People see us on our better days and think is all is well, the smile is painted on and you cling to walls as support. It isn't that we aren't happy or even thankful that people think we are well. Often it's a MASSIVE relief because it has taken a good three hours to reach this point where I seem to be 'functioning' and a normal human being.
It is very easy to fall into the trap of giving in to your thoughts and feelings. That this disease has made you ugly, you deserve to live in isolation because you can't socialise as the normal person would, you can't dress like you would wish too - always fearful of being cold, showing too much ugly skin and being unable to control core body temperature.
We all have days where we are guilty of allowing these fears and anxieties take over us and control our actions. Often when we are too fatigued or bogged down with a number of symptoms.
I struggle mostly with what this disease has caused me to learn to accept. I may laugh off a lot of pain and seem to be 'coping' with my circumstances and mostly I am. I am FAR STRONGER that I was six months ago ( mentally ) let alone a year a go. I do still have rubbish days however, I am quiet because I am exhausted - exhausted from the constant war and battles going on inside of me. I am drained and some days I have done well to just get up without any tasks or even getting dressed to be placed on top of that. Often in the morning I lie, feeling stiff, almost frozen, throbbing in pain. I question all the tasks I have to do and if I can even face them. A good pep talk and I pull myself out of bed often going dizzy and wishing I hadn't of moved but deep down KNOWING that is what the disease wants and I can't allow it to win. I have the days where feel ugly, unlovable and I even tell myself I am a bad person because sometimes you do feel a waste of space - you can barely do anything, how is that pulling your weight and giving back to society?
I forget that I should be proud of JUST GETTING UP and that despite the pain and disease trying to keep me frozen and tied to my bed. I fight against the forces. I must remember I always choose the harder option and for that I should be proud. I may at times feel ugly, unlovable and boring but that is just my mind struggling to deal with the circumstances, the flare in symptoms and the tough life we all live in. I have to have hope and trust fate.
Somehow my strength saves me at times when I believe it could be end. I do have a big heart and always give everyone my all, which many can't say they do. Perfection is a myth.. even if I was fully fit and well I would stick nick-pick on things and parts of myself I disliked. My disease is a lot for people to handle, accept and live with but fate has my back and I must believe in it. I have to believe that all the times I have felt like it is the end somehow I come fighting back. The days I feel I lack purpose I have to remind myself that fate obviously still wants and needs me on this Earth. It has gifted me time and a tough journey to make me into the person I am today. It may be world's away from the life and person I believed I would become but in a lot of respects it has made me into a far stronger and better person.
I have learnt tough lessons, felt pain that goes off the chart, fought feelings and thoughts to piece back broken glass. I forget all the things that I can bring to the world.
I have made it my MISSION to leave deep footprints and have made a big difference in life before I leave. My passion is to bring love, joy and happiness to others to help heal and soothe and my own pain and almost make my pain justified.
I may not be the life and soul of the party, out drinking an clubbing all weekend. I spend my time, campaigning, emailing endlessly, offering support to fellow sufferers, spending time with family, pushing myself, blogging, seeing friends for coffee and that is ok. That is how I choose to spend my time. It is positive, proactive and production.
I have studied the Great's; how they dealt with pain, tough roads, how they spoke, wrote and how they made a difference that still to this day people enjoy to read up on. That is what is important to me. Knowledge is power and there is always more learning to do, self-improvement to do and of course if you give your heart to everything, every fight, yourself and others - nothing more can be asked of you.
Our bad days are allowed, we deserve a good cry and a moan with our pain levels. We are allowed to doubt fate and the life tests we are faced with but we can't allow fears take over. We are stronger than we believe and we have to be open-minded and embrace challenges as they appear.
We have to smile, give love and be the best person we can be. Get up, get dressed and make the best of our time. Some days that may be resting and others it may be working like a headless chicken on a number of projects...
You are here - that is worth gold.
You are loved and adored and that is what keeps you fighting because the love and supports reignite the fire within when its about to burn out.
The tough days are beyond words TOUGH but the amazing days are out of this world - special.
And in the end we may try to look good through all the whole journey, to prove to ourselves how strong we are for not giving up and giving in.