Strong But Tired

"Your Illness does not define you, your strength and courage does"

Having not blogged on here since April, I felt it was about time for an update.
In my defence, I've been very unwell and the last thing on my mind was writing; However, I have remembered my reason for writing my thoughts down and have decided to try to put into words what has been happening thus far.

To summarise and refresh, I had a full hysterectomy in 2010. I wasn't quite finished having babies but the need to be around for the ones that do have outweighed the need for that to have more. The nastiness found in the lining of my womb, my kidneys, my bladder, etc confirmed this was the right decision. However, it had already taken it's toll in the way of messing up my immune system and I contracted a very unpleasant dose of sepsis in 2014. I never fully recovered, and after various episodes of passing out, dizziness, unbearable pain, and general confusion I decided to go the the doctor. My doctor, in his "wisdom" decided that as I have had depression in the past, this was some major manifestation of said depression and told me to take lots of anti depressants. I knew this in my heart to not be the case, and persisted with him. He then decided that I was in need of a mental health evaluation. I agreed to this even though it was against my gut feeling.
Off I went and long story short the psychologist has stated that I am depression free. I later found out that my doctor also wanted me tested for hypochondriac syndrome, and munchausen syndrome. Both of which came back negative. To feel this ill and not have people believe you, especially in the medical profession is the worst feeling. I continues to get worse, but my fight against the doctor and also the government is still ongoing. I've had no financial assistance sine April 2016 and continue to live off the goodwill of my family.
So fast forward to a few weeks ago when I'm sitting in the neurologist's office and I'm given the diagnosis of Fibromyalgia and neuropathy. A life long debilitating disease that has all of the characteristics of MS, but thankfully my MRI scan came back clear.
To add to it all, I have stage 4 kidney disease which means I have to be careful about which meds I take.
It's all a bit much to take in. I've been told to source a wheelchair, organise disabled parking and push for disability payments.
Fibro is an autoimmune disease. It effects every part of every inch of your body. Your muscles, your joints, your glands. I am in pain, 24 hours a day, 7 days a week. I can't walk far and on the days I do go for walks the pain during and after is unbearable. My hands have become swollen and twisted and painful. I get confused, forget conversations I had five minutes ago, repeat myself constantly. There are times I cry with pain and frustration and days I can see no end in sight.
Some days when I feel up to it, I put on the face and venture out into the world. I face prejudice and disbelief because I "don't look sick", and have been accused of pretending for sympathy, being drunk and alcoholic and being lazy. I gave up drinking over a year ago as my body simply just couldn't handle it any more.
Through all this, I've kept my business going, kept my arsenal forum writing up to scratch and most of all kept myself from sinking into self pity. Yeah there are days I feel sorry for myself. I'm not going to lie, it's very frightening and daunting when I think of the future.
I feel sorry for my daughter Anna though. She is trying to work two jobs and look after me. She's not well herself and we both get so overwhelmed sometimes.
I will continue to do what I can, to keep chipping away at life as best I can. I've a lot of hospital appointments coming up including one for my blood disorder in November so who knows what that will throw up.
There's plenty of people out there that have things worse than me. I'll just keep going, and keep in mind that I am still me. I was me before Fibro, and I'm still there, though I might be buried a little deeper.


SharonAnn