Glimpses into living life with an autoimmune disease (Hashimoto's Thyroiditis), postural orthostatic tachycardia syndrome (POTS), postural hypotension and chronic fatigue syndrome (CFS/ME)...ideas, experiences, the struggles, and the successes!

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I love finding new worlds through writing and reading. I am excited by creating new flavours and tastes in the kitchen. I am fascinated by nutrition and healthy lifestyle choices. I adore my my dog, family and friends.

Friday, 17 May 2013

Glimpse into the chronic illness rollercoaster

I have had another week riding the rollercoaster that is chronic illness and the hunt for answers and treatment.




I had bloods done because I have been feeling quite unwell lately, and the results came back last week with a few discrepancies. My GP was alarmed at how low my parathyroid and calcium levels were. Luckily I had an appointment already organised for the following day with my endocrinolgist. He believes it may be a fault with the specimen collection, so I am due for redo blood tests today. Fingers crossed!
He also wants to test me for Ankylosing Spondylitis, which is arthritis of the spine, so I was off for an MRI yesterday, and bloods.
I have also increased my dosage of Fludrocortisone (for my postural hypotension) this week, so hopefully I won't get an increase of the nasty side effects! More bloods involved for this too!



I am feeling quite anxious about getting a long term plan together. Noone can give me an answer or a time frame, and with general life plans that keep on ticking along even when you're sick, and commitments, such as work, a forseeable plan would really help my mind set! I plan to have another chat with my GP on Friday when I get all of my test results back, and hopefully, I can get something more concrete in place.

Being chronically unwell, is such an up and down journey. Some days you feel like there is improvement, and that there is a plan and answers, and you know where you are headed. Then other days, you are left spiralling downwards into that horrible heavy feeling in your gut when you don't know what the next step is. Sometimes I just wish I had a clean cut disorder, obvious from the outset, and I could just get on with treating it. The non stop questioning cloud above me of "what if it is this" and "there is something else going on" drives me and my family insane! One minute you are thinking that you are on the right path, that you can get a handle on this, and then bam, the rug is pulled from beneath you and you're flat on your back on the ground again! I am so thankful for the people in my life who work through this with me though, and help ease away that feeling deep in my gut. My parents and my closest friends help me through so much that there are not enough words to cover how grateful I am for them. I continue in looking for answers because they are there beside me, egging me on.

It has been six months today since I have been to work. Sounds deceptively blissful! However, this has not been a holiday in the slightest. I would love to be back at work, and back in the normal flow of my life! I think that I will never begrudge having to go to work, or doing the groceries again after this!


"Before you quit because the road seems too long, turn around and look how far you've come."





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