Once upon a time, there lived a beautiful princess, who lived in a tall tower. Yeah, maybe, but that wasn’t me. I’m an ordinary person, doing an ordinary job, living an ordinary life. Notice I didn’t say I was, I still am. I want to share my story so others can see it’s not all doom and gloom, and that IIH affects everyone differently.
I was blissfully unaware of IIH, never heard of it and never had any problems except the usual niggles and headaches. I wrote off the headaches as stress and shift patterns mucking up my sleep patterns. I went for my two-yearly sight test at my opticians within a supermarket thinking I maybe needed a stronger prescription, maybe that’s what the headaches were. The optician spent ages going back and forth over my eyes with the slit lamp, not the most comfortable thing, then said I had blurred disc margins, and he would be referring me to the opthalmology department of the local hospital, and not to worry, it was just to double check.
I went home and thought no more about it, and had an appointment sent out, went along and spent some more time with the slit lamp going back and forth. the opthalmologist asked a few questions, which I answered, then I asked if this was the reason for my headaches, and explained where they were. She excused herself and went to make a phone call to the Western General hospital in Edinburgh, to speak to a neurologist, about an MRI scan. It all felt unreal, and I couldn’t stop thinking my Gran would’ve said, "see, people who eavesdrop on conversations rarely hear anything good about themselves!"
An appointment was made to see the neurologist at the local hospital a few weeks later, he did all his tests then arranged for my MRI scan, and after the results came back for that, my first lumbar puncture, where I told the neuro if I’d known I was ever going to need something like this, I’d have left that space clear to have a dartboard tattooed there!
My pressure was recorded at 26, and he told me that I did have IIH and would be starting on a drug treatment called Diamox. He did explain about IIH but I think I was in a bit of shock and didn’t retain much information. I wasn’t given any leaflets, websites, anything, just to go home, start these tablets and come back in three months.
Me being me, I came home and went straight on to my pal Google. What I found terrified me. I read all these stories about people who’d lost their vision, who couldn’t carry out day-to-day tasks and were in constant pain, and websites and chat rooms with a daily update of IIH’ers who’d died from related problems or surgery complications.
I didn’t know how to deal with it all, I live alone and am very independent, help others but never want to bother anyone to help me back. I began to worry if I’d lose my house if I couldn’t work and pay my bills, how I would cope......Then I stopped to think. That was them. I am me. I am at the beginning of the IH highway, they’re in a layby a lot further down the road.
I still work full time as a social care worker supporting adults with learning disabilities to live in their own tenancies. Some of my shifts are 24 hours long. I won’t lie, I find doing some things very difficult, and some things impossible. I feel constantly tired with a niggling headache ever present, and it takes very little effort to have my muscles burning, feeling on fire with pain. I can no longer climb a ladder, or step-ladder, I get instantly dizzy but hey! at least now I can get out of decorating my house with a clear conscience!!
Living with IH isn’t easy, it’s constantly in your thoughts whether you want it there or not. I have to plan my upcoming activities carefully and try not to do too much on my good days, because I know that the next day I’ll suffer for it. I’m at the bottom end of the IIH sliding scale, with mild symptoms compared to the other IH’ers I’ve met. It doesn’t mean my symptoms are any less real, or less painful to me, just that I am grateful I can carry on living an ordinary life.