May 5, 2013

An Update

Posted in ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , at 5:34 pm by Reva

I’ve been a little distracted these last few weeks by some issues at work. Not good, but if anything it’s made me realise that something is working. I say this as I’m sitting in my pyjamas at 4pm on a Sunday afternoon, with 4 weeks’ worth of clean washing piled up in my bedroom (I have been digging through it that pile for 3 weeks but it’s starting to look a little wrinkly), food spread from one end of the kitchen to the other (lucky it’s a small kitchen) and a pile of reading (lots of journal articles on IgG antibody reactions to food, and it’s links to leaky gut/IBS/ME-CFS).

If I ignore all of this and how it looks on the surface I have realised that for the last 2 weeks I have done all my own food preparation. I had planned to introduce this slowly after three months of doing virtually no food shopping/preparation etc but given my newly identified food intolerances I’ve thrown myself into shopping/cooking/washing up. I honestly don’t know how people with multiple food allergies do it. I am grateful that my reaction to the foods is mild and I’ve been told not to be concerned if I have trace amounts of the foods I react to, but I’m doing my best to avoid the trigger foods completely. It’s only temporary as the theory is that it can be treated (there’s an article on this in the journal pile). Anyway, I digress. Despite this sudden increase in activity I have not felt worse. Some of this improvement was starting before I made the dietary changes, I was starting to realise that as I was walking to my car after work I wasn’t focused on how many minutes it would be until I could lie down, and how much every inch of me ached. I was concerned that as I reintroduced shopping/cooking and washing up so suddenly I’d go backwards, but after a 2 week phase in period and a week of completely following the restrictions I haven’t crashed (touch wood).

My first step was to clean out my pantry and fridge. I put aside anything that was open but did not meet my new dietary needs and gave myself a week and a half to use it up. Anything that was still here the day the cleaner was expected would be binned. Anything not open has been put aside to donate. Everything else was put back in and a shopping list was written. So now everything in my pantry is safe for me to eat, except for a few staples that I’ve hidden up the back for guests (and the peanut butter which is Maisie’s)

I usually love eating out, but I was a bit worried about the first time I ate a meal out. I’m not one to make a fuss and usually I’m grateful I can have whatever I want. I figured eating out at breakfast would be a challenge. No wheat, No eggs. I was ready to just have a soy latte. But with some minor adjustments to the menu item I got this:

A vegie breakfast with mushrooms, tomato, hashbrown, spinach and avocado…minus the Turkish bread and hollandaise sauce, with a side of bacon. Yum!! It kept me full for hours too. With a soy latte of course.

I’ve also been doing my best to keep the food I cook at home interesting. Here are some of my creations:

                               
On the left I have my oat and rye porridge with stewed apples, almonds and honey which was my breakfast yesterday morning. And on the right, field mushrooms from the local farmers market stuffed with rice, zucchini, capsicum, onion ad broccoli, topped with pine nuts and goat’s cheese.

So really I’ve only been following the dietary changes for a week. I’m not sure that’s long enough to make any conclusive judgements. Actually, I’m sure it’s not long enough. But I’m certainly not feeling any worse, and these changes aren’t going to be harmful. And I’m having fun experimenting in the kitchen as a bonus!

April 21, 2013

Back to the Doctor

Posted in Journey, ME/CFS, Progress tagged , , , , , , , , , , , , , , , , , , , , at 7:36 pm by Reva

After 4 and a half years I made my way back to my old ME doctor this week. It was a big day – four hours round trip plus a 2 hour appointment and I expected to be in such a mess by the next day (especially given I was so bad last week) that I’d have to call in sick the next day. I was very pleasantly surprised. I don’t know if some of the treatments he has put me on or coincidence but I’m certainly not going to complain.

I explained to him that I think that in addition to not feeling like the treatments I was doing at the time we last spoke were making any significant difference, I had struggled with balancing my years of learning about evidence based practice, so not recommending treatment to clients that don’t have some solid scientific evidence backing it. I told him that I’ve come to accept that the reason that the evidence is so loose in our treatment options because treating ME/CFS is so new and the research is still being done.

We went over what’s been happening since last time we spoke. He told me about the citric acid cycle (also known as the Krebs Cycle) which is one of the body’s mechanisms for producing energy. It usually uses carbohydrates as its main source, however there is some evidence that in people with ME/CFS there is a blockage reducing the body’s ability to use carbohydrate and instead use protein. This reliance on protein might be causing deficits in amino acids which limits the ability of the citric acid to produce energy. He has suggested a protein powder that is 90% protein and contains a complete range of amino acids.

Source: Wikipedia

I went to a health food store after my appointment to buy the powder and they salesman was trying to tell me that I’d go through the product really quickly and tried to sell me the large tub. I assured him that the “small” 750g tub would be more than enough (hello, do I LOOK like someone who does serious muscle building?).

After the discussion about the protein powder he told me that he had growing evidence that dysbiosis was likely to occur in ME/CFS. I need to get my head around this in detail but the basis of it is there are two main types of bacteria in the gut. He is involved in research that is finding that people with ME/CFS have an imbalance of these bacteria, frequently to a point that they don’t find any e. coli in some patients. He went on to explain that this can be then causing changes in the pH of the body…this went on with further explanation that made perfect sense at the time that I can no longer remember. In order to manage this, first a faecal sample would be assessed for the ratio of bacteria and if it was found to be imbalanced it can be treated with a combination of antibiotics and probiotics.

My next stop was across the hall to meet with the practice nurse. First she did a blood test which was looking at my immune reaction to about 60 foods. This was a finger prick test. Apparently the theory is that these foods reactions are linked to the dysbiosis, and that by avoiding the limited foods there may be an improvement in symptoms. Once the dysbiosis is treated the foods can usually be reintroduced. I reacted to wheat, cow’s milk, egg, yeast, corn, legumes and peanuts. I was told I only had mild reactions so the nurse said I don’t need to be super strict, but she said the cow’s milk and egg are probably the ones to be most strict with.

Doctor wanted me to re-do the standing test I did back when I first visited him as the first I was so borderline for POTS. I didn’t get the results for that as he’d left the office for a bit when I finished. I actually didn’t get light headed through it, although my legs were extremely shaky and I felt like I was swaying.

Lastly I was sent off with a heap of papers, and blood test requests arrived in the mail the next day. I return to see him in three months and in that time I still have to have a heap of blood tests, urine tests, faecal tests (or as the doctor put it, “wee and poo tests”) and breath tests. Just to keep things fun the nearest place to do the breath tests is about an hour and a quarter away, I have to go on three separate occasions and have to arrive no later than 9am on each occasion. That should be fun.

In the meantime, I’ve started the taking the protein powder – I took it the first afternoon when I arrived home and I’m not sure if it’s behind by good recovery or if it’s coincidence but I guess we’ll see – and I’m phasing in the dietary changes. I think I’ll leave that challenge to another day.

March 30, 2013

The Brain Game

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , , , , at 11:48 am by Reva

One of my biggest concerns of late is the way my brain seems to be more discombobulated than usual. I’ve been feeling like I’m forgetting things, I feel like I’m disorganised, I have A LOT of trouble finding the right words. I know exactly what I’m saying and then it’s completely gone. I’m not game to greet people by name because I’m scared that when I say their name the wrong one will come out.

I feel incredibly lucky that I manage to work 4 days a week. One day I’d love to do some post graduate study but my biggest goal is to not have to reduce my current workload. I’m currently doing a short course for which I’ve already had an extension. I’ve never had to ask for an extension in my life before (that I can remember, but certainly not when studying). As it is, the work is due in about 10 days and I’m hoping I get there. But instead of focusing on studying my brain has decided it’s going on an organisation rampage. I have cleaned out my medicine cabinet, cleared off the papers that have been piling up on my kitchen table for the past 6 weeks, rearranged the things on windowsill above my kitchen sink, cleared off my coffee table of further papers, reorganised my bathroom cupboard and started writing a blog post. And gotten way off topic (something else my brain is doing more and more of).

Having to cut back my work is a huge fear. Without work I wouldn’t be able to pay my mortgage, I wouldn’t be able to afford some of the energy saving strategies (namely cleaner, lawn mowing man, home delivered healthy meal and groceries) not to mention some of the luxuries, the distraction from illness it provides me with and the fact it gets me out of the house. I spoke about this fear with a return to work officer at work and she suggested getting some cognitive tests done to see if there were any strategies that I could use to help me at work, and then discussed it with my psychologist who provided me with details of a neuropsychologist who she thought may be able to help me.

The Neuropsychologist was so lovely and helpful. She offered to meet with me, free of charge, to “have a chat” about my concerns and to see if there was something worth investigating. This “chat” ended up taking an hour of her time. She said that she’d like to do a range of tests as the problems I was having seemed to be broad, and as I was still able to work in a high functioning position she thought the changes were likely to be subtle and therefore difficult to find. We made plans to meet three more times. She asked if I’d mind if a final year student completed the first test. Working regularly with students myself I had no problem with this and told her it would be fine. She then told me she wouldn’t charge me for that appointment either (apparently the university paid her for that time so she didn’t want to charge me as well). I assured that that I didn’t mind paying, after all she’d still be working with the student on the analysis. She wanted to do a second lot of tests with me herself (the first time she was going to charge me) and then on the third occasion she was going to give me some feedback.

The first assessment went for two hours. It involved all sorts of tests, all starting fairly simple and gradually getting harder. It was really difficult to assess how I was doing as I expect that some of the tests were supposed to be too hard to complete. In one I was read a long list of word pairs. Some of the pairs seemed to go together, and others didn’t. Then I was given one word and had to say the word that matched. This was repeated using the same list of words several times and I actually found it fairly easy after the first round. Another that involved memorising patterns and positions on a grid was horrid. I am sure I didn’t get a thing right as I was completely guessing for the most part. My brain must have been working hard because the next morning getting out of bed was more of an ordeal than usual and I was extremely grateful that I didn’t have to go to work.

When I arrived at the second assessment the neuropsychologist told me she’d been doing some research into cognitive changes and ME/CFS and she was coming up with very little specific information. She was hoping that there would be some research that would help her guide her where to focus the tests. She’d gone through all of her references, done a literature search and had sent out an email request to all of her colleagues. She said that while it was clear that cognitive changes occur in ME/CFS, no one could tell her whether this was generalised “change” that varied from person to person, or if there were specific areas of the brain that appeared to be affected.

At the end of this second visit she told me that there were a few more things she’d really like to assess before she gave me my feedback, because once again things were not particularly clear and further information would be helpful. By this stage I had started to think that maybe it was all in my head and that there actually wasn’t anything wrong, that maybe I was just over reacting; that I really was just disorganised and not as smart as I thought. She kindly offered to come in on a Saturday and once again didn’t want to charge me for this extra appointment. In the end we combined this last assessment with my feedback session (so I felt better because I had paid for that).

One of the tests she did on the last Saturday involved me having to say out aloud words starting with a specific letter. This was done with three different letters. I had a minute to say them, and there were to be no proper nouns, no numbers and no repeated words, or words derived from the same word (eg. If I said bite, I couldn’t then say biting or bitten). For one of the letters I could only come up with 6 words, and in the last 30 seconds I couldn’t come up with any!! Surely not normal.

After finishing off the tests we went through some of the results that she’d already analysed. The results showed that I most definitely had a slowed processing in my brain. When she had tested my IQ (I didn’t even know she’d tested it) my knowledge was quite high, but my working memory and processing were really slow, quite below average. She said that what she believes is happening is that the brain fog really is slowing my brain down. The electrical impulses that occur when we think have slowed down and this actually explains a lot of my cognitive symptoms. It takes me longer than it should to come to the right answer, but the answers are definitely in there. What I see as “forgetting” is really me not allowing myself enough time to remember, as it takes longer than it used to. The word finding is difficult for the same reason. If I’m not planning what I’m saying ahead of time the words get lost. I am losing things because I’m either not giving myself the time to initially absorb where I’m putting things, or I’m not allowing myself time to remember where it is before getting flustered an confused. She asked me if I’d mind if she discussed my case with a group of her colleagues to see if they interpreted the results the same way (which I am more than happy for her to do) and has assured me if they come up with anything different or new she will let me know.

And what can I do with this new finding? Not much. Unfortunately processing is purely biological. All I can do is compensate (I interpret this as – allow more planning time) and, well, be less tired. And if I knew how to fix that one I wouldn’t be having the problem in the first place. But there is an element of relief that the information is actually in my brain, I’m not stupid and I’m not forgetting things I’ve learned of the years, and most importantly, it’s not all in my head (well, it is, but you know what I mean).

March 2, 2013

The Miracle Question

Posted in ME/CFS, Progress tagged , , , , , , , , , , , , , , , , at 9:48 pm by Reva

Have you ever been asked the miracle question?  It’s a question that my psychologist asked me, that many psychologists ask.  It can help with goal setting, with identifying what you want to achieve.

Suppose tonight, while you slept, a miracle occurred.  When you awake tomorrow, what would be some of the things you would notice that would tell your life had got better? And what would you do?

my magic wand

For me, the first sign something was up would be I wouldn’t feel more tired than when I went to bed.  In fact, I wouldn’t feel tired at all.  My limbs wouldn’t ache, it wouldn’t hurt move.  I could move my fingers easily, then my arms and legs. There would be no nausea.  Instead of having to gradually prop myself up, one extra pillow at a time to try to let my head adjust to being upright, I’d just get out of bed.  In fact, I’d feel so good I’d go for a run before breakfast.

NewYrs-Resolution-Humor02

After the run I wouldn’t feel like I’d been hit by a truck, I’d feel energized.  I’d have a long hot shower and I wouldn’t feel breathless, nor would I need to lean against the wall to make sure I didn’t fall over.  Afterwards I’d make a great tasting breakfast, whatever I felt like.  It wouldn’t matter how long I was going to have to stand to prepare it, or if I had all the ingredients.  I wouldn’t have to think twice about going to the supermarket to top up on what I needed.

VINCENZO-HERO-1

After breakfast I’d go shopping.  Instead of going in with a plan and sticking to clothes that I knew I needed, I’d try on all the gorgeous dresses and shoes, just for fun and to see if the different styles work for me.  No need to worry about standing or moving up and down.  I would be able to browse.  Slowly looking at everything, smell the fragrances, feel the different consistencies.  I wouldn’t notice all the noise.  I wouldn’t have to walk past shops that m     ake me curious because I would still feel great.

shopping

When I got home I’d read.  Not just some easy to read chick-lit or magazine.  I’d read one of the books that require me to think because I wouldn’t be forgetting what I’d read by the time I got to the end of the page.

While the sun was out I’d weed my garden because no longer would my head be spinning when I bent down to pick up the weeds.  I wouldn’t stop until I was done, and the weeds would be thrown away, not left in a pile for the next time I had some energy to spare.

I’d paint my hallway, and replace the doors on my front cupboards.  While I was at it I’d replace the light fitting and the front door.

Later on, I’d be ready to bake.  I wouldn’t have to choose simple quick recipes.  I could do something complicated and beautiful.  It would have layers and many textures; and I could eat it without worrying about the sugar crash afterwards.  In fact, I’d probably turn it into a bit of a spontaneous get together by inviting my friends over to share the food because socialising would be easy.  Conversation would flow and I’d be witty.  I would think of the great one-liners on cue, not half an hour later.

retro housewife

The night would linger on and we’d go out for drinks.  I’d be wearing heals because my legs would still not be aching, and I wouldn’t be struggling with balance.  I wouldn’t be choosing the least expensive option because I’d be working fulltime and therefore I’d be able to afford a few indulgences (and this is a miracle).  I’d stay alert all night, and mingle rather than sitting catching my breath in the corner, watching what’s going on.

the-energizer-bunny-energizer-bunny

When I finally am ready to go home to sleep, I fall asleep right away.  My sleep is restful.  My kidneys decide not to go into overdrive and fill my bladder waking me throughout the night.  I sleep the whole night through.  There are no weirdly vivid dreams, I won’t wake sweating and trying to work out whether what just happened was real or not, and if I do dream, I won’t be exhausted in my dreams.

pigs might fly

And who knows, maybe I’ll awake to another miracle day.

November 29, 2012

Tug o’ War

Posted in Journey, ME/CFS tagged , , , , , , , , , , , , , at 9:27 pm by Reva

Tonight I was skimming through the latest internationally accepted criteria for diagnosis of ME.  I haven’t read it in detail but a funny thing struck me.

I was reading through the checklist of symptoms for diagnosis, and I thought, “Yep I still have it”, then I didn’t know whether that was a good thing or not.  I mean, it sounds ridiculous to be happy to have a chronic debilitating condition that has no known cure.  But what if I don’t have it? Then what’s wrong with me?

Pictograms of Olympic sports - Tug of war. Thi...

I remember feeling the same confusion when I first was diagnosed.  After years of being unwell, tests and not knowing what to call what I had, I finally had a name for what I was experiencing. Yay. But it will never go away.  Not so yay.

I’ve been in a lull with my treatment for the last few years.  I’ve just been riding the storm I guess.  Every now and then I read about a new test or theory and I think, “maybe I should try it” followed quickly by “but will it achieve anything”.  Things I’ve tried in the past have been costly but I haven’t noticed any change but taking them.  I’ve probably become a bit lax in some of my management stategies.

After seeing a psychologist a few years ago I decided that I couldn’t let ME/CFS wasn’t going away, so I couldn’t let it control my life. I took back that control but maybe a little too much so.  I have too much caffeine and alcohol, not enough fluid.  I don’t pace myself as well as  I used to.  This past few weeks have been pretty chaotic, and I’ve consciously tried to change some of these things.  But I’ve also been thinking, maybe it’s time to take a stand and start looking after myself a little better.

November 23, 2012

A Roadblock

Posted in Crashes, Journey, ME/CFS tagged , , , , , , , , , , , , , , at 2:07 pm by Reva

Lately I’m finding work is stressing me out.  A few weeks ago I was finding myself in tears at the thought of going to work and I decided it was time I reinstigated my sessions with a psychologist. 

I have a history of depression and while it’s been well under control for the past year or two I know I get “all up in my head” and start reading more into situations than are necessarily there.  With these tearful sessions I thought it was time to nip it in the bud before I was back in a place of full blown depression.  Unfortunately the psychologist I worked with previously is no longer practicing in my area so it’s been a process to find a new one and get back into the system.

Between making the decision to return and now I’ve come to realise that the work stress is not in my head, that everyone around me is feeling it too.  When I completed forms with my GP today my depression and anxiety scores were in the normal range but my stress score was through the roof.  I wasn’t surprised but I was also quietly relieved to have identified a trigger to my depression and got on top of it before it truly started having further impact on my life.  It’s also sort of a relief to have identified what is the most likely trigger to my lastest series of crashes, although the tough part of working through it and learning to cope all over again is probably just about to start.

November 11, 2012

Pacing (or My Attempts At Pacing)

Posted in Strategies tagged , , , , , , , , , at 8:03 pm by Reva

I hear (see?) the term Pacing bandied about across a lot of ME/CFS websites.  There are classes in it, studies on it and recommendations for it.  I thought I paced myself pretty well most of the time and when people asked what I could do to manage my condition I frequently answered “Pace myself”.  I’m not sure when I realised this had become a researched treatment.

Recently in a case meeting one of the Occupational Therapists was explaining that she had been working with a particular patient on Pacing so I took the opportunity afterwards to ask her what information she provides.  She knows about my condition and while she didn’t have any information on her she hypothesised that a simple Google search should bring up some reasonable information and that once I read it I’d probably find I was doing it.

She was right.  Pacing is an evidenced based strategy of energy conservation which is used by people with ME/CFS as well as people with chronic pain, and other energy sapping, pain causing conditions.   It is a way to break a cycle of overexertion and crashing by alternating resting with activity.  Yep, I did that.  I was pretty pleased with myself when I read about the concept, as this is what I’d worked out on my own 😛

Okay, so there’s a little more to it, and there are some steps that you should go through to properly pace.  This includes estimating how many minutes of the day you are able to do activity, prioritising activities, knowing your symptoms and eventually developing a routine and building up.  A percentage of time should be spent resting for every activity, and rest breaks should be regular.  The idea is not to cure but to help with trying to achieve some normality.

I’m no expert in pacing, and by no means am I successful in it all of the time.  In fact there are times where I consciously fight against it.  There are days where I know I should take a lift but wonder what others will think and force myself to take the stairs.  Yesterday I helped out catering with a women’s group I attend regularly, which involved being on my feet for 2 hours straight.  Because these ladies don’t know about my condition, and were all much older than me, I pushed against my head which said I should stop and sit because I didn’t want to draw attention to myself.  Ironically I probably would have drawn a lot more attention if I’d passed out from standing for that long, but fortunately I’d make sure I was well hydrated, had extra salt, and spent the whole 2 hours wiggling my toes and stretching and managed to stay upright (albeit with some pain).  Oh, and once I did take a momentary seat under the cover of keeping an older lady company.

When I do listen to my instincts though, pacing does work for me.  While I’ve never sat down and calculated how much rest I need for how much activity, using my lists (have I mentioned I love lists? :P) in combination with sitcoms on DVD I get by.  On a good weekend I break up jobs with TV shows I’ve recorded through the week, or episodes of Scrubs.  On a bad weekend I watch 2 episodes between jobs.  No denying it though, it’s something I need to keep working on.

November 3, 2012

A Big Week

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

I’ve been a bit quiet this week.  There are a two reasons for this.  One is I’ve had some time to think about my work and my blog and how they fit together.  Long story short, I have decided that this blog is important to me.  I need a way to get my thoughts and feelings down, and for me a private journal doesn’t work.  I need accountability.  Secondly I’m finding some wonderful people here in the cyberworld who can relate to some of what I experience.

The other reason I’ve been a bit quiet this week is this is the first week I’ve worked full time in about six years.  I’ve enrolled to do a short course through my workplace, and it involves 4 face-to-face days of classes.  The first two were this week and one of these fell on my day off.  As my workplace is paying for part of the course I offered to try to see how I’d cope with a full time week given that it would be a different kind of work, using a different part of my brain, and I wouldn’t be on my feet all day.  Also the days were 9-4.30 instead of 8.30 to 5, there was no chance I’d be caught out 15 minutes before the end of the day with any sort of emergency and there were scheduled morning and afternoon tea breaks!!

I had planned to do some sewing last weekend but knowing I had a full on week I replanned and decided to make sure my house was in order, the fridge stocked and I was well rested.  I even decided which meals I was going to have from the freezer on which night.  I rested up and watch a lot of TV.  And once the week started I did my best to stick to a routine.  I even survived a spontaneous dinner out with friends and a last minute breakfast meeting one day.

I was so excited yesterday when it hit 5pm that I’d made it, and while it wasn’t easy I didn’t fall in a complete heap when I stopped which is what usually happens when I’ve overdone it.  I’m having another quiet weekend to reduce the risk of any payback but I have high hopes that I’ve made it through the challenge (especially as I have to repeat the experience in about 3 or 4 weeks).

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 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…

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