June 26, 2013
Where I’ve been
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.
That 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!
May 11, 2013
A Crystal Ball Maybe?
Tonight I was at dinner with some colleagues. Towards the end of the dinner one person “shushed” the rest of the group and when everyone was quiet she asked “when do you girls plan on becoming mums?” I find this to be an inappropriate question to ask a group of people that are colleagues, not close friends. And to be honest there were probably only one or two people there that I’d consider to be friends. I’m not sure if it’s just because I didn’t know how to answer, or at least I didn’t know how to answer in the company of this particular group, but I think it goes further than that.
I think that this is such a personal thing. I hear friends who get frustrated being asked the question “so when will you have kids?” when they’ve barely finished walking down the proverbial aisle. How do people feel it’s their right to know? How do they know that the couple haven’t made the decision that having a child isn’t for them? Or even more awkward, they have been trying for years and been experiencing heartbreak for years.
A few years ago my friend went with her mum to an afternoon tea. She took along her young son who played quietly. One of the ladies, innocently I’m sure, told her how wonderfully behave her son was, then asked when she would be giving her mother another grandchild. My friend had a difficult pregnancy and didn’t have an easy time when her son was an infant. On top of this she has her own chronic health problems. Even if this wasn’t the case she was well within her rights to respond as she did. She told her mother’s friend (and everyone else in the room who’s ears likely pricked up at the question) that she in fact had been going through IVF, and until the week earlier had been pregnant. I was so proud of her putting up this response in the hope that maybe, just maybe these ladies might think twice before asking such intrusive questions to other women in the future.
This evenings question has made me think that maybe I need to come up with my own response to these questions. What’s a concise way of saying that I’m single and in my 30s? I have chronic health condition that seems to send men running. I don’t really get out much and when I do I don’t tend to meet many new people anyway (meeting new people is EXHAUSTING). Sure you don’t need a man to have kids these days, and it’s crossed my mind to go it alone. But I also don’t think I have the capacity to go it alone. I’m sure I could emotionally, but what about those days that I can’t move from the couch? I can ignore the dog crying at the door but I couldn’t do the same to a child. I know some amazing people who have similar medical conditions to me who do have loving partners and families, so I know it can be done and I’m absolutely not ruling out becoming a mother. But if I am to have children, first I need to find a man who loves me, and who I love. I don’t need a perfect man but I do need that man to be supportive, one who sees bringing up children as a joint role, not one left entirely to the mother (yes I have met men who still believe that it’s the mother’s job). I’m almost certain that if I have children I won’t be able to work so that man would also have to be prepared to live a single-income lifestyle, one where money and possessions aren’t everything. I need a man who can accept that sometimes I can’t always follow through and do the things I want, that sometimes I have to cancel plans at the last minute, that I can’t always be as spontaneous as I might like.
So when will I become a mum? I’ll become a mum when and if I’m ready. And if that window of time passes before I meet that man, or I meet that man and we decide not to, or can’t, have children, or I never meet that man, then maybe it wasn’t meant to be. I’ve been assured that my Goddaughter will be coming to live with me when she hits the rebellious stage so it looks like I will be lucky enough to have the experience of dealing with a difficult teenager (or preteen if she follows in the footsteps of her cousins) even if I skip the infant/toddler stage. In the meantime I’ll appreciate my quiet morning breakfasts spending hours reading the paper over coffee, I’ll appreciate being able to come home and reheat leftovers if I can’t be bothered cooking, or can’t find a vegetable in the house, I’ll appreciate watching what I want to watch because hopefully one day I won’t get to do it anymore.
May 5, 2013
An Update
I’ve been a little distracted these last few weeks by some issues at work. Not good, but if anything it’s made me realise that something is working. I say this as I’m sitting in my pyjamas at 4pm on a Sunday afternoon, with 4 weeks’ worth of clean washing piled up in my bedroom (I have been digging through it that pile for 3 weeks but it’s starting to look a little wrinkly), food spread from one end of the kitchen to the other (lucky it’s a small kitchen) and a pile of reading (lots of journal articles on IgG antibody reactions to food, and it’s links to leaky gut/IBS/ME-CFS).
If I ignore all of this and how it looks on the surface I have realised that for the last 2 weeks I have done all my own food preparation. I had planned to introduce this slowly after three months of doing virtually no food shopping/preparation etc but given my newly identified food intolerances I’ve thrown myself into shopping/cooking/washing up. I honestly don’t know how people with multiple food allergies do it. I am grateful that my reaction to the foods is mild and I’ve been told not to be concerned if I have trace amounts of the foods I react to, but I’m doing my best to avoid the trigger foods completely. It’s only temporary as the theory is that it can be treated (there’s an article on this in the journal pile). Anyway, I digress. Despite this sudden increase in activity I have not felt worse. Some of this improvement was starting before I made the dietary changes, I was starting to realise that as I was walking to my car after work I wasn’t focused on how many minutes it would be until I could lie down, and how much every inch of me ached. I was concerned that as I reintroduced shopping/cooking and washing up so suddenly I’d go backwards, but after a 2 week phase in period and a week of completely following the restrictions I haven’t crashed (touch wood).
My first step was to clean out my pantry and fridge. I put aside anything that was open but did not meet my new dietary needs and gave myself a week and a half to use it up. Anything that was still here the day the cleaner was expected would be binned. Anything not open has been put aside to donate. Everything else was put back in and a shopping list was written. So now everything in my pantry is safe for me to eat, except for a few staples that I’ve hidden up the back for guests (and the peanut butter which is Maisie’s)
I usually love eating out, but I was a bit worried about the first time I ate a meal out. I’m not one to make a fuss and usually I’m grateful I can have whatever I want. I figured eating out at breakfast would be a challenge. No wheat, No eggs. I was ready to just have a soy latte. But with some minor adjustments to the menu item I got this:
A vegie breakfast with mushrooms, tomato, hashbrown, spinach and avocado…minus the Turkish bread and hollandaise sauce, with a side of bacon. Yum!! It kept me full for hours too. With a soy latte of course.
I’ve also been doing my best to keep the food I cook at home interesting. Here are some of my creations:
On the left I have my oat and rye porridge with stewed apples, almonds and honey which was my breakfast yesterday morning. And on the right, field mushrooms from the local farmers market stuffed with rice, zucchini, capsicum, onion ad broccoli, topped with pine nuts and goat’s cheese.
So really I’ve only been following the dietary changes for a week. I’m not sure that’s long enough to make any conclusive judgements. Actually, I’m sure it’s not long enough. But I’m certainly not feeling any worse, and these changes aren’t going to be harmful. And I’m having fun experimenting in the kitchen as a bonus!
April 21, 2013
Back to the Doctor
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.
April 14, 2013
Where did the weekend go?
I’ve written half a dozen blog posts in my head this weekend but do you think I can remember any of it? To top it off I think my brain is mush and my house looks like it’s been ransacked. I was determined to have the house looking at least tidy by the time the weekend was over but there are still dirty dishes on the bench, you can’t see the top of the kitchen table and the doona that I took the cover off last weekend is still lying on the floor. The dog has stolen the good spot on the couch – in fact she’s walking circles at the moment rearranging herself. Okay, I know that she’s a small fluffy thing that I could move but she looks so cute (and by the good spot I mean I would lie down there amongst the cushions and quilt, and not write anything at all). I promise I’ll move her when I’m done.
As my brain is just mush I’m just going to see what comes out. Oh, I did do some fun stuff at the beginning of the weekend (I had a bonus weekend day on Friday). A friend invited me over with some other ladies for a “macaron masterclass”. It was so lovely to be able to learn something new and I enjoyed sitting around drinking coffee, eating good food and just generally chatting. I did try to make some myself when I got home (love my new stool – I sat down the whole time) and I think I can honestly say, without a doubt, they were a disaster. I accidentally added the sugar too early, and eventually too much sugar all together so that they were extremely sticky when they first came out of the oven, and then so so crunchy. Like a rock. I did want to try again but when I woke up this morning a faced the fact that I really didn’t have the capacity to do it. Then I spent four hours sitting on the couch. I did a lot of that this weekend.
I have a few blog posts mentally planned, some even started, but I require more brain capacity than I have right now so I think I’ll just give you some pictures of my macarons from our masterclass (not the disaster ones – they weren’t pretty) and attempt to do a better job of writing next week
. 
March 30, 2013
The Brain Game
One of my biggest concerns of late is the way my brain seems to be more discombobulated than usual. I’ve been feeling like I’m forgetting things, I feel like I’m disorganised, I have A LOT of trouble finding the right words. I know exactly what I’m saying and then it’s completely gone. I’m not game to greet people by name because I’m scared that when I say their name the wrong one will come out.
I feel incredibly lucky that I manage to work 4 days a week. One day I’d love to do some post graduate study but my biggest goal is to not have to reduce my current workload. I’m currently doing a short course for which I’ve already had an extension. I’ve never had to ask for an extension in my life before (that I can remember, but certainly not when studying). As it is, the work is due in about 10 days and I’m hoping I get there. But instead of focusing on studying my brain has decided it’s going on an organisation rampage. I have cleaned out my medicine cabinet, cleared off the papers that have been piling up on my kitchen table for the past 6 weeks, rearranged the things on windowsill above my kitchen sink, cleared off my coffee table of further papers, reorganised my bathroom cupboard and started writing a blog post. And gotten way off topic (something else my brain is doing more and more of).
Having to cut back my work is a huge fear. Without work I wouldn’t be able to pay my mortgage, I wouldn’t be able to afford some of the energy saving strategies (namely cleaner, lawn mowing man, home delivered healthy meal and groceries) not to mention some of the luxuries, the distraction from illness it provides me with and the fact it gets me out of the house. I spoke about this fear with a return to work officer at work and she suggested getting some cognitive tests done to see if there were any strategies that I could use to help me at work, and then discussed it with my psychologist who provided me with details of a neuropsychologist who she thought may be able to help me.
The Neuropsychologist was so lovely and helpful. She offered to meet with me, free of charge, to “have a chat” about my concerns and to see if there was something worth investigating. This “chat” ended up taking an hour of her time. She said that she’d like to do a range of tests as the problems I was having seemed to be broad, and as I was still able to work in a high functioning position she thought the changes were likely to be subtle and therefore difficult to find. We made plans to meet three more times. She asked if I’d mind if a final year student completed the first test. Working regularly with students myself I had no problem with this and told her it would be fine. She then told me she wouldn’t charge me for that appointment either (apparently the university paid her for that time so she didn’t want to charge me as well). I assured that that I didn’t mind paying, after all she’d still be working with the student on the analysis. She wanted to do a second lot of tests with me herself (the first time she was going to charge me) and then on the third occasion she was going to give me some feedback.
The first assessment went for two hours. It involved all sorts of tests, all starting fairly simple and gradually getting harder. It was really difficult to assess how I was doing as I expect that some of the tests were supposed to be too hard to complete. In one I was read a long list of word pairs. Some of the pairs seemed to go together, and others didn’t. Then I was given one word and had to say the word that matched. This was repeated using the same list of words several times and I actually found it fairly easy after the first round. Another that involved memorising patterns and positions on a grid was horrid. I am sure I didn’t get a thing right as I was completely guessing for the most part. My brain must have been working hard because the next morning getting out of bed was more of an ordeal than usual and I was extremely grateful that I didn’t have to go to work.
When I arrived at the second assessment the neuropsychologist told me she’d been doing some research into cognitive changes and ME/CFS and she was coming up with very little specific information. She was hoping that there would be some research that would help her guide her where to focus the tests. She’d gone through all of her references, done a literature search and had sent out an email request to all of her colleagues. She said that while it was clear that cognitive changes occur in ME/CFS, no one could tell her whether this was generalised “change” that varied from person to person, or if there were specific areas of the brain that appeared to be affected.
At the end of this second visit she told me that there were a few more things she’d really like to assess before she gave me my feedback, because once again things were not particularly clear and further information would be helpful. By this stage I had started to think that maybe it was all in my head and that there actually wasn’t anything wrong, that maybe I was just over reacting; that I really was just disorganised and not as smart as I thought. She kindly offered to come in on a Saturday and once again didn’t want to charge me for this extra appointment. In the end we combined this last assessment with my feedback session (so I felt better because I had paid for that).
One of the tests she did on the last Saturday involved me having to say out aloud words starting with a specific letter. This was done with three different letters. I had a minute to say them, and there were to be no proper nouns, no numbers and no repeated words, or words derived from the same word (eg. If I said bite, I couldn’t then say biting or bitten). For one of the letters I could only come up with 6 words, and in the last 30 seconds I couldn’t come up with any!! Surely not normal.
After finishing off the tests we went through some of the results that she’d already analysed. The results showed that I most definitely had a slowed processing in my brain. When she had tested my IQ (I didn’t even know she’d tested it) my knowledge was quite high, but my working memory and processing were really slow, quite below average. She said that what she believes is happening is that the brain fog really is slowing my brain down. The electrical impulses that occur when we think have slowed down and this actually explains a lot of my cognitive symptoms. It takes me longer than it should to come to the right answer, but the answers are definitely in there. What I see as “forgetting” is really me not allowing myself enough time to remember, as it takes longer than it used to. The word finding is difficult for the same reason. If I’m not planning what I’m saying ahead of time the words get lost. I am losing things because I’m either not giving myself the time to initially absorb where I’m putting things, or I’m not allowing myself time to remember where it is before getting flustered an confused. She asked me if I’d mind if she discussed my case with a group of her colleagues to see if they interpreted the results the same way (which I am more than happy for her to do) and has assured me if they come up with anything different or new she will let me know.
And what can I do with this new finding? Not much. Unfortunately processing is purely biological. All I can do is compensate (I interpret this as – allow more planning time) and, well, be less tired. And if I knew how to fix that one I wouldn’t be having the problem in the first place. But there is an element of relief that the information is actually in my brain, I’m not stupid and I’m not forgetting things I’ve learned of the years, and most importantly, it’s not all in my head (well, it is, but you know what I mean).
March 22, 2013
More Sleepless Nights
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.
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.
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.
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
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.
- 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.
- 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.
- 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!!
March 2, 2013
The Miracle Question
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?
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.
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.
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.
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.
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.
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.
And who knows, maybe I’ll awake to another miracle day.
February 22, 2013
From Then ‘Til Now
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.
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 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.
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).
Living in Dreamland 