The End

Yes, you read correctly; the cryptic title means that I have decided not to post any more blog entries. Due to lack of any interaction or response by readers to my recent entries, yet the countless views per post, I don’t feel comfortable letting people in to read the struggles and sacrifices I go through just to feel that they are being disregarded. I don’t receive any support, sympathy or the reassurance I need from you to continue feeling like sharing my experiences is making a difference. This disease is rare; but that is all the more reason for it to be shared. All the more reason for posts to be commented on and awareness to be built, to break down the barrier of isolation with others among society. I hoped that through starting this blog, I would open the airway for support and comments to prove that I am not facing this battle alone.

I don’t understand why people are feeling obliged to ignore my struggles, but you have discouraged me from wanting to continue sharing.

So peace out, for now

I may return to my blog when I am more established and have more of an audience

Niamh

Respect my values or get out

The malice of people’s actions can be so harmful, even if they aren’t foreseen in that way. The results from personal problems in my relationship should give my boyfriend a wake up call as to where his values should be. I have had to accept many aspects in my life, but settling for less than what I see as necessary for a healthy relationship isn’t one of them.

I always had my suspicions, his attitude towards women, the sense of hierarchy he thought he had over me, I knew that there was something influencing his judgement. I kind of knew he was being exposed to these forms of content but I didn’t want to believe it. The first time he told me, I was a bit taken aback, I didn’t understand why, if he was happy in our relationship why was he seeking for more. The second time I was a bit pissed, but let it go as it wasn’t entirely his fault that porn was so accessible. It was the third time and most recent that I flipped, if he craved encounters with various women he could have that without me. I didn’t want part of his dirty, polygamous fantasy.

I have more respect for myself than to feel in competition for my boyfriend’s affection with the porn industry. I may lack confidence when it comes to my appearance and as for how other people perceive me but I certainly do not lack the courage to stand up for what I believe in

Porn has become a huge problem for today’s society, which makes me wish that I lived in a time before the internet had so much influence on people’s attitude.

Yes, I am anti-porn. It only serves as a source of altering people’s expectations and ruining relationships. Watching porn is the easy yet lazy way for (mostly) men to obtain sexual pleasure, when in a relationship, men who resort to this are cowardly, lazy excuses for men who choose to ignore a problem and let it get worse rather than tackling it head on. I had no intention of being involved or having my significant other suffer from the temptations of porn.

My boyfriend was basically CHEATING on me the second these urges entered his mind. Why anyone would think they can have best of both worlds without objection is beyond me. I have amazingly high pro equality values, especially when it comes to gender. Being a female in a male dominated, accommodated and unequal world gives me more reason to object to the habits that are seen as acceptable in society

I won’t tolerate outside influences having an effect on the personal and supposed-to-be private relationship between my boyfriend and I, and certainly not one which he brings on himself and sees ok.

I just can’t understand what logic would make someone assume for it to be acceptable to see another person/other people committing sexual acts. Someone who they aren’t involved with, who doesn’t share any kind of relationship with in such an intimate way.

Porn isn’t just harmful to those in relationships, it has effects on everyone who is exposed to it. Altering the perceptions of a relationship,

Setting expectations higher than the reality,

Introducing a sexual nature prematurely,

Cause of erectile dysfunction and

Associating a dependency with explicit content to get turned on; just to name a few.

If people knew what the long term effects that porn has, it would turn them off the idea straight away.

An issue I feel very passionate about, however it is your life and not mine; how you choose to live it is not my problem, just don’t say I didn’t warn you.

Porn; ruining people’s lives since 1991

Please come back

Nostalgia can be the best feeling, memories from a song, movie, whatever usually brings back happy memories.

Except for if the person it’s reminding you of is gone.

Even if the memories are happy, you can’t help but feeling sad, for the longing for that person back.

I’m not one for focusing on loss and what was but losing a person to a disease, gradually, then in a blink of an eye, they’re gone. Probably one of the most horrible ways to lose someone, and should be addressed. I’m not sure whether it’s possible to summon her back, but I’m not going to give up trying.

My whole personality has changed after the loss of me. The being you see, who is writing this is not me. This is a replacement. A substitute, trying its best to impersonate those characteristics of the real me. Nobody else can smell out the fake but me, (and my parents when I mess up and they say “you never used to do this”). My sense of humour, my attitude, my ability to let others take charge (within reason) have been sacrificed and I don’t like it.

Everyday this new me goes through experiences no one should have to, shaping the wrong person. Exposing the imposter to one more day in the life of Niamh, everything looking under control on the outside, but having that gut feeling that something is missing.

Eight years ago I began losing myself, the me I knew, the me everyone bailed on when circumstances got difficult. After eight years you’d think I would accept this state and the fact that I may never return. Thanks to society and the treatment others use towards me, I will never forget; for as long as I am seen as vulnerable, answered for and judged on my appearance, I will never stop longing for that teenage girl taken too soon.

Struggles

The constant debate of whether to get up or not. That one movement that used to be so easy is now the dictator of my day. I usually stay an hour or two longer in bed after I wake up, resenting each minute that goes by as for knowing I have to get up at some time.

My legs feel like they’re cement blocks. Have you ever tried carrying around two cement blocks all day? Neither have I but I can guarantee it wouldn’t be easy work.

My motivation to get up is usually errands that only I can do, whether assignments, food, chemo or physiotherapy, that’s usually my reason for starting the day.

Don’t touch her, that disease is too rare for sympathy

when you’ve given up
When no matter what you do it’s never good enough
When you never thought that it would ever get this tough, that’s when you feel my kind of love

Emile Sande – my kind of love

The one problem with getting another person’s empathy is that this disease is so rare, the chances of finding someone to sympathise with the same disease would be a miracle let alone facing the same challenges. Because it’s rare in Ireland, not even doctors show interest in finding preventative treatment. The government have no interest to financially support or even provide a support centre in Ireland.

Society today lacks empathy and consideration for others; I say if there was enough demand for attention to rare diseases, the government would have to listen. We live in a selfish society, globally. As long as you’re not directly affected, there is no motivation to help somebody else.

Histiocytosis is often misdiagnosed; depending on whether or not it’s life threatening, treatment is so important for lowering the complications associated or death. What if a loved one of your was misdiagnosed and treated for the wrong illness. If they turned out to have some sort of illness related to Histiocytosis but it was too late to reverse damages because investment into treatment was too scarce. Would you be mad? Frustrated at the little efforts others contributed into finding a cure

I want to change that, not only because I suffer from these arrogant attitudes, also because I see it as morally wrong not to “help your neighbour” in times of trouble.

I can’t emphasise any more the importance of exposing the consequences of this disease for the world to help make these worries a thing of the past.

Having to depend on the national and international demand of others to change people’s priorities is not an ideal situation to be in, because it rarely gets the attention or impact deserved.

You don’t know what you’ve got until it’s gone; but others don’t realise the hardship until they’re dealt with it.
Emile Sande- My Kind Of Love

All against me

Last night I began showing signs of another UTI, that’s urinary tract infection for those who are lucky enough not to be familiar with the term.

I feel like the whole world is against me when it comes to trying to continue daily life with a major adjustment. This must be about the millionth time I’ve had a UTI since my transition to a wheelchair.😪

First it was society settling for second best services when providing for the less able; now it’s nature picking on me for not being able to provide thorough care, through no ones fault, but maybe the HSE for not practicing the adequate medical care for my body 😤

Oh, you again

Only two rounds left, that’s what I keep telling myself. The novelty has definitely worn off now; of course it’d be different if there were obvious results of improvement, however there isn’t so chemotherapy is a must rather than want.

It was nice while it lasted but I have blood tests today to see whether or not my white blood cell count is high enough for my 11th round of chemotherapy. I’m not looking forward to it as I hate any kind of practice that relates to pain, even if relatively small.

My experience with blood tests has been a love/hate relationship if they’re good, it’s good; but if they’re bad, mother of god it’s bad.

If my white blood cells come back too low to carry out chemo treatment, it’ll be out with the cannula and wait until the following week. All the prodding would have been for nothing and I’ll have to repeat the process again the following week.

I hate it when that happens 😠😤