I was always a very chunky child, the biggest in the classroom. My younger sister was a tiny little thing and when my brother arrived, he was also a normal sized child. I was always very fit, we played out all the time, I loved riding my bike, We had a new sports centre open, and during the holidays and weekends I was always in the pool, I did gymnastics at school and after school I went to country dancing lessons.
When I hit puberty I seemed to gain about a stone each year. My family made jokes about my shape, lack of boobs, small waist and my 'bum shelf'. A dietician was especially harsh when I was 17, and my Mum gave him a few choice words and we left, slamming the door behind us.
My whole life has been about defending my eating, which I must admit, at times, was over the top and got me to where I am now..... super morbidly obese. When I did try to diet, it was slow and ineffective, you name it, I have tried it. I dread to tell you of some of them that originated back in the 70's.
I have struggled my whole life with self-esteem, and feeling not worthy. Beating myself up about not having control. I regularly had that phrase "oh, you have such a pretty face....." sometimes followed by. ".... If only you could lose a bit of weight, you would be perfect!"
I never told family/ people in general how hard life was, how much pain I was in.... I was afraid to complain as I feared the lectures about my weight and diet, I thought it was ALL MY OWN FAULT!
Getting clothes and shoes to fit that looked nice were few and far between. Luckily my mum was a self-taught dressmaker and made most of our clothes growing up. Unfortunately she died when I was only 21 so didn't have time to pass her skills on to me. I have done the best I can to look presentable, but I dont remember a time I actually felt amazing. Shoes are a nightmare! With such a large overhang at my ankles, even trainers come up too high at the back and dig in, which could be a point where cellulitis could start. I customise my own shoes, just to give them a bit of bling. But I generally have mens trainers (cut down at the back) for winter, and flipflops in the summer.
I've always had some oedema at my ankles, I first noticed an ankle cuff at age 25, I remember exactly where I was, what I was wearing and what I thought when I saw it.
My legs suddenly changed and blew up in my mid 40's, literally over a 3 day period. I kept going to the GP and saying,this is not normal, this is not what I usually have, when I put my feet up at night, this does not go away. Her response was to get me on the program for gastric surgery, tell me to keep my legs up as much as possible and prescribe diuretic tablets!!! I probably went 4 or 5 times in 6 months, saying that my legs were painful/tight/felt like an elastic sock that you cant take off.
I gave up my business and moved home to be on one level, as stairs became harder to negotiate. Then in November 2014 I saw a lady on This Morning talking about lipoedema. I knew immediately that was it! I googled for a few weeks, joined TALK LIPOEDEMA on Facebook, printed loads of stuff, took it to my new GP and left it with her to read as she obviously had not heard of Lipoedema. I arranged another appointment for 2 weeks later and she then asked what I would like done about it, as there seemed nothing that could be done. I had to suggest that she refer me to a dermatologist or vascular consultant for a confirmed diagnosis. I eventually got that diagnosis in late February 2015 at age 52..... Only 40 years after onset at puberty!
Since my diagnosis, it has given me the freedom in my own mind, not to care if people who don't know me judge, I don't have to explain it to them, I only have to be okay with it myself, and for the first time ever, I can say that I am. I've been beating myself up for being unable to lose weight since I was taken to weightwatchers at 10 years old. After years of avoiding some old friends who were keen to meet up, I took the plunge and have reacquainted with a few lovely understanding friends from my youth.
I'm not embarrassed to ask for help now, even if I do think they judge me as 'that fat lady who can't do things cuz she's too fat'. That's the narrative in my mind not theirs, and I brush it off and ask them anyway.
I am in awe of my body and how it has supported me through my life, and I have promised to treat it better. I didn't take the gastric surgery route. I've already lost a lot of weight since discovering low carb/zero carb , when I finally lose all normal fat, I will have a ton of skin that I won't be able to afford to get removed. On the plus side, my pain is now much better. I have knee-high compression and arm sleeves (which I can’t get on by myself!) and I look after my diet. Thats the total sum of the treatment available for my stage 4/5 lipo/lymphedema.
I am thankful for a few very close friends, I'm thankful that I am still mobile, I am thankful for finding all the lovely ladies at Talk Lipoedema.
Life is definitely better post diagnosis, as I am in a good place of acceptance, of me and my condition.