Saturday, 8 March 2014

The Power Of Connecting With Others In Chronic Pain


I recently celebrated my 20th birthday and in my previous post I mentioned how I have never quite enjoyed "special occasions" since becoming chronically ill. In fact I absolutely dread special occasions and feel extreme panic for many weeks in advance. I very wrongly, cannot wait for the day to come and go and I try to avoid talking or thinking about the upcoming occasion. Strangely, I used to be THAT annoying child who would start my birthday countdown from the New Year! How times have changed. This year however, I was really quite shocked myself in how I handled my birthday. The day in fact turned out to be a birthday that I managed to cope with pretty well, in terms of how I felt in my mindset. I seemed to have taken a different approach to the day and I instantly knew why.

I had been awake all through the night on the eve of my birthday with really intense and unwanted pains. I felt my self beginning to stress over my birthday, believing it had the ability to be just like the previous years before. I knew the drill all too well. I would wake up, feel intense pain like always, analyse how my life had changed in a year, how I had only got worse and how different I feel to other people my age, then spend the day really crying no matter how hard my parents would have tried to make the day really special. The day would be a write off before it had even began because of my illness. I have infact spent every birthday bed bound from the age of twelve.

It may sound strange, but at five a.m after no sleep whatsoever, I felt like had a breakthrough. I knew I was going to be in lots of pain when I finally woke from a short sleep, even more so than previous years because of my ongoing illness. However, I told myself I would try to take the day with a pinch of salt and attempt to push my concerns out of my mind for a few hours. Your birthday only rolls round once a year.

One of my main concerns is that people will always think I am ungrateful because of how down I feel on these occasions. How can I expect others to feel happy and joyous for me on my birthday when I cant even think straight or feel present from the amount of pain I am in? So like I predicted, I woke up in more pain than any of my previous birthdays but felt an unusual sense of calmness. Now a lot of you may think I am completely rambling here considering the title of this post doesn't even involve the word birthday, but bare with me here.

I truly believe I got through this birthday so much better than any other because I no longer feel as alone or isolated in my journey with chronic illness. The reason I don't feel alone is because of my blog. It has opened so many doors for me in regards of speaking to others in spookily similar pain experience's, EDS sufferers, POTS sufferers, Fibro sufferers, chronic pain sufferers and just even being able to experience how everyone is there for each other whilst going through such a difficult time themselves. That was the wake up call I had been searching for for a long time. Seeing how kind and helpful everybody is on my twitter feed, whether it be offering advice on how to deal with pain, to helpful techniques and tips, to being open and honest of their own pain is really so helpful and has started to lift my cloud of isolation I felt for many, many years. My depression stemmed from my illness is still very much around, but I can now see such a difference in whether I'm feeling depressed over illness and its controlling debilitating pain compared to whether I'm feeling depressed over feeling isolated and abnormal.

For so many years, I have compared myself to friends and family in my age range who are in a completely different situation in life. I would always compare myself to them and how I felt I could not achieve anything of the levels they were. Being chronically ill means I barely leave the house, lead a restricted life and am in intense pain on a daily basis. I've never in my life met a young person going through this too who would just instantly get it and be in the same boat as me. I have friends at college, friends in full time work, a cousin who is now a mum, a little cousin who is an aspiring footballer, a brother who is a manger of a department of transport. Basically I have many people around me who are making a success of their lives that it always made me think, well why is my life not letting me achieve in ways like them. I never felt jealous, I just never could understand why I couldn't make something of my life and seemed to be stuck in a disabled body. I felt like I had nobody around me that really, truly understood how difficult it is trying to cope with being chronically ill whilst being so young. Nobody to really talk to.

I'll be honest. I started this blog in July of last year in a bid of desperation. I had only ever spoken to one person with EDS in the three years I had been diagnosed. I signed up to an EDS forum and spoke to a wonderful girl my age who was so positive. She gave me the initial boost and hope that there was some young people out there with EDS and chronic pain. But the novelty soon wore off and I felt more alone than ever for 2 and a half years. More hospital appointments, more tests and more reasons for me to feel even more different and abnormal to everyone around me as my life became even more limited. Looking back, I almost panic in worry of how I ever dealt with my chronic illness alone for a lot of my teens. That isolation was causing me so many panic attacks everyday that I wouldn't wish it on anyone. I've always had my mum and dad as support but there is only so much they will ever understand and that I would tell them, I didn't want to worry them anymore than what they already feeling over my health. Unless you have a chronic illness, you will never know how much pain and life disturbance it can bring you.

What I am trying to say is that talking to others in similar illness related situations, whether its been EDS or similar chronic pain conditions, has helped my mind set more than any medication or pain management programme will/ has ever done. Just reading about mirrored symptoms, lifestyles and pain can make you feel not so alone on your worst days. Those people have also given me a boost in moments of despair, I remember them and I don't feel as alone, which personally for me is such a huge step. I almost wish I would've started this blog years ago! I have been emailed by some wonderful people who have been so open in their own experiences and keep in regular contact with them. I have made an amazing friend who I speak to everyday who has really helped me so much! Finally somebody who I can compare myself to on a scale that no longer makes me sad but relieved that I am not alone. It really has lifted such a weight off my shoulders on my worst days. I know my pain is getting worse and increases as the months pass, yet I don't feel the fear as often as I once felt of going through it alone. I know I will now always have somebody to talk to and somebody who just gets it! No desperate attempts of trying to explain a pain, symptom or why I can't do something like a typical girl my age.


My goal is to continue to raise awareness for Ehlers Danlos Syndrome, Postoral Orthostatic Tachycardia Syndrome & I hope people who may read this can relate to my journey. If you are dealing with a chronic illness please don't attempt to go through it alone. There are lots of medical forums and online support groups that my mum signed up to years ago that are a wealth of information, (by all means, if you are too young, get your parents consent or ask if they will agree to signing up). My mum gets sent daily newsletters on EDS/Chronic Pain related topics and now I am old enough I am signed up to them too. These are really helpful regarding doctors, pain, and all aspects of life with poor health.


EDNF Ehlers Danlos National Foundation - http://www.ednf.org/

Ehlers Danlos - http://www.ehlers-danlos.org/forum/

HMSA Charity - http://hypermobility.org/

Inspire EDS - http://www.inspire.com/groups/ehlers-danlos-national-foundation/


Thank you once again for taking the time to read this post. I hope that others out there can take some comfort from this and know that you are not alone in your pain and fears.





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