Chronically ill

Hello again,

Whilst I am in the confines of my bedroom, recovering from yet another cold (again?!) I thought I would write about being 'Chronically ill'.

Most of you probably have no idea what those words mean, and who can blame you. At first they seemed rather daunting and scary to me, but you get used to the turmoil that is your life.

Whether you only experience the pain a little bit. Or it hits you everyday like an atomic bomb. Being Chronically ill means I have to explain often why I cannot be somewhere or do something.

Let me explain:

Say for example I need to go to college for an entire week, but a friend wants to catch up afterwards this would cause chaos. College is a six hour day, if not longer, so naturally anyone will be tired. However, for me I am already depleted in resources when it comes to energy. If that friend wanted to see me for an extra two hours after I have finished my studies, this can wreak havoc with my brain and body for a few reasons.

A) Due to previous cancer treatment my body is what I like to call a 'Catastrophe'. It is so damaged on the inside you would not see the affects on the outside. Even doctors are still puzzled by me. I am known as a "Rare and mysterious case".

B) In turn, later life side-affects come into play. Whether that is muscular problems or renal infections my body does not know how to cope with problems. Let alone my brain...

C) So after being diagnosed with side-affects from the copious amount of treatment I had, that left its mark, I am now weaker on average than your 'normal' female.

D) I cannot walk as far as I would like to, due to: Tachycardia, Chronic Joint pain, Chronic Fatigue (also does not help I have insomnia) and just general pain.

If you have no idea what any of those words mean let me guide you on a boat tour of my body.

Firstly, my Tachycardia is the most prominent issue I have. The full diagnosis is called Postural orthostatic Tachycardia Syndrome (PoTS) and this is how it affects me: When an able-bodied person stands up their blood vessels (Veins) contract and expand, pushing the oxygenated blood around their body. However, when I stand up my blood vessels forget to do so, meaning the blood pools in areas of my body (legs mainly) meaning I become faint and dizzy. This then leads to my brain screaming for more blood and making my body hurt until I either sit down or faint (I know weird right?). My legs become purple in colour and my face goes sheet white. I have to catch my body in time before I black out.

Believe me when I say this people will usually say to me: "Oh I get that sometimes.". This will usually cause me to get angry, because while yes you can get a 'little' light headed, or dizzy when you stand up, sometimes these people do not have the diagnosis I have. So naturally I retreat and say: "Oh okay. Do you faint nearly everyday? Have you got to drink your entire body weight in water? Have you ever laid down with your legs elevated In public areas in-front of strangers and friends? To then be told 'Oh that is embarrassing, I am glad I am not like that.'."

I know that people that know me will probably understand the extent I got to planning days at college, as I am psychologically mapping out every area that is vacant in case of an emergency.

The next illness is my Chronic Fatigue Syndrome! It is really as basic as it sounds. My fatigue with play havoc with all of my other illnesses on a day-to-day basis. And I will usually get told by professionals: "You are confusing Fatigue with Tiredness. Get more sleep. Try to relax.".

Tiredness is the feeling you get from not getting enough sleep or doing too much during the day/night. Every human gets it. However, the difference in Fatigue is that it affects the rest of your body.

To put in perspective I will usually go to bed at 8pm, take my medicine and get to sleep around 9pm. The next day I will wake up after 11 hours of sleep, if not less due to that lovely Insomnia, barely eat (another problem thanks to chemo), take over seven tablets (covers all the problems I have), then work my backside off for six hours (I do not show it, but I am always tired and aching), after I head home and sleep my day off for two hours, take more medication and then finish my night after revision and eating.

After all of that I feel no different to when I started the day. I do not need more sleep. I do not need to eat or drink more. I do not need to take less medication (If you ever say that you have my family to answer to). This is how I exist. Just fatigued and sore. I may look like I am having a good time, but usually this is not how it seems. The Fatigue I have messes with my memory, meaning I am not what I appear to be all the time. I have to constantly revise, until I cry (true story), because believe it or not I can forget everything by the next day.

Memory loss is confusing and heart-breaking, because I will usually forget important details and feel embarrassed by it. I have even forgotten that I celebrated my Mum's birthday this year. It causes havoc with my mental health and it can be pain to deal with people who think my life is easier than it looks.

The joys of memory loss caused by Chemotherapy. Thanks for the brain damage friend!

The last problem I will discuss ties in with the last one, it is called Chronic Joint Pain. Chronic Joint Pain is where my body will cause my joints to inflame, or cause my bones to ache horrendously, or for my muscles to tense up and refuse to work. The pain I receive from having this illness is traumatic. I can sometimes lay in bed for days recovering from one days worth of physical exercise, and taking very strong medication to get over it. I know that many people have told me:

"You are faking the pain."

"Why are you in a wheelchair? You were fine the last time I saw you."

"You look so healthy. I just think you are overthink it."

"You do not look that tired."

"How did you just get pain? Can't you just take something to make it go away?"

The list of ignorance is endless and I have been on public transport numerous times where people have stared at me, pushed into my wheelchair deliberately, ignored me or had the audacity to ask me "Why am I in a wheelchair?". These comments really hurt on a daily basis, because if I am in a wheelchair it is highly unlikely it is a fashion statement. It makes me feel terrified and alone, due to fact I will probably not get much better in the long run.

However, my wheelchair is very cool as when I go down hills/ramps I do not use my brakes. It scares the hell out of my parents, but it is fun to do.

All of these illnesses will probably never get better for me, due to the fact I am not a very 'able-bodied' person. There is unfortunately no cure for any of these things for me, because of the treatment I had has caused too much damage to my organs. Ironic really..

However, being cooped up in your house for weeks on end does make you appreciate the small things. Such as:

Vinyl Records. I received a record player for Christmas a few years ago and was lucky enough to start a Vinyl Record collection straight away. Thanks to this I can now listen to music the old-fashioned way and I love it. I do not know whether due to my deafness I appreciate little sounds more, but every time I hear a record I fall in love with the scratches and sound quality.

Art. Art has been a big part of my life since I was in treatment. I still have pictures of me with no hair and paint all over me. My Dad has told me numerous times I got paint everywhere in the ward room. So since then my love of art has grown, along with different side-affects. Any type of Art (water colour, sketches, etc) distracts me from the world I live in and I get very intensely involved until I am happy with the final piece.

Reading. During treatment I had to re-learn my life skills over again. I had to learn to walk, eat, drink and speak again for the second time in my life. This then transpired to affect my learning development by having deafness, reading difficulties and speech therapy. These things made me appreciate how far I have come, and it also made me fall in love with reading books. If you hand me practically any book I will probably finish it in under a day.

Binging TV. If you like watching TV then I am your girl. I have been known to binge TV constantly until the sun goes down. My list of series I have finished is endless and I always get excited for new shows to come out that I can spend my time on.

I know that if I am not going to get better any time soon, I will have to come up with ways to exist in my own world. Whether that means avoiding public areas due to low immunity or accepting that I am sick and that is okay. I barely feel okay most of the time, but little things cheer me up and it can make my day.

Walking around with a cane at the age of sixteen is enough to question people, to me it is my normal.

Having a wheelchair can seem obstructive, but unless you get in my way I will avoid you.

Wearing Hearing Aids may not look cool, but when you bore me I can just totally ignore you (did it in class once, my tutor thought it was a good idea).

Taking endless streams of medication is just my way of telling my body "You'll be okay once you digest these.".

Being bed-bound is just my normal and sometimes I have to miss out to enjoy small parts of life.

Planning my day to death is what I have to do, to remember and survive.

None of these things are new for me. It is just my life. I know when I meet people who are like me we both tend to freak out over how happy we are to have met (it is the equivalent of winning the lottery).

I may not be able-bodied or healthy, but I am fine with myself and existing in my own little world for now.

Molly-Tastic Treves