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.

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March 30, 2013

The Brain Game

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

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

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

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

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

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

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

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

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

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

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

February 22, 2013

From Then ‘Til Now

Posted in Journey tagged , , , , , , , , , , at 8:27 pm by Reva

With my current lingering crash I’m considering returning to the specialist I saw about 5 years ago. This specialist played a big part in my acceptance and understanding of ME/CFS, and while life has intervened since, I think he may hold the key to some symptom relief. You can find the prequels to this post here, here, here and here and here and here and finally here (hmmm, maybe time to update and make this a little more user friendly…) .

A while after visiting the naturopath I found out a GP in Victoria who specialised in ME/CFS. I was pretty excited, especially when I found that I didn’t need a referral. I was a bit concerned about the cost of the appointments but the cost of interstate travel to get there, not to mention the toll a visit to this doctor was going to take on my health.

I was pleased when I found out the initial appointment could be done remotely, using surveys I completed and sent back and a phone call with the doctor’s practice nurse to collect some more data. There was also a request for blood tests which were sent back to the doctor.
I learnt a bit from the phone assessment. One of the things that really stuck with me is that the only activity that isn’t considered to use energy when measuring activity levels is watching television (and sleeping or lying down). I watch a lot of television. As a general rule, if I’m not working, sleeping or doing the essential household chores, I’m watching television.
The second visit was a face to face visit with the doctor. He was a kindly man who explained things really clearly, with lots of diagrams. He wrote so much down for me to take home, obviously used to working with people who had poor memories. He did some more tests, and prescribed a few follow on lab tests based on some of his findings.

Pin Cushion

Just another trip to the pathologist

One of the tests he did that day was a standing test. I started in a reclining position, and blood pressure and pulse rates were checked. I then had to stand with these tests being repeated every two minutes for up to 20 minutes. While standing I wasn’t allowed to move – not even wriggle my fingers or toes. The results were put into a computer program and changes in my pulse pressure and heart rate were calculated and graphed. Apparently this test is done to rule out POTS. During the test there was a 29% increase in my heart rate and a 29% decrease in pulse pressure. I was told that a 30% change in pulse pressure warranted further investigation for POTS. He decided to treat this as reduced blood volume and prescribed an electrolyte solution to drink a litre of each day, along with a medication to stabilise my heart rate.
He suspected I also had symptoms resulting from reactive hypoglycaemia and increased urinary excretion of potassium, so he sent me off for some tests to follow this up.
And finally at the end of the visit, using information from the questionnaires and the tests that had been completed he actually officially (well, to me it was official) diagnosed me with ME/CFS. We went through the Canadian Diagnostic Criteria together and the outcome was pretty clear. A few of the criteria I wondered about, like the immune manifestations. I never (touch wood) get sick. He pointed out that that I have chronic hay fever, asthma and allergic dermatitis. His examination also showed I had tender lymph nodes which fall under that category.
I decided to bring a good friend along to my second appointment as while the information the doctor gave me at my first appointment made sense at the time, I had trouble explaining it to others. At this second appointment he confirmed that I had reactive hypoglycaemia, high excretion of potassium (which apparently causes “sighing breaths”) and borderline ratio between Vitamins D2 and D3 (which is apparently related to some dysfunction in the immune system). He decided to treat the potassium issues. The vitamin D issue was so border-line and the treatment was intense and long, and it was questionable whether it was having any impact. I went home with 2 new medications – one to prevent the potassium leeching out of my body, and another to replace the potassium.

I did have a third appointment which was a phone consult. After this appointment I started a regime of vitamin B12 injections, starting with one a week, and working up to daily. They were subcutaneous (like insulin) and not intramuscular like vitamin B12 Injections usually are so I learnt how to do them myself.

I was starting to feel like this!

I was starting to feel like this!

I probably kept all of this up for another 6 months or so. The B12 injections were the first to go. I moved interstate in this time and it became inconvenient and expensive, and I didn’t feel that I’d made any progress. Slowly the other treatments stopped too. The potassium channel regulator went next. It was also expensive, and it didn’t think it made me feel any better either. In the end I stopped the electrolyte solution because of a number of reasons. Like all the other things, I didn’t think I felt any better for taking it. It had a slightly artificial taste to it. It had sugar in it – it seemed like a contradiction to take on an extra 60g of sugar and 400kcal a day when I was already struggling with my weight and had a number of risk factors for Type 2 Diabetes, when the solution didn’t make me feel any better.

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Skip forward about 3 years to now – I’ve been taking that electrolyte solution (half the prescribed amount) for the past month or so. I’m still not sure it makes me feel any better but it feels like I’m doing something. I feel like I’m starting all over again from scratch. Well, maybe not scratch but close to it. My next step is to discuss “where to from here” with my GP. Unfortunately I can’t get in to see her for another two weeks, but I guess that gives me another two weeks to write a list (because there is no way my brain is going to let me remember on my own).

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 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 29, 2012

Tug o’ War

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

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

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

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

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

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

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

November 23, 2012

A Roadblock

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

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

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

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

November 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.

November 7, 2012

More of My Journey and the Development of Empathy

Posted in Journey tagged , , , , , , , at 3:25 pm by Reva

After I had no luck with the Elimination Diet I kept researching.  I found a local Naturopath who reportedly specialised in managing ME/CFS.  This was a big deal for me.  In my training as a health professional I’d always seen the evidence behind what Naturopaths practiced to be weak, but modern medicine didn’t have an answer for me so I was willing to give it a chance. I did go in expecting that I’d be put on a wheat and dairy free diet as I thought that’s what all naturopaths did.

The naturopath did a pin prick blood test to check my blood type.  She then laid me on the couch and did a type of reiki.  She asked me what happened in 1992, stating that was the year this all began.  In 1992 I’d developed a rash all over along with general fatigue, and it was put down to a virus when blood tests were negative for Epstein Barr and Ross River viruses.  I was then put on the “Blood Group Diet” and given a series of supplements.

While the scientist in me was strongly against the blood group diet, the patient within was willing to give it a chance.  I figured that maybe she was onto something with the 1992 thing, and while the evidence for the blood group diet was shady it would be harmless assuming I could have a balanced diet.  Ironically my blood group was supposed to not have wheat and dairy.

I persevered for several months, returning to have the supplement tablets adjusted and waiting for that point where I started to feel better.   But that point never came.  I eventually decided I was wasting money on supplements that didn’t seem to be doing anything, and if anything the diet was exhausting to follow.

While I still think as a scientist I think having a chronic illness has given me an insight into the desperation that patients I work with also feel with their own treatments.  When modern medicine doesn’t have the answer I can understand a little about why people clutch at straws.  I’ve recently noticed that I seem to be more open to some of the less mainstream strategies people might want to try.  I can understand when your health professionals don’t have the answer you’re willing to give anything a try, even if the evidence isn’t strong.  While I suspect some people might see this as naive I prefer to think that I’m open minded.

October 27, 2012

Elimination Diet

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

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

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

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

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

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

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