June 26, 2013

Where I’ve been

Posted in Food, ME/CFS tagged , , , , , , , , , , , , , , , , , , , , , , , , at 3:59 pm by Reva

I have had a crazy month or so which has kept me away from the computer. To an extent I’m paying for it all now but I’m getting by on the fact that I have a week off work scheduled for three weeks’ time. I made myself take a day off yesterday because I don’t want to be taking a week of holiday leave to sit on a couch if I can help it. The truth is it’ll probably happen but I do have a few things I do want to get done.

So where have I been and what has kept me away?

Three weeks ago there were some big birthdays in my family and I volunteered myself for cake making duties. The first lot of cakes I made were for my Dad. I decided cupcakes would be easiest because they can be easily frozen. I decided to make toppers myself and so that I wasn’t doing them all at once I tried to plan ahead and make them over several weekends. As usual I underestimated how long they would all take and spent my weekends going from the kitchen bench to the couch to rest. I’m so grateful for the stool I use at the bench because I’m sure that helped. I coloured most of the fondant myself, except for the black so ended up with lovely aching hands and arms afterwards. The last weekend before the party I also made up all of the buttercream.

photoThat last weekend before the party was also the weekend before my goddaughter’s birthday. I’d decided months ago that I wanted to make her an apron, and I already had the fabric so between rolling fondant and making buttercream I was cutting fabric. A pattern would have been helpful but I had a picture in my mind of how it would look so I played around with the fabric and hoped for the best, and I actually managed to get it in the post and to her house in time for her birthday.

On my day off the week of the party I made my brother’s cake – a caramel mud cake at his request. It was a very easy cake to make and kept beautifully until it was served four days later. I had great intentions of decorating this cake as a laptop computer and made a fondant keyboard in preparation later the same day.

The following evening I made the chocolate cupcakes – a simple melt and mix cake that made a large quantity. I had decided this would be easier than freezing them – I wouldn’t need to find freezer space, and the recipe was easy and make a large amount of cake. Or so I thought. In the end I had fewer cakes than planned so decided at the last minute to make an extra batch. I had enough of everything except for eggs (as I’m not supposed to be eating them at the moment). I replaced the egg in the mixture with “No Egg”, an egg replacement. Big mistake. All of the cakes came out with a big hole in the middle. They didn’t just not rise, there was literally a hole in the middle. I gave up for the night then.

The next night after work I drove home to my parents for the party, loaded up with cakes and decorations. I have never let myself do that drive in the evening before in winter. The last hour or so of the drive was not great but I wouldn’t exclude doing it again.

With the help of my sister we finished the cupcakes on the afternoon of the party I piped white buttercream on the cupcakes and topped them all with toppers – little red telephones, cameras and bicycles. We were pretty pleased with how they looked in the end (I did have to make an extra batch of cakes though).

The party weekend was a massive one for me between the busy lead up, the long drive then the late night, not to mention the socialising. The nodding and smiling when people kept telling me how “well” I looked. I think I lost count of how often people told me that and I still don’t know how to respond when I don’t feel “well” but I went with nodding and smiling. Easier than going into detail with EVERYONE. And it was truly not everyone’s business how I was really going.

The following night we had a smaller get together for my brother’s birthday. We went to dinner and a local restaurant then return home for dessert. By mid-afternoon the cake was still uncut and un-iced in the container it travelled in. An executive decision was made to go for something easier than originally planned. After some time on Pinterest and Google Images we came up with a plan, and hit the supermarket to stock up on snickers bars, chocolate coated peanuts and caramel sauce. We mixed some caramel sauce through the buttercream icing and lathered it all over the cake. Next we stuck chocolate coated biscuits around the edge. We chopped up the snickers bars and sprinkled them over the cake along with the chocolate coated peanuts, then drizzled more caramel sauce and melted chocolate over the top. Not too bad if I don’t say so myself. And even though I’m not supposed to be eating majority of the ingredients (wheat, cow’s milk, egg and peanuts) right now I had a sneaky little slice – so worth the stomach pains afterwards!

So all of that was more than enough for little old me, but to top it all off there was a family wedding. Knowing that weddings generally involve socialising, late nights and standing, I took care to rest the weekend in between as best I could. For me it also involved some more travel (a shorter trip this time though). As expected it was a late night. I also slept poorly the night before – I think four hours all up – which hasn’t happened to me for ages. There was a lot of standing after the ceremony – I was trying hard to find somewhere for my Nanna to sit so it wasn’t as obvious I was doing it for myself but even poor Nanna had to stand around for a long time. I was fortunate that I could sit for most of the time at the reception though, and even ran into my prep teacher who I haven’t seen for about 25 years which was lovely (also lovely that she remembered me).

So that’s it. Clearly it’s time for a nap because I can see that I’m rambling. Things are getting back to normal now though and I promise not to stay away so long next time!

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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.
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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.
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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?

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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.

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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.

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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.

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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.

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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.

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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.

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

December 13, 2012

Angst-ridden Adolescence

Posted in Journey tagged , , , , , , , , , , , , at 8:32 pm by Reva

If you don’t like listening to whiney tweens/teens, it might be a good to stop reading now because I suspect I may end up sounding like one before this ends.  I’m having one of those situations that as a grown up I know I should just get over but for some reason my mind reverts back to my insecure youth. But I’m quickly learning that if I get something that’s bothering me down on paper (or computer screen) the answer comes to me, or if it doesn’t I still stop thinking about it.

I have a friend who I had considered a close friend.  She lived in another town, as most of my close friends do.  We spoke most days by long SMS conversations.  We’d give each other support and advice about things going on in our lives.  About two years ago she relocated to the town where I live.  She stayed at my house for three months while the settlement for her house came through.  We talked about all the things we’d do now we lived only 2 blocks apart.  We could have meals together each week.  We could go for walks together after work.  We’d try to work out the best place to become our “local” for regular Friday night drinks.  We’d go to markets.  We’d watch our favourite TV shows together.

When her settlement came through I bought her house warming gifts, and baked gluten free treats for her guests.  And then everything stopped.  I invited her for dinner – she was busy.  Her mum was staying (I know her mum, we buy each other birthday and Christmas gifts).  He uncle was coming to do some work on her house.  She got a dog and had to take it to dog school.  I took a step back and decided to let her settle at her own pace.

I went out and decided to join a community group, something we’d talked about doing together that she suddenly was no longer interested in doing.  I got on with my life.  Occasionally if it was appropriate I’d ask her to come to local events with me, things that we’d talked about doing in the past but she was always busy, her mum was visiting, she didn’t like crowds or she was broke.  We’d still catch up, but only on her terms, and only at McCafe, with our two dogs tied up next to us.  It was her 30th birthday early this year.  She’d done some lovely things for my 30th and I wanted to return the favour.  I asked her out for High Tea.  She was busy, her mum was here and she had to take the dog to dog school, and she couldn’t afford it, could we go somewhere else, like McCafe?

A few months ago she had severe gastro.  I offered to get her some things from the shops.  I had my head bitten off, if that’s possible via SMS.  I knew she was unwell and let it go.  I grabbed some lemonade, dry biscuits and a magazine and left it by her front door.  When she thanked me I told her that I understood what it was like to be stuck at home sick, and that even if you don’t feel like talking to anyone it’s still nice to know someone is there for you.

A few months later when I had my crash she didn’t repay the favour.  She asked me to catch up the following Saturday for coffee – because she had to go to the shops anyway.  In the past I would have dropped anything, but generally being in a better place I said no, I was unwell and it would be too much for me.  She asked what was wrong and when I told her there was nothing.  No enquiry as to whether I needed anything brought to me, or done for me.  A few days later she asked something again and I apologised and reiterated my previous comments.  I didn’t go into great detail other than I was too unwell to go out.  If I hadn’t had my epiphany about friendships I probably would have been really cut up about it but by now the behaviour was so prolonged I would have been shocked if there’d been any recognition.

Last Christmas we caught up for take away pizza in a local park where the dogs sat tied to a fence.  This year I thought it would be nice to have something a little less stressful – juggling wrapping paper, Christmas gifts, pizza and dogs on a park bench – so asked if she wanted to do the same thing but in my back yard so the dogs could be free to run and we wouldn’t have to juggle.  The response? I’m busy, maybe but mum will be here soon so it’ll have to be before she gets here.  I’d rather go to McCafe.

So suddenly the brilliant place I was in a few months ago is gone and I feel like I’m back to the insecure self I have been in the past, and don’t know why I’m there – I’m plenty busy enough without worrying about this stuff.  I feel I’ve been demoted to the McCafe friend.  I don’t want to go to McCafe.  McCafe have hard plastic uncomfortable seats that make me ache all the following day.  I can’t bring myself to reply because I’m swinging between being a softy grown up (“Sure, McCafe sounds wonderful.  How’s Monday at 5.30?”), a sooky anxious adolescent (“have I done something to upset you? Don’t you want to be my friend anymore?” – to which I envision the reply “well if you don’t know, I’m not telling you”) and the slightly unpleasant (“nope, actually McCafe sucks, especially for a Christmas celebration.  If that’s all I’m good for let’s just skip it”).

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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.

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 11, 2012

In The Beginning

Posted in Journey tagged , , at 1:19 pm by Reva

So it’s a dreary cold mid-Spring day here, so cold there is snow in the ranges. And considering the most exciting thing I’ve done today is going for blood tests I thought I’d start to write about my ME/CFS journey. I’ll probably write this over a few posts.

I’m one of the 20% of people with ME/CFS who had a gradual onset of the condition. I don’t have a specific time that I can’t pinpoint when my symptoms started, but I can remember things over my adolescent/teenage years that may be linked.

I can remember sitting in the passenger seat of the car with my mum driving, and her telling me to stop being so stupid. My body had lurched forward as she stopped or went around a corner. She thought I was making fun of her driving but I remember I hadn’t meant it, I was just so tired I didn’t have the strength to hold myself up properly.

I can remember having headaches so bad I’d cry myself to sleep. I wouldn’t call them migraines from what other people have told me about them. But they were always worse when I was getting ready to sleep. I’d feel so sick from the pain that the idea of getting up to take something was horrifying. And often it was so long since I’d eaten I knew I’d also need a snack so the pain killers didn’t make me vomit.

I can remember these headaches were always worse the more I worked at my part time job – working in a supermarket deli. 3-8 hours on my feet, on a concrete floor. Reaching into a cabinet to serve a customer was always a struggle due to my lack of height so that probably didn’t help. Leaning forward over a deep sink to do dishes. Lifting heavy boxes. Lifting heavy trays of raw chicken. I can remember after working a close which involved scrubbing out one, maybe two, ovens, a Bain Marie, maybe a cabinet fridge and the concrete floors, I’d lie in bed for hours before I could fall asleep. Every inch of my body ached and it hurt to move. My legs, my back, my arms, my wrists, my feet, my toes, my knees, my elbows, my ankles, my fingers, my face… It didn’t occur to me that maybe this wasn’t normal, after all everyone says their body aches after hard work.

I can remember trying to bring up the fact that I was so tired with friends, but when the response was always “oh yeah, me too!!” I once again thought it was normal.

I can remember not knowing why everyone else around me could manage to study full time, work part time and still go out and party at night while I could barely manage the first two. And for at least one year of uni I know this caused me to start wondering if there was something wrong with me. By the end of my second year of uni I’d failed my first subject. For someone who’d always sailed through this was devastating. I’d always thought that my ability to do my school work was what made me important. I couldn’t seem to remember details like I used to. I was never good at sport, was never part of the popular group, even in my extended family I felt like an outsider so now I wasn’t smart either. But everyone fails a subject at uni so once again everyone else brushed it aside.

But I knew something wasn’t right and early the next year finally took myself to a doctor. It was the 6th of March 2002. I told her how exhausted I was, how I was struggling to get to my classes which wasn’t normal for me. She was understanding and sent me off for blood tests. A week later – my 21st birthday – I went back for my test results. She told me I didn’t have glandular fever, my iron levels were at the low end of normal, and there was no infections. She then said to look after myself, rest so that it doesn’t “turn into” chronic fatigue syndrome and come back if it doesn’t improve.

And so I went home.