This post isn't about pain, there is no changing how bad that may become or is progressing. It's about unnecessary worrying and stressing for days which haven't yet arrived. Something that I did pretty much everyday and many of you may do whilst living with chronic illness. Inevitably, Pain can give you fear, no question about it, yet thinking up situations that are yet to arrive can also make you convince yourself of things that nobody can predict. Usually, these can be quite negative thought patterns. We create a terrible image in our head of the worst case scenarios of what life has the potential to be like, when really, why is it so hard for us to spin this into a positive light. It becomes easier to thin so negatively because we can't see the hope in our lives.
The fear of being a failure in my one chance at life is actually more distressing to me than my actual illness. I am starting to finally see I have slightly progressed as a person even though my health is sadly, no better. I used to cry everyday for hours on end over pain when I felt like I had no one to relate to. That would snowball into negative thinking patterns about life in general because it just felt so isolating and abnormal. That would the cause a domino effect, rapidly changing my mood, impacting how low I would become in minutes then leaving an imprint for the rest of that day. This would even roll into the next day at my lowest points with illness. It was a never ending cycle. But now, I try not to let those thoughts or situations drag me in or consume me as much as they once did. At times it was almost like mental torture, as I'm sure it becomes for many others in similar circumstances.
I'm not saying I still don't have my off days during the week where my thinking pattern will shift back to old habits, we all have our down days, but the frequency has definitely and thankfully shrunk (I used to have panic attacks over 15 times a day at one point). I don't make myself feel bad for those days either like I once did, I try to accept them for what they are. A bad day rather than a bad week. On those really bad days, which can be pretty difficult and intense to process, I now sit and try to analyse rationally in the best way I can why I may be feeling so low. Am I just feeling down, low or angry at chronic illness life or is pain the main instigator today. Sometimes I am annoyed at life in general, everyone is guilty of that ill or not and we are all worthy of those feelings. It's definitely a working progress and daily battle to overcome.
Yes I can worry and stress out a lot of the time over my illness but I don't want it to define me as a person. I don't want it to define the things I can and can't do as a person either despite the obvious and at times, upsetting obstacles it may bring (controlling pain, wheelchair, limited energy, isolation, separation). Those obstacles at times can feel like absolute mountains and therefore very difficult and overwhelming to climb. I certainly don't want disability to rob and drain me of happiness everyday and I really don't want it to stop my goals in life. It is just a shame that because of health issue those goals that any normal person my age has in mind, may seem to be much more limited and harder to attain because of my limits.
Another thing I am working on as a person is not setting myself up to fail in those 'achievement goals' either (yes I can finally accept that I wont be a spice girl, damn). I used to think in order to be achieving you had to be doing amazing things with you life. Whereas when you are in chronic pain and have an illness an achievement can come in setting such a small goal or even getting through a tough day of pain. For instance, having someone round for a few hours, being able to have more up time out of bed during the day, finding some energy to study an educational course from home, taking a rare trip out on a day where pain feels too much to comprehend. Those are just some things those of you reading this post might not be giving yourself enough credit for. We have to remember, our bodies are sadly not normal and these smaller goals are a big deal to people like us! Rather than beat ourselves up everyday over the things we cant do, we should try and tell ourselves, actually well done.
Day to day achieving and living. It's not easy at all, its actually quite distressing but we can't keep being dragged down by something currently out of our control. There is no magic wand or magic pill for this illness or many other rare conditions, I wish there was. I can't replace the faulty gene that is taking over my body.
I look forward to being able to feel some growth and improvement on how I am learning to accept my illness. I have definitely been proved wrong in now seeing that even when your health, illness or pain may deteriorate your mind can become even more stronger than you ever believed when you least expect it. You feel you are stuck at times, but being reassured you are not the only person your age going through something so abnormal is a worthwhile feeling. It's hard to imagine life or your outlook becoming more accepting when illness or pain is progressing in your everyday life, but it can be a possibility for all of us.
Despite the amount of pain that comes with Ehlers Danlos Syndrome, POTS and my other illnesses and how frustrating they feel at times, it's a life. It's not the most ideal life for a young person or any person of any age in fact, but it is a life which is a lot more than some can say. I hope that for those reading this, despite your own diagnosis, you can start to see it like this at some point too.