I have great admiration for writers that can completely bare their soul whilst writing. It's something I've never felt I could do, I always needed to keep a little of me back. If I have been brave enough to click 'publish' on this post, then I feel I have opened up a little more.
I have recently published 3 blog posts, although I have many more posts prepared and saved, but I've found it quite hard to put pen to paper, or fingers to keyboard should I say. I'll try and explain as best I can.
At the end of March I had an appointment with the eye consultant. I was diagnosed a few months ago as having sarcoidosis in my eye, which presents itself as uveitis, and I also had inflamation the the retina. I was becoming rather blasé about it. The different tests were a doddle, even the one where she injected dye into my arm, which shot into the blood vessels in my eye and made my mouth feel a little drooly. As were the steroid injections I was having regularly under my eye. I was quite aware than my sight in my right eye wasn't improving but I just thought we would trundle along for a while. Then she hit me with it! She said the treatment wasn't working and I had 2 options, an injection the eyeball or to go on steroid tablets. The needle in the eye was my big fear. I thought she would think I was silly if I ran out the door, so I stayed put, clammy handed and trembling. I immediatly wussed out and said I wanted the steroid tablets. I had read that the injecton of steroids into the eye is very likely to cause cataracts... and that means more injections in the eyeball. Err no thanks!
I was pleased when Alan said he thought I had made the right decision. Lots of people in a wonderful and caring facebook group I belong to, are on the steroid Prednisone, so I thought it could help other symptoms that were going on. This is where it gets difficult for me to talk about.
Depression, there you go, I've said it! As a female, I have of course suffered with bursting into tears at inopportune moments, generally feeling down and wanting to stab the odd person in the back, however this was or is very different. I was first aware of it in 2006, I was suffering with eye problems then, and the most extreme tiredness I have ever felt. I was teaching dancing, and I would arrive home and would be asleep within 5 minutes. I didn't look after anyone, feed anyone, to be honest I hardly remember that time in my life. We took Frankie my daughter to Paris for her 18th birthday, it was the perfect present for her, apart from I had no voice at all, and was so very tired. We also had a family holiday of a lifetime in Florida but I felt so ill. After our evening meal we would go back to the hotel, to put me to bed and Alan would go back out with the rest of the family!
Christmas was coming up and Alan and I had a trip to Bluewater shopping centre. On the way home my eyes itched so much I felt I wanted to scratch my eyes out and then it happened very suddenly. It was as though someone threw a dark grey cloak over me, and it stayed there for months.
When we moved to Spain because of my illness, (that took 18 months to diagnose after my first symptoms), it was such a relief. I was very sad I could no longer do the job I loved as a dance teacher, but of course this bloody illness also seperated me from my family and friends. It was the decison I made, but at that time I wasn't sure I could sit in a front row seat, and not be a part of the Lorna Roff Dance Centre anymore. It felt less painful to be distance myself. Of course moving to Spain meant I no longer had the pressure of being a competitive dance teacher, so if I felt tired, apart from keeping the house and the multitude of weeds under control, my work load was in fact, pretty easy.
Until March this year I had never taken any medication for my sarcoidosis. It is not a curable disease and the granulomas that cause the problems, can spring up anywhere in the body, and ideally if you can soldier on through it, it is better off that way. I was however still suffering from boughts of depression, plus a few other problems although for me the depression was the most debilitating!
Ooops, I've digressed. OK, back to March and I was put on the prednisone, a huge dose of 80mgs every day. I was quite nervous about taking it. Vainly I wondered how much weight I would put on, although I had heard of a few other nasty side effects too, but my eye sight was so important, it had to be done. You take it with breakfast (so it doesn't keep you awake at night... yeah right) along with a stomach protector and a couple of hours later I already felt different, like I had more energy. Those first few weeks I felt bloody marvellous. Better than I have for many years. I ate like a horse and everything tasted amazing! I would cook slighty more than usual (putting it mildly) but I would have it like two dinners, and I was snacking in between with unsalted nuts and dates. The strange thing about the steroids is that your stomach can be full, but you can find yourself shaking as though your blood sugar is low, and I would feel the need to cram food into my mouth. There are great cartoons about prednisone, I'll share some at the end.
A month later and I returned to the ophthalmologist and she was very happy. Already there had been a significant improvement. We could already begin reducing the steroids, what great news! At first I was dropping 10 mgs every 10 days. I didn't notice any side effects for a while, until I got to around 40 mgs. I then had 2 or 3 days where I would feel very down and tearful, and well as other symptoms I had from my sarcoidosis. From then onwards every time my dose lowered this happened. I knew it would only last a few days whilst my body adjusted to the new dose.
It was around the middle of the summer when I reached 20 mgs and that was by far the hardest for me. The feeling down and tearful turned into a major depression. I have only spoken about it on a couple of sarcoidosis posts before and to Alan on ocassions. For me the depression meant the My Grey Cloak went over me and there was a thick barrier between me and the world. Some people can talk about it when they are in that situation, but I prefer not to. I would sit at home staring at the screen of the laptop. I would ocasionally click 'Like' to something on facebook, but I hadn't got the energy or inclination to converse with anyone at all. Alan and I would sit for hours and I would hardly talk to him. He never pressured me, he knows when I'm bad that's just the way it is.
When I feel like that, my face looks different... older, obviously miserable but it almost feels like it's being dragged down. My posture changes too, I become round shouldered and I feel a physical weight on my head, neck and shoulders. Everything is such an effort. When I was feeling particularly bad in the summer I did confide in a couple of good friends. I also told my daughter. I had managed to keep it from her before, but I thought she ought to know. What was usually lasting just a few days stretched out for about 3 months. I would wake up, and it was there, My Grey Cloak was already over me. There is a fantastic video on youtube called The Black Dog, it is how someone describes their depession, and it is so accurate. Some people call their depression The Black Dog, for me it's My Grey Cloak. The strangest thing about it is it usually switches off rather like a light switch. It can be anytime of the day, or I guess night, and it's gone. I usually keep rather quiet at first as I have a fear it will come back. Rather like having a tummy bug, you don't want to eat too much as soon as you are feeling better... just in case!
The Black Dog
When My Grey Cloak lifted, and of all the strange days for it to happen was when we lost of little Outsider. Now, how weird is that, you wouldn't expect a depression to lift on that day! Since talking more about it to Alan I think what happened was the sarcoidosis symptoms were stronger than the dose of steroids I was on. Some of the old symptoms came back. The headaches, breathlessness, the cough and the extreme tiredness. I would sometimes sleep in the morning, as well as a siesta in the afternoon AND be in bed by 10pm! Some days would also feel I had insects crawling under my skin, and one day I made my arm bleed I scratched it so much, all on top of the depression. The last couple of weeks however I have felt on top of the world again, and life is good. I've even been kept awake in the night with the steroids, it's almost like I have just started taking them. I'm so hoping this will last... please!
So there you go, an attempt to bare my soul, and why I have not had the energy or mindset to manage my blogposts. If you are suffering and living with depression, can I please say surround yourself with the right person or people. I could not have coped without the patience of Alan, and I so wish he didn't have to go through this with me!
In the words of Jerry Springer "Look after yourself, and each other!"
