It’s complicated but here goes…the shortened version.
Very shortly after a fabulous cruise to the Caribbean in 1990, I started getting headaches and flu-like symptoms. These turned out, after a year of tests, to be Lyme Disease, most likely caught from a tick during a walk in the Rain Forest in Grenada. This was finally “cured” with a course of very strong Antibiotics, although once you get it, it never leaves you, and can recur at any time.
Back in 1995, I started to get dizzy. Then the 3 day headaches started followed by the loss of co-ordination and then the slurred speech. Both my Work, family and some friends thought I was either an alcoholic or on drugs. Steve knew what I was going through so believed that I was ill.
I visited my GP and he had various ideas. I was treated for the dizziness for a long time and it was thought that I had Menieres Disease along with ME/CFS/Lyme Recurrence. My GP eventually referred me to a local Neurologist who sent me for a CT scan and found nothing. His suggestion was that I just needed to see a psychiatrist !! Things got a lot worse very quickly and we asked for a second opinion.
My GP sent me to Harley Street to see the Consultant who had “fixed” my ear problems when I was 7 and also took my tonsils out. He had me marching on the spot with my eyes closed and unknown to me at the time turning in circles round the room. Because of this, he sent me for an MRI scan.
Three days before my 30th birthday, he told me, “I’m sorry my dear, you’ve got a blob”. I vividly remember screeching “What d’you mean, I’ve got a blob?”…The Blob turned out to be a large marble sized tumour in the middle of my brain next to the bones from my right ear. Most of the symptoms were from where it was squishing into the brain and eroding some ear bones too. They ended up calling it a “Petrous Apex Cholesteatoma” as they couldn’t find out what constituted the ever-growing blob.
6th January, 1997, was the first operation to open up my skull and remove “The Blob”. It went well and after a couple of weeks in hospital recovering from surgery and an infection, I went home. The Blob was not expected to manifest again for at least TWENTY years although, the top neuro-surgeon had only seen 2 or 3 cases of anything similar in 30 years of surgery.
May 1997 and I’m noticing symptoms again, exactly the same as they were the first time around. The Neuro-surgeon was slightly disbelieving but another MRI scan showed that The Blob had indeed returned. Same position, more erosion and more squishing.
The Blob was once again removed in the September of that year and a plastic tube (shunt) was put into my head to drain away “ick” from said Blob. This was expected to be the end of my problems. Nope, now the Blob had a cavity to fill and it continued to do so. Also, because of the 2 brain surgeries, my body started producing an excessive amount of the fluid that surrounds the brain and spinal cord, which in turn caused more pressure on the brain, and subsequently headaches, loss of memory, lack of co-ordination etc, so every 2 months or so, I had a Lumbar Puncture (LP) to drain away the excess fluid.
Cut to 2002 and it was decided to put another shunt into me to avoid doing the LP procedure every few weeks. This was put in the bottom of my spine and drains a litre and a half of excess CS-fluid a day to my stomach.
Anyhow, cutting it short, many operations and a couple of shunt revisions later, I’ve had a kind of cascade failure on various body parts. My Pituitary gland failed along with the Thyroid and other glands/organs. My Gallbladder went nuts due to some of the drugs I was on and their metabolising effect on the Liver. I had an early but unknown Menopause around 2002, and when they took out the Gallbladder in May 2003, they found my insides filled with Grapefruit sized suspect looking lumps. These turned out to be giant Fibroids which eventually led to a total Hysterectomy.
My life has changed drastically. I can’t work any more. I rarely go out alone and walk with a stick all the time. I gave in and now have a disabled badge which has been a godsend indeed.
My main “disease” is BICH (Benign Intra-Cranial Hypertension). This leads to periods of weirdly increased brain pressure which gives me mood swings, weird tempers, bad co-ordination, balance issues, localised-head pain, head-aches and many other so-called un-related issues.
My LP shunt has given me constant Sciatica which is unrelenting pain and has now made me need Fentanyl Pain Patches, the strongest pain relief you can get, to partially help with the excruciating pain. The shunt is embedded into the nerves of my spine now so removal or not having a shunt is not an option.
The 6 monthly visits to St. Bartholomew’s Hospital are for the failed Pituitary gland and Endocrine system. The drugs Prof has me on, they don’t keep me alive, but they damn well make a big difference.
My parents, to a degree, are still in denial that all this is happening, particularly Mum.
Steve has been fantastic and amazing throughout and continues to make my life the best life he possibly can given the unusual situation we find ourselves in.
That’s the short version…there’s more to it of course but….this is enough to share for now. It’s hard to talk about and almost as hard to type it all out and have to read it back to proof-read…
My life is not my own. It’s owned by the failed thing I call a “body”.