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.
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.
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).
February 2, 2013
Fighting the Sleepless Nights
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.
December 31, 2012
New Year, New Challenges
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.
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
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”).
December 6, 2012
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.
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?
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 16, 2012
What’s in a name?
There are a lot of people campaigning to stop using the term Chronic Fatigue Syndrome (CFS) or ME/CFS and start using Myalgic Encephalomyelitis (ME). I haven’t ever been one to worry about it. If I used ME I figure I’d have to explain it. And how do you say “myalgic encephalomyelitis” when you struggle with basic word finding. Nope, people have heard of Chronic Fatigue Syndrome, and are less likely to ask questions. Besides, the complexities of ME sound BAD and I don’t want people to feel sorry for me.
I understood why people wanted to change the terms. Chronic Fatigue Syndrome suggests there is one symptom. It simplifies the condition. I’ve probably been lucky not to have been around people who thought of CFS as a real condition, who didn’t write it off as “yuppie flu” or any other of the deprecating terms.
Recently though I’ve started to question my apathy. Recently it was brought to my attention that my “fatigue” was affecting the people I work with. Recently I’ve been holding my head in my hands which is causing some colleagues to be reluctant to ask for my help.
Initially I was mortified. I’m not one to hide my ME/CFS – I think that it would take more energy that I don’t have, to do that. I do however try to remain professional at work, carry out my duties and do my fair share without complaining about whatever symptoms I might be experiencing on a particular day. I’m not saying I’m always successful, but to think I had failed to the point it had to be brought to my attention was embarrassing.
Once I got over my initial humiliation and made a conscious effort to hide my symptoms I started thinking that maybe using 
different terminology might have helped me out in this situation. Maybe had I not been so indifferent about the terminology and taken the time to say I have “myalgic encephalomyelitis” instead of “chronic fatigue syndrome” and explained the complexity of the symptoms, the resting my head in my hands might have been seen as the dizziness/low blood pressure/shaking that it was rather than “just fatigue”. It’s made me wonder how many of the people who are supportive of my condition actually don’t have as good an understanding of it as I perceive, how do I explain it, and do I need to?
Living in Dreamland 