ME Awareness Day – my semi-remission story

Those loyal few who actually read my blog will have noticed a yawning gap of ten months between this and my last blog post. For first-time readers who came here via Sally Burch’s May 12th Blog Bomb (apologies for lack of links in this post – I’m writing it on my phone as laptop is slower than…me on a bad day), here’s a quick re-cap…

At the end of 2013, I had a particularly bad relapse of ME. By January 2014, I was forced to stop working as a self-employed locum GP. An Occupational Health consultant advised me to ‘find a non-clinical job, which basically meant stop being a doctor who sees patients. There weren’t any suitable posts for me locally and the ones about which my senior colleague emailed me, trying to be helpful, were full-time and would have involved a long commute. This was around fifteen months ago when l was mostly housebound except for the five-minute walk l forced myself to do each day to make sure my muscles didn’t wither away. I had long naps each afternoon, got up to watch Pointless and eat dinner, watched a bit more telly then went back to bed. My waking hours were otherwise spent ‘trying to be a writer’ and I quickly discovered that becoming a successful writer probably takes as long as it had taken me to become a GP. Then I ran out of money.

Luckily, by the time the money ran out, my health was improving a little because I had done pretty much nothing for three months. I started to work a couple of mornings each week. At first, I would come home from work exhausted, my mum would make me eat some lunch then I would sleep for the rest of the day. On days I did not work, I stuck to my intensive resting regimen.

Since my return to work, I have gradually increased my hours. This was absolutely the only way I have been able to manage – I’m pretty sure that doing more work too quickly would have reversed the improvement in my health that was brought about by time, rest and patience.

In January 2015, I decided it was time to work for a whole day. I also decided that this whole day of work would be a locum GP shift in London. What a reckless move, right? But it was actually ok! I stayed awake and my brain and body worked all day, without the awful ME feeling of leaden head and limbs. As for PEM, yes, I had to have lots of rest when I got home as I was pretty wiped out but I escaped any full-on relapse. While in London, I even fitted in a real-life meet up for the first time with my long-distance friend, Pete, who took me to the British Museum and shared his artistic knowledge with me while I entertained/bored him (couldn’t quite tell. A year in one’s house can make one a little socially inept. One finds).

It hasn’t exactly been a picnic, though. One day, I overdid it by standing up for a long time cooking. Geez, so what? you may be thinking…but the next day I overslept until 3 in the afternoon and was late for work. Yes, imagine someone’s expression as you’re apologising for being late for an afternoon shift because you overslept.

However, overall there has been a great improvement in my health over the last year or so. l am now able to work – drum roll – three whole days per week! l don’t do a great deal else but I’m kind of used to the only very occasional social life now. It means I super-appreciate it when I do see my friends. In March, I saw my friend, Leila, for the first time in seventeen years, at her Hack Circus event, the first one I’d been to,having been too poorly to attend previous ones. So that was fantastic!

There being no treatment for ME (ok, there is CBT, which might help if you have also developed depression or anxiety, and GET, which in my opinion should only be done by physios who understand ME and with patients who are well enough to handle it, but I digress…) the best we can do at present is find our own way through it, figuring out what helps and what doesn’t. This is not ideal. I know that what works for me won’t necessarily help others with ME. I know I’m lucky to be relatively well at present when there are others with ME who are not well enough to work or even to make it out of their bedrooms. But I do hope that my improvement, from being housebound and spending over half the day sleeping, to working three days a week in the job I was advised to quit, will give hope to those of you who are really poorly and struggling at the moment, a real hope that you can get better – maybe not make a full recovery (may the day come when that’s possible) but at least get sufficiently well to live a nice enough life. After all, I don’t think that’s too much to hope for.

Wax on, wax off

I do appreciate a money-saving tip, especially when finances are very tight, so I was possibly a little too excited to discover that it is possible to make sugaring paste for hair removal at home. You may already be familiar with this method, which is referenced in the Lebanese film, Caramel. It’s a rather pleasant film to while away some time and there isn’t actually much footage of depilation involved, which is all for the better.

I’m not a fan of the razor (leaves large, chicken-skin pores and my hair grows so fast that I get five o’clock shadow on my ankles) or of creams (they stink and I don’t like to put stuff that melts hair on to my skin, thanks very much). I invested in an epilator, thinking that I would never need to buy any more hair removal products again, but developed an unfortunate ingrowing hair problem. As for beauty salon treatments, I simply cannot justify paying for these.

So I found a fairly reliable Youtube video of a very cheerful Arabic teacher who had been persuaded by her students to do a sugar paste recipe tutorial. She made it look quite straightforward, apart from the bit where she exclaimed, “Ow, hot, it burns your hands a bit!” and laughed nervously. I got my sugar, lemon juice, water and pan and bubbled up something that looked like the stuff on the video. When I got to the pulling and stretching bit, feeling very pleased with myself that all was going according to plan, the caramel blob suddenly went really soft and sticky and moulded itself into a runny mess covering both my hands like a pair of candy gloves. I scraped as much of it as I could salvage back into the pan, chucked in another cup of sugar, boiled it all up again and tried one more time. Success.

Now for the bottom line (actually, I only did my legs. I wasn’t going to go anywhere more delicate on the first attempt) – does this stuff work? Being Little Miss Google, I searched for instructions and got on with it. The wrist flick to pull the thick sugar paste off the skin took a bit of practice but the hair was coming away with hardly any pain. Then things must have got too warm because the paste started to get a bit too gloopy again. I hastily Googled “what to do if sugaring paste won’t come off my leg” and discovered that you can add a tiny bit of fresh paste to the blob you’re already using, spread it over the top of the offending sticky patch, flick it off and all should come away. Hooray, it did! But then, as I was dealing with a bigger blob of sugar paste, pieces started to fly across the room with each flick of my wrist. What had detached itself so easily from my leg was now stuck fast to the bottom of the cupboard. I chiselled it off with a knife. Another flying piece of caramel splatted and immobilised itself on the floor tiles.

The whole process of removing hair, removing bits of hairy toffee from the furniture and panic-Googling in between took about an hour. The result – smooth legs covered in a rash of purple bruises, a sticky residue on everything I had touched and some things I hadn’t touched, and a general feeling of tiredness. I was left wondering if I could have achieved similar results by applying a Highland Toffee to my legs. If you’re over thirty, you’ll probably remember these. If you have no idea what I’m talking about, imagine a flat, soft toffee bar about the size of a wax strip.

The good news is, my leg bruises have faded and I did manage to get rid of quite a lot of hair. However, given the time, hassle and energy involved, I’m not sure that it was worth it. It’s made me think twice about embarking on another potential money-saving scheme I’d been pondering – the compost water-heater. I had the idea for this while sitting on the toilet (where I do a lot of my thinking) then, thanks to yet another internet search, I discovered that someone else had already come up with this idea many years ago. If you think that you’ve come up with something amazingly unique, you probably haven’t. Anyway, the plan is that water piping is run, in coils to maximise the surface area, through a compost heap or bin, and the heat generated by the decomposing organic matter will heat cold water as it passes through the piping. There are people who have used this technique to successfully heat water for outdoor showers. Hooray for them. Unless I can get someone fit and strong to install the system for free, I don’t think I’ll bother.

For those of you who can’t be bothered with permaculture but who just want to mock my terrible diagram, here you are:

Hard day? Then why not relax in a lukewarm bath in the shed?

Hard day? Then why not relax in a lukewarm bath in the shed?

 

 

 

 

 

 

 

Moving on to recent occurrences that have filled me with simple joy, last week while I was doing a GP surgery, one patient told me as she entered my consulting room that a real, live mole was running around in reception. It had appeared just as an educational animation about suspicious moles, as in the skin lesions, was playing on the screen in the waiting room. I didn’t get to see the mole of the furry variety, but it was enough to hear about this very funny incident.

Suspicious mole?

Suspicious mole?

 

 

 

 

 

 

As if one animal-related pun happening in real life wasn’t enough, later that week as I was out on a home visit in a local housing estate, I witnessed a chicken crossing the road. Now that is entertainment.

Coming next: Am I ever going to get this podcast off the ground? And is it time to start having a social life?

 

 

 

Give Yourself A Pat On The Back

After the week before last’s withdrawal-addled rant, I feel I should offer you some positivity. It’s not coming straight away but hang on in there…

Last weekend, my mother took a rare and well-earned break to visit her friends in Sweden for a Midsummer get-together. Midsummer is a big deal in Sweden. People go to their lakeside summerhouses and spend a weekend eating gravadlax, drinking schnapps and singing jolly songs. At least, that’s what I understand.

So I was in charge of running my own home for once, something I am woefully unused to but actually fairly capable of doing when I have the physical energy. I was also in sole charge of my daughter, which was absolutely lovely as we don’t actually spend much time alone together. It so happened that last weekend was my daughter’s Beaver Camp (you know, as in the Scouts’ Association. They didn’t have to catch fish and build a dam). Having been issued with an extensive list of necessary equipment for camp, I spent Friday night and Saturday morning assembling all the gear and packing it into my big rucksack and my daughter’s little rucksack as an overflow until it looked as though our whole family was off to a festival for three days.

Off we go to the Bear Grylls Junior Academy...

Off we go to the Bear Grylls Junior Academy…

Camp day was a bright, scorching day and, I decided, the perfect opportunity for my father and I to take as much of the garden rubbish (and it’s a very big garden) as possible to the dump. At least I retained enough common sense not to lift anything (thanks, Dad) but it was still quite tiring. Then it was time to go to camp – the journey there a hot, sticky drive throughout which my daughter insisted on wearing her fleece-lined regulation sweatshirt: “We have to arrive in FULL UNIFORM,” she announced, her face the colour of a tomato, as I tried to reassure her that she wouldn’t get into trouble for not getting heatstroke.

Finding camp was a little tricky owing to some confusing directions and instructions telling parents to drop their child at the end of a lane where they would be met by camp supervisors. No one was there.

“I’m not just leaving you here!” I said to my daughter, aghast at the thought of abandoning her at the side of the road with luggage as tall as her. “Neither are we just standing here like lemons. Come on!”

I strapped the giant rucksack to my back, gave her the little one and we set off down what I guessed to be the correct lane. It wasn’t. Luckily, a helpful man pointed us in the right direction and I saw my daughter safely to her tent.

Now, the dump run and rucksack lugging turned out to be a bit too much, physically, for me. I spent the next few days lying down as much as possible and was forced to cancel a morning’s work midweek due to my usual ME crash alarms going off (word-finding difficulties, clumsiness, useless heavy legs). And I started to do my usual routine of berating myself for overdoing it.

Then I stopped being angry with myself. Let’s just take a look at all the good bits. I spent some lovely time with my daughter and did some proper mum stuff to boot. My goodness, I even cooked a meal. And the weather was fabulous, we had a drive into some of Britain’s most beautiful countryside (even if I am biased) and didn’t it feel good to be outside? Even though I’m not at all sporty, I love being outdoors and walking. No, walking up an incline with a heavy rucksack on your back is not a good idea when you are recovering from an ME relapse (of course, in the midst of a relapse, you wouldn’t have the strength to do this). But the very fact that I could manage this is a sign of how much I’ve improved over the last six months.

That’s not to say I haven’t been outside for six months. As soon as I started to feel a bit better a few months ago, I made sure that every day, I took a gentle walk to the local shop and back, which takes all of five minutes. But when you have been mostly housebound for a long time, you really do miss having the freedom to go places, to walk and explore. A great deal of rest, tiny bits of regular walking and daily mindfulness have contributed towards my slow improvement. So rather than get cross with myself, I decided to congratulate myself on taking steps to manage life with this illness and succeeding.

This sentiment leads me to steer you towards this uplifting article by Colette Bernhardt, whom I met via my friend Pete. We share the unfortunate connection of chronic illness but the fortunate connection of enjoying creating and writing, which is a lot nicer.

Colette describes how careful, supervised pacing has helped her towards recovery and how it has allowed her to return to enjoying walks in the countryside. As I’ve said before, it’s different strokes for different folks when it comes to getting through ME. However, it is my belief that pacing is key. If you haven’t already seen Colette’s piece on the HuffPost blog, do read it.

Coming up on Spooncast, a guest post from Pete and some of my crazy money-saving ideas.  

I Lost My Shit And I Don’t Want It Back

Until the above has become a hit country music song, I’m keeping it for the title of this blog post. Today has been challenging so far and I’m sitting down to write in the hope that being in a foul mood will enhance the creative process. I await your feedback.

On the whole, things here have been continuing to improve and I have been feeling positive. Last week, I did a half-day of work every day – the first time that I have worked every day from Monday to Friday that I can remember. I’m being sure to rest when I get home and to go to bed early, even if the balmy weather and my overactive mind prevent me from going to sleep straight away.

Although I still find work very tiring, I don’t seem to be getting any horrendous post-exertional crashes. Which is nice. I even managed to have a couple of sips of wine with dinner the other night, then realising that I don’t really miss drinking wine all that much anyway.

The big achievement this week has been the completion of the weaning-off process of my antidepressant. I’ve been taking a medication that is particularly difficult to discontinue owing to the very unpleasant withdrawal effects (my favourite quote from a mental health forum I happened upon: “worse than coming off crack”. I wouldn’t know). My GP, when I asked him what he thought about me taking a low dose of a sedative medication to help with insomnia while weaning off my regular medication, advised me to stop my regular medication straight away and “let it wash out of your system” before starting to take the other one. Luckily, I already knew that this was terrible advice* but my heart goes out to patients who take this misinformation on trust and proceed to feel hellish when they stop their antidepressants suddenly.

Because I’ve got some experience of working in psychiatry, I knew that it would take months for me to slowly reduce my dosage every few weeks until I could stop altogether, a laborious process which involves opening up the capsules and halving then quartering the contents. For the last four days, I haven’t taken any antidepressant medication at all. I do feel more awake during the day, although because both weaning off the medication and recovering from the latest relapse of ME have been a slow parallel process, I’m not quite sure which is responsible for this improvement.

Going from the tiniest dose of medication to none seems to have been the hardest step down. Perhaps this is partly psychosomatic, perhaps it’s because the brain has to adjust to having no synthetic neuronal blockers at all milling about. Whatever the reason, over the last couple of days I’ve been experiencing the most notorious discontinuation symptom, the “brain zaps”. These are described by some as electric shock sensations inside the head. I would describe the feeling more as though my head were a maraca and my brain a loose collection of the fine beads inside, being shaken around without my head actually having to move. If you can possibly imagine that. I may need to work on the analogy. Actually, if you’re old enough to remember, think of shaking an Etch-A-Sketch to erase the markings. Yes, the brains feel like the stuff inside an Etch-A-Sketch being shaken around. You’re looking at the new Poet Laureate.

The good news is, these withdrawal effects are temporary, even if they are unpleasant, and should subside after a few weeks. What has bothered me much more is something that I mentioned a few weeks back when I was describing a return of a more emotional response to everyday situations. This started as a bit of welling up at something on the telly. This morning, however, I didn’t just get a bit teary. I got full-on furious.

Those of you readers who have been kindly following this blog for a while may remember that I share my home with my mother, who has been doing a sterling job of looking after me and my daughter when I’ve been really sick. The thing is, thankful as I am that I have this support on hand, I hope that I’m not always going to need it and furthermore, I don’t like needing it. I get very frustrated that I’ve needed to rely on someone else. The drawback of having your parent as your carer when you are an adult is firstly, that you can feel as though you’re a child again and secondly, that your parent treats you as though you’re a child again. As far as I’m concerned, this is not a recipe for a harmonious relationship. Add in the extra dimension of being a parent yourself and having to surrender your parenting to someone whose own ideas of parenting you don’t wholly agree with, and the dynamic becomes rather complicated.

This morning, the accumulation of a thousand pinpricks of criticism and interference from my mother came to a head when I was admonished for waking up my (already awake) daughter at eight-thirty as I walked past her bedroom to the toilet. Because my mum felt that she needed a lie-in. The passive-aggressive “Who was it who woke her up when she needed to sleep?” as my daughter yawned at the breakfast table was enough to get my hackles up. I set off on a futile course of trying to explain that I hadn’t done anything wrong and I refused to be told off for walking around at a perfectly reasonable hour in my own home.

“Shut up!” said my daughter, rebuking me for talking back to her nana.

“Don’t you dare tell me to shut up!” I replied. My mother continued to talk at me. I had stopped listening and it was just an annoying voice going on and on. I silently finished my breakfast and cleared the cereals from the table before retreating to my room to get dressed. My daughter scuttled in while I was naked and proceeded to try to kick me up the backside, something she knows I find hugely irritating. Children seem to have a special talent for identifying your triggers and exploiting them when you are especially harassed to produce maximum annoyance. Except me, of course. I never did this…

“I’m getting dressed, ” I said, tersely. “You need to go and get dressed too. Go on, go to your room and get dressed. Or we’ll be late meeting Grandad.” This was greeted with the “annoying grin” she has learned from her cousin, accompanied by a monotonous snigger.

“I would like some privacy please,” I said in my sternest mum-voice. “Now go and get dressed yourself.” Ignored. Perhaps being naked took the edge off my authority. She scooted round the back of me, lifting her leg as though to boot my backside.

“Right, GET OUT!” I yelled. My mother came in, fussing over my daughter.

“Ahh, why don’t you just give her a cuddle?” she cooed.

“A CUDDLE? I DON’T WANT TO GIVE HER A CUDDLE. SHE’S BEING REALLY NAUGHTY. IT’S NOT ON!”

“Shut up!” My daughter took the towel and the clothes from the end of my bed and threw them at my face. That was it.

“GET OUT! GET OUT, BOTH OF YOU! I’VE HAD ENOUGH!” I had had enough. I was so angry that I could have gone and smashed all the plates. But I didn’t because I do have some self-restraint. My mother retreated from my meanness. My daughter crawled under my bed and repeatedly told me to get out of my room. I finished getting dressed and went downstairs to try to explain to my mother why I feel so angry and frustrated. Does she think I want to be ill? Does she think I want her doing things for me that a normal adult would do for themselves? Does she think that because she’s been looking after me, this gives her the right to tell me how to do everything, to pass comment and criticism on the tiniest thing that I do? Does she understand that I feel trapped and I don’t want this to be the rest of my life?

“I’m sorry. I won’t say anything at all then.” No, I don’t want you to be mute. I just want you to understand where I’m coming from.

And there’s the rub. We can’t “make” other people understand our point of view, our feelings. We can’t “make” other people act a certain way. What we can do is gain familiarity and control of our own reactions to other people, by learning what our triggers are and by recognising how we respond to these triggers. I practised today’s mindfulness meditation session still feeling furious, with tears streaming down my cheeks and a turbulent feeling in my chest. But the thing about allowing these feelings and just letting them roll was that it was very easy to “notice the resistance”, as Andy from Headspace says.  And once I noticed the resistance and the pain that it brought about, I realised that it was the resistance to my anger that was causing the anguish, not the anger itself.

Now I’m off the antidepressants, getting used to my brave new, unmedicated mind is going to be a voyage of discovery. It’s started off a little choppy but I’m sure the waves will settle. I hope so, anyway, because getting angry and upset is exhausting for someone with ME. Or maybe it’s the resistance that’s exhausting.

*Please note that the recommendations for stopping an antidepressant or switching to another vary depending on which antidepressant you are taking and which you are switching to. If your GP’s advice isn’t clear or if the switching regimen is complicated, ask them to write it down for you. There are tables for stopping/switching antidepressants on the NHS website. Please do not stop taking antidepressants without consulting your doctor.

Getting Things Done

Sequel to the less successful Putting Things Off

Sequel to the less successful Putting Things Off

See this book? The one which is acting as the filling in the eye textbook sandwich? I bought it a few years ago with the intention of reading it and so becoming an Organised Person. I still haven’t read it. I rediscovered it the other day while cleaning out the back room which has been supposed to be my office for the last two years. Somehow, this room has instead become a repository for the by-products of ongoing DIY projects and also houses a huge batch of my mum’s homemade jam.

However, I have finally, without reading the book, Got Something Done by clearing a space for myself where I can “go to work” on the days when I’m not…going to work. If you see what I mean. I spent a long time feeling terrible so that the only thing I could do was rest. Now I’m getting better, I seem to spend a lot of time wondering what I should be doing and meandering through the day with a vague, uneasy sense that there are important things I’ve forgotten to do. There is a simple reason behind this – I have no routine.

The upside of being at work is that the day is structured so that while you are at work, you know what you need to do before you can go home. When you do go home, you know that you have done your job, you’re going to get paid for it and now you’re off to have a break.

As someone who has never before worked from home but who wants to be a writer, I am starting to see that having a routine is the key to Getting Things Done. I’m not naturally blessed with a talent for being organised. Combine that with having an illness which, when it rears its head, scuppers any hint of a routine that I do have, and life can get a bit chaotic. The trouble is, a disorganised life is tiring and stressful – just what you don’t need when you are unwell and lacking in energy. Does anyone else see a vicious cycle emerging?

I’m feeling very positive about my new office because it’s the first step I’ve taken towards an organised home-working life. Now I have a space I can get up and go to, on the days when I’m not doctoring, and I can tell my family that I’m going to work to do my other job. It beats sitting on my bed typing away until my buttocks go numb and asking my mum to stop shouting, “Are you going to stay in your bedroom ALL AFTERNOON?” at me. Hiding in bedroom trying to Get Things Done = regression to teenage self (“Mum, I’m BUSY. God, I’m thirty-three years old. Other adults don’t have to put up with this. Pfft, SO UNFAIR.”) Going to work in my home office = professional freelance writer (“I am going to work, Mother. I shall be DND until 4pm. The jam is now on the shelf in the hall.”) Right? Yeah, let’s Get This Done!

Work from home? What challenges have you faced? Does it work for you? Get in touch with Spooncast and let me know!

 

Today is ME Awareness Day

My blog posts are usually aimed at people who already know about what it’s like to have a chronic, energy-limiting condition such as ME. However, today, May 12th, is ME Awareness Day and the whole point of that is to tell people who don’t know about ME what it’s like.

I can only write from my own experience. Each person with ME has their own individual experience of the condition. That’s why Sally Burch’s idea for #May12BlogBomb is such a good one – people with ME publishing posts on May 12th about how the condition has affected their lives and linking to that hashtag. Hopefully, these posts will reach people who don’t know much about ME and help them to understand that the condition can affect anyone.

If you don’t know what having ME feels like, I’ll try to explain. Imagine you have the flu. Proper flu. It’s really not pleasant, is it? But then you’d expect to get back to normal after a couple of weeks. With ME, you feel fluey for several weeks, maybe months. You start to wonder what’s wrong with you. There may be times when you start to feel a bit better so you think you can return to normal activity, only to be floored again a few days later. Your muscles feel weak, you break out in cold sweats without warning, your head thumps and you struggle to think clearly. You might feel like sleeping all the time but you might not be able to get to sleep. You might end up taking prolonged sick leave from work, or having to quit your job. Your friends wonder why you don’t come out any more, or why you’re too exhausted to talk to them for long. People ask you if you’re depressed and suggest you get out and do something to make yourself feel better. You know you’re not depressed because you want to do lots of things, only you just feel too awful. You might go to see your doctor and have some tests, which probably come back normal. That’s a relief, but you still feel really ill and you’re being told there’s nothing wrong with you. Meanwhile, it feels as though your life is on hold as you give up the things you enjoy doing. Frustrating, huh?

I could go on, but I won’t. That’s just a condensed version of my experience over the years. For those of you who don’t know, I’m Sophie, I’m thirty-three and I’m a now very part-time GP. I live with my daughter and my mum. I’ve had fluctuating symptoms of ME since the age of seventeen. There have been times when I’ve barely been able to get out of bed, times when I’ve been almost fine and, mostly, times when I’ve struggled on despite feeling rubbish.

The effect that ME has on my life at present is as follows:

I work as a GP two mornings per week, having not worked at all (without pay because I am a self-employed locum) for three months after a bad relapse. This is all I can manage at the moment.

Despite people’s perception of GPs as, well, rolling in it, I can’t afford to buy a copy of a magazine to read an article I contributed to. I can’t afford to take my daughter on holiday. I can’t afford the petrol or rail fare or indeed the energy to travel to see my friends.

I rely on my mum to keep my household running. She does the cooking and laundry and looks after my daughter when I am at work or resting to recover from working.

Despite being single for almost four years, I haven’t been on a date for six months. I had to tell my last date about my relapse in January and since then, the only people I’ve been out for a coffee with are my parents. My dad pays.

It’s not all bad. Thanks to having a lot of rest over the last few months, which I wouldn’t have been able to do without family support, I’m much, much better than I was. And I don’t want this post to turn into a moan-fest. I just want to finish with some key messages for readers, and here they are:

ME is not depression.

Just because the cause isn’t known, that doesn’t mean it’s not a “real illness”.

Symptoms can fluctuate, so if your friend or relative with ME seems ok one day, they might be really unwell the next.

People with ME are not antisocial, lazy or boring. They just know that they have to limit what they do in order to keep going.

This isn’t a competition to see who is the sickest. What you need when you’re chronically ill and feeling isolated is support and understanding. Let’s be kind to each other and not get bogged down in the terminology of the illness, or expect that what did or didn’t help us should or shouldn’t help another sufferer. We all need to find what works for us when it comes to coping with this illness.

There is hope. Do not despair. People can get better…eventually. Research is being done. There are some medical professionals who understand.

To non-sufferers, a final word – all you have to do to understand ME better is listen to those who have it. Don’t judge them. Anyone can get it. I hope it’s never you but if it is, aside from recovery, understanding is the thing you’ll want the most.

#May12BlogBomb – thanks to Sally Burch for the great idea and her work in compiling all the links:

http://sallyjustme.blogspot.com/2014/05/May12BlogBombLinks.html

Back To Work

When I say back to work, I’ve only been doing two mornings per week for the last three weeks. This may not sound like much but seeing as I couldn’t even get through a morning surgery three months ago, I’m very pleased that I’m managing to do this now. I was a little apprehensive about going back as the memory of dragging myself into work, feeling awful and demoralised by the knowledge that I wasn’t able to do my best hadn’t quite faded. However, it’s a relief to know that I have recovered enough from this relapse to do a little bit of work and earn some money. It also makes a change from staying at home all the time.

When recovering from an ME relapse, it’s important to continue to pace, as I’ve discussed in previous posts. It’s also important to test yourself to see if your limits have changed. This means taking some risks, including the risk of post-exertional malaise. Anyone who has experienced this understandably wants to avoid it. It’s easy for the fear of an exacerbation of symptoms to deter us from doing things. Of course, if you already know that a certain activity tends to make you feel worse, don’t do it. However, it can be immensely satisfying to attempt something you enjoy that you haven’t felt well enough to do for a long while, and feel ok, or at least not too bad afterwards. The mistake is to increase activity too quickly; this will inevitably lead to a setback and increase the likelihood of avoidant behaviour in future.

It’s hard to achieve this balance between pacing and taking risks, as I’ve discovered. Since returning to work, I’ve veered towards my old autopilot mode of ignoring warning symptoms and failing to monitor my activity carefully. I realised yesterday that I hadn’t been keeping an eye on my heart rate. When I finally got around to checking it because I was feeling a bit strange, it was racing away again – a reminder to take frequent rests and lie down from time to time. Boring but necessary.

Two mornings per week doesn’t provide enough income to cover all costs. My mother frequently reminds me of this fact. The trouble is, it’s all that I can do at present. After my last “morning” at work, which actually finished at 3pm, I went to bed and slept for three hours. I felt so tired, I was having trouble forming sentences. So I’ve informed mum that we’ll have to manage on the breadline for a while longer.

My thriftiness drive steered me towards Pinterest, the social media site for people who like looking at lots of photos of pretty things and thinking, “Ooooh, I could make that!” Pinterest was new to me. I felt as though I’d fallen down a craftsy rabbit hole and might spend hours trapped there. I was inspired to make my daughter a slightly bigger T-shirt out of three T-shirts which she has outgrown. I’m not an accomplished seamstress but it looks ok. Don’t be fooled though, successful upcycling is not as easy as Pinterest might suggest. Just head on over to Sonja Foust’s brilliant Pintester blog – an essential for anyone duped into believing that making stuff is a doddle. If you can cope with failure, though, it is fun.

That’s it for today. I have things to do, in between not doing things. Just a reminder that May 12th is ME Awareness Day. More about this next time. In the meantime, you can find out more here and Thunderclap it here if you so wish.

 

 

 

 

 

 

 

 

Comfortably Numb?

Just when I was settling into a grimly satisfying but joyless routine of water-chugging, pulse monitoring and elastic sock wearing, last week went a bit wonky.

I fell out with my closest male friend. I’ll spare everyone the details as recounting the sorry tale would risk turning into a Vicky Pollard-esque monologue. Suffice to say, a situation arose which left me feeling hurt and angry, so that I lashed out and made things even worse. We are currently not on speaking terms.

The day after the argument, I felt generally worse in myself again. Some of the symptoms I recognised as normal for me when I get upset – shivering and an dodgy stomach seem to be par for the course when I’m feeling emotional. However, the heart rate also went a bit crazy; I felt really weak and breathless on standing and when I checked my pulse, it was 150. The last few mornings, I’ve woken early, drenched in sweat. I’ve slept for a couple of hours each afternoon, which I haven’t needed to do for weeks.

Only time will tell whether or not my friend and I will sort things out. One thing is for sure, emotional stress definitely has an effect on ME symptoms. In fact, it can have an effect on the body even if you are well.

Living with ME can be very isolating and this is something I hate. Yet, in a way, existing in your little bubble of chronic illness can protect you from having to deal with some of the emotional strains of what is, for most people, everyday life. When you have to be extra-careful with your health, it’s tempting to try to avoid any upset, but this can mean failing to deal with things that need to be confronted. We all have to be able to deal with arguments, disagreements and fallings-out. It’s part of having healthy relationships at home, at work and in our social lives.

I don’t have any concrete answers for how to deal with emotional stress. All I know is that we can at least learn from our experiences. I’m learning that there is a balance to be struck between facing up to emotionally charged situations and knowing when to step back from them. Call it emotional pacing.

Reflecting on this situation has made me realise – it’s better to feel something than nothing. After consulting with my doctor earlier this year, I decided to come off the antidepressant I’ve been taking for the last couple of years. Thankfully, I haven’t been depressed for a long time. The medication definitely helped. But it was doing nothing to help with my chronic back pain or fatigue symptoms and I wondered if I would actually now feel better, from the ME perspective, without it.

On gradually reducing the dose, I’ve noticed an increased emotional response which may just be a return of my normal emotional responses. I first noticed this when I started to well up at the series finale of “Call The Midwife”. This is a little embarrassing but not, I suspect, particularly abnormal. Let me assure you that being depressed and being upset are not the same thing. Many people actually like having a good cry. My best friend memorably said, “There’s nothing I enjoy more than sitting down with a DVD and box of tissues.” She was referring to the classic tearjerker “Beaches”, although the more grubby-minded of us took her comment the wrong way.

When I was depressed, however, I cried at everything. Not in a cathartic way, but in a black, morbid way. I read metaphors for death into Iggle Piggle’s saying goodnight on “In The Night Garden”, his little boat floating bleakly away across the Styx. I now find this thought utterly ridiculous but at the time I saw this grim inevitability in everything.

So this is now my rule for “How much emotion is too much?” Crying at “Call The Midwife”? Normal. Crying at CBeebies? Call the doctor.

 

Going Potty

It is less than two weeks before I return to work. Just in time, it seems, I have made a discovery which may or may not be related to having ME. I often feel more foggy-headed after standing up, or if I’ve been standing a long time. When I was a medical student with hopes of becoming a surgeon, I used to embarrassingly black out in the operating theatre having stood in the same position for ages holding the laparoscopy camera or a retractor.

Recently, I have been checking my pulse at intervals, in an attempt to identify the activities which push me beyond my anaerobic threshold limit, which for me is 111 beats per minute. My pulse is fine (usually 70-80) when I’m sitting or lying but shoots up to 110-120 when I stand up. If you haven’t heard of the anaerobic threshold or of pacing by monitoring heart rate, please do read this from Bruce Campbell’s excellent website.

I haven’t been to see my doctor about this yet but I’m pretty sure I have a condition called POTS, which stands for postural orthostatic tachycardia syndrome. This basically means that there is an abnormal increase in heart rate when you stand up. Some readers may already be familiar with this condition as it can co-exist with ME, autoimmune conditions such as lupus and various other conditions.

For further information about the symptoms, diagnosis and treatment of POTS, take a look at this from the health site Patient.co.uk.

As a doctor, I was aware of POTS and of the main symptoms. However, I hadn’t realised that neck and shoulder pain, bowel symptoms and general fatigue could also be related. I’m now wondering if POTS and ME are part of the same condition or if they share a common cause. One thing is clear, having POTS and ME makes pacing all the more of a challenge - if just standing up pushes the heart rate above the anaerobic threshold then it is easy to get stuck in a continuous cycle of post-exertional malaise.

Before readers start to think that having POTS dooms sufferers to a lifetime of lying down, there are things you can do to manage the condition. Firstly, I’d advise anyone who thinks they have it to see their GP (yes, I am going to see mine). Feeling lightheaded on standing and having a fast heart rate can be down to other causes too, so it’s important to get the right diagnosis.

If it is POTS, though, my main self-management tip would be drink water – have a large glass before getting out of bed, before standing up and walking about and along with a tea or coffee as these make you pee out more water. You need the water to increase your circulating blood volume. Aim to consume 2 to 3 litres per day. I’ve noticed a slight reduction in my standing pulse since I’ve been doing this and my head feels clearer. (Again, best to consult your own doctor if you have other medical conditions as drinking too much water can be bad for some people).  

Another thing that might help is wearing support stockings. Now, as a woman in her thirties, I can fully appreciate that these are not fashionable or sexy. Nevertheless, I dug out my pair of anti-thrombosis surgical stockings I was given in hospital when I had my daughter by caesarean section. I’ve been putting them on every morning and again, I think they are making a difference. My feet used to go a horrid purple colour on standing or sitting but the stockings help to pump the blood back up the legs. (More disclaimers! Your GP can prescribe compression hosiery. If you have narrowed arteries in your lower limbs, tight stockings may not be suitable, so check with your doctor).

My final piece of advice for today is to eat regular, small meals instead of big, heavy meals. Lots of blood flows to the gut after a big, heavy meal, especially with lots of carbohydrate. That means less blood flow elsewhere in the body.

For more advice on managing POTS, check out the POTS UK website.

I’m in the process of trying to come up with creative ways of dealing with POTS at work. I may have to give up standing to greet and say goodbye to patients. I’m also wondering if I can examine patients while sitting down. The main change is going to have to be curbing my habit of forgetting to drink during a surgery.

Have you been diagnosed with POTS? What are your tips for dealing with the symptoms?

A Quick Tip

This is aimed at those people with ME/CFS coming out of a relapse and starting to little bits of physical activity. I just cleaned out the pets’ hutches. I find it quite strenuous and was feeling achey and hot by the time I’d finished. The old heart rate was hovering around the 100 mark so I knew I’d done enough.

Next step: lie down with two pillows under legs to raise feet above heart level. Take in a deep breath to the count of one or two, feeling the diaphragm move downwards but no movement of the ribs (this is abdominal breathing). Exhale slowly for as long as you can. I work up to a count of 24. It slows my pulse down and relaxes me. Then I just rest, lying down, for about half an hour. Give it a try. I’m hoping it will help reduce post-exertional malaise. Will keep you posted.

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