#thisisAiste

My name is Aiste, pronounced Ice-ter (like the ending of letter). I absolutely love life and have buckets of resilience. Challenges are there to be overcome. Where there’s a will there’s a way. Looking at me you wouldn’t know the struggles I have been through.
 
Over a year ago my life turned upside down and I had my first ever admission to hospital. It wasn’t easy to find out I have an immunodeficiency, which has potentially caused intestinal failure. (I am still amazed I stayed alive for this long – perhaps the body is smarter than we give it credit for it?) I lost so much weight; parenteral nutrition (PN) has saved my life! It is my saviour even with the potential risks. I am grateful for every day I walk this earth and can enjoy the beauty of nature; hike in the hills, valleys, forests and mountains; walk by the rivers, lakes, seas and oceans; watch vegetables grow in the garden and flowers bloom. I am forever grateful to turn the page of another book, to keep practicing yoga, finding ways to adapt that work for me, to rest guilt free, to watch the clouds in the sky. To simply take another breath.
 
PN has given me more good days now than bad ones. A bad day can mean extreme fatigue, belly pains and severe bloating. When this happens, I spend time resting, sleeping and building my energy levels. I always aim to do something every day, even if it’s only essential tasks. It’s quite a challenge for someone who loves planning and sticking to a schedule. I’ve overcome many obstacles, learnt to walk again, rebuilt my yoga business after losing many clients (no one likes to wait for 5 months), worked towards returning to my part-time office job and started training as a yoga therapist (to be finished at the end of September). It has been really tough having to constantly change my plans. I took it for granted when I was well that if I planned something it would happen. Juggling changes, rescheduling plans, hospital appointments and communicating with my homecare company all takes time. I was used to planning a holiday well in advance; now I book much nearer the time and ensure it has a good cancellation timeline – but hope I will be able to go. Bad days are still possible when on holiday, I tend not to plan what I will do but will always aim to have a good time.  
 
People can sometimes ask the wrong questions, it could be “are you pregnant?” – they don’t know my situation and why I am bloated, but it’s a reminder to me that I am ill. It is annoying when I am not being listened to, especially in hospital. If they did, perhaps we could find solutions faster! I want to be involved when discussing my health and my future. As someone who knows what needs to be done in relation to my aseptic techniques and how to administer my PN I want it done right to retain my no infections, long may it stay this way!
 
Being on PN is like having another part-time job, I am thankful I got the job but on the other hand did not really want it! There is a lot of admin work, coordinating deliveries, equipment, feeds and calls. I coordinate my stock and it can be overwhelming having it all at home; a mini warehouse at times. I am also my own nurse; my husband does my PICC line dressing change. People do not realise that there are the connection and disconnection procedures to do, paying close attention, keeping everything clean and safe! The job also includes all relevant check-ups and clinic appointments. Sometimes it’s a stressful job!
 
It has been a very long year, but step by step, brick by brick I am rebuilding my life. It will never be the same again, yet it doesn’t have to be. It can still be absolutely amazing. I am striving to get back to my part-time job (the real one, not just running PN) of a product manager in the catastrophe modelling field. The progress is slow, but I am halfway there in getting my weekly hours to 30. The whole experience has given me an even sharper focus – I spend less time on non-essential tasks, I find it easier to identify what’s important. I always used to be able to do more with less time, but now this ability is even more prominent.
 
I am building back my yoga business as I absolutely love giving my students a chance to relax, calm down and to move. I had to change the way I work, and I now focus on online classes instead of face-to-face. It turns out that this is great, not just for me, but for my students too – less time spent travelling, no traffic delays and no venue costs. We all enjoy it in our own homes; after the class everyone can lie down and relax, no stressful journey home. It’s a win-win.
 
I am training to become a yoga therapist too. Well, if I knew I would end up in hospital for so long, perhaps I would not have signed up for the courses (which was months before I fell ill). However, it’s been a great support mechanism for my own recovery alongside turning me into a better teacher and person overall. It’s been a course of self-discovery and a huge help in picking myself up when I was down last year. It’s been an empowering experience, knowing that I am in the driver’s seat rather than watching my life go by. And that’s exactly what I offer to my clients – a refuge, a chance for self-discovery, for realisation of what’s important to them.
 
I have kept my interests and hobbies and tried to get back to them as soon as I was out of hospital. I love reading or listening to audiobooks, I practice yoga – it used to be every day, now it is 2–3 times a week, but I am keen to increase this. I love knitting and cross-stitching – although I find these are best suited for winter months. I have been an avid walker and hiker, and a reduction in this has been a huge challenge for me. I try to walk at least a little every day, regardless how much pain I am in. My holiday destinations are still geared towards great hiking spots.
 
Being on PN has not stopped me from going on holiday! I have changed my destinations temporarily. As soon as I was PN trained, which I completed within a week, I was on holiday 2 weeks later for my first 2-night holiday in the North Wessex Downs. It was easier to manage 1 night on PN and 1 night off as a trial. Of course, being me and to make sure I am prepared for everything, I took everything in double the amount I needed. After the success of this trial holiday, I booked two 6-night holidays (avoiding dressing and bionector changes in a holiday destination) – one near the long-distance path The Ridgeway and the other at the source of the River Thames. These should have been my walking holidays, yet they ended up being reading holidays, as I had issues with my feet and the pain prevented me from walking much. My most recent holiday was in Wiltshire last month for a week. Even with foot pain, I managed to do a fair bit of walking and saw 4 of Wiltshire’s White Horses up close. Four more White Horses to see in this county and another 8 in the rest of the UK. I haven’t planned those yet but would love to do so. I practice yoga wherever I go, so I had a bit of fun with the White Horses too. I can’t wait for my holidays in Scotland and Wales coming soon. I am going to trial a 2-week holiday. The challenge after that will be a holiday abroad – perhaps next year? I certainly would love to visit my friend in Hong Kong.