Insomnia sucks!

Insomnia does give you more hours in the day, this is true. Unfortunately those hours are grumpy. It's 00:21 and I'll wide awake after only 4-5 hours a night for the last fortnight or so. Brilliant minds may flourish on this little sleep but minds like mine tend to head more towards psychotic bitch from hell.

The world seems to be populated with annoying stupid people. They drive stupidly, they stand around stupidly, they get in my way stupidly. I have only a modicum of patience and it is used up by the women I visit so the world is at my mercy.

I'm planning a hostile takeover of an event and really got peeved with someone who was trying to rally support for it. It wasn't the actual act of trying to resurrect it, I agree entirely it needs an overhaul. It was the way her plea was  worded and laid out. To be taken seriously you need to state your case in a direct and eloquent manner. Perhaps and maybe have no place. And poor grammar is not an option. Really, the sooner people give in and let me rule the world, the sooner there will be peace.

The problem with insomnia is it really mucks with the brain. I've been trying to write a proposal, a short story and edit a newsletter and words just keep failing me. I have not let that stand in my way and have been inventing new words for use when the correct word doesn't pop to the front of my brain. They are simply placeholders but some of them have been really good potential words - again, once I take over the world.....

They say older people need less sleep. I'm wondering if it's just a line that's been fed to them. Perhaps the reason so many older adults are so grumpy is they are chronically overtired. Maybe old people need more sleep - like babies. It would fill some of the hours and give them an excuse to avoid basket weaving classes.  They could probably do some yoga because if the room was warm enough they could have a nap.

The funny thing is so many of my clients are complaining, as many new parents do, about the fact that they are hard pressed to get 3 hours straight sleep. BUT between 10 and 7 they may get 7 hours! I get 4 and have to function as an adult and not moan. I can sympathise in my head but on this little sleep, it's not a sympathetic voice in my head!

It's times like this that the wonders of pharmacology do sound nice. An imovane now and I could be off in lala land.  Really clever medication! They make you do what your body/brain is refusing to do. One minute your brain is contemplating Archimedes' theorem and the impact on how much ice cream to soda you can put in a spider and the next zzzzzzzzzzz. So clever and much safer than laudanum!

Guess I might as well head to bed, at least it's warm and I can play bejewelled on my iphone!

My history

Here is a brief rundown of the past events that are now setting off alarms in my poor head.

In the mid 90's while training as a midwife I had an episode that lasted two weeks or so where I developed very slurred speech and had difficulty moving my tongue. It was investigated by physical exam and I was diagnosed with a post viral syndrome and sent on my way. Since then I frequently felt less mentally adept and sometimes quite foggy.

I started to suffer from an overactive bladder - the key in the door syndrome - when you gotta go you gotta go.  But after 5 children the pelvic floor probably wasn't the best. I recently addressed this through medication. Medication I initially suspected caused the blurred vision - it dries your mouth out so maybe it dries your eyes too.

I started to get quite achy about 7 years ago and worried that I had arthritis. A visit to a specialist left me with the diagnosis of Fibromyalgia which I have basically treated by ignoring it! I was achy, had brain fog and my hands felt tight most of the time and I am always tired.

When I was pregnant I developed Cholestasis of pregnancy and had many blood tests. One thing that showed up was the presence of Epstein Barr Virus antibodies.  I had glandular fever as a pre-teen following on from mumps and the mysterious post-viral syndrome so this is not surprising but many people with MS have higher than normal levels of the EBV antibodies.

Six years ago we moved to a new house with stairs. I slid on the stairs 3 times in quick succession - damaging my tailbone quite significantly. It became a major mission to descend the stairs and I still have to really concentrate.  Not helped by the removal of the stair rails for DIY.

I have often choked on my saliva and taken food down the wrong way. It's a transient thing but worried me enough to get a referral. Of course the day of the investigation it showed little more than a slowing/pouching at the back of my throat but nothing going into my lungs - I could have told them that without the machine! So I continue to choke and sometimes spaghetti dangles into my lungs and I cough madly and sometimes a small amount of food feels like (and I'm convinced it does) gets into the top of my lower respiratory tract and I choke and cough and feel like my lungs are seared.

I have irritable bowel syndrome though it's not been too bad for a few years - could be learned management!

I knew fibromyalgia responded well to exercise so I pushed myself to run.  I was enjoying it and getting quite a bit of zip when one day I managed to slip off the kerb (bit like stairs!). My foot felt like a knife had gone through it. This sent me off on a whole nother tangent - (ACC blaming my split perineal tendon on degeneration rather than accident because I'm so old! No payment for surgery so it's been two years and it is finally coming right due perhaps to the Steroids).

So running was pretty much out the door. But I could still walk my dog......until about 5 weeks ago when I suddenly struggled to make it up the driveway and could only hobble 300m down the road. It was a combination of weakness and pain in my right hip which has been part of my life since I was a teen.

The off-shoot of no exercise was weight gain! So I started a weights program which has helped a little but my lifting weights have dropped significantly. Where I could do 15kg per arm I'm now struggling with 5kg! I'm also too damned tired!

There have been other things which I was really not aware of until I began reading a book today and thought "Holy shit! That's me!". I 'see' sounds - I get bright flashes with loud or sharp noises.  When Simon gesticulates with his fork I feel like it is grabbing my eyes and pulling them. I can get vertigo on very small heights (anything more than 3 steps up a ladder is no go! I splash cups of tea and coffee all over the place.  I love hot baths but my legs get really tired trying to keep me from slipping under the water! After 15 minutes all the fun has gone out of it. It is also pretty hard to keep the book from falling in the bath (Can't have a bath without a book!) as my hands feel swollen and start to ache.

I can't keep my legs and arms still for more than 15 minutes - try 45 minutes in an MRI machine without going insane - I cried and would have screamed but I'm too socially constrained.

So I have a whole hodge podge of symptoms which have been investigated in isolation and never really linked.

Maybe a neurologist will pull it all together but based on my past experience I'm really not holding my breath. If I wasn't such a sceptic I'd really have little faith in medicine! I'll tell you one thing if I find out I have MS and I'd have had a better prognosis if it had been investigated more fully at the 3 crucial presentation points I will be up that postal tower pretty damn quick!

Why I changed the direction of my blog.

On the 10th of July 2011 I woke up and couldn't see properly out of my left eye.  The vision was really blurry and dark.  Within an hour it came right. The next day it happened again and lasted a bit longer.  On the Monday it lasted all day but the blurry area became narrower as the day progressed. On the Tuesday I made an appointment with my optometrist because it just wasn't right.

The optometrist carried out a battery of tests including peripheral vision testing, colour recognition and the usual acuity tests. Based on the results she told me to front up at the Eye clinic at Greenlane Clinical centre the next day.

The clinic opens at 7:30 but I couldn't make it until 8:30 so faced a bit of a wait. That was fine, I had a book. After about 3/4 hour a nurse called my name and took me off for triage. It then transpired that the Optometrist had written the date on her referral as 8/7/11 so they thought I wasn't particularly compliant. After explaining that 'no, I actually saw her at 4:30 yesterday' things changed.  I was placed in the acute waiting room - a dimly lit area. 

After a short wait I was called by a Reg who repeated most of what the Optometrist had done but did mention that optic neuritis which was what I had can be associated with MS!  Normally this wouldn't be a biggie but my past clinical picture made alarms go off in my head (I'll go over this in my next post). 

A HS came in to apparently take my history as I was headed for the Eye Ward for possible steroids.  Near the end of this history taking another Reg came in to explain a bit more. She skirted around MS but I told her the previous Reg had mentioned it (I'd also googled on my iphone in the interim!). She then explained that Steroids can speed up the healing of my eye - it would also heal without them - and may delay onset of MS in people developing it by 2 years. So did I want to proceed with the steroids - that would be a yes.  The next suggestion was an MRI. I wanted as much information as possible  so agreed it would be a good idea.

So I was admitted to the ward on the Wednesday for IV Steroids - only to discover it was 3 days worth! Oh well a change is as good as a holiday so I settled in.  The steroids were foul. I had nausea, a metallic taste in my mouth, insomnia and general malaise.

On the Friday my MRI was booked. This was one of the most horrible experiences in my life. It was not the small space that caused me distress, it was the being totally immobilised and bound across my chest so tight it caused paroxymal coughing which naturally made imaging difficult. I had to keep my eyes closed but my eyes tend to dart about even when closed so again I was not popular. The whole torture took 3/4 hour and if I never have another one it will be too soon.

I returned to the ward for my final dose of steroids and my discharge. I was given an appointment 13 days later to come back.  When I said it seemed along time to wait to find out if I had MS, the nurse said there was no mention of it in my notes - you'd have thought that would have raised a flag but no. I was sent home on 16 days of Prednisone - 60mg for 14 days and 10 mgs for 2 days. 

The oral steroids were only slightly better than the iv. I've been not particularly hungry (a plus), grumpy, barely sleeping, swollen and foggy. It does seem to have helped with muscular pain but my eye stills feels like there is a smear on my glasses - but I'm not wearing any.

So today, 13 days later I returned to the Eye clinic. The wait wasn't too bad as I had an appointment. I was seen by another Reg and took this as perhaps a good sign because surely if there was anything bad on the MRI the boss would be seeing me. She did all the tests and then said she was going to discuss it with the Consultant. There was a long wait and then the consultant came in.

She explained that things seemed to be improving - I see dark orange rather than light orange for red out of my right eye now. My vision had supposedly improved but that is probably only due to the fact I had my contacts in rather than my not-good glasses.

"So, do you have any questions?"

"Ah, yes! What did the MRI show?"

"Well, it showed inflamation of the optic nerve and there were a few plaques.  It means you are likely to present again with optic neuritis"

"By plaques do you mean lesions?"

"Yes but you haven't got any of the other signs of MS"

"You mean like weakness and foot drop and episodes of slurred speech?"

"Ah yes! Do you have those?"

"Yes, I had slurred speech years ago and I had weakness and foot drop prior to the neuritis" (this had all been told to previous Regs and HS)

"Oh! Well we had better refer you to a neurologist. But we won't need to see you again"

And that was it! Out into the cold with no idea when I'd have an appointment or what to do if I was concerned!

The documentation must be terrible! I can see how people slip through the cracks. I could have presumed the MRI showed nothing and gone my merry way.

So I am now blogging to document my journey - be it to the world of MS or status quo.