Learning to Live Again

 

Since my fling with optic neuritis, a lot in my life has changed. I’ve lost a lot, and its been pretty tough trying to accept the things that I can no longer do. With this loss comes depression, and between this and my physical decline it becomes near on impossible to find the joy in life.

Once you have time to adjust to the life you now have, it is surprising what sort of things come into your life to take the place of your previous interests. These are by no means a replacement for your old passions, but they are seedlings that just may grow into the next thing that keeps you going in your darkest hour.

When I lost the ability to dance, I was devastated. My whole life centred around setting myself free in that studio. Every good day, every bad. No matter the weather I was there, ready to put my all into every step. It was the only physical activity I enjoyed, and a never thought I would find a replacement. However, after a rough couple of years, something that feels absolutely amazing has crossed my path again – and that something is horse riding. Yes – horse riding!

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Claymore

 

I would never have thought about this sort of activity if it wasn’t for a neighbour of mine. She has hyper-mobility, and maintains its the thing that keeps her well. So, after months of her casually mentioning it (and me brushing it off), she finally dragged me along a month ago and persuaded me to book a lesson. I had my reservations, and was worried I wouldn’t even manage to get on the horse, let alone be up to riding it. I wasn’t sure what my POTS would be like, and getting dizzy or faint when on something so high up was a scary idea – but thankfully this hasn’t been an issue. I started off with the idea of just having one lesson, but now it seems that I can’t wait for the next week to swing by so that I can have an hour of freedom where my disability doesn’t get in the way of my enjoyment.

I never thought I would find another physical activity that felt as good as dancing.

As far as the effects of my illnesses on top of a horse, there are a few things that I notice. As far as POTS goes, its actually a pretty good type of exercise if you are ok sitting. Its basically a sitting down type of exercise, and as such, I don’t find myself getting faint, dizzy or spaced out like I do when I’m on my feet. It also gets you really working your leg muscles, and I think this also helps with getting your body circulating your blood back up to your heart much more then other types of exercise seem to.

With Ehlers Danlos Syndrome its a mixed bag. In the long run, the muscles that you work will strengthen hugely, and it really works the insides of your legs, which for me are muscles that really don’t tend to work properly when I walk. In effect, it can eventually balance out and strengthen your leg muscles, which should hopefully stop things subluxing and dislocating as much. It also really strengthens your core – I don’t think I’ve needed my core anywhere near as much as I do to balance on a horse, and in the long run, I think this will be a big positive. This type of exercise constantly moves. Although I work hard, my muscles don’t tend to get as tired as I would expect, and I think this is because I am not needing to hold a fixed position when I’m working. Weights at the gym have never suited me as my muscles fatigue quickly, but because I am constantly engaging different muscles, it seems that no one muscle set gets overworked which is a big plus!

On the other hand, it does have its downsides. For me, the biggest of which is that my hips tend to pop out of place within the first 5 minutes of getting onto a horse, and this is pretty painful! I tend to just keep riding as I know that even if I got off and popped them back into place, the same thing would happen as soon as I got back on. My knees and ankles are also vulnerable to subluxing when riding, and again this does hurt. I am just banking on the idea that it will strengthen them in the long run and so will be worth the initial pain. It is also hard work – I am using muscles that I never knew I had, and engaging my core when I have been largely inactive for the last 2-3 years is no mean feat.

Its not easy to get myself there on a bad pain day, but it never ceases to make me feel better by the end of the lesson! The sense of achievement I get from a good lesson means the world to me, and spending time around such intuitive animals is extremely therapeutic. No matter whats gone on in the week, it all gets left at the door, and 100% of my focus goes into that lesson, and that horse. After all, the minute you get distracted that horse will pick up on it and will stop doing the things you need it to do.

At the end of the lesson, I do end up wobbling about looking a little on the drunk side until my joints pop back in and my muscles acclimatise, but its totally worth it, and no matter how much pain I’m in, I have the biggest grin on my face for hours afterward.

For me, this is something that works. Remember that I’m no doctor, and that it may not be suitable for you – we are all different. However, never rule things out. We can do so much more then we think we can – sticks, wheels or pain, it doesn’t have to stop us finding things we love to do. Never stop searching for the things in life that make you happy. We deserve it as much as anyone else, and EDS/POTS doesn’t mean we can’t find the joy in life.

Be brave, and find that ‘thing’ that makes you forget your ill.

Living Alone with Chronic Illness

Living with a chronic illness is hard.
It effects every aspect of your life – from eating and sleeping to getting out and socialising. Every day presents new issues and a continuation of the same old struggles that intrude on every minute that passes.
I am tired of being tired. I’m tired of being in pain, and tired of feeling like every single job to do is a mountain that is hard to climb.
Every task is broken into parts – parts that I never even knew existed before my condition deteriorated. Having a bath isn’t just having a bath; It consists of running it, finding a towel, turning it off, undressing, getting into the bath, washing my body, finding the energy to get out of the bath, drying myself, taking the plug out and dressing. This one small task that usually takes minutes for most has to be split into 10 different parts and usually takes me the best part of 2 hours. Whats is more is the exhaustion that follows this can knock me out for half a day or so.

Its hard to explain why you can’t manage to cook or do the washing up, but if every task has to be split into bight size chunks, the energy and time needed for this far exceeds any that I have in a day.

For this reason, living alone has its perks.
I don’t need to feel guilty that theres washing up on the side, or that some days I don’t have the energy to pick up the dog toys on the floor. I don’t need to explain why I can’t join in with the communal cleaning day, or that I would rather paying a cleaner thus looking lazy. I don’t need to worry that my washing stays in the machine a few extra hours before I manage to put it out to dry, or feel bad that I am not up for work like every normal person is.
In a lot of ways its done me good – but there are also some downsides.

Sometimes I am desperate for someone to chat to in the evenings, and someone to share the cooking with.
Eating is a challenge when its hard to cook, and the energy needed for the washing up doesn’t seem worth the effort. Sharing a meal gives food a purpose, and I am much more likely to cook if someone else is about.
The extra challenge is managing food when every time you eat you feel ill anyhow. I struggle to swallow properly, and often end up feeling horrifically full after just a few bights of food. Each day is different, and feels somewhat unpredictable. Some days I manage just fine, but other days even water comes back up, and often makes me choke.
For someone who used to be anorexic its a very hard thing to balance.

Seeing people day to day is also a big challenge. I go days without seeing anyone when I’ve crashed after doing too much, and this can really effect my mood. Loneliness is a common feature in many of us with chronic health conditions, and I have yet to find the answer to this. I have lost contact with many of my friends, and there are few that understand that most of the time people coming to mine is the only surefire way of seeing me.
I find it hard to meet new people. In a body that doesn’t look nor feel like mine, I am embarrassed to introduce myself. Walking around with a walking aid has dramatically shifted the way strangers react to me. No longer am I a ‘normal’ pedestrian – instead people stare and give me looks of sympathy. Those that have the guts to talk to me treat me like some poor young person who has had bad luck to deal with, but this interaction is rare.
I hate this part the most. I want to look and feel normal. I want to be back to the person I was before things went down hill – but I know that this is no longer possible.

Living alone is great most of the time, apart from when it isn’t.
I am lonely, the house is a mess, and most of the time my head is too foggy to function. Some days it doesn’t feel as great as it should.

Another Day, Another Diagnosis

Yesterday I took yet another long journey down to London for another hospital test. This time around, I had the joys of a gastroscopy, which too be honest is not the nicest thing I have ever experienced – 6 hours nil by mouth may be tolerable if you live right by the hospital, but doing this along side a 2.5 hour journey was particularly unpleasant – I never realised how much I love drinking water!

I elected to have sedation as I am not a fan of feeling like I can’t swallow or breath, and judging by the bits I remember (namely choking), I’m pleased I did! They also took a couple of biopsies whilst down there, and again, the idea of knowing someone is taking a small chunk of my digestive tract isn’t something I want to be aware of while I’m unable to run away.

Sitting on the ward with a cannula in my arm felt odd. I don’t often consider myself to be ‘sick’, but each time I’m faced with a hospital test, it suddenly becomes real. I become painfully aware that these tests aren’t given to healthy people, and the number of tests I am in the process of having are certainly above the average for a healthy person of my age. This last year I have had far to many tests. Scans, an MRI, an echo, cardiac stress test, lung function test, 7 day halter monitor, numerous ECGs, tilt table test, a sleep study, 2 weeks wearing an actigraphy monitor, many hospital appointments, too many blood tests to count, and now comes the barrage of tests for my digestive tract and bladder. EDS really doesn’t let up. The worst thing is that I am fully aware that these are by no means the only tests that will come up in the near future as there are still other referrals to be sorted.

With every test comes the chance of yet another diagnosis, and this gastroscopy was not to disappoint. I have had digestive issues for so long that I forget it isn’t normal – recurrent issues with acid reflux, dysphagia, bringing up food (either undigested or partially digested), feeling sick every time I eat, bloating, pain, food intolerances, IBS type symptoms and only managing small amounts of food in one go before feeling like I’m going to throw up. I spent years trying to get help for it, but have repeatedly been told that its ‘probably just IBS’, or other equally unhelpful comments.

It wasn’t until I paid for that private appointment with a POTS specialist that these issues were taken seriously, and I after a long fight with my GP, I finally got a referral to a gastrologist.

With Ehlers Danlos Syndrome and POTS, gastric issues are common. A body thats too stretchy often leads to complications, and POTS is no better. Common issues include dysmotility such as gastroparesis, GORD, hernias and dysphagia, alongside issues with constipation, diarrhea, pain and cramps. To put it bluntly, its a whole bundle of fun.

I hadn’t really put much thought into weather they would find anything wrong during the gastroscopy – I think things have been belittled so often when I have gone for help that I had thought that there was nothing really wrong. If you spend enough time telling a patient that it must just be because they are tired/stressed/nervous then they start to believe it. I genuinely thought that perhaps everything was in my head rather then a real problem, and that these tests would only highlight this.

So after I came too, I headed into the nurses office who went through the exam. To my surprise I have a fair sized sliding hiatus hernia (and some damage done by acid reflux) to add to the list of weird and wonderful conditions caused by my faulty collagen!

The thing that has thrown me off most about this is that according to the nurse, this doesn’t explain a lot of the issues I have with my stomach, and so chances are there will be another unexciting diagnosis right around the corner. I have a couple more tests for these on the horizon, and it is safe to say I am looking forwards to these like a hole in the head.

Sometimes I think that I don’t really want to know what is going wrong anymore. I have a list of diagnosis fit for any 90 year old, and its scary to think just how many more may be added to the list. Ignorance is bliss as they say.

To add another spanner into the works, my blood test results for my thyroid levels have come back wrong for the second time – so no doubt that will be the next thing on the list to figure out.

For someone that looks so well, I certainly have a talent for being broken!

The Reason I Speak Out

Recently I have had a few people telling me that I am ‘strong’ for talking openly about this. ‘Brave’ to publicise my illness, and that this sort of thing takes guts.

In all honesty, I do not feel any of these. Strength, bravery and guts come from being left with no other option. If I do not talk about my invisible illnesses, how on earth can I expect those around me to understand that I am ill? I have spent years getting angry, upset and frustrated with being continually labeled as lazy, but in reality what is there to go on?

I am young, I look fit, and I look healthy. I make the effort to go out, and on the days that I know I can’t bear the pain or exhaustion I hide away so that nobody has to deal with it. To the outside world I am not obviously disabled – I am normal.

The fall out from this continual cycle of putting on a mask for the world is that you begin to feel low. I have struggled with depression for over 11 years, medication has been a life saver, but it can’t do it all. In reality as much as I do need that medication, I also have to change to survive.

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Recently my mood dipped again – its a deep dark world inside the head of a person with chronic pain and chronic health conditions. Who wouldn’t get depressed if life day in and day out was painful, unpredictable and lonely? Who wouldn’t get depressed when being forced onto a different path from the one you have worked so hard to be on? Depression is a very reasonable response to chronic health conditions, both physical and mental illnesses.

Although I am low, I have also been in this cycle enough to know that I will bob up again, even when it doesn’t feel like it. I put things in place to keep me safe, and I force myself to engage in the outside world. Sure, staying in bed in a numb state or crying for hours on end are the things that I want to do, but I also know it does nothing to help me climb back into the light. This particular time I have gone so far to remove any spare medication from the house. That was a massive decision to make, but I know it was the right one. I felt extremely anxious without them (oddly they are like a safety blanket to me – both for pain and depression), but with the temptation out of the way it has given me some breathing space from the darker thoughts that I was having.

I also had to find something to motivate myself. It used to be dance that I ran too when I was depressed. It was the most amazingly wonderful hobby in terms of my mental health. Any anger or sadness got ploughed strait into a class, and as my whole attention was focused on how to get better, it gave me some wonderful time out, no matter how rough things were. Unfortunately I am far from able to balance on one leg, let alone be jumping around a dance floor now, and when I started getting low, I was also hit with just how much I have lost.

I knew I had to find yet another coping mechanism, and thankfully I have found and joined up to what is effectively a community pottery studio. I have a code for the door, and can go any time. The place is filled with absolutely lovely people, and everybody has welcomed me. The clay work is therapeutic, but what is most amazing is the sense of belonging that I never usually have. They take me as I am, and I don’t hide myself away – I can spend my time chatting and creating and bonding to people – this is the gem that will pull me out of myself and back into the real world once more.

Depression for me is always followed by change because I literally couldn’t stay alive if I carried on as I was. It is not something that I will be ashamed of, and it is not something that I hide – it forces me to keep pushing myself upward when everything else is pulling me down.

This is not a choice though. Talking about this is no longer just an option. If I want to beat this depression, to cope with the pain and build a life with my illness then I absolutely have to explain the invisible to those around me.
It isn’t strength – it’s necessity.

Pain & Fatigue

I have often wondered quite where the pain/fatigue cycle started for me. It seems to be a little like the chicken and egg scenario. My high pain days seem to coincide with the days I am most exhausted, but weather thats because the pain tires me out, or the lowered energy levels give me less tolerance to my pain I will never know.

This particular cycle is tricky – particularly with EDS and POTS. In theory the more you can strengthen your body through appropriate exercise the better you’re body is able to keep its joints in place, and regulate your heart rate and blood pressure in an upright position. In effect this would mean a decrease in both pain and fatigue.

In the case of POTS this is largely things you can do lying down (no, not the one your thinking of), and in EDS it is exercise that will gently build up strength without putting undue stress on your joints.

In practical terms however, this only seems to work so far. Sure I am aware of these factors, but on days where it takes all of my strength to head downstairs (on my bum) to have a change in scenery, and struggle to work through the fogginess or push through the pain enough to get dressed, it feels absolutely impossible to get myself down to a swimming pool or off to a pilates class. On the days that I do push myself to do things (such as appointments or family gatherings) I am able to put on a good enough show, but the following few days are a living nightmare.

Having had a busy weekend, and 2 hospital appointments in London in the space of a week, I feel like a zombie. I may not look like I have an axe sticking out of my head, but I sure as hell feel like its there. My whole body aches, far too many joints have subluxed, and I appear to have a forcefield surrounding me ‘protecting me’ from any outside information getting near to my brain. It is on days like today that I begin to wonder just how on earth I can manage another 50 years of this.

Insomnia is another part of this cycle for me and many others. Again, it is hard to know where it got added into the mix, or if this was an initial member of the party, but it doesn’t half play a large role in keeping the cycle running. I struggle to sleep at the best of times, particularly if my pain levels are high or I’m too tired (oxymoron I know). I will toss and turn trying to find a semi comfortable position till about 4am, and often wake up to 4 times a night in a huge amount of pain. I attempt the usual sleep hygiene advice, and practice mindfulness with mixed results, but this never solves the problem.

I remember a doctors trip just over a year ago. I felt like I was loosing the plot. I was going through a particularly bad patch with both pain and insomnia whilst writing my thesis, and plonked myself down begging for help. I had been countless times before pleading for a referral with a pain specialist to no avail, and I had no idea how to manage things. I was barley sleeping at all (we are talking months of waking up countless times in pain averaging 0-2 hours sleep a night) and tried to explain to her the problem. Her answer was ‘well I don’t want to prescribe you anything for your sleep because your waking up in pain’. Fair enough – to which I replied ‘Can we do something about my pain then?!’. Her reply was ‘No, theres nothing we can do’.

I came out of that appointment and cried. To have insomnia on top of pain is extremely tough. Not just because your exhausted, but also due to the fact that you get absolutely no break from it. Sleep (when I do get it) has often been the one and only time in the day/week/month where I have managed to have some time out, and doctors often forget that this is extremely important if you suffer with pain on a daily basis.

Having deteriorated hugely at the points in my life that I was exercising most, and having gotten to a point where just cooking a basic meal can be the sum total of my energy or pain tolerance for the day I am at a loss of how to help myself. I can not push my body much more then I already do, and each day seems to bring a worsening in pain and fatigue. I couldn’t tell you the last day I had no pain, or even the last day that the pain was able to merge into the background. I can’t remember the last time I felt like I had energy to spare, or a night that I was able to wake up feeling truly rested. It is exhausting in and of itself, and extremely isolating.

Those around me recently have tried to be positive. ‘You will get better soon’ or ‘They’ll find a way to fix it’. ‘It can’t be that bad’ or ‘If you just do X then you’ll feel better’, but the reality is very different. EDS is a genetic condition. My genes can not possibly be fixed. Chronic pain is notoriously difficult to deal with – as you experience pain, your brain builds pathways. The more pathways that are built, the more you feel pain. I have been in pain for as long as I can remember – this isn’t going to be a quick fix, likelihood is that this isn’t going to be fixed at all. I pushed and pushed myself until I became too unwell to do so – there is no more energy left to ‘just do’ anything.
I don’t feel positive, and am struggling not to allow my angry side to run free with the next positive comment thrust in my direction.

Accepting that I am ill is much like grieving for any other loss. I am hurling between all 7 stages at a rather alarming rate – the rational side of my brain that may be able to tolerate the views of those that don’t have experiences in chronic pain/fatigue or other illnesses appears to have left the building.

Assessment with Social Services

A few weeks ago I took a massive step into the world of accepting my disability. The last few years have been getting progressively tougher as far as EDS/POTS go, and as ever, I have been stubbornly refusing to admit defeat. I pushed and pushed myself to do all the things I ‘should’ have been doing; I hid the typical pay off for such activities (think of it as borrowing 5 days worth of energy to manage the trip outside of the house or food shop); I refused to push for medical help for fear of being accused of attention seeking behaviours, and I would barely mention anything to those around me for fear of the same reaction.

I have heard countless times from other EDS sufferers that their problems were diagnosed as mental illness. Depression, Anxiety, and even personality disorders are common – the logic of these decisions seeming to be ‘you can’t possible have that much wrong with you, you must be mental’. Unfortunately when your collagen doesn’t work properly anything and everything can be affected!

Mental health problems for me were a huge barrier to accessing help for both EDS and POTS. Due to childhood trauma and difficulties with my family I developed depression, PTSD and anorexia. These 3 diagnoses have been fairly acute at times, and it has been an up hill battle to attain the right help to get better. What I hadn’t been told was that someone had also labeled me with Borderline Personality Disorder. This particular diagnosis made it almost impossible to get any help at all. Every plea for support led to people ignoring, disbelieving and refusing to put help in place. I was repeatedly told I would get dependant on the system, and that there was nothing anyone could do for me. This also extended out into the treatment of my physical health problems, and it wasn’t until I fought to get the diagnosis removed from my records (and changed GP) that I was finally at least listened to. I had spent 11 years of my life repeatedly asking for help with pain, 4 years fighting to see a rheumatologist, and 6 years pushing to get an assessment with a physio! I would love to tell you that all of my problems getting help were magically fixed with the removal of BPD from my records, but it is rare to meet a doctor who will take the EDS symptoms seriously.

With all of the above in mind, it feels particularly bizarre that I have been given a recent assessment with the social services, and that the person who assessed me saw a genuine need for a lot of help with my day to day living. She will be organising direct payments for me, and I will essentially be employing someone to do the exact same job I had to give up not long ago.

The assessment itself felt odd. I am rarely honest with those around me about what I can and can’t do. People don’t know that having a bath or shower exhausts me, causes palpitations, fainting and often leaves me stuck due to my joints going out of place (I manage it once in 5/6 days at the moment, and managed to sprain my wrist trying to get out). People don’t know that I struggle to wash my hair more then once every 4-5 weeks due to pain, subluxation and fatigue. I don’t tell people that I struggle to cook anything for myself now (having gone from cooking all meals and baking twice a day for years) or that I often can’t eat much anyhow has my jaw pops out of place and my swallowing has gone to pot. I barley leave the house, I rarely have the energy or lack of pain to do simple cleaning tasks, and I struggle mentally due to the adjustments I have had to make so quickly. I can’t tell people all of this and more because I am petrified of being labeled as lazy, attention seeking – asking for help was one of the scariest things I have done. The social worker made me feel totally at ease – nothing I said made her react badly, and not once did she accuse me of making things up. On the contrary she was putting in more help then I would have ever asked for – recognising not only the help I need with daily living, but putting in support to get me out which could potentially open my life back up to something half normal.

The next steps are to wait for the hours to be calculated and to have a financial assessment to see how much (if any) I need to pay towards my care. As I am not working it shouldn’t be extortionate, and to be honest it is likely to be totally worth it just to regain some of my normal life back again.

The transition will feel difficult – at no point could it feel comfortable to agree to help washing. It will be odd having someone to help with food and cleaning, and even stranger to have someone around to support me leaving the house. Minus the washing, these are tasks I performed when I was a personal assistant to a disabled woman, and I never thought I would be on the receiving end just 11 months after starting that job – especially not at the age of 28.

I hope I will adjust – but this is no longer a real choice. If I stay like this I may as well write off a future in exchange for a life full of day time tv and poor hygiene. I want a life. I want to get to a point where I can do normal things, study or work, and have the energy to engage with the outside world. If I need a little extra help along the way to achieve this, then so be it.

Chronic Illness is a Lonely Place

Having a chronic illness is more then just feeling unwell. It is all consuming, scary, and bit by bit it can eat away at your life until there seems to be nothing left.

Most of the time, like many others, I tend to provide the outside world with the version of me that looks well. I barely talk about the pain, the fears and the frustrations. I want people to see the person that I am without the illness colouring their views, but this also means that they only see a part of me.

Underneath the facade lays a river of emoitions ranging from anger, frustration, fear to simply feeling numb. Day upon day, as my body does yet another unpredictable thing, the mask gets harder to hold. This leads to isolating yourself simply because you don’t have the energy to provide the outside world with that cheery sarcastic person you have always appeared to be. As the days that I see people diminishes, depression sneaks back up on me, and I am finding it a fine line between staying mentally healthy, and sinking back into the all to familiar world of darkness that I have become accustomed too.

It is difficult to be in pain. It is difficult to feel exhausted for no apparent reason, and difficult to explain the invisible symptoms in a way that the uninitiated will understand. How can I possibly explain that I can’t even wash more then once in 5 days or cook myself a simple meal anymore? How can I explain it to people when I look so healthy on the outside?

I used to be a different person. Having essentially grown up with pain (be it emotional or physical) I became adept at pushing through. I have a stubborn streak, and this meant that I was able to force myself into my work/studies/social time even on the worst of days. I was able to push myself far beyond the point that I should have stopped, and it is this part of me that is most frustrated. For the first time in my life I have had to stop. There has been no choice in this. It isn’t laziness or a lack of motivation – I have simply reached a point at which my body has decided it can’t be pushed any more. I used to be extremely active, I used to keep up with my hobbies and travel around unaided even though I was usually only managing 2-3 hours of sleep a night. I had big dreams for what the future would hold. Dreams of what I would become, and what I would work as. Dreams of fixing myself somehow.

Alongside chronic illnesses such as POTS and EDS you are often forced into the position of having to reassess your abilities. As each day goes on, your dreams and independence are slowly stripped away from you. You are suddenly aware that all of the things you had worked towards may not work for you any longer; you may not be able to keep up with the pace of the type of work you have always dreamed of, or are in too much pain to keep up with your peers. Every aspect of your life and your future is now coloured by the knowledge that this unwelcome bedfellow will be with you for life.

So when those in the outside world are telling me to ‘buck up’, ‘get on with it’ or that ‘things will get better soon’ it makes me want to scream. The number of well meaning comments that go along the lines of ‘have you just tried to ignore it?’ or ‘I know someone with a disability far worse then yours and they run a business’, meant in the nicest of ways, actually lead to you isolating yourself more from those around you for fear of frustrating them with your (perceived) pessimistic views on life.

I wish more then anything that I could be totally honest with those around me, but like many other chronically ill people, I have learned that looking well leads to far fewer issues then laying yourself bare.

Perhaps one day I will build up the courage to speak these words aloud or to answer truthfully when someone asks how I’m doing. Until then I will continue to perfect the happy facade (whilst swearing under my breath as yet another joint goes on an unexpected and unwelcome visit to its neighbour).