From hobbies to emptiness....

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When it comes to myself, I personally never had hobbies that I have been truly passionate about. I never fitted into the hobbies category, that question has always rattled my brain and made me feel like I was never quite good at anything. When someone would ask me what I like to do for fun my mind instantly goes blank because all I've ever known is pain. I've always felt very self aware of my pain from a young age. Like I mentioned previously in my you don't look sick post, I never wanted to join in with many things because my body never felt able enough. I can remember skipping in the playground and having to stop after three skips from some kind of joint popping out. I always felt too frightened to be a kid and join in with many things. I used to look around at the other kids my age and see them excel in cross country, dance, gymnastics and only dream I could be as good as them.

I did however assume my passion would come later in life through working. From 13 I had in mind a career and attended a vocational course in hairdressing from a young age when I was able to go (I was usually sent home in tears with pain but tried my hardest). My pain has never let me find out what I enjoy as a person, I've always felt in too much pain to ever want to attempt to discover exciting things to try. I have since been able to accept that hairdressing isn't in my future and I am instead interested in the music industry, media, public relations and the management side of bands or artists.

Although I never figured out my own hobbies or interests I know that this topic may be a very hard adjustment for some with a chronic illness. I have had the pleasure of talking to people of similar age and the one thing they all had in common despite their different diagnosis was that they all mentioned some type of passion towards a hobby. I really feel for those with chronic pain when I read that they go from being incredibly gifted in their sports fields, football, gymnastics, volleyball, marathon runs to having interests in drama or dance but then suddenly having to instantly stop all of these outlets of happiness. Not only is trying to accept an illness a grieving process but I can only imagine loosing these sources of happiness that have been a fixture in a persons life can be even more distressing. Especially when you see everybody else your age being able to still participate.

These hobbies seemed to be what people had been a part of since they were incredibly young and I can only think of the reason they were able to achieve these goals was from determination and the possibility of their muscles being kept strong over a large period of years before the worst or peak of their illness hit. Those without chronic pain illnesses will probably think, "well if they did it once surely they can build their bodies up to do it again". We would all like to think that but the majority will not. Instead we will find ways of adaption and hopefully find out the things we can become to enjoy whilst being in pain, but it will be incredibly difficult. The last thing you want to do in pain is make it worse and a lot of the time people are not in the mood for these activities, especially finding the energy to attempt new things they might enjoy.

I imagined all of those people may be feeling robbed of happiness. I dread to think if I actually had something I enjoyed doing and I sympathise with those going through the transition of dreaming and reaching goals to being confined to their bed, wheelchairs or more simple lives in their homes. It can't be a simple transition at all and probably raises a lot of sadness when you think of it on multiple occasions. People are often left to deal with this sadness alone because it may not seem normal to express their upset over loss of hobbies. They may be forced to find other outlets of happiness by those around them as a replacement, but can it really make up for what was lost?

I use the term hobbies loosely for this post. It also applies to anything that a chronically ill person once enjoyed, being able to meet up with friends, independence, simple tasks, working, school. In a way we can still feel robbed of happiness when something feels like it is missing from our lives. I lose count over the amount of times I have cried in a week over feeling too confined to my bedroom walls because of pain or how difficult the simple things in life have become. For example, at 20, I don't accept help well from my mum when it comes to washing my hair because I feel I should be capable of doing it myself. Being chronically ill is like a loss of control in your life. I want to be seeing the world and making memories at this age and instead I feel stuck in a body that seems to be failing me. What I would give to not be able to think twice over very simple tasks.

In some chronic illness cases especially my own Ehlers Danlos Syndrome we eventually will come to terms with knowing our bodies won't be healing, getting better or improving enough for us to live a busy life with a busy schedule. We understand that in order to not deteriorate faster we can attempt ways of keeping our muscles in check but this is usually easier said than done ( one session of physio has left me in bed for three weeks from a minimum amount of exercise). There simply is just too much pain in every part of the body to feel you could function with a high pace life.

Although there may be occasions where we want to do things, they still are incredibly difficult and leave you feeling quite miserable with the repercussions.  The smallest thing or task I manage can often feel like an even bigger setback with extra pain to deal with afterwards. Sometimes these tasks are worth it and sometimes they are not, however you figure out what is worth the pain as an individual. It's all well and good having people encourage you to do things for your own sanity, it's not pleasant to be confined to a house for weeks on end. I am all for those types of people as long as they have your best interest at heart. However, there also needs to be a point where those people can acknowledge your pain levels and how much you may be struggling and accept that you can't manage it. It's up to the chronically ill person to decide what they can and cant manage and whether or not they are able to push themselves over a new hobby or outlet of happiness.

I have decided to list three outlets of happiness/things I enjoy below and hope that you can all make a mental note of yours to make them a priority in your life whilst you have pain.

I have decided these are the most important things to spend my limited energy on. These tasks are incredibly draining and painful at times ,but I feel they give me reasons to keep strong during my illness and all the setbacks that come with it;

 

 

Family and Friends - My immediate family visit my house every Saturday and we spend the afternoon together. Visiting distant family has become more difficult for us because of my pain so we try to limit the time I would spend travelling to them with them visiting me every now and then instead. I often get to see my god daughter every Saturday too, which makes me forget my pain for a minute or two.

My best friend also pops in to see me once a week for a catch up and just to keep my spirits up.

 

Writing - This doesn't always give me instant happiness but when I get feedback from my blog it makes me overwhelmed and relieved. To know someone may be feeling the same or is in a similar situation to myself has helped me in my own journey. Writing is also playing a huge part in accepting my illness as well as forcing myself to put these things online to try and help others in the hopes they don't feel alone. 

 

Concerts - My Best Friend likes to get me out the house every now and then to go to see concerts of our favourite artists. The first concert I atended was when I was 4, it was the Spice Girls at Wembley in 1999. This was always a hobby I really enjoyed. I know that this brings my friend happiness too and I didn't want to let her down by no longer going because of pain. For the last year I  have been trying a new technique to find a balance of still being able to attend the shows I like, but with a little more comfort in my wheelchair.  

Education - I am someone who likes to feel like they are working towards a goal and achieving. In chronic illness, this is something that doesn't happen often. I am guilty of never giving myself credit for the small things I manage, because they never seem big enough to be proud over. I sat my school exams at home because I was bed ridden and it made me feel so angry that I couldn't continue education or attend college. It's only since leaving school and having much emptiness in my life to sit and reflect that I have discovered what kind of job I would like to work towards in the future. Because of illness, it's obviously hard to know whether you are able to hold down a job, however education doesn't need to be on hold even if attending university is out of the question. I enjoy studying a new field, receiving a diploma and being able to keep my mind active. It's nice to feel like you can achieve academics from bed too! I hope to gain my qualifications and eventually, a degree from home whilst housebound.