blog · Blogging · Chronic illness · Disability · Illness · Lifestyle · Pain · Sickness · Wheelchair

One foot in front of the other

Firstly it has been far too long since I wrote anything. I have moved home, got back on the road and became an aunty to a beautiful baby girl. I’ve also ate an awful lot, drank an awful lot and slept an awful lot too. I could real off one million different excuses, but I won’t. Instead I’ll just vow to get better. I’m going to make writing monthly my first New year’s resolution. I’m going to make my second to stick to the first. Now I may have always failed at all my previous resolution, but they’ve always involved not eating so much sugar or physical exercise like the gym. However, this I can do from the comfort of my sofa so there really isn’t an excuse not to. So, watch this space I guess.

People often say to me that “They don’t know how I keep going.”
Well the complete truth is, I’m not even sure myself. I would love to be able to go into hospital and tell ever person laid up in bed how not to give up. I look back on what the last year has thrown/ catapulted at me with great force and I honestly can’t even believe I’m still here. I have lost several different people out of my life partly due to been ill. I understand this. It has been a messy rollercoaster of a year and if I could of ran, I would have …SCREAMING as I went. Since walking wasn’t really an option, running was certainly out the question. So, I guess I’ve had no choice but to kick into fight or flight mode. I’ve chose to fight. I’m always going to try to choose to fight.
My inspirations vary heavily while people such as Bradley Lowery and Henry Fraser provide me with amazing inspiration and Dua Lipa keeps me going with her sassy lyrics. I need to thank everyone that’s abandoned ship or showed lack of faith in my ability to keep going over the past year. These people are a huge part of the reason I carry on. I may have once turned my nose up at been called stubborn, but this is one exception where it may just be a blessing. I like to prove people wrong or make them regret their actions. This helps keep the stubborn mule in me motivated. It has become a running joke that I need a new life crisis approximately every three months to keep me fierce. However, this probably does absolutely nothing for my family’s mental state because they must deal with the crisis meltdowns first… But hey you can’t have it all can you, it’s give and take in this world, right? It’s no secret that when I go down I drag more than a handful of people with me. I promise to try and carry you all on my way back up.
Understanding chronic illness having never experienced it, is near impossible. It’s nothing I thought it would be, it’s so much harder in so many ways I wouldn’t have even considered prior to becoming ill.
I want to take you back to school for a moment. Remember the feeling of pure dread when you would hear the high pitch bleep echo round the sport hall of school and you’d realise it was the dreaded bleep test. That sick feeling in the back of your throat and in the pit of your stomach. Knowing that you’re going to have to push your body to breaking point. It’s going to hurt. It’s going to ache. It’s going to take away every drop of energy you have in minutes. It’s not going to be nice, yet you know it’s going to have to be done.
Well this is the exact feeling I get when I stand at the bottom of a flight of stairs. I look up to the top of the stairs and I can feel the lack of energy in every bone. The only difference is when you’ve had enough of running you can always stop. There is no drop out option while just living day to day life. This makes the option of never leaving my bed again so appealing. Once I rationalise that I’m not even a huge cat lover, so living the rest of my life out in one room with 20 cats probably wouldn’t bring me much joy. I must force myself through. There isn’t really another option.

I’m slowly learning to save my energy because the things I love doing tend to take the most energy. I refuse to live a nothing life, empty of the things I love because of something I cannot control. So I suppose the will to live a “normal” ish life is what keeps me going.

blog · OT · Sickness · Wheelchair

An OT’s dream

I am currently the owner of a little sporty, deep red and black, four wheeled beauty. Not only is it built to be lightweight, making manoeuvres + control easier, it’s also built to make gaining speed easier than ever!

What’s the issue you ask?

It’s around 0-10 mph which is just about as quick as my wimpy arms can take me. This is a far cry from the brand new Range Rover I may have once dreamt about.

My wheelchair is far, far from glamourous. Add that to my forever growing list of crutches, extra bannister rails, toilet raisers, shower stools, perching stools, bed leavers, ramps and even at one point a temporary zimmer frame; my poor mother’s house has now turned into what can only be described as an OTs dream.

Now for anyone that hasn’t had the pleasure of needing to know what an OT is, it stands for Occupational Therapist. Basically, in short, they’re the equipment people of the NHS world. They are a bit of an un-sung hero, without them I really wouldn’t get anywhere… quite literally. OT’s however, seem to have the ability to make me feel about as sexy as an overweight, middle aged, hairy man in nothing but a thong. Now, whilst I am aware that there is always someone in some deep dark corner of the web somewhere that’s into that kind of thing, it’s not really for the vast majority.

Having to use mobility equipment of any kind at any age can have the ability to mess with your self-confidence far more than I’m proud to admit. We live in a world where so much emphasis is put on how you look. We have been brought up surrounded by photoshopped images of people that present as having the “perfect” life. So, finding yourself to be sat on top of a set of wheels everywhere you go can leave you feeling very small both literally and metaphorically. This can be further emphasised by total stranger’s comments.

Insult hidden as a compliment number 1:-
“Your far too pretty to be in a wheelchair”
Insult hidden as a compliment number 2:-
“It’s a shame with you been a pretty girl too”
Insult hidden as a compliment number 3:-
“ I bet the boys used to chase you”

I would love to be able to write about how it doesn’t make any difference and I don’t care about needing equipment, but it would be a complete lie. I hate my wheelchair. However, that said I hate it in the same way you hated the thermal clothes your mum would buy you. They certainly weren’t going to be pretty but my god were they useful. You may have even looked at them in complete horror at first but once they were on, you realised you wouldn’t want to be without them. Mobility aids work on the same principle. Independence is my one main goal. Independence is what I want morethan anything else in this world. This should be a small request but for the chronically ill or disabled it can be a huge ask, even maybe a pipe dream for some. I am still so far away from regaining the independence I once had but I get closer all the time. Without the equipment the OT’s provide me, I wouldn’t have been able to relearn the skills I had lost and regain the ability complete my own basic care needs.

I continue to wait. And wait. And wait. I am waiting to be moved to a suitable home. I hope to write again about life living on my own and all the things that the OT’S will have me doing then. While in hospital I had to attend a group called ‘breakfast club’ where the only goal was to be able to get to the kitchen and make yourself a hot drink and pour yourself a bowl of cereal. This once again is a task I wouldn’t even think twice about. However, there was a time in my life where this was a huge challenge and left me both mentally and physically exhausted.

I know it will be hard but I know the OT team will help me learn and improve further in time. Until then I suppose I’ll have to stick to my wheels.

blog · Blogging · Chronic illness · Disability · Illness · Lifestyle · Pain · Sickness · Wheelchair

The Three T’s

Twenties, Tears & Tantrums

Some days I entirely understand exactly what happened to 2008 Britney. In fact, on a particularly bad day I may even describe the shaving of her head incident as nothing more then a logical way to confront a bad hair day. Frankly if I am being completely honest, on a really bad pain day, I may consider trying to shave someone else’s head as a punishment for glancing at me the wrong way.

Growing up in England I think we are all brain washed from a young age into believing crying makes you weak, shouting makes you a bad person and laughing for more than 15 seconds makes you crazy. Growing up in general can make you question your sanity a thousand times a day every day from the moment you hit puberty until the moment you hit the grave. Whether the questions are raised by your inability to say no to yet another tequila shot or if it is raised by something entirely more serious; I firmly believe everyone has questioned their sanity at some point. What I have found, however Is that chronic illness can pull so strongly on every single human emotion you can’t help but wonder if you may actually be losing the plot all together.

I have full on wailed like a 2-year-old on a supermarket floor more times in the past 8 months then I can physically ever remember doing in my entire life. Part of me now feels that when life has crumbled to pieces like a soggy digestive, I should just allow the tears and snot flow with absolutely no shame. However, another part of me also feels deeply ashamed that I know I have ugly cried into my chicken dinner more times than I care to remember already this year.

One of my reasons for writing this is to remind myself that although my timing can be far from ideal, it is okay to cry. For anyone who may be reading this, it is okay to cry no matter what your age, gender or circumstances. One particular late night snot fest, found me googling to find out why we cry when we’re sad. It actually made me feel dramatically better about crying so much so I shall share my new found knowledge:

Emotional tears release hormones and toxins that are associated with high stress levels. So there you have it, if you still find yourself feeling guilty, just tell yourself you are just releasing the stress hormones/toxins using the water, mucin, lipids, lysozyme, lactoferrin, lipocalin, lacritin, immunoglobulins, glucose, urea, sodium, and potassium from your tear ducts. Where is the shame in that really?

And for anyone wondering, yes I did actually google what tears were.

Life isn’t easy at the minute. In fact I feel learning to unicycle, while standing on my head, in a ring of fire would probably be easier than emotionally navigating been chronically ill and becoming disabled at 21 is. The constant battle between staying strong and allowing sadness to be present is one that I don’t think you can win. There is no right answer, someone will always believe you could handle your emotions better; some days that person is yourself.

Chronically ill or not, even if you just feel emotionally un hinged sometimes, I have compiled a short list of ways I think work to deal with your emotions.
• Allow yourself to be sad and to cry. (Nobody is happy 365 days a year)
• Remember the importance sleep and good nutrition has on our emotions. Try and eat well and get enough rest.
• Remember to breath. Sometimes you need to just concentrate on breathing to keep calm. (There is no shame in this)
• Write a letter or a text telling the world how terrible life is treating you, then tear it up or delete it.
• Watch a film or show you love (nothing too serious)
• If you feel out of control for more than a short period of time seek help personal or professional
• Hold on and remember no matter how difficult today is, it can only ever last 24hours. Tomorrow is always a new day.

Blogging · Chronic illness · Disability · Illness · Lifestyle · Pain · Sickness

So it begins…

So it’s currently 04.50am. I’m in some kind of half dead zombie like state sprawled across my bed with more pillows then a fancy chain hotel. I’m clinging to my V pillow and hot water bottle like it the only thing that can help me survive.
So in an un expected need to suddenly be productive. I’ve decided to start something, I’ve been saying I’ll do for months… Write down what life is actually like when your 21 and suddenly become disabled. Usually most 20 somethings are only up in the early hours ,with no sleep, if they’ve been getting drunk or they’ve got way too into a netflix series. However as much as I enjoy dancing all night and throwing up on my own shoes outside a pizza shop. Or alternatively convincing myself that I’ll watch just one more episode knowing fine well they’ll be another cliff hanger that’ll keep me hooked. Sadly I’ve been doing neither of these things.
In fact, I will formally announce that me and my mothers toilet and now very, very close trust me I mean very close. But I shall not go into details of vomit or all the other things that will stay firmly between myself, my doctor and of course the bathroom walls.
Life with a disability of any kind is hard. However someone once told me, you can’t polish a turd and this is how it feels trying to put a cheerful light on chronic illness. This kind of thing sweeps through life destroying everything and everyone in its path. One sick person causes so many reproductions destroying the family, friends or carer it equally sucks for everyone just in very different ways. I’m not ashamed to say I struggle with trying to adapt to this completely different lifestyle. I scream, shout, lash out, laugh and cry sometimes all within the same hour.

My aim is to write once a month from now on about life with a disability. I intend to cover topics that I frequently found myself googling, only to find nothing but information aimed at the elderly. If nothing else, I want this to remind me to take my own advice and not take life too seriously. No matter how hard it is, you can always find joy, you may just have to look far harder then others. I would like to give my family and friends a window into my life. I plan to provide a positive outlook on issues people with chronic illness/disability’s face everyday. Above all else I intend to provide hope that this type of life doesn’t have to be all doom and gloom. Illness does not have to define you!