On happiness

Happiness is U-shaped – according to research people are happiest in their teens and later life, and least happy somewhere in the middle. A few days ago I went to a fascinating lecture on happiness that showed gardening (or at least, having the chance to get out into nature) made a difference to people’s life satisfaction, as did walking, swimming and playing sport. Unsurprisingly, when people were asked what would make them happier, better health was a top priority. For those my age, ‘More time with my family’ was number 1, followed by ‘Loads more money’, ‘Better Health’, and lastly, ‘More/better possessions’. (See Ben Page from Ipsos Mori’s presentation for more insight into wellbeing).

The lecture got me thinking. This ‘U-shape’ of happiness can be challenged! I refuse to let my chronic health problems get me down. In a way, being told that I’m likely to be most depressed at this life stage makes me even more determined to make sure that doesn’t happen, and that health concerns don’t take over my life. It can be a struggle when your body and joints ache like hell and your fatigue levels are so low that no matter how much sleep you get, you don’t feel refreshed. Last week I was told by the rheumatologist that I had to stop Humira (Adalimumab) injections, and move to another anti-TNF drug, Enbrel (Etanercept). I only had 5 doses of Humira but had some unpleasant side effects so I have to stop it. It’s frustrating as it means Enbrel will be the fifth drug that I’m trying to treat rheumatoid arthritis.

Despite this setback, I’m still seeing friends, going to films, doing normal stuff that not only boosts my mood but also distracts me from the pain and worries about my health. Next weekend I’m going Scottish country dancing which I haven’t done for ages. Playing the ukulele has been a fantastic way to unwind, meet new people and have fun. After just two weeks I can play 6 songs, including ‘The Lion Sleeps Tonight’, and I can’t wait to learn more. At the end of the course, we’ll do a group performance on YouTube which should be a great laugh – I’m hoping it’ll be ‘Blue Suede Shoes’. Learning a new instrument has reminded me that you can do anything if you put your mind to it, and it’s an amazing ‘high’ to start the year on.

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Making EDS visible

Lacerating the inside of my throat with a carrot ‘stick’ is not an experience I wish to repeat! That happened as a result of having Ehlers-Danlos Syndrome Hypermobility type (also known as EDS Type 3 Hypermobility). EDS is a genetic connective tissue condition. There are 7 different types of EDS. Some things I experience as a result: joints over-extending much further than normal, often leading to dislocations and subluxations; joint pain and overwhelming, constant fatigue; slow healing; scoliosis; and easy bruising. Local anaesthetic does not work, unless I have 3 doses of it! There are lots of other aspects but these are the ones that spring to mind first. As a teenager, before formal diagnosis at 15, I had 5 teeth removed due to overcrowding and it was agonising as I had the ‘normal’ amount of anaesthetic. Even now, years later, when I say to surgeons and consultants that I need much more local anaesthetic, they don’t always believe me, until I scream that I can feel everything and need more NOW!

I think EDS is more of an invisible condition than rheumatoid arthritis, as fewer people have heard of it or the implications of having it. I hope that 2014 will be the year that more people learn about EDS due to increased awareness. Although I don’t watch it, I know that Cherylee Houston, an actress on mainstream TV soap Coronation Street, not only has EDS Hypermobility type in real life, but so does her character. This is a great way to raise awareness and show that EDS, or any other condition, doesn’t have to define who you are, and that you can lead a fulfilling life with the right treatment and support from family and friends. I’m on a bit of a mission to raise awareness of EDS (and RA) this year, just talking about it when I get the chance (but not going on about it, as I know there’s a difference!). As I’ve said before, I also want to spend less time in hospital and instead do more art, play the ukulele, see friends more often, meet new people, do a 5k charity run (or maybe walk!) and experience new things. What I’m really looking forward to is travelling again once my RA stabilises (if the Humira does its job). I’d love to go to Vienna even just for a few days. And then after a city break, the next step will be a whole week abroad, which I haven’t done since September 2011. I’m not getting ahead of myself, I’m giving myself something to look forward to, whether it happens this year or next.

Kind strangers

While waiting to leave Cambridge railway station, a woman leant across the aisle to say she could help with my bags when we got to London. I looked at her, bemused. It turned out that she’d overheard me telling railway staff that I had rheumatoid arthritis and asking if my sister could come through the barrier to help carry my bags onto the train. She’d also seen my sister lug the bags onto the train and wave me goodbye. When we got to the other end, true to her word, she carried my backpack to a taxi and I took the other 2 bags. Her boyfriend looked a bit surprised that she was so determined to do this! She didn’t expect anything in return. The taxi driver also gave me a hand with the luggage when we got to the flat. In the old days I would have felt embarrassed but not any more. I’ve accepted that at the moment (but hopefully not forever) some things like carrying heavy bags are more difficult. Today, I asked another stranger to open a water bottle as I’d forgotten my special flower-shaped jar/bottle ‘opener’. She did it straightaway, no questions asked. People don’t usually mind at all when you ask for help, and regularly offer when they see me struggling. It makes city living feel a bit less daunting – especially when negotiating public transport (avoiding rush hour, which is always a stressful experience).

As for Humira, I had my fourth dose today (20mg by injection). I’m going to have 20mg each week for several weeks to ease into it gently. (I had a mild reaction to the first 40mg injection, which was serious enough to end up in A & E yet again). The standard treatment is one 40mg jab once a fortnight. Hours later, I’m feeling slightly groggy, with the usual ‘hungover’ feeling that I tend to have on injection days, but otherwise ok. Fingers crossed that this will be the drug that works for me. I’m very aware that I’m on a ‘sub-optimal’ dose at the moment and am actually keen to get onto the higher dose. It’s amazing how my attitude has changed over the last year. After trying several drugs which didn’t work and gave me terrible side effects, I thought I could get better through diet alone, but developing bone erosions jolted me into realising that drugs were a vital part of tackling this disease, as well as improving my quality of life. At the moment, my health anxiety is so severe that a specialist nurse is administering the injections, but one day I want to have the confidence to self-inject. Here’s hoping that in 2014, I will.

Christmas Resolutions for 2014

Rather than making resolutions at New Year, I’m thinking of them now. I could wait, but I’m impatient to get started! Top of the list is doing a fun run (or more likely walk!) to fundraise for arthritis research. Finding a new (part-time) job is also a priority, but dependent on finding a new flat. (I’m urgently looking for somewhere new to stay in London by the end of January). I’d like to spend less time in hospital (with hopefully fewer appointments) and have more fun with friends. Most of all, I’d like to get better. That’s not a resolution but I want to keep optimistic. Who knows if I’ll reach drug-induced remission this year? At the very least, it would be amazing if Humira gets the rheumatoid arthritis stable so I don’t develop any more bone erosions. And I’d like to do more painting, jewellery-making, photography and other creative stuff. Finally, I’d like to spend a whole week abroad (something I haven’t done for several years due to illness) and to keep playing the ukulele!

Inspired by Roz Savage

Exactly a month ago, I started Humira injections to treat rheumatoid arthritis. After experiencing a mild (although it didn’t feel it at the time!) reaction to the first 40mg dose, my rheumatologist and specialist nurse decided to halve it. A little over a fortnight later, I had the 20mg injection and apart from feeling a bit dizzy, I was fine afterwards. There hasn’t been a dramatic change in my health yet but the effusion on my left wrist seems to have gone down slightly. Otherwise, my hands are stiff and my fingers feel bloated as if I’m wearing washing-up gloves filled with water.

A couple of weeks ago I went to a talk by Roz Savage, an environmental campaigner and ocean adventurer who holds four world records for ocean rowing, including being the first woman to row solo across three oceans, namely the Atlantic, Pacific and Indian. Impressive stuff. I was struck by an exercise that she did before she decided to stop being a Management Consultant and to start challenging herself by ocean rowing. She described it as a self-help exercise – writing two different versions of her own obituary, thinking of how she wanted to be remembered. Firstly, the one she wanted, and secondly, the one she was heading for if she carried on as she was. Roz said that she “was held back by my fears – not by money, success, but by the fear of who I could be.” Her physical achievements speak for themselves, but it was her inner journey of confronting and diminishing fears (such as the fear of failure, fear of unknown, fear of fear itself, fear of solitude, and fear of future problems) which really moved me. This got me thinking – I know that I will never row across an ocean, but there are other ways that I can really push myself and face my fears. I’d originally planned to do a 5k walk for charity this month but as I’m not physically up to it yet (and worried about not being well enough it complete it), I can prepare for it next year. It will be a tremendous achievement because it will have taken a lot of physical and mental effort to get there, as someone who happens to have both RA and EDS. Now I’m reading Roz’s book ‘Stop drifting, start rowing’ which explores the search for happiness and meaning in life, and how achieving your dreams is possible.

Things have to get better

Since coming off Sulphasalazine in the summer, my rheumatoid arthritis has been uncontrolled. Not only that, but I’ve been struggling with panic attacks and flashbacks for some time directly linked to an extremely rare reaction to hydroxychloroquine sulphate on 5th September last year, where I thought I was dying. This summer I was diagnosed with Post Traumatic Stress Disorder and Health Anxiety, which is unsurprising, as it feels as if that night happened recently rather than over a year ago. Having specialist treatment for PTSD has helped up to a point. But fast-forward to Friday 5th September this year, and my lungs felt as if they were being flattened. I ended up in A & E with what I thought was a panic attack, but it turns out I had a lung infection which happens a lot with having my lung condition (bronchiectasis). What amazed me during the anxious wait for treatment was the support of a complete stranger who had walked into a glass door herself, causing her to faint. She and her friend did a remarkable job of helping me to keep calm. On another occasion, I comforted a woman who had attempted to kill herself in a different A & E department. She was stripping to pay her way through University but felt ashamed. It was just an idea but I suggested that she could stay with her parents for a bit to save money rather than worrying about rent, and it struck a chord with her. I think hearing a total outsider’s viewpoint helps to have more clarity on your own situation and it can break it down into manageable ‘solveable’ chunks rather than being an overwhelming, swirling mass of panic.

A few weeks later (5th October), I was back in A & E with a very high temperature, racing heart, rash and flu-like symptoms after having the flu jab. I’ve never reacted to it this way before. Looking back, I did panic about feeling like this, but at the time it felt as if going to hospital was the only option. Then, on 24th October, I stepped on a fork, which sounds ridiculous, but it’s true. After dropping the fork I found it impossible to bend down and pick it up as my joints are so stiff, so left it there and forgot about it. It was frightening as two prongs of the fork pierced my left foot, and when I pulled it out it was obvious it would need medical attention. A nurse cleaned the wound and gave me a tetanus jab. I was already on antibiotics for another foot infection so had to take them for another week.

All of this meant that I wasn’t able to start Humira until last Thursday. The pain, swelling and stiffness has got so bad that I feel like an 90 something trapped in a 30 something body. Unfortunately, starting Humira didn’t go to plan either. I went to hospital for the injection, given previous reactions to the last 3 drugs and my sensitivity to them. The actual injection itself was painful but was over quickly. For the rest of the day, I felt a bit dizzy but nothing too serious. However, later on, about 1.30am, I developed a rash on my chest, hands, neck and face, tightening of the throat, difficulty swallowing, pain in the chest. I decided to return to A&E and was given anti-histamine intravenously. They discharged me but the symptoms persisted on Friday, so I reluctantly went back and this time was given more anti-histamine and steroid therapy for 2 days. Now I’m worried about restarting Humira in two weeks’ time, even though it will be a smaller dose. But no matter how tough it is, I’ll get through it.

While wrestling with anxiety, illness and overwhelming fatigue, I’ve also found time to go to a classical music concert, lots of art exhibitions (including two underground), watched two amazing fireworks displays, supported my friend Marianna Zappi’s fantastic gig at a central London museum, and caught up with friends for lunch and coffee & cake. It’s not easy to live with RA but I want to enjoy life as much as possible while getting better. Onwards and upwards!

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Slightly blurry pic of DALeast’s work at the ‘Brutal’ exhibition, held in a disused office building on the Strand in London

Keeping Positive

This Invisible Illness Awareness Week, I’m choosing to keep positive. I don’t want to let rheumatoid arthritis, Ehlers-Danlos Syndrome, osteoporosis, bronchiectasis etc define me. They are part of who I am but my identity is much more than that. And I’ve said it before, jars need labels, not people. It’s easier said than done to remain positive, and there have already been lots of ‘lows’, but that means the ‘highs’ will be even sweeter. I wouldn’t be surprised if a lot of people with invisible illness have depression secondary to their condition – as it is pretty awful at first when you can’t do the things that you used to. Particularly when it’s a chronic condition and someone told me recently ‘it’s for life’, almost sounding like a prison sentence. That’s not how I want to live. I want to find a ‘new normal’ and have daily goals – starting out small. For me, walking and physio are making a difference to my joints – while I wait to start anti-TNF treatment. I’m actually excited and optimistic about what the future holds when I start Humira. Knowing that it has worked wonders for other people helps keep me positive – while remembering that improvements won’t happen overnight but that it’s about  ‘comparing myself to myself’. By this, I mean seeing what progress I’m making on a daily and weekly basis, compared to how I was before starting this (fourth) drug in October. I plan to take it slowly – to see if over time the joint stiffness and muscle pain lessens, the overwhelming fatigue and brain fog start to lift, and I start to have the energy to do more every day. Of course, this is all theoretical right now, as I haven’t started the new drug yet, but rather than seeing it as an evil treatment I have to take, I want to see it as a positive thing that should (hopefully) improve my quality of life.