Last week I blogged about geeing up to go for a swim.
My post was positive, proactive and enthusiastic.
My swim was not.
Knowing that I was going to experience some negative feelings - (exposing my dercum's and lipedema affected body in public for the first time in many years can cause a few freak outs) I invited one of my closest friends and my darling sister in law who is also one of my closest friends, as support people.
When I got there, I could feel the panic rising. The facility was awesome, warm therapy pool, ramp not stairs, but the anticipation of having to take my dress off and walk into the pool in my swimming costume... OMFG it was terrifying.
No one around me made fun of me or made nasty comments - but my mind had a melt down and I felt so sad that at some point I had learned to hate my body. I just sobbed and backed away from the pool.
My bestie followed me into the toilet, while I stood at the mirror and bawled my eyes out like a big baby.
The logical part of my brain was screaming - it's a piece of fabric - weather you take your dress off or not - you're still fat underneath - why are you freaking out? Just get in the pool.
The emotional side of me was screaming - yes but I am deformed and grotesque, and my dress is the thin veil that conceals that from the greater world, from eyes that I did not invite to see me, eyes that don't know my back story, or how hard I have battled this.
My sis in law, took the next support shift, and she walked me through the entrance to the pool, and helped me to get my dress off and put my glasses away for me. I was in. I was still sobbing. I was still feeling every self loathing feeling I have ever felt.
I headed towards the therapy pool, still sobbing and feeling angry, so angry, all the feelings of self anger and punishment surfaced in me. I was horrified to realize so much of the pain and punishment that I have experienced over my life was self administered - not self instigated - but performed by myself. I was shocked to finally understand at some point someone had programmed my brain with their comments and directions to whip myself because of my "fatness"
That is so sad and so sick.
When I finished my pool exercises - I didnt feel triumphant, I didnt feel like a champion. I felt like a fat broken cry baby. I fell like a giant wet disgusting blubber chunk.
Then the next wave of discomfort set in.
It clicked in my brain that now I have done this once, I have to continue to do it. 3 times a week. Relive the self loathing 3 times a week.
Any pleasure I felt - physically, with the water massaging my body, and the free and near weightless movement while I was in the pool was blotted out by my emotional anguish. I had to put on a fake happy face for my son.
How do I feel about my next swim in two days time? I am refusing to think about it. It hurts too much.
One thing I have discovered, is how hard it is to change your mindset regarding investing in yourself. Recently I have been looking at options regarding getting the best care and working out the best management plan for chronic pain, Lipedema and the mobility issues that come with it, and Dercum's Disease.
An opportunity has become available to go and have an appointment with one of the worlds leading specialists in Rare Adipose Disorders Karen L Herbst. She will be visiting Melbourne, Australia from the US, in October of this year to see patients and be part of a mini conference. I would love to get an appointment. To do so it will cost me about $3,000 in air fares, accommodation, and conference costs.
What I am struggling with is the head shift that is required to allow myself to spend that much money on myself. To clarify why, if you consider that for the last 30 years all I have ever heard about improving my health has revolved around "If you would just exercise more and eat less, all your health problems will go away" and "If you're not losing weight you're not trying hard enough with your diet and exercise - you lack will power and commitment" Now with a diagnosis that finally confirms this permanent fat suit is not my fault I am supposed to be able to just find a way to stop the guilt and in adequacy and self hate and stop punishing myself for not being able to be thin.... its not as easy as it sounds.
Where do I find the courage and desire to invest in myself?? Where do I find the courage to ask for help? How do I learn to trust people with my physical problems when I have been vulnerable to so much judgement for so long?
I realized I had been fighting the inner voice that kept saying, "you will probably end up not being able to walk or take care of yourself because you don't deserve help. You're just a fat pig."
Without this Lipedema diagnosis, a large part of society would be saying this to me, not just my inner voice.
So how do I learn to love myself enough to invest in myself, when I have been taught to hate myself for most of my life. My body will always be outside of societies norm, from an asthetic perspective I am disfigured for life. How does one find self worth without a physical body that looks normal? In a world that places so much emphasis on looks?
Every time I have to pick the most sturdy piece of furniture to sit on or sleep on for fear of breaking it. Every time I have to be cautious in using peoples toilets, in case I break their toilet seat, every time I have to excuse myself from fun activities because I am too heavy to participate, I love myself a little less. How can I change this? If I am every going to be able to do what I need to do to be as mobile and healthy as possible - I have to find a way to stop saying to myself - you deserve to die and find a reason, from somewhere to convince myself that I deserve to live.
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.
