Wednesday, September 19, 2007
Ch, ch, ch, changes
This print hangs on my bedroom wall, there to remind me of who I am. It was shot about six years ago. Since then my appearance has changed so dramatically so many times that when I look in the mirror I no longer recognise the face let alone the body that I see looking back at me. Curly hair. Brown eyes. Those have remained constant. The only ones.
I'm not sure when it was, maybe four years ago I started to gain weight. Unusual for me, someone so noticeably petite and conscious of appearance. In the 'real world' I'm that person. The one who eats a constant stream of junk food. Who's friends find it hilarious. Who strangers see fit to make bitchy remarks about. Loudly. Audibly.
So to gain weight was unprecedented. Particularly at a time when I wasn't exactly eating. Anything really. EDS affects the inside as well as the out, bowel and bladder no exception. I was vomiting on a daily basis. At times uncontrollably. Projectile. But gaining weight. Initially on my breasts. Then my stomach. More and more swollen. To the point that friends and family thought I was lying to them and concealing a pregnancy. I wasn't. I hadn't had a period for four years.
I stayed uncomfortably swollen for months, the heaviest I'd ever been, sick, miserable and eating next to nothing. Then seemingly as suddenly as I'd started to gain, my weight plummeted. I went from an DD cup bra to an A cup pausing only long enough to buy one C cup one the way down. For someone with a wicked underwear addiction that was probably the most surprising thing of all.
Being that thin was horrific. (the photograph was taken once I'd started to gain weight) Why anyone would aspire to it I'll never know. I'm always cold but that was something else. I later found out the few people around me hadn't expected me to live through that winter. I couldn't sit in the bath without extreme pain I was so thin it bruised my arse. I was permanently on antibiotics so vulnerable was I to infection. Tearful. Constantly Confused. Frightened. Disorientated.
On the rare occasions I went anywhere a disturbing amount of women told me how fabulously thin I was. How great I looked. How jealous they were I could be that thin. Others continued with the usual bitchy comments delivered in tones meant for me to hear. It seems so thin you might die truly is a look women and girls these days aspire to. Think those who are thin have some sort of secret they don't. I'll let you in on it. It's called genetic disorder near death experience. Women, get a hold of yourselves. It's not big, not clever and it's certainly not attractive. I usually get more than my fair share of male attention. When I looked like that I got none. Unsurprisingly. Men do not find the 'I'm so thin I'm about to die' look attractive.
Last time this started to happen I hadn't yet been diagnosed. It was of course put down to my amazing ability to make my body do almost anything in the name of attention seeking. I did once comment that if I were able to control my body in the way alleged by so many doctors I would be making a fortune from it rather than 'seeking attention' from what were typically overweight and unattractive middle aged men.
After I was diagnosed and was lucky enough to be taken on as a patient by one of the superb consultants who still looks after me now more sensible reasons than attention seeking were looked for. Particularly when this consultant saw a photograph of me taken only a couple of years previously and asked who it was. Could not believe it was the same person. A variety of tests were done. Ideas thrown around. One hormone level was high. That explained the lack of periods and rapidly growing breasts. The vomiting and swelling we figured out was due to internal laxity. The digestive system after all is a type of muscle (I'm sure it's more complicated than that medically) but, in my case it's lax and weak. It doesn't like to work. Put anything inside that requires my stomach and bowel to actually make some effort, it gets upset, throws a hissy fit and goes on strike. Swells further and further out. Both my GP and consultant have double checked for an extra heartbeat when this has happened as I go from flat stomached to looking pregnant. Within minutes. Just to be sure. They only ever hear my heartbeat.
Eventually, gradually I gained weight. A long hard battle fought to reach a healthy weight. It has taken me three years. That makes it sound simple. It was anything but. (taken earlier this year)
Now after all that hard work I'm concerned the cycle may be starting again. My stomach is frequently swollen. My breasts have enlarged at a worrying rate. My periods regular but lighter than they were. I can't stop eating. I am constantly hungry. I feel as though my body is playing a sick joke on me. I can't see how I could be pregnant. I wasn't pregnant last time this happened. I have that same strong sense that something is about to change that I felt last time. I'm just hoping that this time it will be a positive change.