1. Happy New Year! I don't think this will be a good year for me. I am being investigated for some other issues, and I've developed IBS from the fibromyalgia, as well as overwhelming sound, light, smell, chemical and food sensitivities. When I was in the hospital ER for 8 hours, and even the next day for 4 hours, I was just buzzing. I staggered out like a drunk. But while there, I had my ear plugs in and eyes closed. I wanted to run out screaming but I knew I had to stay. It was a strange feeling and it made me worry. How can I nurse if I'm allergic to my work environment? I will see my doctor and hopefully also the gastroenterologist. I had ignored that symptom altogether as I was dealing with so much from the Fibro already. I'm hoping to also see a doctor who studies Fibromyalgia and treats it. Regular doctors just don't get it and their eyes glaze over when you report all the new symptoms. Believe me, I'm overwhelmed and I'd much rather have my health back than to deal with this all day, every day. Women's college hospital also has a study for people with multiple chemical sensitivities. I never had allergies until this year. Now even the computer makes me feel strange. The thing that used to be relaxing is now another trigger for my symptoms. What is happening to me? I don't even write half of what is going on, on facebook because it seems like I'm complaining all the time, but if you were experiencing this for even 24 hours you'd know how hard it is. I know I look well, but it took me a week of slowly preparing the house, in order to have people over for a few hours. I wore ear plugs the whole time just to keep the noise to a tolerable level, and I pretend to be well for a while. When people ask me how I am, I just say I’m fine.
2. Discouraging day yesterday. But then I chose a word of the year and a verse for the year. See the post. Today we had a couple over for dinner. She also has fibromyalgia and her husband shared with mine what the challenges are with learning how to cope with a wife who has lost her illness, how to help her acknowledge her grief, and his as well. It helped me to consider ways to learn how to accept this new normal and try to find ways to lessen symptoms. So I made 10 goals related to my motto of Cope with Hope. It does help to have a plan, even though my underlying illness will not go away until glory.
3. Our daughter went back to Kingston today, just an hour ahead of the snow. I went for a mani-pedi, thinking it would make my feet feel better, but the chemicals in there made me so groggy, I started to nod off. I don’t think I can do that again.
4. My verse of the year:
“For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.” Romans 8:18 NKJV
I especially like this version because it doesn’t just compare the sufferings and glory, but says the sufferings aren’t even worthy to be compared to the glory. This does not minimize our sufferings, but rather gives us perspective by magnifying the glory to come. And that glory isn’t just going to be revealed to us, objectively, but in us, subjectively.
5. So thankful that I will be seeing the gastroenterologist today and I have a scope planned for Wednesday. Usually you have to wait months, but a friend’s brother is a gastroenterologist, and there was an opening this week. I’m so thankful for this.
6. Prep for the scope tomorrow. Not pleasant but necessary. The problem is there is some additive or preservative in this prep and I get the usual reaction. Then I have to go through it all again in 12 hours for the other half. I must admit I have a great fear of pain. The last time I had this scope done, I couldn’t get enough sedation and so they had to stop 1/3 of the way through. I really need them to be able to do the entire test to get some answers. In other news, I am on a few facebook pages that are support groups for Fibromyalgia related issues. I am thinking of starting one of my own, but specifically for Believers who are suffering. I want it to be in line with the motto for the year Cope with Hope. For every complaint or rant, I want to include something uplifting and praiseworthy. This is something positive I can do to get my mind off focussing on the negative aspects of this crappy disease. There are many, believe me. But I want to still praise God in the storm.
7. So pleased with the procedure today. He also did a gastroscopy along with the colonoscopy. I received enough sedation that I didn’t feel a thing and no residual pain afterwards. Thank God! I will find out the result in two weeks. Very sleepy this evening.
8. A relatively good day today. My mom helped me tidy the kitchen and clean the fridge. A big accomplishment these days.
9. My husband and I went to a movie tonight. Big mistake. It was an action movie and it had so many bright lights moving quickly. Even with my ear plugs in, it was too loud. I shut down and started to nod off. It’s actually quite scary because I can’t control it, kind of like a sleep seizure.
10. I went to the women’s meeting this morning. Not sure if it was something I ate there, but I staggered out. Then I came home to a clean house, which isn’t a bad thing, except for the cleaning supplies my husband used on the floor. More tingling and throbbing, like sirens going off. Then I nodded off, kind of like a narcolepsy. What is happening to me?
11. Church today. I am suddenly so aware of perfume. It was like a cloud hovering in the room. I never noticed it before. Even a man’s suede jacket was strong as he was talking to me. During church, even my tongue was tingling. What is happening to me?
12. Going to the doctor today, then to work to occ health and to meet my new manager, and to hang out in the hospital for a few hours to see how I react without taking a chance on getting cognitively impaired while looking after my patients. Sure I can’t work tonight. Is my workplace toxic to me now?
13. So yesterday I went to my doctor, who gave me a note for work to be off for a month. She is also sending me to a general medical internist to rule out some other problems. I also got a referral for the Enivronmental Health clinic at Women’s College Hospital but it takes about a year to get in after referral. She also wondered if my anxiety was making my problems seem to be worse than they are, which was a little condescending. I said, no, the anxiety only came after all these things started happening in my health. I just wish I could have a doctor who understood this illness and believed my complaints. Then I went down to work and talked to occ health. Then I met my new nurse manager and updated her on my situation. Maybe I shouldn’t have done that. I heard that after I left, she called the unit to tell them to replace me for three months. That’s entirely possible, as I don’t see this going away, but it made me feel hopeless and like I’ve been put out to pasture. Also I got the same response as at the doctor’s office that morning, with my blood pressure going up to 170/90 and my heart rate to 115. Yeah, my workplace is a problem.
14. I am going to look into having my house cleaned professionally, maybe even just to do spring cleaning since I can’t reach up or bend down these days.
15. I did some cleaning up of our laundry room closet because we will get it painted by an outside company soon. My days of painting are over.I bought some scent free cleaning products.
16. Ran some errands today. I seem to only be able to be in public places about two hours max. At home I’m mostly concerned about how little time I can spend on the computer in any capacity. I won a contest I entered and in another contest that I didn’t win, they said they liked my first five pages of my story and encouraged me to contact an editor/proofreader. How will I be able to do that if I can’t spend any long period of time on the computer?
17. Someone came to give me a quote about housekeeping services. They don’t use unscented products though. Who would have thought I’d be considering getting a housekeeping service?
18. Church today. So good to hear the gospel.
19. I have so many forms to fill out for referrals.
20. I am finally getting a new phone to replace my old slide phone which doesn’t hold a charge.
21. I woke up with another nightmare, but this time I knew what to do to calm myself. So happy that I have tools to help me deal with different issues.
22. Off to get results of medical tests. Torn between learning about a new problem and being told there's no cause found for my symptoms. Life with Fibromyalgia Syndrome.
23. Saw the Naturopath. So glad I did. Should have done it sooner. She spent over an hour just going over my history. So nice to be heard. She’s going to just focus on one system at a time, which is a good pace for me. I can’t change everything in my diet too quickly.
24. I had a fair amount of energy today. I baked for coffee time at church tomorrow. I did a little laundry and cooked. That’s about it for a good day.
25. Church was good today. I was happy to have been able to help with coffee time.
26. I’m decreasing the amount of coffee I’m drinking and I’ve cut out wine completely.
27. It's 3 a.m and I can't sleep because I seem to have developed another distressing side effect to a medication. It's probably caused by my sleeping pill. I won't take any more of them. I'll need to find an alternative, but for now I just want it to stop.
28. Went down to the Eaton Centre with my mom to meet my pregnant daughter for lunch. It took a lot out of me and my body was protesting for a long time when I returned, but it was good to see her before she delivers. She’s due Feb 8th but it will probably be earlier since the baby has already dropped. Being in the mall with all those scents was interesting. My tongue started tingling as soon as we got there. That seems to be my first sign, and I can only be in any place about two hours. And at lunch she put lotion on her hands and it seemed to jump across the table like a wave. Weird.
29. I started a facebook group called Cope with Hope, for Christian believers who suffer with chronic illnesses or invisible disabilities but still believe in the goodness of God.
30. Today I went to WINGS to make lunch. My mom came along with me and she loved helping with the meal. She used to work in a nursing home kitchen so she knows how to get food on the table on time. I also overestimated my ability to do it, and wouldn’t have been able to do it without her help. Also, she wants to get behind the ministry to support it, and she will help me any other time I go. Although it’s hard for me physically, it’s good for me emotionally, to get out of my own head, and help someone. Also, since it’s Friday, I got sushi for take-out. There’s no preservatives in it, so it’s safe for me to eat without worrying about getting a reaction. I can’t have Miso soup anymore though. Sad.