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 22, 2013

More Sleepless Nights

Posted in Crashes, ME/CFS, Progress tagged , , , , , , , , , , , , , , at 5:29 pm by Reva

For months I’ve been trying to work out what might be increasing my symptoms these last 9 months. One and a half years ago I started taking low dose amitriptyline to help me sleep. Before taking it I had no trouble falling asleep but I’d wake on and off throughout the night, sometimes lying awake for hours. Once I started taking it I still would wake once through the night but I would fall straight back to sleep.

Recently I wondered if maybe it might be behind some of my fatigue. Maybe it was causing me to be foggy through the day. A few different people have suggested that at the dose I was taking it really shouldn’t be causing problems. Amitriptyline has other uses and when used as an antidepressant it is given at much higher doses. At the low dose I was taking there shouldn’t be any issues. I was still curious. I don’t think I have any issues with tolerating medications and chemicals that other people with ME/CFS have but maybe the reaction for me is subtle.
imagesCAT7UHT2

I had a chat with my GP, and I also asked about high dose melatonin. She was more than happy to prescribe it, however given that melatonin works by resetting the body clock and I’d been sleeping well for 18 months I shouldn’t need it. My body clock should be reset.
That night, and the following six, I cut the amitriptyline tablets in half to reduce my dose. I was sure I was on a winner. No change to my sleeping pattern. I was falling right to sleep at night, then waking once through the night and then waking up with my alarm. The waking was as difficult as ever, but it was no different.

The next week I cut out the tablets. For another week things continued on the same. Wake once, then straight back to sleep until my alarm went off. I even slept well through the heat when everyone around me was complaining of sleepless nights.  But last Saturday morning I woke at 1am. Then again at 4am. And then I didn’t go back to sleep for an hour and a half. The result – complete overwhelming fatigue and pain. The kind that makes you feel nauseous, that sits there in the forefront of your mind stopping you from being able to distract yourself with anything else. The next night I was back to my usual “wake once and go back to sleep” routine so I decided one night of poor sleep isn’t enough to change go back.
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Then Tuesday morning I had a repeat of Saturday morning. Not so easy to cope with the overwhelming fatigue at work. It reminded me why I’d gone on the amitriptyline in the first place. This used to happen so frequently that I was struggling with work; but one day I should be able to get through.
It was the second replay on Thursday morning that changed my mind. Three sleepless nights out of six compared to I think one in 18 months is pretty clear that the amitriptyline was doing some good. Even if there is a little fogginess (which I don’t feel reduced at all, but I don’t know how long it would take for it to completely get out of my system), the fogginess is actually easier to work with than the severe fatigue, nausea and radiating pain I feel after the days is a thousand times harder to live with.
funny-sleep-comic

So last night I put myself back onto the amitriptyline. I had a good night’s sleep and I think given a few more I should be back to my normal, or at least my most recent normal, and I’ve crossed one more theory off my list.

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.

December 31, 2012

New Year, New Challenges

Posted in Crashes, Journey, ME/CFS, Progress, Strategies tagged , , , , , , , , , , , , , , , , at 7:07 pm by Reva

New Year’s Eve looks even better than I planned.  I finished work two hours early.  Set myself up on my new banana lounge under the shade of my beautiful Japanese Maple, watching my dog explore the backyard, drinking my lemon lime and bitters and writing.  When the sun gets low I’ll move inside and set myself up on the couch in some comfy pyjamas with some snacks and a low alcohol sparkling wine and watch DVDs  until the fireworks on TV (and there are rumours of some local ones) or I fall asleep, whichever comes first.Maple

 

I’m not one for New Year resolutions.  I’m pretty sure I’d be setting myself up to fail.  But this year, or this past six months, has been the worst I remember health wise.  So I’m determined to make some changes.

Since my crash back in September I admit I probably haven’t been looking after myself as well as I could.  I’ve probably bought more take away food, I’ve nearly emptied my freezer supply, I haven’t eaten fruit, not paced myself well, have gotten lax with my planning which has meant more frequent trips to the supermarket…the list could go on forever.  Up until yesterday this is where I was going to focus my “health reform”.

The first thing I figured I needed to do was work out what was causing this prolonged poor health state, if it was just the above or was the above actually the result of a crash that has just been perpetuating itself.  I’ve been shutting this out because in the past I’ve found that for me a crash is triggered by no one thing, but usually a combination of things that have the audacity to hit me all at once.  The difference this time is I don’t seem to be recovering from the crash, at least not back to my previous capacity.

About six months ago my role at work changed significantly.  I wasn’t happy about the change, but that’s another story.  On the surface (and I suspect this may have potentially been behind the move) the move looks like it makes my life easier.  It’s less complex clinically, there is less urgency to get things done therefore there should be less overtime and on the side, parking was better so I wouldn’t have to park so far from work.  Unfortunately my workload was spread across two campuses, 10minutes walk apart.  I picked this as an issue early on and I tried to plan my week so that I wouldn’t be walking back and forth each day (driving sounds like the easier option but at one of sites it’s about a 10 minute walk to the nearest untimed free parking).

In the past few weeks I’ve been doing some research around chronic illness/disability in the workplace.  One of our OH&S representatives sent me some information which I finally had a chance to look into over the weekend.  As I was reading it I came to realise that the move at work may have been a bigger detriment  to my health than I first thought, that the things that I’ve been doing my best to not complain about for the past six months may be more than just annoying.

A lot of the management ideas portrayed in the information included things I already tried to do in the past, and were largely based around setting up your work space.  I now share a desk with two other people.  I can no longer stick reminders to myself in the middle of my desk because they’d be in other people’s way.  Using my diary is difficult.  It contains patient information so I don’t like to take it home but I’m frequently starting at one place and finishing at another so somehow it ends up at home. I then forget to take it back to work so I miss meetings, forget phone calls and overlook orders I’m supposed to place.  I’m starting to look very unprofessional.

My current role involves a lot more talking with patients, education and negotiation.  My brain does not do these well.  I have a very scientific brain.  It does not cope well with rephrasing and coming up with analogies.  I’ve noticed it being so much harder to speak my thoughts. My previous role was a lot more complex in many ways but I didn’t have to put my explanations into terms that patients could understand.  It also involves a lot more time on my feet, talking to patients (I refuse to sit on patients’ beds for a number of reasons) and chasing down other staff, and supplies.

For now I can’t change these things easily.  I’m not happy about it but that’s life.  I am going to put together a case, with the help of my OH&S friend and my psychologist, for some changes but given the complexity of politics in our organisation I’m going to tread carefully and take my time.

In the meantime I’ve considered what I can change to help my case.

  • I need to find a way to get to work on time.  I don’t cut hours, but if I arrive to work late I stay back late making it up which means I get home late, and start to feel like I have a routine of work, eat, sleep.
  • I have started to use the online calendar at work.  While this might appear an obvious solution, our organisation does not have enough computers (considering EVERYTHING is done online), so it’s not a final solution but I think it will help.
  • I’ve set a very strict timetable which I’m following starting today.  Into this timetable I’ve inserted all hours I’m allocated to each different part of my role, but more importantly I’ve included my tea breaks. Tea breaks are not something that is really routinely taken in my workplace however it is an entitlement and I believe it will go a long way to improving my productivity and health.  To help me with this I also have allocated a block of time at the beginning and end of each week to plan my week and ensure all the paperwork is finished on time.
  • I’m colour coding my diary.  I’ve always been jealous of people who do this but some of information I’ve been reading recommends doing this to help with visualisation.  I started doing it with my online diary about a month ago and it’s worked brilliantly so I’m going to start doing the same with my paper diary as I rely a lot more on that.

In addition I plan to:

  • Return to my fortnightly meal plans.  I don’t stick to them strictly but they do mean that I don’t have to go to the supermarket more than once a fortnight and I don’t end up buying my lunch at work
  • Drink less caffeine and artificial sweeteners.  I don’t have a lot of caffeine – I try to limit to no more than 2 caffeinated drinks a day and I rarely exceed this (and never after lunch).  Artificial sweeteners on the other hand have gotten a bit out of control.  In a bid to drink more fluid without sugar I have been drinking a fair amount of diet cordial.  The trick will be to drink enough fluid to keep my head from spinning. Today stocked my filing drawer with peppermint tea bags.
  • Later in the year, once I’m going to talk to my GP about reinstating some of my previous treatments (more on those another day) and potentially revisiting my CFS doctor.

 

So no resolutions but a long list of good intentions that I think are largely achievable and hopefully will go a long way to increasing my workplace situation.  I recognise a lot of other things I could do, but I think that by focusing on these will actually mean many others fall in place.

 

 

Wishing that 2013 brings you all happiness and good health xx

 

December 22, 2012

Road Trip

Posted in Journey, Progress, Strategies tagged , , , , , , , , , , , , , at 6:47 pm by Reva

I’ve just made the 300km trip to my hometown to spend Christmas with my family.  It’s a long trip when you have a chronic illness and are travelling alone (well, with a dog) but it’s a good opportunity to have a good think.

1km

Coffee break.  Okay, so I planned this to avoid making and cleaning up breakfast.  Poor Dog thought she was going to a play date, but just enough time to grab a quick coffee, a piece of toast and read the first two pages of the paper

coffee

17km

Where’s the cruise button gone? Same place that the volume control is on the steering wheel.  I don’t have it.  I’m not driving one of the work cars.

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As I’m going through a slightly windy part of the route I remember a conversation I had with my mum in the same spot 12 years.  I’d just bought my first car and we were driving home.  Dad was driving ahead and Mum decided she needed to tell him something.  She was going to phone him and I suggested that maybe as we were in a fairly remote area we probably wouldn’t have reception.  She couldn’t understand why that would be the case when we could see his car.  Sorry mum, they’re not walky talkies

120km

I’ve remembered 4 things that I’m sure I’ve forgotten.  Nothing urgent, just inconvenient.

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I’ve forgotten what it was that I remembered I’d forgotten.

136km

Time to stretch our legs in the largest town along our route, a thriving metropolis of 2300 people!  Coax the dog out of the car.  Wander around letting her sniff things.   Coax her back into the car with treats.  Check the boot to see if maybe I remembered to pack the lollies.  Nope, I really did forget them.

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One of my favourite road signs.  Sounds much more pleasant than a bumpy road.

 bumpy road

My other favourite is “Fatigue Kills”.  It hasn’t got me yet!!

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The scenery

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180km

swamp

I’ve been driving this road regularly for the past four years.  It was only during floods about 18months ago that I realised this was swampland.  Prior to that the droughts in the area had dried it out.

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Starting to fade.  I could do with those lollies.  I know they’d make me feel terrible later but a sugar high would help me get through the last 100km

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Christmas in rural Australia – I was hoping to see the old scarecrows that a farmer dresses up as a Christmas family watching TV would be out but I either missed them or they’ve been put away.

christmas letter box

213km

A duck? Out here? Just out of the corner of my eyes I’m sure that’s what I saw.  Can’t have.  Hold on, could have been a snake, a brown snake curled up with its head up.  Hmm.  Not going back to find out.

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Straight ahead and behind.  The farmers in this region have had it really tough.  After a decade of drought there were massive floods through the region about 18 months ago.  Now everything is so dry again.  Many farmers are unsuccessfully trying to sell up, and walking off the land.

aheadbackward

 

 

 

 

 

 

 

 

 

 

247km

I could really do with a bathroom break thanks to the coffee and the attempt to keep hydrated…but you saw the scenery

263km

There’s some fantastic Australian music on my playlist.  I just hit play on the alphabetical list and am finding myself singing along to some oldies but goodies (You Am I, Powderfinger ) as well as some newies (The Rubans, San cisco).

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Nearly home…the ground starts to turn red.

red dirt

298km

Made it

the end

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 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 12, 2012

Big Day Out

Posted in Progress tagged , , , at 2:25 pm by Reva

Woo hoo!  I’ve been outside.  In the (cold) fresh air! And had human contact! And coffee! And cake!  Small things hey?  I’m not used to being cooped up for so long.  I usually push myself back to work after a day or two because living alone I start going stir crazy home alone for much longer.

This week I’ve had conversations (in person) to 2 people – my GP and the pathology nurse who took my bloods (oh I guess the receptionist at the GP too).  So when one of my lovely colleagues told me last night she had an ADO and asked if I’d like to go for coffee I jumped at the chance.  Human Contact!!  Fresh Air!!  Oh, and an opportunity to start easing my body into normality before heading back to what is likely to be a crazy busy week at work next week.

We went to this gorgeous little cafe that she found earlier in the week.  It was quiet, there were no fluro lights, parking was good so I didn’t have to walk too far…and the food was great.  It has only recently opened and I think it must in in a heritage listed building – the wall paper was peeling off the walls in places and there were signs asking people to not remove it.  It was furnished with old farmhouse style wooden tables.  The food was cooked on site and the lemon lattice slice was beautiful.  If my brain wasn’t still slightly in a fog I would have remembered to take a photo (I’ll have to go back 😛 )

Anyway, it was enough to wear me out for one day (and I have a few jobs I need to get done through the day).  So that’s all I’m writing today (I just wanted to share what on a normal week is no big deal but this week feels like huge progress).