Sorry for missing yesterdays post. I have had a bit of a busy time this week and last week. I found out last week that I was accepted into a postgraduate programme in Auckland, which started this week. So, although I'm very excited, it's been a bit overwhelming trying to sort everything out in such a short space of time. Sometimes life is just overwhelming, this isn't a symptom of illness, or a sign that things are deeply wrong, it's just life.


What do you do when you feel overwhelmed?


Also if you are interested in reading a bit more about living with chronic illness, from a variety of perspectives, the below link has a range of people's stories. Some of them have found ways of dealing with their illness, and maintaining a positive attitude, while others are at a stage where the illness is completely overwhelming them. I think everyone can remember being at that stage, even if they aren't currently.


Can you relate to these stories? What are your thoughts on them?

http://www.stuff.co.nz/stuff-nation/assignments/living-with-an-invisible-illness

This is a defense of The Fault in our Stars by a young person who has herself experienced cancer. Some people have opposed the idea of a love story with cancer sufferers central to it. This story defends it, saying that those with cancer have as much right to love and be loved as any other young person.

http://hellogiggles.com/cancer-survivors-defense-fault-stars/

I know most of the people reading this blog won't have cancer. But I think this is a really important idea for anyone with illness and disability. It also relates well to the central idea of beautiful identities, that you are so much more than just your illness. Everyone is a capable of loving and being loved. I am not only talking about romantic love, I'm talking about love in all its forms. So remind yourself of this fact. 

Do you think other people see your disability as a barrier to love? Do you see it like this? How can you remind yourself that you are capable of loving and being loved?


By the way, The Fault in our Stars by John Green is a fantastic book. I mean don't get me wrong, it is sad. There's no other way to put it. But it is also beautiful and hopeful. 

Sorry for the lateness of this weeks post, and for the absence of last weeks post. I have been moving, and don’t have much access to the internet.

Today I want to talk about unexpected changes of plan, often due to illness, although they can happen to anyone. At the end of February I finished my study, and will graduate in April. I had planned to stay in Christchurch, and look for a job relating to my study. However, towards the end of last year, my health dramatically worsened, and I have been very unwell ever since. I wasn’t sure what to do, but was told by my doctor there is no way I should be looking for work before easter, and that I would have to wait and see what happened. That came as a little bit of a shock. I have always worked damn hard to make sure that I could continue with work/study despite my health problems. But sometimes, things don’t go as expected. So I am now living down south with my parents, and having to patiently wait and see whether my health improves.

I’m not going to lie. It sucks. I was so excited about this year, and have now had to postpone all of my plans. But I suppose this is something that happens to a lot of people experiencing ongoing illness. Things don’t always go as planned. Sometimes you get worse; sometimes you get another condition to add to your collection. So how are you supposed to deal with this?

It’s all very well to say stay positive, and there is certainly something to be said for that, but staying positive isn’t always that easy. When things change unexpectedly, you need to have a plan for how to stay positive. I think that there is a lot of value in finding things to distract yourself. Find something that doesn’t make you feel sicker, and let it distract you from thinking about your health. Think about what positives there are, and think about what you can do to maintain some sense of normality in the face of change. Change can be a good thing, it can improve your situation, make you stronger, or change your perspective. But it is never easy. It’s okay to be upset or frustrated, but important to remember that change is the only constant. If your situation sucks now, it will change again, and things will get easier.

How do you deal with unexpected changes in your health situation? What positives do you focus on? How do you distract yourself?

 

P.S If anyone knows a lot about web development, or knows someone who does, and would be interested in helping out Beautiful Identities as a form of work experience, please get in touch via the contact form, or via email, with the subject “Web Development”. Thanks.

Recently I had a conversation with someone from the Mental Health Foundation. I was looking for feedback about Beautiful Identities, and to discuss any support we may be able to give each other. I got a lot of helpful feedback, but we also had a really interesting conversation, which got me thinking about some of the concepts we discussed.

Flourishing is a term used by the Mental Health Foundation to describe a healthy and happy state of mind. It is note about being sick or not sick, but rather about your overall state of wellbeing. To flourish means to be living your life to its fullest. You can still be flourishing, even if you have a diagnosis. And you can fail to flourish, even if you have never experienced illness.

I think it is great to have a concept of wellbeing that sits outside the health/illness dichotomy. 

What can you do to ensure that you are flourishing? Do you feel like you are flourishing, despite illness, or is this something you need to do further work on?

This talk tells a story that is very sad. Ramona went through absolute hell on her road to recovery. But she is testament to the incredible strength people can show in the face of adversity. I think this talk demonstrates the importance of having a supportive team of people around you, to help you face the challenges associated with illness and/or disability. I think it would be impossible to cope without support, whether this comes from family, friends, support groups, or all of these. A recent blog on To Write Love On Her Arms discussed the idea that people need other people, and I think this talk exemplifies this idea.

Who do you have in your support team? How can you show that you appreciate their support?

When you experience a life-changing illness, you keep holding out for that wonderful thing called recovery. But if recovery means being cured, then many people will never recover from their illness. So how do you define recovery? What does it mean to have recovered from your illness? What does it mean to be in the process of recovery?

If absence of symptoms is unrealistic, perhaps people need to be looking at how they are managing their symptoms as an indication of recovery. If you are managing to go about your daily activities, then this is a sign that you are recovering. If not, then that is something you should be working towards with your doctors. I think your quality of life is the most important indicator of recovery, much more so than absence or presence of symptoms. If you are enjoying life, and managing your symptoms well, that is very much a sign of recovery. If you aren't, then you need to keep working towards this. How can you change your activities so that your quality of life improves.

At Beautiful Identities, I talk often about the importance of not being defined by your illness, but it is also important not to be defined by your recovery. Don't let the things you need to do to manage your symptoms define you. Your altered diet, accommodations at work or school, or your medications should not define you any more than your illness should. For example, if exercise is important in maintaining your wellbeing, you don't want to be feeling like this is the only reason to exercise, you should be finding a type of exercise that you enjoy, so that this can be a part of your identity separate from illness or recovery.

How do you define recovery? How do you avoid being defined by your tools for recovery?

Today I'm going to share with you a talk which I thought was really cool. It showed a real understanding of how disability can affect someone's life, but also how it does not need to define one's life. Maysoon says she's not an "inspiration", perhaps by that she means that she doesn't use cliches and make every sentence deep and meaningful, but she is certainly inspirational in the way she has overcome barriers to achieve her goals.

What are your thoughts on this video?

I have two things to share with you today. The first is this article I discovered on facebook. http://www.viralnova.com/kyle-thompson-photography/ I think it is really cool how Kyle has managed to use his creativity to help him overcome some of his anxiety. He put his experience of illness into his work, and created something incredible out of it, which received an overwhelmingly positive response from the public.

The second thing I would like to share is this picture:

For one thing, this is incredibly cute. It also perfectly exemplifies what Beautiful Identities is about and brings up some really important ideas. You are so much more than your illness, you have an identity outside of your illness. You are not to blame. These are really important things to remember. If someone treats you badly as a consequence of stigma around some illnesses, remember that  this is their problem, not yours. (Also, I know it's a bit late for halloween, but today seemed like a good day to share)

I recently read an interesting quote, which got me thinking about identity in a slightly different way.

Life isn't about finding yourself. Life is about creating yourself. 


I thought this was interesting because I had always described work I do on my identity as a way of finding myself, but I think that creating myself is a much more accurate description.

Some events in your life are pre-determined, you have no control over them. But you have the freedom to create the identity you want. There will be parts in your identity that are beyond your control, such as your illness, but you can decide how you perceive these, and what other parts of your identity you include to balance out the negatives.

Think about your identity like a piece of art, of which you are the artist. You have control over how the artwork turns out, what is included, what is excluded, and how these things interact.

What does this quote mean to you? Do you treat your identity like a piece of art?

This is a question that everyone faces as they move through the various stages of their life. When you are unwell it can be easy to define yourself as "sick", "fatigued", "someone with depression, "someone with endometriosis" and so on. But this is not all there is to you.