Friday, 5 July 2013

What have you achieved?

 
Last night I had a teary chat with my mum over how I feel Ehlers Danlos Syndrome has robbed me of my teen years. This is often something I quietly think to myself but never really express to anyone but my mum, occasionally.  I have a constant worry over my illness in the back of mind and feel like it often comes before my happiness at times. By "robbed" I mean being unable to be doing normal teenage things that people of that age probably take for granted . Doing all things fun and being carefree. This definitely may be an obstacle for adults who feel worlds apart to others their age when they have a chronic illness too.
 
I probably have to spend 95% of my week indoors, in bed and just feeling generally rubbish and ill as I have done for the past 4 years. The only bit of day light I see is when I go down to the garden or look out the window. Now, I know that this is very isolating in itself and people might judge me and think I'm not helping myself (as I said, always one to worry over what others are thinking) but I'm trying to be as honest as I can with my chronic illness blog and wouldn't want to lie in saying I go out lots because I really don't. But I feel like at this moment in time, for me it cant be helped. It is even a struggle to get out of bed in the mornings and go to the bathroom to get ready for the 'day' after maximum 2 and half hours of sleep from being up all night with pain. 

Like most people I am really tough on myself. And when you lead a limited life from a situation you can't control you are probably more tough and angry on yourself. Especially in feeling like you are lacking at any achievement. I am guilty of constantly doing the 'friend comparison'. My three best friends who are all the same age as myself have done very well over the last year, 
one has started her first job, another has just become a qualified beauty therapist after training for three years at a college I once attended too, and the final one is at a college for music and arts.
I am so proud of my three friends in everyway possible and love them to death but it is very hard seeing how their lives are transitioning and mine keeps slipping further backwards as I get older. It's something that frightens me in large amounts, I have a fear I will never progress. I have felt like a failure for many years, and even more so when I compare myself to people I know or aspire to be like. It is scary thinking of what the future holds for anyone, but when you are living in pain or with a disabling chronic illness, its even scarier.

I saw something on Tumblr (love abit of tumblr browsing) at the end of last year which was a picture and I have thought about it a lot since. The picture was a note of what was on someone's year bucketlist, and was along the lines of;
 "Write down everything fun you did this year, put it in a box and reveal at the end of the year some of your best memories"
For a while I thought to myself 'I wisssssh, I don't get out enough to even complete a weeks worth of fun things!'. But its only this week that I thought maybe us spoonies could put a bit of a twist on this. Instead of basing it around everything fun we have done (which by all means can also be included), we should also base it around all the things we are proud we have achieved. To the people outside of the chronic pain circle it may not look like a lot. However, with all the pain we experience on a daily basis and the hard times we may go through, we may forget that the little things we manage to do, we actually don't give ourselves enough credit for. I need full convincing myself most days over this prospect of 'the little things we manage'. It is usually only my parents who remind me that anything can be a huge achievement for someone who struggles to get through a day with chronic pain. I go in and out of believing I've achieved something to be proud of, but I want us to start encouraging each other knowing that we all live with chronic pain and can relate to how difficult our worst or terrible days can be.

So, here are the things I feel I have achieved over the last year;

  1. Driving lessons, theory, and test - I knew that this aspect would make my life easier, especially in the sense of getting from A to B. I put off learning for a long time, but was so happy when I passed my test first time.
  2. Attended a 2 week residential Pain Management Programme- The hardest thing I've ever done in my life. I still cant believe I even got through it and that I survived. 
  3. A home study diploma course - I wanted to get some further qualifications from home and am plodding my way through this course one day at a time and achieving good results.  
  4. Attended a few concerts - My favourite thing to do in the world is escape in a 2 hour live concert. In my perfect world there would be one everyday of the week.  
  5. A planned day of shopping on my best friends birthday - As I said planning a day scares me because I know my pain will probably be overwhelming. I was happy I spent a special day with her. 
  6. Getting through a day without crying - May sound silly, but I am a very emotional person and like a good cry when I have a tough day of pain. It's my release and when I go without this, I feel proud.
  7. Learning to talk more about my illness - Last week I could never had started a blog about my illness and how I was feeling. I am so overwhelmed by the positive feedback, page views and support from twitter and fellow EDSers from all around the world who have spent time reading any of my posts.
So on that note everyone, try making your little notes of achievements and keeping them safe to get out at the end of the year or maybe every 6 months to prove just how well yo we doing. Instead of looking at what you haven't done, look at what you have, and BE PROUD.
I'm going to try and take some of my own advice too, and give myself a bit of credit every now and then .

What's been your greatest achievements of the year?


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