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.
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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 11, 2013

A Week in Review

Posted in Crashes tagged , , , , , , , , , , , at 12:44 pm by Reva

I’ve had a busy week, which has been both good and bad, and with the current heat wave and humidity my brain is just not working.

  • I think I have a new symptom.  Nausea.  I’ve had it off and on for a week now.  A friend who works in chronic pain management tells me that nausea is often decreased if you can manage to distract yourself with thing you enjoy.  Makes sense – the worst of it has been during long meetings.   Nausea
  •  I had to work for a day on the other side of the city in preparation for some students we have starting with us in a few weeks.  It’s a 1½ hour drive one way if you get a good run on the freeway.  Instead of putting myself through 3+ hours of driving I took the opportunity to have a catch up with a good friend who I’ve been trying to catch up with since Christmas.

 Traffic slows to a crawl on the Monash Freeway...

  • I had the opportunity to spend some time with some academics in my profession.  I’d really love to do some further study, it’s something I’ve looked into off and on over the past 5 or 6 years; but I don’t think my brain would let me, especially at the moment.

how to title your thesis

  • I finally took the step of calling the office of my specialist.  I was expecting to be told that either they weren’t taking new patients (and given that it’s been at least 4½ years I expect to be a new patient) or if they were there would be a 6 month wait for an appointment.  It turns out that I was right that he isn’t taking new patients, but I’m still in their system so they booked me right in…in a month’s time!!

 

February 9, 2013

Stuff

Posted in ME/CFS tagged , , , , , , , , , , , , , , at 11:35 am by Reva

So much has been happening in the last week or so, and I’ve had so few spoons left to write about it all; but I have a week off!  When I scheduled this week off (it was the next available week when I realised I desperately needed a week off just before Christmas) I planned to head interstate to catch up with my closest friends.  When I got sick at home at Christmas time I decided to return home for part of the week instead, to catch up with the friends I usually meet up with at Christmas and missed out on because I was sick.  Now, 6 weeks on, it has turned into “I’m going to hang around my house and do stuff”. 

By “stuff” I mean things like put away the washing.  For the past four weeks I’ve been living out of my washing basket (clean washing – I at least manage to clean it).  When I can’t find what I need in the washing basket I go to my dryer, which has the most recent clean washing in it.  The dryer gets emptied only when I’ve completely run out of enough clean clothing (or I can’t find it) to dress in an acceptable way to go to work and I have to do another load of washing.  This system has been working for me.  It’s let me get away with doing a few things that I probably wouldn’t have managed had I stuck with previous systems.  For a while I felt a little guilty about using my dryer when the weather has been so warm and the washing would have dried in half the time out in the sun but I got over it.  But my goal for today was to hang the washing on the line, and I’ve done it!  I’ve also emptied the clean washing basket and folded the washing.  AND I’ve taken the washing out of the dryer and folded it.  It’s all on my bed but it is closer to being put away than it’s been for weeks.

More “stuff” I plan to do is to go to Ikea and buy a set of drawers I’ve planned to buy for the past 4 years.  Yes, that’s right, 4 years.  Ikea is a 2 hour drive and there is no way I’m going to Ikea on a weekend so I haven’t managed to get there when I’ve felt up to driving that far for just a set of drawers.  I’ve decided that under the current circumstances doing a return trip in one day would be ridiculous so I’m turning it into a holiday.  I’m staying in a hotel about 10 minutes away, right near a friend, and catching up with a few friends for a casual dinner at one of their homes.  It means that I can stick to my new morning routine (which I’m still perfecting but will write about soon), miss the morning traffic, buy my drawers and be back at the hotel before afternoon traffic and have a good nap before dinner.  Then make my way home the next day as quickly or slowly as I feel (I’m picturing a leisurely brunch in the sun but we’ll see how that pans out).

I also have a heap of phone calls I need to make (somehow my brain can only cope with one a day of those so they tend to build up), baskets of stuff to put away (does anyone else tidy the house by sticking everything in a basket to “put away later”? I think I’m up to three baskets) and other general day-to-day stuff that seems to have crept up on me.  The best thing about all this “stuff” is that it’s been waiting so long to be done I really am not worried if I don’t get it done.  No pressure. 

What I’m really looking forward to is sewing my quilts and even if the other “stuff” doesn’t get done I plan to do some sewing and writing every day.

February 2, 2013

Fighting the Sleepless Nights

Posted in Crashes, Strategies tagged , , , , , , , , , , at 10:43 am by Reva

Sometimes when it feels like everything around you is falling apart, when you are playing things that are frustrating you or you feel like you aren’t doing properly around in your head instead of falling asleep.  When it feels like these things that you feel like there is no solution to these things but you’re determined to find one, or work out where you went wrong, I think it helps to take a step back and remind yourself of the good things you are doing or have achieved, and of the bigger picture in general.

As I’ve mentioned I’m going through a crash that for me is one of the worst I’ve had.  I am feeling like I am not doing my job properly as a result and that I don’t have the support of my direct manager.  I acknowledge that some of this is because I’m yet to find the courage to sit down with her and fully explain to her what my “fatigue thing” is (and that no matter what response I’ve had with regard to this in the past, it’s a conversation that has to be had).

Last night as all of the contradictory comments, the emails that contain underlying complaints certain people don’t feel that they are not getting what they expect from me and how they could do a better job, the conversations I’ve had and wished I’d handled better and the conversations that I want to have but am too scared to have were playing in my head when I should have been sleeping I turned on a light and started to write down the things I am doing well and have achieved.

  • I have acknowledged that I’m not getting better like I used to and have started to take steps to improve my health.
  • I have ordered a meal program where all my meals arrive pre-prepared to my door once a week.  This has helped my save energy that I would normally use on supermarket shopping, meal preparation and washing up.
  • I have started to reintroduce previous treatments – I am doing my best to drink my electrolyte solution every day.
  • I’ve spoken to our HR department about my options and now have avenues to pursue.  Plus I know I have people who can support me when it comes time to have the above conversation.
  • I’m doing reasonably well at keeping my new year’s good intentions.  I’m doing a reasonable job of leaving work on time, I’m sticking to my timetable but trying to be flexible if I can. I’m colour coding my day and my patient list so I can quickly identify the priorities.
  • I am accepting I need help and researching the best way to get it.
  • I am starting to stand up and state when I believe that something I see is affecting those around me (now to start doing it when it’s just affecting me!)
  • I am realising that if those around me are also stressed, anxious and exhausted, it is not me and my medical condition that is the problem.  It is the environment that I am in that is affecting my medical condition.  And while I think the above points are going to help bring my health back on track, I think this point is key to solving the problem.

January 10, 2013

To Know It Is To Loathe It

Posted in Crashes, ME/CFS, The Bad Days tagged , , , , at 7:17 pm by Reva

Today I hate ME/CFS.  Not that I usually love it, or even like it, but usually I tolerate it.  It’s there, there’s not a lot I can do about it.  But today I am having a day where I really hate it.

I hate the feeling of waking up tireder that when I went to bed.  The feeling that my eyes are stinging, that I would have been better off staying awake all night because for some reason the idea of having stayed up all night seems less tiring than how I feel this morning.  And the reason I know it’s worse than a normal night is that I slept right through the night.  Usually I wake up at least once.

I hate that the dreams I have during a crash are insanely weird.  I never remember the full story, just snippets.  From last night I remember being in a cooking competition, making “a trio of nachos”. There were appetizer ones that had individual corn chips lay neatly on a tray, each with a dab of tomato salsa and a sprinkle of cheese, grilled until just brown, then drizzled with an avocado sauce in a neat bottle.  There was also a heap of people who I haven’t seen in years, who I was sharing a house with – I think I was back at uni.  There was hiding from someone, in what looked like a storage room with glass windows and open metal shelves – like the ones you see on medical shows on TV.  Then I was at work, in some place I don’t recognise.  And the weirdest, hiding parts of a dead body.  I have no idea what that’s.

I hate that on these days I become so emotional.  The smallest thing sets of the tears.  I had one of most emotional work trips today driving through a small town where a murder occurred since I last drove through, past a road sign to another small town where out of control grass fires tore through homes earlier this week, past the fire fighters out washing down there truck after fighting those fires.  On a regular day these would have touched me but today I welled up.

I hate the way my brain seems to go on strike, the way it stops mid-sentence.   It reaches a point where it not only happens when I’m talking but even in my thoughts.  And if it doesn’t stop it goes off on tangents so often that I suddenly stop with no idea what I was supposed to be saying.  Trying to get back to the point is like treading water in my head…if I keep talking maybe I’ll remember the point and find my way back to it.

I hate that there is so much I need to do and knowing that it’s not going to happen.  Or if it does happen, I’m going to be in even worse shape.  I need to wash my car properly – it has moss growing in crevices because I keep giving in and taking it to a drive through car wash so it’s never properly clean, or dried.  I need to change the sheets on my bed, but making it will probably take me all day.  I need to make a heap of phone calls.  I need to restock my freezer. 

I hate that despite knowing that I need to do all of this I spend all spare time outside of work sitting on the couch, watching bad summer TV.  And that when I get back to work people ask what I did on my day off/weekend, because when I try to come up with something the best I can manage is “watch tv” or “not much” and they respond “oh that sounds so nice, I wish I could do that”. I don’t have the energy to do even the seemingly restful activities like sewing or writing or reading.  Sometimes even watching TV is too much. 

Most of all I hate how negative I become.  I’m sure I’m not like this on the good days.

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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 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”).

let-take-down-notch-friendship-ecard-someecards

December 6, 2012

Posted in Crashes, Journey tagged , , , , , , , , , , , , , , , at 8:28 pm by Reva

This time 2 years ago I was assessing an ICU patient who was waiting for a transfer to the wards.  He’d had a laryngectomy the day before, and despite no longer having a voice he was rather chatty.  As a result it was a long conversation as my lip reading skills are pretty poor and he had to write a lot down.  His nurse was teaching her student, just behind us.  All of a sudden my ears started to ring, and I felt hot and flushed.  I felt extremely nauseous.  I quickly excused myself and walked over to the nearest chair.  I put my head in my hands.  The chair was behind the nurse.

Running through my head was a thousand thoughts.  Was I going to be sick? I didn’t want to be sick.  But if I moved I’m sure I would be.  Where was the nearest bathroom?  About 10metres away.  It may as well have been 100m.  It was a staff bathroom with a keypad on it to keep visitors out.  I didn’t know the password.  Where was the next nearest bathroom?  Way down the corridor.  I didn’t feel I could talk.  I could feel the sweat literally running down my back, and my face.  My ears were still ringing, the smallest movement of my head made it worse.  I tried to take deep breaths.  I could hear the nurse saying to the patient “Did you have something else to tell Reva?” “Is there something you want to ask her?” I glanced up.  The poor patient was madly shaking his head and gesturing towards me.  The nurse turned around to look at me, just as another nurse came out from behind a curtain.  They both lunged for me at the same moment and each grabbed me, one under each arm.  Strangely there was a bed sitting out in the communal area.  They walked me over, lay me down and put up the foot of the bed.

Fainting

Immediately I felt better.  Apparently I was ghostly white.   One checked my blood pressure and another checked my blood glucose level.  Both were normal.  They called over the new doctor and said “Have you met Reva? She works here” – nice way to be introduced.  They were debating what to do with me.  They offered their comfy couches for a lie down for the rest of the day.  I was adament being the only person in my department on duty that I would be fine to go back to work.  They were feeding me fruit juice and water.  Then suddenly someone decided to would be best to send me to the emergency room, just for a full check.  Before I could blink I was being transferred through the halls of my workplace on a stretcher, down into the ER.  Fastest way to get into ER I tell you.

There I sat for the next 3 hours.  I was no longer acutely unwell but I felt weak and a little embarrassed.  I was given some sandwiches and fruit.  The process of eating was draining so I just picked.  Saline was run, I was hooked up to a cardiac monitor, bloods were drawn.  And I sat.  Eventually I was told there was nothing wrong, it was probably just a symptom of CFS and if it was cardiac we’ll just wait until it happens again.  Lovely.

A few months later the same symptoms overcame me.  This time I was with a patient who’d had an amputation (I’ve been working with patients who have had major surgery and wounds for years so I promise I wasn’t just woozy).  I sat down when I felt the symptoms and the patient asked if I’d like him to call a nurse for me.  I said it might be a good idea.  Next thing he swings himself up on to his crutches.  I told him it was okay just to press the call button, but he insisted that “buzzers are for sick people”.  He rounded up a nurse and same story.  Normal BGL, normal BP.

My GP is great.  She believes they’re harmless vaso vagel events and is happy to refer me to a cardiologist, but this has in total happened about 6 times in 2 years, so putting me on a cardiac monitor isn’t likely to pick anything up.  I suspect its (just) orthostatic intolerance.  One time I was seated when the symptoms came on – that one is a mystery, but all other times have been when I’ve been on my feet for a while, or very soon (<5mins) after I’ve stood up from lying position.  One of the most recent events was also in ICU.  The nurses grabbed me, and stuck me on the ECG machine but there were no abnormalities.  After this they threatened to stick the holter monitor on me every time I went in.

Just another frustrating symptom of ME/CFS I guess.  I haven’t had one of these episodes for over 6 months.  Here’s hoping I haven’t just jinxed myself.

November 18, 2012

How Does It Feel?

Posted in ME/CFS tagged , , , , , , , , , , , at 5:02 pm by Reva

Usually when people ask me what it’s like to have ME/CFS I direct them here to “The Spoon Theory” written by Christine Miserandino.  I found this in the early days of my diagnosis and think it explains the decision making process we go through each day so well.  But occasionally people want more, they want to know how it physically feels.  I’ve heard people compare it to having a really bad flu that just doesn’t go away, in combination with a hangover, running a marathon and so on.  But I find it hard to do this.  I’ve never had the flu (touch wood), I never had particularly bad hangovers or at least when I have had a hangover I’m pretty sure it was actually lack of sleep that I was symptomatic of, not excess alcohol.  And I’ve never run a marathon (and let’s face it, it probably will never happen).

I have trouble verbalizing what I want to say.  My brain and mouth don’t seem to connect most of the time.  So I thought I’d write it down to try to convey it.

I feel like my limbs are filled with sand, like they are so heavy I can’t lift them.  Every step I take is like dragging a sack of sand behind me, and my arms hang loosely by my side because they’re too heavy to lift.  If I’m carrying something, it takes every ounce of willpower to keep my fingers gripped so that I don’t drop it.  My head is heavy too, so heavy my neck can’t hold it up on its own and it needs the help of an arm which in turn needs to rest on a table.  The room around me sways.  Many a time I have stopped and steadied myself and wondered if there has been a small earthquake, then looked around and realized no one else felt anything.

The idea of eating is exhausting even though I’m hungry.  It’s easier to stick to soft foods that I don’t need to chew, and preferably can eat using one arm (while the other is still holding up my head).  Unfortunately this can lead to some bad choices.  Nuggets and chips, chocolate; my body craves fatty or salty foods or combinations of both.

There is pain all over.  Kind of like the pain you have after a good work out, but it’s everywhere, and it moves.  I can’t get comfortable because when I move one part of my body to make it more comfortable another part then starts to ache.  The best way I can explain it is it feels like muscle pain, but it’s more focused around my joints.  It’s bad when I’m standing.  Sometimes it’s worse when I’m lying down.

My head feels like it’s filled with cotton wool. There’s constant tinnitus.  It drowns out all the other noises and makes it hard to concentrate.  Speaking of concentration, I can’t.  My mind can’t stay focused on anything.  I can’t read because I find while I’m concentrating on the print, I can’t take in what the words are saying.  Of course, that’s if the book isn’t too heavy for my already heavy arms.

I can’t carry on a conversation because between listening to another person, computing the story and coming up with a response, my brain has somehow disconnected from my mouth.  It’s worse if I’m in a group.  When my mouth finally opens the story has moved on and whatever I’ve said is no longer relevant.  So I sit back and listen – at least I know what’s going on then.

Bright lights make my eyes flicker and squint.  And I’m cold, so cold. Right down to my bones cold; and I can’t get warm even though I can feel it isn’t ACTUALLY cold. That is until the middle of the night when I wake up sweating.  I can feel the air is cold but I’m SOOOO hot!!

I’m constantly trying to catch my breath, and feel like I’ve been walking up stairs.  I try hard to disguise it, especially around people who don’t know. I don’t want them to think I’m just unfit.

My throat hurts, like the start of a cold or flu that just seems ready to tip me over the edge but doesn’t quite get there.  I start to sniffle and sneeze but I know it isn’t a cold.  It’s just my hayfever that seems to flare up when I’m already tired on the verge of a crash, not when the flowers are out and the wind is blowing like with other people.

All of my symptoms change from day to day, and one person’s symptoms will never be the same as the next persons.  Each ME/CFSer is a unique combination of symptoms, aches and pains.  It’s probably why diagnosis is still such a long drawn out process.  It’s also what makes it so hard for us to explain.

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