When people ask " Hi Cherie, how are you?" Of course I politely reply "Good thanks".
Obviously people would think I'm socially inept If I was to really say how I'm feeling!
I got asked this question this morning and put on my brave face... A few minutes later I got in the car to come home from school/kindy drop off and burst into tears!
Today I'm feeling angry. It started with Harry screaming and crying when I put his creams on. He then wanted to be cuddled up with blankets being comforted by me. I just couldn't this morning, we were already running late, lunches needed to be made, boys needed to be dressed, breakfast to be made. I didn't have time for him and this upset me. On the way to school Harry screamed all the way there. I turned the radio up loud to drown out the noise, however his cry is so high pitched it didn't work. Poor Oscar and Charlie sitting next to him not being able to do anything while their wee ears are getting damaged by the noise level!
I'm angry and upset for so many reasons. I feel like Oscar's childhood has been robbed and that he is only just getting it back after so many years of suffering. I'm angry that not one specialist has believed us when we have said Oscar doesn't have 'normal' eczema. He was more like a burns victim! I'm sad that many more children..and adults will have to go through the pain of TSW. I'm infuriated with the pharmaceutical companies- they are the only ones winning! Their profit margins from topical steroids must be huge!! I'm sick of copious amounts of washing every day. At least three or four loads daily of sheets, towels and clothes. I get upset every single time I have to pin Harry to the ground and shove syringes full of supplements into his mouth while he screams and wriggles.
I miss having a low stress, fun family life. Having two children with TSW is consuming. Our whole life 24/7 revolves around their care. I hope I don't sound like I'm being selfish but I barely have energy to drag myself out for a walk. It would be nice to have the energy for a little bit of me time.
I miss my husband terribly. We seem to be living seperate lives. We have slept in seperate beds all year and we are lucky if we get to sit down together for half an hour in the evenings! We are both so tired this week. We are living in a crazy haze of survival. I'm angry that our grocery bill is astronomical with special foods for the boys plus supplements and creams for them on top of that.
Now imagine if I said all this to the next person who asks how I am! Haha. I know it's not socially acceptable to really tell people how you are feeling and that when people ask It really is a form of saying Hi.
Today this is really how I am feeling. No sugar coating. I started this blog in the hope of perhaps helping someone else going through this one day. It needs to be real to bring awareness about TSW and how it can impact on people/families. We are in the midst of caring for two gorgeous wee boys suffering with Topical Steroid Withdrawal. Did I expect it to be easy? certainly not. Will it be worth it.. 100%YES!!
One thing I am so grateful for is finally knowing about TSW. We could have been going on like this for years with no explanation as to what as happening with our children other than being told they just have eczema.
I look forward to a future of happy little boys who don't itch and scratch all night long, a future of a happily functioning family.
No comments:
Post a Comment