I left my
house yesterday to be greeted by a neighbour “You’re looking well enough!” I’m sure he meant no harm but it is so
frustrating living with illnesses that are invisible. There’s a huge difference between looking and
feeling well.
How does he
know how I feel? That my vulva is sore, that my left side woke me early. Yes, I
have pink cheeks, doesn’t mean that I’m not in pain and struggling!
Struggling
just to wear normal clothes for example. When I’m at home I wear maternity
bottoms. I have two drawers worth of pants, plain white pants which the elastic
is quiet baggy and then the other drawer full of pants that have two cuts in
the elastic so that they don’t put any pressure on my tummy. Depending on the
level of pain in my tummy will depend on which ones I am wearing. For the last
3-4 years when out of the house I have been wearing high waisted leggings with
no elastic in the top as my tummy pain doesn’t tolerate anything else. With
them I wear loose fitting dresses, again for the same reason.
But I look
well! Being sick has completely taken over my life. So how do you live with
that?
I’m sure that people don’t mean to make life more difficult by making you
feel misunderstood but the bottom line is for me this makes living with these
illnesses more difficult. I suppose the saying is true that unless you walk a
mile in someone else’s shoes you don’t know what it’s like for them. I’m so grateful to have my Endo and Vulva
Pain friends via the blog, Endometriosis UK, LVPSG and Happy Pelvis e-mail
group. You really do keep me sane. You know how it is living like this. You
just get it.
How do you
cope with it?
Last week as
with every month, I was stuck in the house due to so much pain from
Endometriosis. Do people need to know this, do they even care? Do we just
accept that this is just the way it is?
If the shoe
was on the other foot and I knew nothing of living like this, would I be
telling my neighbour how well they look. Is it meant as a compliment?
Any
thoughts or experiences to share, I’d love to hear.
Lily Lou x
You really hit the nail on the head. Love this post! Very bad PFD, VVS since 2002. Everything is painful. I'm a size 0 but have size large pants for in the house. I'm in the house 95% of the time. It's dreadful. I'm only 29. People were justi telling me yesterday how cute I looked. If they only know what it took for me to dr dressed like that trying to sit on my bent leg to avoid the hard wood chair. Because of the severe constant bladder pressure, I have no even attempted kids even though I've been married 6yrs. People are starting to wonder. Oh well. I just wish I could feel better.i just started a program by dr schubiner called unlearn your pain. It's based on the teachings of dr. Sarno. I would have scoffed at it year's ago but I am desperate & will tr anything.
ReplyDelete*try anything. Best of luck to you...to all of this. Hang in there :)
ReplyDeleteM in ny
Dear M in NY,
ReplyDeleteI'm really sorry your having such a bad time. It sucks doesn't it. I'm really interested in the program by Dr Schubiner. I have read Dr Sarno's book and I agree that its worth trying everything. It is very interesting. I have started working with a Pelvic Pain Coach based in New York and its based on these principals.
I would be interested in how you get on. I will be blogging about my experience with my pain coach if you are interested in reading.
Keep in touch if you would like
Take great Care and never forget that some people really do understand
Lily Lou x