seemed to have much fewer cards than usual. In fact, from my entire side of the family I received just one paltry Christmas card. ONE! Nothing else from parents, brother, uncles, aunts or cousins. So thank you, Aunt Joyce for being the only member of my family to bother sending me a card. I also make allowances for my 97-year-old Nanna as it's hard for her to hold a pen these days. To the rest of my family, it's detention all round!

Now, normally I wouldn't be so bothered about who sent me a card as that's not the reason I send them. But this year, not only had I gone to the effort of making them, it also seemed to me that after a year of feeling invisible due to my illness, each card I received was some validation that I actually still exist. Silly I know, but each piece of glittery folded cardboard was a small token of proof I was there and that someone else cared. Still, I reminded myself that Christmas is about giving, not receiving and did my best to move on. After all, there was still the matter of presents and I was pretty pleased with what I'd made on my sewing machine. Plus I'd had time to make a list full of things I really wanted so what could go wrong there?

Stylish dressing gown/shades combo
What a shame that on writing that list, I failed to notice my body smirking nastily to itself in the corner. As an early present to myself, my body had developed a sensitivity to light and sound making things like reading, watching TV or listening to music difficult and uncomfortable. I attempted to combat this by wearing sunglasses so I could at least watch some Christmas telly but even then could only manage short stints. So it was with gritted teeth and a huge sense of irony that I opened my presents consisting of books, CDs, a computer game - all things I really wanted but thanks to my body had no idea when I'd be able to enjoy. Bugger. Still, I reminded myself yet again that Christmas is about giving, not receiving and prepared myself for a lovely Christmas day with relatives.

It seems that yet again my body had other ideas. The exact details of my day in retrospect resemble some sort of 1970's farce yet at the time the experience was more like a mental and physical ordeal akin to the assault course on the Krypton Factor or a trip to the Crystal Maze. It had escaped me to realise that a day spent with an excited four-year-old and all his bleepy, flashy toys was not the best thing for a person with light and sound sensitivity. Even worse was that the apparent gift of choice for both children and adults this year seemed to be harmonicas (cue much blowing and shrieking in the guise of music). Never mind, I was already prepared for too much bustle making me feeling rubbish and had asked my hosts for somewhere comfy I could go and have a lie down when things got too much. I would just go and have a rest and all would be better.

This year's fashionable festive gift
Being lovely and thoughtful, they had assigned me a bed as far away from the action as possible for maximum peace and quiet. Unfortunately it was up several flights of stairs and in the freezing attic so getting my feeble frame there was equivalent to climbing Everest but without a Sherpa. Added to this, their lovely house had high ceilings and echoing rooms which served to magnify all the noise and funnel it straight up the stairwell and seemingly into my ears. Arse. Somehow I managed to scrape through the day. The worst was knowing that had I been well, I would have had a fantastic time and would have stayed revelling and playing bleepy, flashy games long into the night. As it was, I was home by 6.30 and in bed not long after. The effect of the day on my already low energy reserves was to ensure I stayed in bed for pretty much the rest of Christmas and cancel all further plans with family and friends.

Thankfully now I am starting to feel almost back to where I was before all the festive fandango. I have learned my lesson well and shall refrain from smugness and over-positivity just in case my body decides to play another nasty trick on me. And as far as Christmas goes, if I'm still ill come December, it'll just be me and my husband at home. Although, if I'm well then who knows where I might be. I hear Barbados is quite nice...........