December 6, 2012
This time 2 years ago I was assessing an ICU patient who was waiting for a transfer to the wards. He’d had a laryngectomy the day before, and despite no longer having a voice he was rather chatty. As a result it was a long conversation as my lip reading skills are pretty poor and he had to write a lot down. His nurse was teaching her student, just behind us. All of a sudden my ears started to ring, and I felt hot and flushed. I felt extremely nauseous. I quickly excused myself and walked over to the nearest chair. I put my head in my hands. The chair was behind the nurse.
Running through my head was a thousand thoughts. Was I going to be sick? I didn’t want to be sick. But if I moved I’m sure I would be. Where was the nearest bathroom? About 10metres away. It may as well have been 100m. It was a staff bathroom with a keypad on it to keep visitors out. I didn’t know the password. Where was the next nearest bathroom? Way down the corridor. I didn’t feel I could talk. I could feel the sweat literally running down my back, and my face. My ears were still ringing, the smallest movement of my head made it worse. I tried to take deep breaths. I could hear the nurse saying to the patient “Did you have something else to tell Reva?” “Is there something you want to ask her?” I glanced up. The poor patient was madly shaking his head and gesturing towards me. The nurse turned around to look at me, just as another nurse came out from behind a curtain. They both lunged for me at the same moment and each grabbed me, one under each arm. Strangely there was a bed sitting out in the communal area. They walked me over, lay me down and put up the foot of the bed.
Immediately I felt better. Apparently I was ghostly white. One checked my blood pressure and another checked my blood glucose level. Both were normal. They called over the new doctor and said “Have you met Reva? She works here” – nice way to be introduced. They were debating what to do with me. They offered their comfy couches for a lie down for the rest of the day. I was adament being the only person in my department on duty that I would be fine to go back to work. They were feeding me fruit juice and water. Then suddenly someone decided to would be best to send me to the emergency room, just for a full check. Before I could blink I was being transferred through the halls of my workplace on a stretcher, down into the ER. Fastest way to get into ER I tell you.
There I sat for the next 3 hours. I was no longer acutely unwell but I felt weak and a little embarrassed. I was given some sandwiches and fruit. The process of eating was draining so I just picked. Saline was run, I was hooked up to a cardiac monitor, bloods were drawn. And I sat. Eventually I was told there was nothing wrong, it was probably just a symptom of CFS and if it was cardiac we’ll just wait until it happens again. Lovely.
A few months later the same symptoms overcame me. This time I was with a patient who’d had an amputation (I’ve been working with patients who have had major surgery and wounds for years so I promise I wasn’t just woozy). I sat down when I felt the symptoms and the patient asked if I’d like him to call a nurse for me. I said it might be a good idea. Next thing he swings himself up on to his crutches. I told him it was okay just to press the call button, but he insisted that “buzzers are for sick people”. He rounded up a nurse and same story. Normal BGL, normal BP.
My GP is great. She believes they’re harmless vaso vagel events and is happy to refer me to a cardiologist, but this has in total happened about 6 times in 2 years, so putting me on a cardiac monitor isn’t likely to pick anything up. I suspect its (just) orthostatic intolerance. One time I was seated when the symptoms came on – that one is a mystery, but all other times have been when I’ve been on my feet for a while, or very soon (<5mins) after I’ve stood up from lying position. One of the most recent events was also in ICU. The nurses grabbed me, and stuck me on the ECG machine but there were no abnormalities. After this they threatened to stick the holter monitor on me every time I went in.
Just another frustrating symptom of ME/CFS I guess. I haven’t had one of these episodes for over 6 months. Here’s hoping I haven’t just jinxed myself.
October 26, 2012
Ten Little Things That Get Me Through the Day
- Grocery Delivery – I love grocery shopping (is that weird?) but it can be extremely draining and on a bad day it can have me in a withering heap with all the noise, bright lights and people. I now get all my fresh food delivered. I have a set order for vegetables milk and bread with a company that sources all Australian made/grown products. I pick and change all my other fresh food based on my plans for the fortnight. This means I only have to go to the supermarket for a few extras – rice, toiletries, frozen veg and a few herbs and spices – so I can do the job quickly if I time it right.
- Planning and Freezing Meals – this helps me for a few reasons. By planning, I don’t have to go back to the supermarket outside my fortnightly trip. I also don’t actually have to think about what I’m cooking. If I come home exhausted I go onto automatic pilot, check the fridge door and cook before I sit down (if I sit down there’s no going back). Also by freezing my leftovers I can not cook at all and still not end up eating take out (I actually find reheating from the freezer easier than take out) which means I can usually stick to a healthy, mostly unprocessed diet.
- Routine – back to auto pilot. I find routine hugely helpful. I often forget how helpful until I stray from the routine and fall in a heap. If I stick to routine it takes less concentration. I have a bedtime. I very a little with whether I should stick to the same “get up” time on the weekends or not. Sometimes I feel
- Employing help – it took me a long time to get used to the idea as it felt like an extravagance for a single person working part time, but the little bit of money I spend to have someone do my “heavy” cleaning (scrub the shower, vacuum and mop the floors) is seriously the best thing I did for my condition. Previously I’d have to spend the next 2 days on the couch after doing these (which did NOT do wonders for my social life and therefore depression associated with ME/CFS) but now I no longer waste the 2 days post big clean and my house stays clean (clean, not tidy).
- Sitting down to brush my teeth and dry my hair – I did this by accident and didn’t realise right away I was doing it, but I sit on the side of the bath when I’m blow drying my hair and brushing my teeth. This helps manage my orthostatic hypotension. This brings me to…
- Electric toothbrush – my gums ended up in a mess and I realised that I was so exhausted and weak at the end of the day I wasn’t doing my teeth properly. On advice of my dentist I invested in an electric toothbrush. The one I have flashes a red light if I brush too hard and buzzes every 30 seconds with the idea that you spend 30 seconds on each quadrant of the mouth. So now I’m brushing my teeth properly with no concentration or effort required.
- TV episodes on DVD – sounds stupid but I discovered that these are great to help with pacing. They’re shorter than watching a movie which means I can break up jobs by watching one or two episodes.
- Saying No – this is really really tough. I hate saying no. I think it’s part of my nature to want to do things to help people. But over time I’ve learnt that saying Yes all the time helps everyone but me.
- Maisie – okay, Maisie might not help my ME/CFS directly but she does help with the social isolation and hence depression associated with it. I was being treated for depression at the time I got her and while I know that she’s not the only reason I’ve been managing my depression I know she’s a big part of it.
- Letting go of perfection – I’ve always been a perfectionist. When I was little I used to run inside and change my clothes 3 or 4 times a day when I was playing in the sandpit. I grew up in a household where everything had to be clean and tidy ALL the time. You’d never know it looking at my desk or my house but I HATE being messy. But if leaving things in a mess on my desk means I can drive myself home safely, or leaving the dishes on the sink means I can get through the rest of the week at work, well, I had to get over it.
October 19, 2012
What is this ME/CFS You Speak Of?
Myalgic Encephalomyelitis(ME)/Chronic Fatigue Syndrome(CFS) was first described by the World Health Organisation (WHO) in 1969 as a neurological condition. It is a complex condition with a wide range of symptoms that affect various systems in the body including the neurological system, the gastrointestinal system, the immune system, the endocrine system and the cardiac system.
While fatigue is a key symptom in diagnosis it is by no means the only, or for many sufferers the worst. In fact one of the most common symptoms, experienced by approximately 95% of sufferers, is Orthostatic Hypotension, an often sudden drop in blood pressure. Other common symptoms include sensitivity to light and sound, difficulty regulating body temperature, pain to varying degrees and irritable bowel syndrome.
While there is much debate around what constitutes diagnosis, it is largely a process of elimination although there are now a number of diagnostic guidelines around. My doctor, used the Canadian diagnostic criteria for diagnosis, and I believe these are used by many doctors in Australia.
There are many theories as to the cause and there is slowly more research being done to identify the cause, or more likely causes. This research will hopefully one day lead to a successful treatment but currently there is no cure. I plan to write about treatment that people find helpful as a part of this blog.
Living in Dreamland 