Day 1. Hi . My name is Faith. It took 12 long years before a doctor finally told me i have hailey hailey. During this span of 12 years , I went through numerous tests, saw so many doctors, questioned over and over about the symptoms and was prescribed tons of medicine.
Day 5: How does being chronically ill make you feel?
Misunderstood, tired, frustrated, betrayed by my body and emotions...punished for something I didn't do.
Day 2 : How has this illness effected your life?
During the earlier stage , I felt like I am in a deep dark pit , crying all by myself, feeling ashamed, apprehensive and fearful of the pain. I started withdrawing from my loved ones. But over the years, with help from some amazing people and my loved ones, this illness actually empowered me and brought about in me strength , compassion and a positiveness that just refuse to diminish.
Day 8:
With any luck at all, in 5 years time I will be able to effectively manage my chronic migraines.
Day 16
I'm not really a big quote kinda person.
I do usually tell myself before the IVs that it's going to go well to build my confidence with that.
I also found the idea of a professional patient to be really helpful when thinking about a job/career when taking care of medical issues basically has been my job. It's something I wish I had come across years ago!
Also, resting & healing or recovering IS doing something. One isn't doing nothing on a rest day.
None of those are really inspiration quotes, but are good enough for me :)
Day 6: If I could have told myself something on the first day I felt the symptoms, I think I would have told myself to push harder at first. It took years to get to a diagnosis, and maybe if I had pushed harder earlier, maybe that wouldn't have taken so long. Also, I wish that I had been more conscious at the first of when the symptoms started. I suspect that it was brought on by an infection I had when I was expecting my 12 year old, but I'll never be sure. I wish I could remember and tell when I first started feeling bad!
Day 3 : How did you get diagnosis ?
I moved quite often so I ended up seeing some new doctors who I heard about. Most of them were helpful in giving me creams to heal my skin but they never could tell me what I had and why I had such burning sensation on my skin even without and wound or blisters. Some doctors even told me I could be imagining the pain. After a number of years , I stopped seeing doctors and managed my illness on my own with the help of my spouse. I accidentally mentioned about my ailment to the skin specialist( dermatologist ) my spouse took my children to see. The specialist was very keen to hear about it. During my next bout, I went to the specialist and this wonderful person finally diagnosis me. I actually cried and thanked the doctor for finally giving me an answer.
Day 7: What was the biggest realization you have had?
Honestly, that is is ok and GOOD for me to say no and know my own limits. For a long time, I tried to do it all with my kids/church/work. I was an itinerant teacher, which means I was teaching at two schools. It caused more havok physically and emotionally than it was worth. I still have setbacks sometimes and we still haven't figured out exactly what the cause is, but definitely stress plays a part. So that may mean that I need to stay home instead of going to choir practice or visiting with the inlaws. But it is worth it in my ability to bounce back. Today, I'm feeling very tired and having some brain fog. Thankfully, the big boys have been helpful in taking care of the 5 year old and Chris is taking Isaac to his orthodontist appointment so I don't have to get out. I have rested as much as I can. I don't have any reason that I know of that today is worse than any other day...it is just how it goes. We've learned to go with the flow. The one thing that I am pretty stubborn about is trying to make it to all of my son's events if at all possible! I know that this is just a season in my life that I have them home with me, and I don't want to miss those!
Day 4 : How have your friends and family reacted to it ?
Only my spouse and selected friends know about my illness. At first , I chose not to tell other members of my family and friends cause I was afraid if they might look at me as a sickly person or think I have some contagious disease. My self esteem was really low then. I tried behaving as active as I have been and showed that I was fit and fine until it became so painful. At the beginning my spouse had to make lots of adjustments and it was pretty hard on my spouse. My spouse took over some of my duties. My children knew I was unwell and could not participate too much in their daily activities. There was a shift in our relationship. I only told one of my child years later and the news help her understand why I spent so much of my time in my bedroom.The few friends who knew about me being unwell , were kind and helpful especially when it came to managing my children during breaks and holidays. The rest of my friends and extended family thought I was some kind of a snob, a recluse and pretty rude when I did not attend gatherings and participate in activities they have organised.
I accidentally skipped a day!