The Health Thing

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 β€œcured” 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.

Time Passes~~~~~

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”.

17 Responses to The Health Thing

  1. Ellen Lee says:

    Oh, Claire, I’m so sorry to see all the health problems you’ve been going through over the past several years! I have missed reading your posts on the stitching group’s website, but now I completely understand why you’ve not been posting much. As you know, I’m disabled as well, and thus I can really relate to your frustration with doctors, with the new limitations on your life, and all of the problems we have just dealing with life on a day to day basis. You’re in my thoughts and prayers, Claire! Please keep in touch and let me know how you’re doing once in a while, OK?

    Love ya,

  2. Marie 'Wavymavis' says:

    I knew from your tweets that you have health issues Claire but I could never have imagined the degree to which they extend. I have read your post in complete disbelief. In the past year I have felt as though my world is falling apart and the depression I have found myself buried under has been crippling some days. Your story makes me feel ashamed. I’m sorry that your health rules your life in such a cruel way. You are such a kind and lovely lady and deserve so much better.
    Marie xxx

  3. tattyknits says:

    Hello! We’ve met across Twitter and Ravelry but I wanted to stop by and say hello properly. I’ve had two years of health hell but am slowly recovering and realising the recovery. I’m hoping to return to work in September if not before. I can’t believe what you have been through and continue to go through, it doesn’t show in your optimistic attitudes and I think you are very brave. I hope to meet you in person one day as I’m sure we’ll get on very well. Love and respect from Tatty xxx

  4. Georgina says:

    Proud of you!
    Love – G.

  5. Chele says:

    Hugs to you Hon! I knew most of this from prior posts but seeing it all in one post is amazing! That you EVER even try to get out of bed or out of the house is amazing! And give Steve a big hug for me for taking such good care of you!

  6. picperfic says:

    Dear Claire, I didn’t realise, I knew you had health problems but never knew the extent or indeed, what they were! You poor darling…I know sympathy is not always what you’d want to hear but I want to offer it. You are always so smiley and sociable, I just never knew. Brave girl, getting it down in writing. With love ~ Marianne x

    • Aww, Marianne, I think of myself as the world’s most unsociable person πŸ™‚ I find it all very hard to talk about even to people I know very well. It means I have to think about it rather than just live with it all.
      Thank you for your lovely words.

  7. TheFluffyViking says:

    You are singularly the bravest person I know! To put all that down in words is just awe-inspiring, and puts my miserable little moans severely into perspective. Like so many others, I never knew the extent or specifics. I just want to hug you right now, but these words will have to do for now. With love and praise – Leni xxx

  8. Sisu says:

    Much of this I knew, but not all. And I have long admired not only your courage, but the fact that you have not let your own suffering blind you to the lesser troubles that others have. Your a strong woman but you have not allowed it to harden your heart. Steve loves you not because he has to, but because he knows how lucky he is to have you too.

  9. amber says:

    You are certainly not unsociable, you brighten a room and we friends treasure you muchly for the positive attitude and your good company
    I admire your getting it out in writing it must have been hard Claire. Much love from Mr mog and I and see you Friday:).

  10. Pia says:

    Wow. I think I’ll never feel sorry for myself again for MY various little bits and pieces of regular malfunction…

    • Yes you will, we all do πŸ˜‰ there is and will always be somebody worse off in this world than we are.
      I am grateful for the good hours and make the most of them.
      I really should update the Health Thing page. It’s quite pathetic really lol.
      Hugs and thank you for making me smile. Cxx

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