Today I have been thinking about some of the challenges being trapped in a fat suit, presents.
1. Getting in and out of our family car (which happens to be very low to the ground)
A simple thing that people do every day, sometimes many times a day. For me, going anywhere in the car, requires a lot of mental motivation, simply because I know it's going to hurt. Not just a twinge, actual breath sucking, teeth gritting, eye watering pain. The twisting, the lowering, slipping and free falling, the getting out (I end up getting in and out multiple times because I have a 2 year old who drops super important things like his dummy or bag of chips or cant put his own sunglasses on etc)
That's just the physical side, then I need to mentally prepare for the humiliation and prejudice that comes with having to try and get in and out of the car- in public.
I am 38, the average 38 year old does not have trouble getting in and out of their car. However the average 38 year old weighs anywhere between 70-80kg and I weigh twice that. If you count that the largest proportion of that weight is carried below my waist, you can imagine there are some mobility issues. When people see me struggling to get in and out of my car, their first assumption is that I am just a big fatty who should lose some weight so they can get in and out of their car properly. I get that, but the thing is, while I am a big fatty, if I could lose this weight I would have. People who have Lipedema, regardless of dietary restrictions find that they are unable to lose weight of the Lipedema affected areas of their body. Even exercise does not reduce the areas and in some cases makes the pain even worse.
I can't explain to people that see me and make assumptions, that the reason I look and act this way is because of a medical condition, and even if I could, it's not everybody's business. That doesn't stop me feeling judged, misunderstood and wrongly accused every time someone stares, shakes their head or obviously looks away in disgust. I am a strong woman, but being under constant scrutiny is hard. It leaves scars, and they are what I revisit every time I have to drive my car.
2. Shopping with a 2 year old
Two year olds like to run. And hide. And lie on the floor. And throw things.
The biggest challenge I face shopping with my 2 year old is the road danger, this kid is quick and still learning about staying put when mum tells him to. I have had other members of the public have to grab my boy in order stop him going on the road. It's so bloody scary, and completely humiliating. Honestly, I don't think it is that safe to take my boy out on my own because I really can't move fast enough to catch him. but I don't have a choice. I still have to do things in town, mail to post, bills to pay, groceries to get. I have been using the pram but my boy is tall and he is actually too big for it. His little feet drag on the ground.
3. Housework
When the only time you don't feel pain is when you are not moving, it's not exciting to do housework. BUT it does feel great to have a clean and tidy home.... I have to do my housework in spurts, 10 minutes here, 15 minutes there, otherwise, the pain is too much and I seize up. I mean like actually seize up where my muscles wont respond to my minds commands. When this happens, it's difficult. My hands wont type or get a firm grip on anything. I get permanent pins and needles and that tingly feeling down my arms just from pushing the pram or holding the steering wheel in the car. My legs will not lift high enough to step over things even though my brain is able to judge the distance required accurately, my muscles do not obey my brain message and I trip over things. I can't open lids on anything. sometimes I can't use scissors. I think this is due to having a secondary RAD (rare adipose disorder)called Dercum's Disease. If you have Dercum's you get growths of fatty lipomas all over your body. I have a large lipoma in my armpit, near my breast. I believe it contributes to a large portion of my arm probs, pressing on the nerves, restricting lymphatic flow and causing numbness and pain at the same time.
My best kind of house work is anything I can do - standing upright - like dishes - I can do that for 10 or 15 minutes before my sciatic nerves are screaming. then I take a break for a bit and get back to it. My worst housework is the kind that involves bending, twisting or getting down on the ground. I can do all of those things, but they are EXTREMELY PAINFUL. I have lipomas all down my back and sides and my legs and hips a badly affected by lipedema and especially my knees which make pivoting difficult.
4. Sleeping
Sleeping is not pleasant for me. It hurts to lie down for long periods of time, it is difficult to turn over in bed, the weight of the blankets hurt my feet and legs. I also require a foam ramp and a CPAP machine to breath as I have severe sleep apnea. When I wake up every morning, I can hardly move because my body has seized up overnight. It takes a while to get going.
