I have a dream.. I dream of the day I can sit down for breakfast with my family and enjoy cornflakes with banana on top and ice cold milk, without being in agony for days after. It’s a pretty simple one isn’t it? Some of you may have done that this morning.
My dreams don’t just stop at my vision of my ‘everyday breakfast’ and they are very different to the dreams I had even 4 years ago…
I dream about taking the girls strawberry picking, to the beach, or best of all to our pool in the summer time.
I dream that I’ll be able to play outside with my daughters and watch them play sports, and not feel like I’m being strangled due to the heat on my brain. I dream that one day, I can lie down at night and not have pain in my head, just from just lying down.
I dream that one day I can enjoy a birthday meal with my husband for my favorite fondue or sushi. In fact, any meal out at all would be wonderful. I dream I could buy even a couple of things when I’m out that I could eat, without needing to go home and cook them. It would make my life so much easier; I currently cannot go anywhere without the food and water I need, so traveling takes a lot of preparation.
Some of the things I dream about now may sound trivial to most people.. Some may even think or even say, ‘Just to be grateful for what you do have‘. I know I have a lot to be grateful for; a loving husband and family, supportive friends and the most wonderful daughter anyone could ask for (I mean look at that face, her smile is the best medicine ever!!). Trust me, I am grateful for those things, I really really am. They keep me going every hour or every day and the hope of my dreams coming true keeps me positive when I am having harder days. Currently I am pregnant with my second girl and though this pregnancy has been hard, knowing she is doing well, is all the incentive I need.
It is hard for me to even remember what it was like not to be in pain and to be able to do regular things, eat normal things and not experience severe pain as a result for days after. Even going outside in the sun for 10 mins or eating a spoonful of icecream leaves me in agony for hours… It’s not that easy living in the ‘deep south’ of America!
The scary thing is what it will take for me to be able to do the things I dream about again, and why I have tried to cope this way for as long as I have… Brain surgery of one type of another would be required to be able to go out in the heat, do activities and eat things like cheese, milk, bread, sugar, salt and veggies like carrots or sweet potatoes. For me to be able to eat fruit, drink tea, have pepper or spices and drink (other things other than water) and not be in pain all of the time however would most likely require pretty risky major internal surgery.
[I was officially diagnosed with Intercranial Hypertension and Interstital Cystitis the past year after suffering a spinal leak from a cortisone shot in Sep 2011. These are two incurable diseases.. Surgeries can help alleviate symptoms but not cure them.]