October 29, 2012

Kind of a Disclaimer

Posted in Journey tagged , , , , , , , , at 8:07 pm by Reva

I had a fairly loose idea of where this blog would head when I started it, and to be honest I’m still finding my feet.  Whilst the number one aim when starting was using it as a method of helping myself – reminding myself of what I have achieved and can still do in spite of a chronic illness, and as a way of documenting what has (and will continue to be) a long road.  As I get further into this I realise that part of my journey has been the treatments and tests I have tried.

My own background is scientific – I wouldn’t recommend a client follow a route that doesn’t have a good solid scientific backing with support and publication in a reputable peer reviewed journal.  But what do you do when there is limited scientific backing?

I think before I take it further I need to make it clear that even though I am a health professional, the information that I’m sharing here has been researched in the context of my own health.  Each time I have tried a treatment or looked into a test I’ve researched it myself but also taken the information I have found and discussed it in detail with my own medical doctor who is the person other than me who has access to my complete medical history.

As a result I feel have to make it clear that this isn’t a medical blog.  Nothing I write here is a recommendation, just a part of my own journey and research.  If you find something here that you think might help you, remember that everyone is different and what has (or hasn’t) worked for me, may or may not be the right route for you. Please discuss with your own managing health professional if it is the right route for you.

Where I can I hope to link to evidence I have sourced but as I said, the evidence isn’t always there.  In these cases I’ll do my best to document my thought processes (but sometimes it’s kind of jumbled). And if after reading about any of my experiences you are confused please ask – one of the symptoms of my condition is mental confusion and sometimes when I write my thoughts get jumbled.  I’m trying to avoid this by writing ahead of time so I can reread before posting but I have no doubt that some muddled thoughts will sneak in which I apologise in advance for.

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October 28, 2012

Paper and Tape

Posted in Craft tagged , , , at 3:06 pm by Reva

I was out catching up with a friend yesterday.  We were wandering the local farmers market and she mentioned that she couldn’t find a “New Baby” card for a girl that wasn’t pink, and she knew the mother of the baby she was buying for wasn’t a fan of pink.  As I have made a few cards in my time I offered to have a go at seeing what I could come up with.  This is what I came up with:

It was a bit of a challenge given that anything in the craft shops for new babies are predominantly blue or pink, and I couldn’t avoid the pink all together.  I’m not a huge fan of the orange that seems to be creeping into fashion and decor at the moment but somehow it seemed to work here.

I find that getting my card making toys out and put away again is pretty exhausting so I usually try to make a few extras when I’m set up:

 

 

October 27, 2012

Elimination Diet

Posted in Journey tagged , , , , , , , , , , , at 5:00 pm by Reva

Many people I spoke to reported that they had food and chemical intolerances which triggered their ME/CFS symptoms.  Now this was something I could relate too!  I am a health professional with a particular interest in the science of nutrition.   I looked into the RPAH Elimination diet which is a strict diet that eliminates food chemicals from the diet and allows a person to identify what chemicals they react to and in what sort of quantities.

pears

Foods we eat naturally contain many food chemicals.  There is evidence that in some people certain food chemicals can cause various symptoms.  The basic idea of the diet is to eliminate all the foods that contain food chemicals that are suspected to be the cause of these various symptoms from the diet until you have 3 consecutive symptom free days, and then you introduce small groups of foods in set amounts that contain specific chemicals to test your reaction to different food chemicals.  Once you identify the food chemicals that cause or worsen your symptoms you can then work out what load you can tolerate then learn how to limit them in your everyday day with the hope of minimising symptoms all together.

After following the strict diet for 2 weeks I had not noticed any improvement in my symptoms so the next stage was to remove wheat and dairy from my diet and wait for the symptom free days.  I waited to wake up with some improvement (or secretly to jump out of bed a go for a run) but after four weeks I felt no better.  Normally this is the point where you’d stop the diet and admit that food is not the problem, but on discussion with my colleagues we thought that maybe there had been gradual improvement which I may not have noticed.  I decided to try the “food challenges” with the theory being by reintroducing a large load of the chemicals I might suddenly worsen I could focus on that food chemical.  Each chemical is tested for 3-7 days, and there has to be a 3 day “wash out” between each chemical.  All I achieved from the whole process was a massive head cold (and ironically, I don’t get sick).

I discourage anyone from trying this process without the support of a health professional – ideally a dietitian specialising in food intolerances who are found in allergy units in major hospitals.  I managed to get myself sick, I’m sure relating to some sort of nutrient imbalance from such a restricted diet. I stopped the diet after about 3 months without any more answers.

Edit: This is one of the only sources of information I could find on ME/CFS and the RPAH elimination diet when I was looking into it.  Most of the research is around other symptoms including migraines.

October 26, 2012

Ten Little Things That Get Me Through the Day

Posted in Strategies tagged , , , , , , , , , , , , , , at 8:17 pm by Reva

  1. 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.
  2. 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.
  3. 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
  4. 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).
  5. 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…
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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 24, 2012

The Confusion That Ensued

Posted in Journey tagged , , , , , , , , at 7:56 pm by Reva

So now I had a diagnosis I thought the search was over. But in reality it was just beginning. I wanted to find out how it was treated but with so little support this was difficult. I hit the internet and found a forum. The forum was a great way to read about other peoples’ experiences, but also it put me in touch with people who could understand what I was going through.

Eventually though the forum became overwhelming. All the things other people seemed to be trying, discussing. I found that I didn’t know where I fit in – all these people had been diagnosed with “Chronic Fatigue Syndrome” or “ME”. I’d been diagnosed with “a fatigue syndrome”. Was this the same thing? Some people seemed to get really hung up on the details.

While I found some wonderfully supportive people (some whom I still keep in touch with) and I found the forum to be helpful overall, the cattiness over who really had ME/CFS and what it was really called, what a proper diagnosis entails and so on had me confused and was exhausting. The solace I initially found was disappearing and I wondered if I was relying too much on the cyber world so I stopped spending time there.

October 22, 2012

The Discovery of Friendship

Posted in Progress tagged , , , , at 7:35 pm by Reva

Developing a chronic illness has opened my eyes to different types of friendships.  I know it’s a cliché, but you learn who your real friends are.

Soon after my diagnosis I returned to Melbourne for a friend’s engagement party.  It was a big deal for me.  I didn’t really know anyone else going, I had to travel which is exhausting – the waiting around in airports, sitting in uncomfortable seats, carrying around luggage, getting across the city. I wanted to catch up with so many people, but I knew that I had to be careful so I decided to email the people I hoped to catch up with.  Some of the people who made the effort surprised me and I was so excited that they’d made the effort as they’d been people who I hadn’t spent a lot of time with in the past.  On the other hand some who I’d felt really close to wanted me to travel 20minutes out of town to “meet me halfway” (I’d already travelled interstate so felt I’d already come halfway) obviously having no comprehension of what that further 20 minutes (or 40 minutes return) on public transport meant for my capabilities of getting through the weekend.  Others still who I’d considered close friends didn’t even respond.

Over the years this pattern continued, the people who I thought were my closest friends were there when the going was good, when they were celebrating or when they needed someone to talk to.  But the moment I was sick, too unwell to travel, to celebrate or I needed to talk they were busy, or they simply disappeared.

I spent too much time dwelling on this, wondering if it was the ME/CFS, the natural course of growing up or maybe it was just me.  Slowly over time I worked through this and eventually I accepted that no matter the reason I had nothing against these friends but I no longer had the energy for one sided friendships.  My condition was draining and it was time I took a step back and focused on myself.

I realised I’d reached a level of acceptance when I found out via Facebook that someone who I’d considered a close friend had recently had a baby.  I didn’t know she was pregnant.  The last time I’d seen this friend I’d travelled into the city, 3 hour round trip by public transport, to meet her for lunch.  When we left off she was going to get in touch – she was going to be in my area in a few weeks so she was going to let me know what the dates were and we were going to catch up for a girls night.  I haven’t heard from her since.  I few years earlier this would have had me in a complete mess but when I saw the pictures I actually laughed out loud.  I was surprised but it finally hit me how much energy I’d wasted over the years trying to keep some friendships alive.

I now have a new outlook.  The people who matter understand that there are days I can’t do what I want to do.  There are times when my life is pretty mundane and boring purely because I physically am barely keeping up with day to day life.  They understand that talking on the phone can be draining but send me text messages, talk on the phone and when I do the interstate trips they understand that I need a day of rest when I arrive and need to factor in another at the end.

ME/CFS is a socially isolating condition, and while it has taken me some time, letting go of those one sided friendships has ironically made me feel less isolated.

October 21, 2012

Not Quite the Light At the End of the Tunnel

Posted in Journey tagged , , , , , , at 2:33 pm by Reva

For the next few months it was easy to make excuses for my fatigue.  I was doing exams.  I was moving.  I was starting a new job in a new town.  I was increasing my working days from three days to four, then four days to five.  I was stressed when that job finished and I didn’t have a new one to go to (and that I didn’t have a car for job hunting because my car was burnt by some little angels in the town I was living in a week before I left – but that’s a whole other story).  I was moving interstate.  I was starting (another) new job.  I was house hunting.  I was moving house.  But eventually it was getting harder to ignore.

I have to admit if it wasn’t for our department’s wonderful receptionist I’d probably be no closer to a diagnosis to where I was then.  I’d still be pushing myself to work full time and be convinced that it was normal to feel as horrible as I did by then.  But with her gentle prodding I finally was convinced to go back to a GP about the problems I was having.  And to my surprise when I explained what was going on (I didn’t tell her quite how long it had been going on) she agreed that something wasn’t right.  She actually mentioned CFS.  But first she sent me off for another round of blood tests.  I spent a week actually hoping I had Coeliac Disease – I knew I could do something to manage that even if I could never eat decent bread, M&Ms or drink real beer again.  But when I went back and everything looked normal this GP actually referred me on to someone else!!   And when she was contemplating who the best physician to send me to in an isolated state she actually listened to me when I mentioned one of the doctors on her list didn’t like dietitians (“well we won’t send you to him then will we”).

The lovely physician sent me off for all sorts of tests.  My (least) favourite was a sleep test.  Being hooked up to wires with sticky gum stuff, with wires up your nose and being told “we get the best results if you can just fall asleep on your back” – sure, no problem! I can fall asleep on my back, with wires poking the inside of my nose!!  But apparently I slept enough to get the all clear (“it’s alright love, as long as you’ve had a 30 minute sleep at some point through the night we get enough information.  And I’m pretty sure you did.”). After 6 months of tests all we came up with was some allergy markers were a little high.  So at that point the physician told me I most probably had “a fatigue syndrome”.  He felt that I seemed a little depressed (wouldn’t you be?) and put me on some antidepressants.   He told me that there wasn’t a lot he could do for me but to pace myself and take some time off if I need it, and to get in touch if I was concerned about anything.  As frustrating as it sounds I really did like this doctor and at that time I felt relieved that I had a diagnosis.  True to his word, whenever I ran into him at work he’d pull me aside and ask how I was, and when I mentioned some strange toe numbness and dizziness he told me to call his private offices and arranged an MRI to rule out MS (and went through the MRI results explaining that the little white patches were normal “minor brain damage” related to age and I had “surprisingly little damage for someone (my) age”).  Luckily no MS.

In the end I just found myself a good GP (unfortunately the lovely one I met in the beginning retired) who told me that I probably knew more than he did about the condition but if I ever wanted him to read up on something or have further testing or try a treatment he was happy to help me out.  I stuck with him for the next 3 years and he even called me when I moved interstate to ask if I’d be interested in being involved in a research project being done at the local university.

But still I wasn’t satisfied…

October 20, 2012

“P” Risotto

Posted in Food tagged , , , at 5:35 pm by Reva

I went back to work this week after taking only the 2nd full week off that I can remember since being diagnosed with ME/CFS.  I knew I’d struggle so I’ve spent this week eating leftovers out of my freezer.  So last night, the first day of my weekend, I decided to make use of all the yummy fresh veggies slowly wilting away in the bottom of my fridge.  And this is what I came up with:

Pumpkin, Pea and Prawn Risotto

First I diced a small butternut pumpkin and roasted it in the oven – I did this ahead of time so I could rest while it was cooking.  In a large pan I cooked 300g of defrosted uncooked prawns then removed them so they didn’t overcook.  Thin I browned a diced onion and clove of garlic and then added a sliced zucchini.  I added a cup of Arborio rice to the pan, tossed it around then added a glass of white wine and a teaspoon of vegetable stock powder.  As the wine was absorbed I slowly added boiling water, stirring the whole time (this is where I wish I had a bar stool to sit on).  Towards the end I returned the prawns, added the pumpkin and 250g of fresh shelled peas.  Once the rice was cooked I added about a ½ cup of grated parmesan and some cracked pepper.  Enough for about 4 serves (I froze 2 serves to help restock my freezer).

October 19, 2012

What is this ME/CFS You Speak Of?

Posted in ME/CFS tagged , , , , , , , at 5:44 pm by Reva

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.

October 18, 2012

Oh to be List-less

Posted in Strategies tagged , , , at 5:51 pm by Reva

Pardon the pun.

As my ME/CFS progresses my memory is slowly getting worse.  One of the things I’ve learned I need to do to keep myself on track it to write lists.  I have to write everything on these lists and I keep them everywhere.  Here’s one example:

Yep I have to remind myself to trim my nails and have a shower some days.

I always have a few lists on the go.

At home I have a “big jobs” list that sits on my fridge.  It’s the stuff that I know needs to be done, but is usually too big to do on my own or to do all at once, and doesn’t need to be done right away.  I keep it so that when people offer to help me by doing something around the house I know what to suggest, or when I have an unexpected run of good days or quiet weekends I can break the jobs down and do them myself.

On the first day of my weekend I write a list of all the things I want or need to achieve for the weekend.  I started to do this when I realised I was running around like a mad thing on a Sunday night trying to do all the things I forgot to do on a weekend, burning myself out before the work week even starts. Over breakfast I keep this list by me and plan my day or weekend.

I have a “Spring Cleaning” list.  It might take a full year to work through it but it prompts me to clean those things that I only ever notice when I’m too tired to do anything about it.

At work I have an ongoing “to-do” book (Yep, a whole book).  It has all the big projects I want to do, the phone calls I need to follow up, the forms I need to submit, the policies I’m supposed to write.

From this list I write a daily to-do list – If I don’t write this one I’m likely to forget all sorts of appointments.  And I usually break down the bigger projects into smaller jobs on this list.

As well as keeping me from forgetting things these lists help me to prioritise how to use my energy on a particular day.  For example from the list above, I would decide what absolutely HAS to be done (eg. Shower, dishes, voting).  I know I can’t do the dishes straight after (or before) having a shower.  Both involve standing in one place for a reasonably long period of time so if I did these for too long I’d probably end up with a drop in blood pressure, start to feel weak and dizzy, possibly nauseous and on a really bad week I’d possibly pass out.  So I make sure I have enough time between each to stop for a break, usually sit down and read the paper or watch some TV in between (I was told by a doctor once that the only activity that doesn’t count as “activity” when measuring how much a person with ME/CFS can do is watching TV – reading counts as activity as it takes more brain power than watching TV to do).  Or I might use this time in between to do some of the less draining activities (eg phone calls to make appointments, paying bills online)

My latest list is my “want” list.  Like most people I always find throughout the year I think of things I want but the needs come first.  But when Christmas or my birthday comes around and people ask what I want, I forget.  Usually until the day after the event.  So I’ve gone back to my preschool years and started a Santa list.

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