My name is Alana. I am 30 years old. I have a wicked sense of humour and I’m relatively intelligent. I am a great friend, a good listener and very protective over the ones I love. I am a singer/songwriter and who has modelled in the past. You would think I had the world at my feet wouldn’t you?
There is just one thing I haven’t mentioned…. I am chronically ill.
I was diagnosed 15 years ago with Crohns disease or IBD (Inflammatory Bowel Disease) as it’s known. I almost died from complications when I was 19 and spent 2 months in intensive care which left me with an ileostomy bag for 1 year. 3 Years ago after many years of suffering from it, I was diagnosed with Fibromyalgia Syndrome, a complicated widespread illness that affects many parts of the body. I also have clinical depression and borderline personality disorder, although it was suspected for a long time that I had Bipolar Disorder. This has a whole different list of symptoms in itself which makes life and my physical illness 10 times harder.
Every day I wake up to pain, sickness, depression, extreme fatigue, major bowel problems and last but certainly not least, boredom. As far as appearance goes, which is the lesser of all the evils but definitely not any less demeaning, my hair falls out/ my skin has sores and I look exceptionally pale. With the nature of my illness most jobs aren’t applicable for me which is actually the source of most of my frustration as I feel extremely cut off from the rest of the world, financially unstable and little hope for that to change. I am naturally very independent, so the fact I am so dependent on the state and my family is one of the most testing elements of it all. For all these reasons, I spend a lot of time alone which only leads to loneliness.
I was always intensely ambitious. Like a lot of people, I had a lot of aspirations for my life. I was singing with a 3 piece band in Belfast which I absolutely loved. I even got through televised auditions in London for the Andrew Lloyd Webber’s musical for the Sound of Music as one of 200 hopefuls out of thousands of applicants. I also had an opportunity to succeed at my other passion and train to be a veterinary nurse whilst having a full time job in this field at the same time. All this came to an end 3 years ago and I’ve felt like a failure ever since. I had a wonderful future ahead of me and its hurts me terribly to think of where I could be right now.
It hurts deeply to think that I am unable to fulfil the dreams I once had for myself. I miss getting up and getting ready for work and feeling ready to take on the tasks expected of me with zest and competence. I pine after a social life and feeling like I was an important part of society and someone people liked to have around. I was always able to make people laugh and enjoy themselves and I miss being able to say that I make people happy as it feels like I am a drain of peoples energy because I am so down most of the time.
I had lots of friends in many different circles, I loved meeting new people and I was so outgoing and care free. My mum used to call me her social butterfly. Most of those friends gradually fell away from me as I am no longer able to do the things they can and I suppose there is not much in common now. I have also lost relationships due to my illnesses, which is probably what affects me the most as moving on is so much more difficult because I can’t go out and get myself my own life. All of the above does hurt me greatly, however I try to concentrate on the people I do have in my life as opposed to the people I don’t.
The lack of energy controls my life more than I can describe. Even after hours of sleep I wake up exhausted and depleted of all enthusiasm. I find it almost impossible at times to think properly as part of my illness causes a symptom called “Fibro Fog”. So reading, writing/ typing, organising or anything you require your mind for, are sometimes out of the question. The only option at times like this is to rest on the sofa and watch TV, which gets incredibly monotonous and kills your thinking even further. The muscular fatigue can get so bad, it feels like an elephant is sitting on my chest making my body feel like lead and causing my diaphragm to become really tight and difficult to breathe. Even lifting a coffee cup is exasperating at times.
The pain comes in many different forms. Sharp, stabbing, cramping, acute, deep tissue, burning or aching, all varying in intensity from one hour to the next. This is also from head to toe. You can imagine how bleak my outlook feels at times.
My family worry endlessly about me so I hide a lot of my problems and symptoms from them as I hate the fact I bring so much pain on them. I would love nothing more than to help them with their own life worries, which I try to do as best I can.
It’s not all doom and gloom however, I have gained a lot of positives since these illnesses have taken over my life that I probably wouldn’t have if they hadn’t. I appreciate those good days so much more. I probably do far too much when I feel ok as it’s been so long prior to then, that I have felt able to do the things I want to. They are few and far between but they do happen, so I hope and pray every day that the next day will be one of them. I am a very understanding person now of other peoples’ personal problems and I am totally unbiased and non judgemental as I’ve learned from my own hardships what is hard for one person may not be had for another and others don’t always appreciate how much something affects you. For this reason, a lot of people do come to me for help and advice which I am always more than happy to give. I have also been given the knowledge of who the people are in my life that genuinely love and care about me which means I can focus on them instead of giving those who don’t the attention they don’t deserve.
I hope from my story that you may give those people you meet in your life that have debilitating illnesses a bit more understanding, appreciation and try to help them whatever way you personally can. See them as people the same as yourself that just have daily and sometimes hourly difficulties that affect their lives in ways they have no control. See them as warriors, full time soldiers of adversity. If they are your friend or family member, help them see their strengths and positives. Look out for the things they need that they may not say they do as they are afraid to burden you. Remind them that they are loved not only for their illness but for themselves. Don’t put too much emphasis on their illness but also make them aware that you consider it in each accomplishment they achieve which may be small to you but to them is huge. Understand that they do not want to be this way, it is nothing less than an infirmity.
Of course, this blog does not cover everything a person with illness faces in their lives, it really only covers the tip of the iceberg. So please be mindful that there are things you may never know but if you keep an open mind you will help those who need it.
As well as my family and friends, my faith has got me through the valley and I’m halfway to the mountaintop. Triumph over misfortune and all that, but I give all the glory to Him who owns and deserves it. The Alpha and Omega, Jesus Christ 🙂
This concludes my first blog. Thank you so much for reading. Take care of your health and of yourselves 🙂
Alana xxx…. Isaiah 41v13