Wellywood times

This week I went to Wellington. It was totally overwhelming. Thank you to everyone who made it awesome.

I used to live in Wellington, so going there feels a lot like coming home. I was excited and nervous for this visit, mainly because I planned to see lots of old friends, and meet many new ones. I love meeting people but I’m socially anxious, and I was also very concerned that I would be too ill to keep the commitments I had made. Luckily, that only happened once, and everyone was very understanding.

Thank you so much to all of you who made the time to see me, and made allowances for my many restrictions. It was such an honour to meet you. It feels amazing to know that, when I eventually move back to the city, I have such a wonderful group of people waiting for me. And I didn’t even manage to meet half of you I wanted to!

I’ve been thinking a lot about my future. I relocated to Nelson early last year, for two reasons – to rest (which obviously I have done a LOT of), and to spend more time with my family. Being in Wellington was a sharp reminder of how much my life has changed. I am trying to be accepting of my currently very limited world, but being in the city brought into painful focus just how much I’m missing out on. It cemented my feelings that, once I’m well, I want to move back.

I try not to think of my life as being “on hold,” though it certainly feels that way, especially when I see so many of my friends moving forward, doing awesome things, making progress. I have to remind myself that, thought it may feel like sitting still, I’m learning a lot from being sick.

Clearly, despite the wonderful time I had meeting people, this trip was very difficult for me. The realities of illness become much more stark when you are taken out of your comfort zone. For example:

Getting around. I get anxious about public transport, but I didn’t have much option. Even a few blocks is difficult for me to walk, so in order to get anywhere I had to catch the bus. I did manage to do some walking, but I had stubbornly refused to take my stick with me, (stupid vanity) so I was very slow – and Wellingtonians do not understand slow walkers!

Tiredness. All the tiredness. Obviously at the moment I have very little energy, so getting to places and spending time with people really took its toll on me.

Emotional impact. I’m an emotional person at the best of time. I feel things deeply and I care about people. Meeting my old friends and hearing about the things they are going through effected me a lot. Being in the city and realising how much of life I am missing out on effected me a lot. Being excited and socially anxious about meeting new people effected me a lot.

Medication and food. As those of you who have seen my pill box can attest, I have to take a fairly large amount of medication several times a day. Keeping this routine can be very difficult whilst travelling, as can sticking to my extremely restrictive diet. I did manage to do both these things for the main part, but I strayed a couple of times and ate things I shouldn’t have, and then paid with extreme abdominal pain afterwards. On top of that, I have to be careful with my nutrition otherwise I will lose more weight. And despite me thinking this is a good thing, my doctors assure me it is not.

Financial impact. I was incredibly lucky that friends arranged the trip for me, and I stayed with other friends, so that meant I could afford to go at all. But eating out and having coffee and catching buses etc etc adds up very quickly. It really, really sucks being the poor friend. It creates these awkward situations where people are not sure if they should pay for me, because I might be offended or it might be seen as inappropriate or a loaded gesture, and we end up sort of doing this weird little shuffle tussle over it. I also met up with people who had donated to me, which was a really humbling experience that I tried hard not to be embarrassed about. I’ve always been very concerned about being fair and paying my way, so I find it very difficult to allow others to support me.

While I’m talking about this, I wanted to share some good news. The IRD have approved my application for financial hardship, which means they are writing off my debt to them. It’s hard to describe what a massive relief this is for me. It means I won’t have to pay them back from out of my benefit, which would have had significant impact.

I also have to say another incredible thank you to everyone who donated to me. (And yes, I know who you are). Because of you, I’ve been able to get my new glasses. Twitter has literally given me the gift of sight! lol.

Here’s one of my new pairs: (apologies for messy hair and paleness!). I’m not sure about them – what do you think?


Anyway, I’m getting off track. I’m going to do another couple of posts about the trip, as there’s a few other aspects I want to highlight (my visit to the National Library being one of them.) But it’s about time for a rest in the sun with the cat.