The Long Way Around

As of the end of May, I will have been "sick" for 12 years. In May of 2000, I originally went off work with a "bad back" and since then, I have been fighting an ever-constant battle against pain, fatigue, tiredness - and more than ANYTHING - trying to get people to either understand or even at least believe me that there is something wrong.

Originally, I was diagnosed with a kidney infection. I was exhausted from work, my lower back was hurting, and I was showing the symptoms of being sick. It was put down to many manic weeks working long shifts, that I had worn myself down, and now was ill. After two weeks, I was still ill and still in pain, and that's when things sort of slipped into a black hole.

On top of all my own medical shenanigans, I was also dealing with everything that was Bethany. I was bumped from pillar to post, had painkillers prescribed - one of which nearly killed me - I had physiotherapy which, by the physio's own admission, was actually making me worse... I had a walking stick which I hated and often "forgot". Eventually, I had an MRI and was told I had what appeared to be Sherman's Disease/Scheuermann's disease, or Kyphosis.

Wonky, degrading spine, is the laymans term.

I was referred to a specialist who took one look at me and told me that he could take out or fuse the damaged sections, but it'd be a 50/50 chance of damaging the nerves and effectively switching off my lower body. No walking, no bladder or bowel control - so I said no thanks. He then passed me on to the Pain Management Clinic who told me I needed to "get over it" and "get on with my life"


After losing Bethy, things went down hill even more, and over the years, I have noticed things getting worse, but I press on still. A while back, I changed my GP to someone a little more local, and he has been brilliant. Not satisfied with any of my original tests or diagnosis', he has had me Xrayed and tested from head to toe, and now, almost twelve years to the day of originally going off sick, I have an appointment to see a specialist of Chronic Fatigue Syndrome, or ME (myalgic encephalomyelitis)

I got the letter, and upon seeing that I was finally getting someone, I just wanted to burst into tears. Finally, someone would look at me and understand where my head is, how my body ceases to work at random, how my brain just shuts down mid-sentence, how I can't start new books as I can't follow the storyline...

The department has a pain management specialist, a therapist, physiotherapists...

I am nervous, but happy.

It's been a long road, but finally I think I can see a light at the end of the tunnel to getting the help I need. Most of you won't know what it's like to have someone look at you or make comments about your health. Being told to get over it, being looked at like I'm a dreg of society, being spoken to like I am attention seeking... I hate it. I want people to understand how I feel after doing normal, regular things.

I've had a busy few days, and as of bedtime last night, I was worn out. I had horrible dreams all night last night, Kellie left me because of how crap I am at everything, she couldn't deal with my pain, couldn't cope with me not doing anything due to my energy levels... But the kids hated me for the same reason, and all four left with her too. I was stuck in the house, alone, no one to talk to, nothing to do, no one to sit with...

I hate being like this. I wish I could be fixed.

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One Response to “The Long Way Around”

Sage said...

{{hugs} am her for you xx