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.


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!

Accepting the Liebster Award!

ImageI was really touched to receive a nomination for the ‘Liebster Award’ – thank you to Julie at Julie’s Spoonful of Sugar. I’m sorry it’s taken me so long to accept – lots has happened over the past month – including starting Humira which didn’t go entirely to plan. I’ll go into all of this in another post.

Julie, your description of the Liebster Award was so great that I hope you don’t mind me reusing it here:

Info About the “Liebster Award”

The Liebster Award, or “the favorite blog award”, is an internet-based award that is given to bloggers by other bloggers. In Germany, the word “liebster” has the same meaning as “favorite, beloved, or dearest.” This award is primarily given to blogs that have less than 200 followers. That way, it helps the blogger with being more known to the world as well as giving the blogger the opportunity to learn about more amazing bloggers.

If you are nominated for the “Liebster Award”…then what??

If you are nominated for the Liebster Award, these are the following steps you need to take in order to graciously accept your award…

1. Link back and recognize the blogger who nominated you.

2. Answer ten questions given to you, by the person who nominated you.

3. Nominate ten other bloggers for the award.

4. Create ten questions for your nominees to answer.

5. Notify your nominees.

And lastly, you may copy and paste the award (which is at the top of this post) on your blog!

So, here are the 10 questions that I’ve been asked by Julie, and my answers:

  1. What is your earliest childhood memory?
    Playing with other children in a paddling pool at nursery, aged 3
  1. If you were an animal, what would you be?
    Good question, I’d have to be a dolphin!
  1. What was your first car?
    The first (and only car I’ve ever owned) is a Ford (I think it’s a Focus)!! It’s purely functional and it’s with my mother now in my home town as I can get everywhere easily with public transport in London (especially if I get a seat).
  1. What is your current obsession?
    Learning the ukulele. I’ve only had one lesson so far but loved it. Playing it distracted me from having swollen and painful wrists.
  2. What are your top three favorite hobbies or activities?
    1) seeing art, whether in a formal exhibition or street art 2) going to concerts & gigs 3) going for coffee & cake with friends. When I have more energy I’d like to branch out and do more!
  3. What is the color scheme in your living room? Unfortunately it’s white, as we rent rather than own the flat, but I’ve livened it up with paintings including a Tuscan scene with warm tones.
  4. Do you consider yourself an auditory, visual, or kinisthetic learner? I think I’m an auditory learner, as I love trying to learn new languages and musical instruments, as well as being fascinated by words and new facts (although I’m passionate about the visual arts too).
  5. What one event has most influenced your life? Volunteering at a kids’ club in the local Women’s Refuge when I was 15, especially dressing up as Father Christmas as no men were allowed in the building and no one else wanted to do it. As a result, realising I wanted to keep trying to ‘make a difference’ in the world, which sounds corny, but it’s true.
  6. Do you prefer salty or sweet snacks? I have a sweet tooth so would always go for those snacks first.
  7. What random act of kindness by someone took you most by surprise? That’s a really hard question to answer! There have been quite a few – a recent one that stands out is when a complete stranger found me in distress (having bronchospasms due to a reaction to a drug) near a hospital canteen, then accompanied me to the emergency waiting room, and stayed with me until I was seen by a doctor. It was so kind of her.

I’d like to nominate the following 10 nominees for the Liebster Award (cue drum roll):

  1. Cecilia’s Diary
  2. Chronic Rants
  3. Our Life with Ehlers-Danlos Syndrome
  4. Beating Rheumatoid Arthritis
  5. An Angel with Wings
  6. Living with RA: the Rite of Aging…Early
  7. Defying the Odds
  8. Radiate Hope
  9. justanotherspoonie
  10. Misdiagnosed me…advocating for others like me

And the questions that I’d like to ask the wonderful nominees to answer:

  1. What was your most memorable holiday?
  2. What advice would you give to someone with a new diagnosis?
  3. If you could live anywhere, where would you choose?
  4. Who inspires you the most?
  5. What is your favourite music? (type or artist)
  6. How would you friends and/or family describe you?
  7. If you could wear an invisible cloak for the day, what would you do?!
  8. If you could star in a film, which one would you pick?
  9. What is your favourite quote?
  10. What is the most outrageous outfit that you have ever worn (to a fancy dress party or any other time!).

That’s it – thank you again Julie from Julie’s Spoonful of Sugar for the nomination 🙂 and thanks to anyone who has ever read or commented on this blog. After a tough month, I’m ready to get stuck into blogging again.

Fabulous Fashionistas

Over a week ago I watched an amazing TV programme called Fabulous Fashionistas, following 6 women between the ages of 73 and 90, who were all stylish (in different ways). They shared a positive attitude and approach to life and enjoying it. As 75 year old Bridget said: “I don’t give a damn what people think about me or the way I dress. I dress for myself because I love style and design and colour.” And I wondered whether dancer and choreographer, Gillian Lynne, 87, had either hypermobility syndrome or Ehlers Danlos syndrome because she had such great flexibility, and is still working: “It’s all about having a purpose. And that’s why I think to retire is dangerous.” Her morning routine includes 40 minutes of stretching every day, which makes me resolve to keep going with my physiotherapy routine although my energy-levels are at an all-time low. I thought Daphne Selfe, an 85 year old model with striking, almost waist-length silver hair, summed everything up perfectly: “Enjoy it as much as you can. After all you don’t get a second chance.”

The fashonistas’ ‘joie de vivre’ shone through and it was an incredibly feel-good film. So feel-good that I’ve watched it again, as their energy and enthusiasm for life is inspirational. It’s been a tough few weeks as I’m still in limbo, waiting to start anti-TNF treatment for rheumatoid arthritis (Humira), so I need all the positivity I can get! I’m hopeful that once I find the right drug for me (hopefully this one), I’ll be able to embrace as many challenges as possible – starting with a 5k run.