A Long Time Coming Part 1

I almost couldn’t believe it when I sat down to work out the times and dates of my personal story for a talk I was doing on Health & Nutrition… I counted the years again, goodness me! Over 20 years! Wow it’s almost unbelievable that it was that long, but you know, looking back, I count myself extremely fortunate, to have had the journey i have, and to have been able to learn from it, as I know of others who have suffered longer, without ever finding a way out.

Over the last 20 plus yrs or so I’ve endured an enormous amount of pain & suffering, to varying degrees from all kinds of health issues, illnesses and injuries. For soo many years I was at a point where I really didn’t have any quality of life at all. I spent so much time in & out of hospitals, Doctors surgeries, Specialists offices and even specialist hospitals.  If there was a way to get poked and prodded by some sort of medical physician, I was there!

A diving accident at age 15 saw me with my first set of head injuries and brain trauma. I’m not even going to go into all the other regular illnesses and injuries that we all go through from time to time as we walk through life, I had those as well.

The diving accident (dove into a river, hit a rock head first) left me with permanent back and neck injuries, as well as ongoing symptoms such as sleep paralysis, dizzy spells, massive migraines, short term memory loss, insomnia, hypersomnia and a number of other symptoms that appeared over time and gradually got worse and worse.

I was diagnosed with endometriosis in my later teens, even though I had suffered with the symptoms since about age 16, it also turned out that I was suffering from polycystic ovarian syndrome, during the surgery I had for the endometriosis, I had to have cysts removed and a couple of other un-expected procedures done as well.

The Endometriosis and PCOS had a massive impact on my day to day life on a number of levels, if I didn’t suffer with enough pain already from my back, neck and head injuries, this took the pain issues to another level as well, not to mention a whole lot of other things that this created as well, from massive fatigue to uncontrollable bleeding and internal tearing.

Over the years I learned to live with the pain, to block it out on a mental level at times, but it was still always there to some degree, even at times painkillers did absolutely nothing. Sometimes the pain was so severe, from one thing or another that I would become very nauseous, at times actually vomit from the pain, or I would simply pass out because my body couldn’t handle it anymore.  At times I was also hospitalised because of the severity of my symptoms.

I was constantly in a state of fatigue, mostly from the physical & mental exhaustion associated with dealing with so much pain all the time.

Not long after I had finished high school and started working, I found out that I had an auto immune deficiency, something I had apparently been born with or rather without as I had something missing from my auto immune system. This caused a recurring condition known as Iritis or “uveitis”. It is extremely painful and highly damaging to the eye/eyes affected. It is basically an inflammation/ arthritis of the iris of the eye. Untreated it can cause permanent damage to the eye including blindness.

 This turned out to be something I suffered with regularly and more frequently as time passed. I ended up with damage to my left eye which I was told was permanent and not likely to get any better.  

I ended up with a white haze across my vision in my left eye as I mostly had iritis in that eye. Also, from massive pressure and constantly having my pupil stuck to the lense of my eye during bouts of really aggressive iritis, I ended up with a miss-shapen pupil, it looked like an upside down tear-drop. Short of surgery I was told this was not going to go back to normal. Iritis is not curable and the only treatment for it are steroid drops and atropine drops (atropine dilates the pupil so as to stop movement, pain and further damage) extensive use of the steroid drops can cause cataracts.

Prior to being diagnosed with iritis I was also involved in a vehicle accident, which caused more head injuries and brain trauma. I won’t go into the details but suffice it to say this was not helping things, and exasperated the problems I was having from my head, back and neck injuries due to the diving accident.

Fast-forwarding a few years, brings us to a severe bout of viral meningitis, where I was miss-diagnosed by 4 different GP’s as having a severe case of the flu, and told to go home, rest and drink lots of water etc etc.  Eventually I got so sick, my sisters stepped in taking me to their family doctor who promptly sent me to the hospital.. This was not only more brain trauma, but also the procedure I had to have (lumbar puncture) was performed incorrectly and caused a hematoma and further damage to my spine.

Fast-forwarding again a few years, I was involved in an extremely abusive & violent marriage, where I sustained more head/brain trauma amongst a whole host of other abuse related issues.

After extricating myself from the situation, I began to suffer from PTSD (post traumatic stress disorder) and severe depression.. which saw me spiral rapidly downwards.  I had massively put on a lot of weight from the cocktail of meds I was on plus not being able to do much with a back and neck injury. Being so overweight I developed plantar fasciitis which is extremely painful.

I was spending about 80% of my time either bed ridden or unable to do much because of pain, nausea or extreme fatigue which was totally debilitating.

This affected my work, as of course I was having soo much time off I ended up losing my job, and every subsequent job never lasted long because I simply couldn’t be at work long enough for any company to warrant my employment. Eventually I couldn’t work at all.

Friendships and family relationships suffered and most of the time I felt like I was constantly making excuses as to why I couldn’t do things or get involved in activities. And I was constantly justifying myself. Eventually I withdrew from everyone and everything, I had little to no social life, and in reality I knew my doctors better than my close friends and at times my family.

I had spent a lot of years with doctors telling me that a lot of my extreme symptoms were nothing and that the tests I was having were clear, yet I still suffered greatly on a day to day basis.

Finally one day whilst struggling to make sense of an extreme bout of iritis, a specialist Neuro ophthalmologist found irregularities in my optic nerves which turned out to be the key to a lot of my issues. It turned out I had what is called Benign Intracranial Hypertension (BIH) in simple terms this is pretty much high pressure in the brain caused by spinal fluid that was un-able to return back thru brain ducts into my spine. This was pretty much a result of all the brain trauma I had sustained over the years.

Left un-treated this would eventually cause irreversible damage to the optic nerves resulting in permanent blindness. There are pretty much only two things that I was told would help the situation as there is not really any known cure for the condition. 1 have surgery to replace the ducts, and have a shunt put in place, which means surgery every few years to replace them etc, its not a cure only a bandaid. 2 was to take a medication to relieve the pressure, one of the medications I had a reaction to, so I was left with the only other choice and that was to take a medication that had a lot of fairly severe side effects, and hope that it worked.

I started taking the medication and from day one it actually made a massive difference to my migraines and a few other things, BUT all of a sudden I started to get all kinds of other things happening, my hair started to fall out, I had constant pain in my extremities via extreme pins and needles, any time I got sick with anything I got REALLY sick and it took twice as long for anything like antibiotics to work, my depression got 100 fold worse, I had moodswings and I had a constant feeling like I was drugged and not quite with it. I had bouts of unexplained nausea, would start crying at the drop of a hat, started to bruise really easy, my skin got really thin and dry and I injured very easy and that’s just a few of the issues I got from taking this medication. It even altered my taste buds and a lot of my foods and drink started to taste different.

Although I knew that taking this medication was saving my eyesight as it was staving off most of the intracranial pressure, the side effects were extreme and I was looking at taking these for the rest of my life.

Quite literally my life was a total disaster zone, on every level.