Monday 2 July 2018

GUEST POST by Rachael - living with chronic illnesses

Hi, Im Rachael, 21 years old 'living' with multiple chronic illnesses. 

"The ocean holds her, cradles her in its tides and she is motioned by the moon to feel a bit more pain, feel a few more salted wounds before receding back into her grace." - Joe Straynge.

I love how this poem understands the way chronic illness can take control of your whole being yet as one rides it through you can witness pure grace, strength and growth.
In no way, shape or form would I glamorise chronic illness. Its not pretty, nor is it dignity. Often its no way to have to live, but I find this poem acknowledges that sometimes even in the darkest of times, something positive can come from it.

In 2011 at the age of 14 I was diagnosed with Complex Regional Pain Syndrome down my right side and after emergency surgery - for unrelated complications still under investigation, it spread across my whole body. Unlike many I do not have an explanation as to why my CRPS developed.

I am a part time wheelchair user and despite what people would assume it does not make things much easier. I still feel all the vibrations from surfaces, every push pull turn and temperature change. Not only this but it's hell to find decently accessible areas! My chair is manual so due to cramping, weakness and fatigue someone pushes me. Don't get me wrong its great to have it for the rare times that I leave the house but it really does cause anxieties and often a flare just as bad as if I was to walk.

I have had to teach myself how to walk, talk and write several times over the years and faced intense bullying from students, 'friends' and staff in education and workplace. Due to processing difficulties and previous events through mental health I am unable to manage my own medication. When I have the energy and ability to withstand the extra pain of water beating on my sensitive skin I often have to be washed by a family member. Then expect a long day ahead as that uses most of my energy up. Something most fail to realise.

After countless admissions, issues with my heart stopping followed by frequent hour long fits, my knees elbows and wrists popping out of place and locking, severe memory loss,30 pills a day, sudden paralysis from my waist down lasting days or weeks at a time, intense fatigue, insomnia, inability to continue university, work or drive, unbearable sensory overloads and severe weight loss after another surgery I was directed to a 'CRPS Specialist' in Plymouth, UK for the end of 2017. GREAT! 

He turned out not a specialist in CRPS but (!) he is the only one in 7yrs who has demonstrated an acceptable amount of knowledge! He listens, gets treatments moving for me and above all BELIEVES ME. No more blaming my pain on 'growth' or 'stress'!

He was also the one who diagnosed me with further debilitating and limiting conditions which I'm unfortunately deteriorating with currently; Dysautonomia including Postural Tachycardia Syndrome (POTS), Orthostatic intolerance, Dissociative attacks, Subluxations, Polyarthralgia, Depression, Anxiety, Chronic Sleep Deprivation, Patellofemoral Pain syndrome and others, such as GI symptoms, which are still under investigation.

Great to have answers but at 21 I am unable to leave the house alone and I cannot be left home alone for long. I've gone from competing highly across the country for rowing and swimming and performing on stage for fun to not a whole lot.

POTS makes it incredibly difficult to remain safely upright for a period of time and due to GI issues I am unable to consume any item of food or drink without being in agonising pain and looking like I'm about to give birth through horrendous bloating. Hense why food intake has been reduced and I've lost a substantial amount of weight.

Unfortunately all my illnesses can trigger one another and stress/low morale makes them so much worse. I am living in a harsh limbo and a viscous cycle but am trying to accept that despite being bed bound more often than not and questioning daily what strength I have to go on, I am a warrior.

I passed school with 13 A*-Cs, I completed college with triple distinction * on one course and 11/11 A* for another and was passing university with flying colours before I had to quit. I managed all this whilst suffering chronic illness. I may have a different route to take now- whatever that's going to be - and I often feel like I'm falling behind as I cannot do anything independently but we must remember that life has no set time scale and we can complete what we desire in our own timeline. When it is best for US as HEALTH COMES FIRST. Most importantly we know our bodies better than anyone else, so listen to it. Know that it is real and what you are feeling is valid. I want to use my negative experiences for positive by helping others as much as I can. I don't want others to be so isolated if it can be helped!

Thank you Naomi, for offering to share my story to create awareness. I really appreciate it as others ignorance really is the hardest part to deal with!
If only one thing is taken from this post, please let it be that you cannot judge somebody's reality, illness or life by one photo. Things can change so very quickly.

Thank you for reading and always remember, in unity there is strength!