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

The wellness mask

I know I look well but you don’t see me at 4am when all my pain meds have done a runner. When I rock back and forth in pain and tears run down my face. Or perhaps when I wake to realise I’ve been asleep for 21 hours. You probably don’t notice my legs tremble under the table or the pain in my eye. I’ve learnt tricks to make myself present well, I plaster a smile across my face and an unholy amount of concealer under my bags. And hey presto I’m a new woman. One that might feel like she’s about to break but hopes she looks like she is killing it. The wellness mask is way of me pretending I’m fine, it’s something I pull out for so many different reasons;

* The likelihood is if you spend enough time with me to see my wellness mask often, I love you in some way. I don’t want you to see me struggle or worry about the way I am coping.
* I don’t want to be a killjoy, as juvenile as that may sound. No matter how much you love someone some days you’re just not emotionally prepared for the kind of negativity sickness can bring.
* Looking miserable or in pain promotes questions. Sometimes I don’t want to talk about it.
*When you think of me, I want you to think of the same person you always have. I want to be ‘just Vanessa’. I accepted a long time ago that too often the way of referencing me is “the girl in the wheelchair.” I refuse to claim the title of the sick girl too.
* I’m the google definition of very single. I already come with more baggage /wheels than your average 22-year olds. The last thing I need to do is send a potential partner running for the hills by rubbing chronic illness in their face or look like I’m on deaths door 24/7.
* I want to be treated “normal.” I still want to hear about your life/problems and talk about all the same pointless things. I learnt very quickly if I present myself as sick all the time people don’t know how to act round you or what to say.
* I want to be invited. I’m a sociable person, I’m still the same person I have always been. I want to go on holiday, I want to get drunk, I want to go to new places. Let’s face it, sad but true no one is going to invite you anywhere if you have a face like thunder every time they do.

* I still want to be reliable. I try my absolute best to not cancel plans even if it is a bad pain day or I feel particularly ill. I still want to be a good friend, sister, aunty ect, that can be dependable despite everything.

The wellness mask can be wonderful and its thereby my own choice. However, it can backfire. When people who are supposed to understand assume that because you look fine on social media you are fine. I’ve had to play 20 questions of why I don’t work more than once. I am far from lazy. I miss work more that I can possible explain and didn’t want to leave. Just because you think by looking at me once that I’m fine and should work doesn’t mean I can. Quite frankly if I didn’t ask for your opinion on my health or lack of job, don’t give me it. I chose to present myself to the world as fine because I don’t want the world to see me as not. But please don’t judge me for it.

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

Self-Care

From the minute you delve into the world of chronic illness you discover self-care. This was a completely new and alien concept to me, when you’ve spent the last 5 years been so busy you barely come into contact with the people you actually live with. Self-care is talked about like it’s the holy grail when it comes to coping with life when you’re sick.
Whenever the topic of self-care came up I instantly felt like it was being suggested to me that I just had to accept living like a grandma. Sometimes, it was spoke about as if drinking camomile tea and having plenty of rest would somehow fix everything. If I’m truthful, this made me angry. Everywhere I turned it explained the importance of relaxing and giving your body the rest it needed. This was not something that appealed to me. Hell was going to have to freeze over before I spent every day watching countdown while knitting. I admit this is partly because I equally suck at both knitting and countdown. My brain still craved to be active and social even if my body wasn’t always so keen on the idea.
When your body doesn’t enable you to work anymore, you quickly feel like you have no purpose. This concern is expressed by a massive part of the chronically ill community as well as by some people I know personally. Whilst on the receiving end of yet another self-care lecture, an OT suggested to me that I needed to fill my days to make my life feel fulfilled. This made sense to me, so I pulled myself out of selective hearing mode to listen up for a change. The suggestion that came next was so patronising it became a running joke amongst my family. She suggested that to gain life fulfilment, I needed to plan in activities each day for example plan to colour in for 2 hours everyday from 3pm-5pm. Yes, at 21 years old, it was being suggested to me that I would feel my life had purpose if I coloured in some pretty pictures each day.
All of these things made me turn my nose up at the idea of providing myself with self-care. If I’m honest with myself I was guilty of doing the exact opposite. I did everything from getting into a new relationship straight out of hospital, when I was still extremely unwell and totally not ready to small things like making plans that I just couldn’t commit too. It was my way of trying to prove to the world that I was “normal” still; when really my body does need more rest than before. That doesn’t mean I have to resign myself to sitting in a chair and watching the world pass me by forever. Self-care can be whatever you want it too to be. For me it’s taking regular naps while everyone else works, that way I’m getting the sleep I need without feeling like I’m missing out. For me self-care is anything I do where I take time out to make myself feel okay; getting my hair done, painting my nails, not rushing my showers on a morning are all examples of how I practice self-care.
Turning my nose up at self-care was a way of denying there was anything wrong which in turn made me more poorly. Giving myself a little more TLC than I used to means I’m then able to live life like I want too. I cannot stress enough the importance of listening to your body whether you’re classed as healthy or not. Take time out for yourself whether its to nurture your physical or mental state. Drink plenty of water, get plenty of sunlight, have a cuppa with friends and take time out to breath. Life can be so physically and mentally demanding that we are so busy we forget the true importance of a little me time.

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.