I thought I might feel better after three and a half days rest but no I don’t. It is sinking in what I am dealing with here. I have two illnesses, both of them awful in their own right. Neither will kill me, good, but both will make my life extremely difficult. Today I heated up and flared up and slept and then felt worse. Now, it is 2.30am and I am just feeling ok. I should be asleep now. I have plans in the morning. Fatigue and pain are tag teaming and sending me desperately crazy. How am I to continue like this? How am I to work like this? Where is that bloody book I ordered with all the answers (or so I hope)?
I am going to think about the stages of acceptance of an illness and how I am going to rise above all this illness and disease. I had already gone through this with my fibromyalgia diagnosis two years ago. Now I am back doing it all over again with the diagnosis of inflammatory arthritis that is most likely more specifically psoriatic arthritis if you ask Dr Me. This diagnosis has occurred right in the middle of a fibro/arthritis flare, a flare that is not appreciating my new medication, otherwise known as miracle drug. So here are the stages. Reflection time.
Stages of Acceptance of a Chronic Illness
There are days when my mental health seems to be slipping from my grip. These are mostly days when my body and my mind are exhausted. The roller coaster of feeling good and feeling bad of feeling capable and of feeling useless wears me down. Some days I forget that there are good days, I forget what they feel like and I dismiss the possibility of ever having one again. On weak days I envisage a life become worthless with no way to improve. On weak days I wonder who will be there for me when I cannot be there for myself?
Every day is different. Yesterday I felt as if I was falling victim to a virus, but I suspect it was my immune system flaring at me. I needed rest. Today I am on a rest day. I don’t feel rested yet. I still feel sick actually. I wish the day had nothing in it and I could sleep and wander and draw and read and I might feel rested. Instead, I have jobs waiting for me that I carry around like a dead weight. I don’t know why I feel like that but it is probably making my health even worse to be thinking that way. The “normal” me is passionate and inspired and an ideas person. The “tired” me dislikes any commitment or any call to do anything.
I’m still not sure what is troubling me right now, fibromyalgia, arthritis, medication, tiredness, pain, sore throat, mouth ulcers, blocked sinuses, not being able to walk properly, the thing that isn’t right in my eye, real sickness, chronic sickness, being sad, having to work? How can I keep my sanity with all these issues that never go away?
All of this madness in my mind needs calm and rest.
Last night I ordered a book, Women Work and Autoimmune Disease. The book may help me work out how to control my health better. The problem is, every time I get my life at a good pace and my symptoms under control, something rattles it all and I am spiralling out of control again. I suspect I need to work it out for myself. Maybe I should work it all out and then write my own book. (Not like anyone ever did that before.)
Miracle Drug Day 1:
The miracle is that I am still alive.
The side effects are lining up to be heard. I didn’t think it possible, but if feel worse than before, especially with the pain. For a drug that is supposed to fix the problem, it’s funny that the problem suddenly got worse. I am getting weird shooting pains that I haven’t had in a while, making my whole body jump. I haven’t had them so much since getting my first miracle drug that has now been relegated (by me) to just a regular drug.
Issues have also moved into my mouth and my throat. If I didn’t know any better I’d say I was getting sick, like what others say is “really sick”, you know the type of sick that normal people get, like the flu or chicken pox or something. At this point I’m not sure if I am getting “sick”, having a flare or having side effect issues. What I do know is that I felt so bad that I decided to order regular pizza, not gluten free, and garlic bread and Coke. (Whoa, now that’s crazy living right there). I guess my body is crying out for something. Maybe an immune system boost? With pizza?
I have this pretty cool thing to teach in Art tomorrow and I don’t want to miss the day because I’m feeling crap or getting sick. And then there’s the problem of a Dr certificate, I don’t remember how many days I’ve taken without one. If I am sick I will have to go see him but I’m sure it’s really the new rheumatologist guy who I should contact if these symptoms continue carrying on. I’m just not that good at doing all that caring for my stuff stuff. But there’s no one else to do it for me.
I went to the rheumatologist today with my insides angry and worried. This is the third time in five years I have tried for a diagnosis. I have never been satisfied with the answers provided to answer the myriad of symptoms I experience. I know I have Fibromyalgia, and medication is working to minimise my nerve and muscle pains. Recent elevation of pain in my right leg in particular led me to bluntly tell my GP some weeks ago that I wanted my foot pain solved. After X-rays showed nothing, he decided to send me to a new rheumatologist. Which led me to more blood tests, X-rays and MRIs of a foot and a hand, over the last couple of weeks.
Apparently certain MRI radiologists know how to seek out and find signs of certain illnesses and you have to go to one of those places and pay through the nose to get top quality tests done. Funny, but the hospital where the rheumatologist’s consulting suite is apparently has a leading MRI department. So I have now become a regular at a private hospital on the most plush leafy side of town. I can now claim to have found a favourite 2hr free parking spot outside the mansions of a privileged few and dream what may lie within.
Anyways, the big new is… THEY FOUND SOMETHING. The radiologist report of my foot was scathing. Significant inflammation it said. After a discussion with my new rheumatologist I received a satisfying diagnosis for my symptoms… Inflammatory Arthritis.
The Doctor called me interesting, that was the word he used. I am interesting because I have both Fibromyalgia and Inflammatory Arthritis. All I could think was, I knew it, I knew it! Finally my complaints have been proven justified. I knew there were different things going on in my body. I suspect that if he said today (like other times before) that the tests showed nothing, I would have become quite emotionally distressed. Being told I have Osteoarthritis four years ago was a dud diagnosis, now found wrong. Being told I have Fibromyalgia two years ago made sense but was difficult to integrate into my busy life and it disturbed my mind a fair bit for a while. The new diagnosis made me happy. (Strange, but true). The best thing is, I can now try medication that should make a big difference to how much pain I have to endure daily. I really hope so.
Cross fingers that this is third time lucky and I never have to go through this uncertainty again.