I’m no Drama Queen

Let’s think about this logically, shall we? If someone suffered the most horrific pain every single day WHILE carrying on with their life like their entire innards aren’t on fire, we would consider them incredibly brave, strong and maybe even inspirational to a point. Correct?

So here’s my question, why do we get treated so badly?

Pain is a wonderful thing, every chronic illness fighter will have you know. It forces out reluctant tears, shreds apart your days and strips away your energy and movement until the only way you can successfully move is well, quite frankly, by looking like you’re an 90 year old with a hunch back and a bitter taste in your mouth.

Whether it be from Fibromyalgia, Arthritis (shout out to my mama, hi), Complex Regional Pain Syndrome, Trigeminal Neuralgia, Endometriosis, Elhers Danlos Syndrome, Myalgic Encephalomyelitis, Chronic Pain Syndrome, Crohns, or any other illness that causes pain, we all deal with the pain caused in our own way. Some take painkillers, neurological or anti-inflammatory. Others prefer homeopathic, some meditation, yoga, creams, oils, supports, mobility aids, and maybe even CBD. We all have our different ways with coping with the different types of pain in the different areas scattered across our bodies.

As spoonies, we can all relate and show compassion and empathy for our fellow fighters who battle everyday; after all we know the pain all too well. However, what about everyone else? As I mentioned many, many times before, the general public have a certain way of seeing the disabled. For the most part, invisible disabilities aren’t seen to be anything important. The classic ‘I get tired too yanno’ or the ‘I have a bad back but you don’t see me lounging about the place’ are really very much a clear indicator of the lack of care given.

We’ve all had some sort of experience like this, whether it be from the clueless people we call professionals, family or friends, or strangers judging us solely because we parked in a blue badge spot. What the majority of people tend to not quite grasp is this one simple fact; we’re bloody good at hiding this stuff.

The disabled parking gets to me the most, as I mentioned in my blog post solely for the use of my blue badge. However, a good majority of the time, they’ll stare and that’s it. Unless you’re really unlucky and get some know it all, OBVOUISLY well educated on the topic of chronic illness, can identify every illness from a to z in two minutes flat medical professional with a degree in knowing everything, come up to you and ask why you’re there, they just tend to stare. Now what’s probably harder to swallow is the comments you get from friends and family, or even people you’ve just met, making light of your situation and claiming to be dealing with the exact same thing and yet they still do all this crazy stuff. Better yet, the classic ‘drama queen’ or ‘attention seeker’.

I’ll let you non disabled, healthy people in on a little secret of ours… it’s called hiding it. Every day is a fight for us. Every day I wake up feeling horrible and every night I go to bed hoping I’ll feel a little better tomorrow. The thing is, you can’t escape any of it and that’s what is so utterly heart-breaking. Every normal activity, happy moment or simple task is always being done with some sort of fatigue, pain or symptom.

It takes a lot to speak out about how we’re feeling, normally a nasty consequence of speaking out before and the reactions we received. We don’t talk about it for sympathy, pity or anything remotely like that. Personally, I have to talk about it otherwise I don’t know how long it’ll be until I can’t deal with it by myself anymore and I burst into flames or something. Pain isn’t just physically exhausting. The consequences of being a long term pain sufferer means it takes it’s toll mentally and emotionally. It’s energy draining and you’re left anxious and fed up wondering when you’ll get your next good day. Sometimes I sit and wonder how much more pain I can handle before I crack like an egg.

I guess that’s why it’s so hard to hear someone insult your pain intolerance or bravery. Every activity, second of the day and moment shared brings with it some sort of pain, but unless I describe to you the horrific feeling going on inside me constantly, which bits are on fire and which bits feel like they’re being chizzled away at with a pick and hammer, the most you’re going to know is I have a bad back. What’s even worse is on the truly crippling, cry while you brush your teeth days, we’re still expected to work or clean or cook or to pass you something and it’s truly that hardest thing at the very moment in time.

Being called an attention seeker or comparing my body to your once in a blue moon headache is rather insulting. Do you know why? Well, because this pain pushes people to their very limits, it forces them to question their existence and leaves them hopeless of a better future.  These people still get up every day with a million things on their minds and a million unanswered questions in their stomachs and STILL make life happen. If you call me a drama queen for moaning I’m hurting, feel free to take a walk in my shoes. I guarantee you won’t like the walk.

This is often a bit of a sensitive subject but it’s something that needs to addressed. We shouldn’t feel ashamed for talking about how hard it is, because it is hard and that’s not something to be embarrassed about. When we don’t talk about it, we’re expected to get on with it and sometimes, that’s just too much. Without constantly depressing yourself and making it a topic of misery every 5 seconds, it shouldn’t be a taboo subject but something any one can talk about openly. It’s not something to be embarrassed about and it certainly doesn’t make any of us any weaker. It probably takes more courage to be vulnerable and allow yourself to talk and cry, then it does to ignore it and avoid it. Be kind to each other, pain comes in many shapes and forms.

 

 

Millions Missing

You’ve heard of Millions Missing right?

Millions Missing is exactly what it sounds like. Millions of people are missing from the world: children too young to understand, teenagers, mothers, sisters, fathers and friends – yet no one knew they were right there the entire time, hidden behind closed curtains. The campaign is a way for those who have no voice to be seen. The ones who were sentenced to a life of limitations and unreachable dreams and cannot show the world their true raw state; the state that is M.E.

Shoes are placed to represent the absent or ‘missing’ person, currently ill with M.E. The shoes are there to open the eyes of the healthy, that there is real, living people behind the diagnosis and the current state of treatment and awareness is NOT good enough. The ones who can attend, well they stand, sit, lie, shout, cry and scream, hoping to be heard – to be seen.

May of 2018 was the first time I attended Millions Missing, after being inspired from the documentary film ‘Unrest’. My parents and I attended one held in Birmingham the day before the normal date, as more people flooded past the cathedral on a Friday than a Saturday. My parents placed me in the middle of the walk way. That way they had to look at me, my wheelchair, my pale complexion and my sign painted ‘missing my teen years’. I had one sign strapped to the back and the other held by myself. With every person that walked past, they studied me up and down, left to right, reading my sign and carrying on.

It was a challenge in itself being in my wheelchair in such a popular place. Dealing with the on going stares I normally try my hardest to ignore was another thing entirely. That day I wasn’t annoyed by the stares as I tried to act like I didn’t see them. Instead I looked them straight in the eye, I looked right back. For the first time ever, I didn’t want to ‘blend in’ so I felt less awkward. Instead I made it my task to be seen: for my family, myself and for the patients who couldn’t attend.

The rest of the campaigners made conversation about the cruel greedy disease M.E is, to the walkers of the day. Others asked for petitions to be signed in order to stop GET and CBT as the only, and may I add complete shit, treatment we’re provided with. Imagine giving someone with Cancer, treatment that not only doesn’t work but also makes the patient worse. Complete and utter madness if you ask me.

Many people walked past. At first it was hard to see so many careless people ignore us without any consideration for what we were fighting for and how horrific it really is. It doesn’t take much to sign a box which could potentially help millions of sufferers in the near future. Does it?

I got three things out of that day. The first being, Uni is possible for me. At long last have I now met 2 people (on the same day) with M.E who successfully attend Uni. The second being what I originally thought,  but only proven further; people don’t bother helping others or supporting others if it doesn’t personally affect their life. It’s harsh but it’s true. And thirdly, I know every single person that walked past and ignored the cause, saw me. That my fellow blog lovers is the best bit yet. Whether they helped or not, smiled or not, signed or not – they saw me and they saw the way I was because of ME. Every person that stared me down took home with them more knowledge and awareness than they came with. That is enough of a reason for me, to campaign and fundraise till my legs drop off and maybe even more. For the ones that walked past with no second thought, you’re even more of a reason to shout from the roof tops.

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Myalgic Encephalomyelitis is cruel, life changing and disabling in every way imaginable. If you can attend or show your support for the disease and the ongoing campaign, please do so. 30 years on and we’re still fighting for decent medical attention. Help us win the fight and join in wherever you can! If you’re a fellow M.E fighter and can attend the next campaign, show your face to the world. You might be the face that changes it all.

‘Positive thoughts’

Speaking on behalf of most chronic illness sufferers, when we get ‘positivity’ rammed down our throats, it’s hard to nod and agree. Specially when the person doing the ramming is persuaded positivity and good vibes will cure us of all diseases, and healthy we will be. I have mixed feelings about this.

I can whole heartedly admit I am not the worlds most positive person, but I do try and see the good in fairly crappy situations, situations that make my judgement and many others, cloudy.

Becoming ill was a lesson in many ways as well as the curse we all know it to be. I’ve learnt many things including how abled beings treat the disabled and chronically ill.  When I first fell ill, no body really knew what was going on with me, including myself. What I learnt along the way, progressively getting worse, hitting my worst and then fighting my way along this chronic illness minefield, is that healthy people sometimes give the worst advice ever.

One thing that used to really grate on me and pluck at my nerves was a very common ‘think positively’ or ‘be positive or you’ll never get better’. 13 year old me did not want to hear it. In fact the last thing I wanted to do was think positively when gaining the ability to walk further than my house was completely unknown to me. That’s when the so called depression hit me and I spent my nights awake, and my days mourning what I’d lost. As difficult as that time period in my life was, I think I needed to go through that to have the motivation and drive to succeed and kick ass in all aspects of my life for the future.

To an extent, healthy people don’t appreciate what they have, or so it seems. ‘Think positively’ isn’t a good way to approach a newly diagnosed teenager, with no clue about anything going on, whatsoever. Healthy people, I ask you this; would you tell someone who just lost someone to think positively? I’m sure you wouldn’t. No, we haven’t lost our family and friends, but we’ve lost a huge part of ourselves. Often the part we feel makes us, us. Just like a failed marriage or losing a loved one, we need time to grieve.

Even when we have finished grieving (if), and we’re ready to move on or at least accept this life, pleased don’t tell me I’ll be cured with mind power alone. It doesn’t work that way. Quite frankly, I find it rather insulting to assume I’m not trying hard enough in every aspect possible, to gain back my once lifestyle. Again for the people at the back, positive thinking alone won’t ‘cure’ me, so enough. Sincerely, the chronic illness community.

However, and it’s a big however, the correct mind set is a crucial part of living with this an illness and getting by. I understand that this life is unimaginably hard, but sometimes I see people who are some what better than me, or sometimes a little worse, give up completely and have everyone do everything for them. Positive thinking is something I had to ‘learn’ and I can honestly say, I appreciate how my illnesses have sculptured me as a person. I feel I now appreciate the things I do have rather than falling into a slump of envy for what I don’t have.

I think if you have a can’t do attitude, you won’t achieve anything or make any progress. With a more positive and brighter outlook, I have become more driven and passionate about everything I want, no matter how hard the journey. I’m no better health wise, but sulking and dragging my arse around the house did nothing but make me feel worse. I have to fight my body constantly so why would I add to the feeling of failure? I quickly decided I needed to get my arse into gear and set myself realistic goals. Life flies by, and I for one, refuse to miss the view.

To let an illness control you more than it has to, in my eyes is silly. I cry and get down don’t get me wrong, but I will not give up and I won’t be someone who’s only set purpose in life is to feel better off other people’s pity. No body can hand me what I want, I have to want it bad enough to get it myself. I’m not saying I wake up every day with the sun shinning out my arse and a big rainbow painted on my forehead, teaching the ways of happiness and positivity. What I’m saying is to make a crappy situation a little less crappy, fight with all your strength and appreciate the many wonderful things you do have. Mine is my family. Let that be your motivation, rather than limit yourself to match your situation.

To abled bodied people, please think before you give your expertise advice to a chronic illness suffer, newly diagnosed or long term. To the chronically ill, let the good things in your life be the fuel that feeds your motivation. Proof those who told you couldn’t, wrong.

 

To be strong, means knowing when to be weak.

‘Sometimes, apart of being strong means knowing when to be weak’.

This is something I tend to say to myself a lot, and occasionally to others. This is my go to quote on the days the tears don’t stop pouring, and the frustration I’ve stored for however long it may be, wants to break free and scream.

I used to get angry. I still do as a matter of fact. Frustration builds, brick by brick till it has you round the throat. I used to get angry at the world, at the doctors and at myself. Never did my anger turn violent or harmful, instead it just turned into crystal tears that’d fall to my pillow at night. But then I felt weak.

I never felt completely justified to cry. What I went through and still go through everyday is horrific; mentally, physically, emotionally. It takes a toll on every part of you and after a while you just seem to accept that that’s that and that sucks. Even lying in bed, unable to walk and too weak to even get dressed by myself at 13 years old, I felt weak for letting it get to me. I should be better than this I thought. I know, that’s absurd but what can I say?

Its catch 22 though. I tried not to cry and scream and shout, and I kept a lot locked away from everyone. I remember sitting at the end of my bed, not crying, not talking, just staring at my hands and wondering if this is all my life would ever consist of. Pain and jealously for those who had it all. I was 13 and stupid and way over my head, yet I did not allow myself to cry. I just felt numb.

It’s always been an issue for me. I can pour my heart out and cry at Angry Birds but I cannot cry for me. I don’t know whether it’s because I’m at my most vulnerable and my shield is down. I don’t know whether it’s because I feel stupid and weak for letting something I’m so used to, getting to me. I don’t know whether it’s because if I cry, if I stop fighting for one second, I fear I’ll drift further than ever from my dreams.

I was told my many people when I got ill ‘you should be thankful, there’s so many people worse off than you’ or ‘count yourself lucky its not cancer’. I appreciate everything in my life, every single damn thing I have, can do and will do. I can do a lot despite my limits and restrictions but I also have the right to be upset about the things I don’t have and cant do. Better yet, I have the right to be upset about pain being a constant, never ending factor in my life till the day I draw my very last breathe. I have the right to get upset because while you were telling me I should be thankful, another minute of what should of been the start of my teenage years, passed with myself being in a wheelchair. I am grateful, I appreciate the smallest things in life, the smallest and the biggest, but I can be upset.

Only if 13 year old me knew that. The ‘you should be thankful’ is what I suppose started it off for me. I didn’t feel justified to cry because I should be thankful instead, so I stored it away (for the most part) and waited patiently for the explosion at the end of it all. Boy, did it go boom.

I however, am thankful. I am thankful of my up bringing because it set me up for what I thought could never be done.

I fight, every day and every day I will fight till the battle is over. What I’ve realised over the time span of being ill, is that I am strong. I am stronger than I or anyone thought I could be. I am a fighter and I have been always. I will never give in, its not in my nature to do so. I will take back control of my life, and I will do it will all my strength. I am strong.

My fight is never ending, forever testing my mental ability to stride forwards. My fight is never ending, I will always feel pain and frustration. I will always feel the bad side of life, the side we think will never happen to us. I don’t plan to suffer from my circumstances and I don’t plan on ever stopping. I have learnt I can cry while fighting, I can scream, shout, punch, kick and swear my way to the finish line BECAUSE I WILL NEVER STOP FIGHTING.

It’s okay to cry, I am aloud to feel weak. To fight is to constantly push and struggle, something most people don’t experience till they’re somewhat prepared for it. My life hasn’t even begun yet I am stronger than most adults. To cry means I’m trying, to cry means I feel and to cry means I’m pushing back. To cry means I’m trying through all the pain, and I will not be beaten.

I know I am strong and I don’t have to prove that to anyone. Being strong is pushing with all your might, but being strong also means knowing when you need a rest, to take a step back, breathe and prepare for the ongoing battle that is your body. I have realised, I am not weak to cry. I am strong by allowing myself to break, allowing myself to feel and allowing myself to breathe. I am allowed to feel weak and vulnerable, it takes a certain amount of strength to realise that in order to carry on, that’s what you need. To allow yourself to be vulnerable and in a place you could possibly appear weak is a braver act than many. I am strong because I know when to be weak, when to brush off the tears, get back up and laugh. As long as I always get back up, I will never be weak.

I am not a victim to my illnesses.

I am not a victim to my circumstances.

I am not a victim.

I can cry.

I can scream.

I will not give up.

I am not a chronic illness sufferer.

I am a chronic illness fighter.

And fight I will.

 

 

 

Must Haves For Pain Days

I woke up today as I expected to do so; tired and in a whole lot of pain. Yesterday evening, my family and I went to see Marilyn Manson. He was amazing, the atmosphere was amazing and I think it’s safe to say we all thoroughly  enjoyed ourselves.

So BAM, next day and my legs are killing and my heads pounding. Nothing I didn’t expect, but all the same annoying. As I was making myself comfy, grabbing all the things I want from the kitchen, getting blankets and jumper and all the bits & bobs I need, I came up with the idea to do this. So, enjoy.

My must haves on pain days:

1. Drinks

Keeping hydrated is important but so is feeling comfortable on such rough day. My first must have is an Innocent Smoothie. They are my all time favourite and the drink I crave most. Don’t ask me why, but I was put on this planet to drink the heck out of them, and drink the heck out of them I shall do. They’re full of different fruits so you get your five a day in one drink, and they range in different sizes and flavours. ‘Nuff said.

2. Blankets 

I think it’s pretty much the done thing to do when you’re ill; bury yourself under a blanket. When you’re ill permanently, you become best friends with your blankets. Yes, blankets, as in plural, as in many, many blankets. However, the fluffy human comforter isn’t just for cosying purposes, they’re also look cute too.

3. Heat

Ah, yes. What would my life be without heat? I love applying heat to the places that hurt, sometimes it just gives you that extra push you need, the push the painkillers didn’t quite reach. Whether it be hot baths mixed with some magnesium flakes, or a rice heat pack you microwave, heat is often my savour. I like to use a long rice bag, designed for soothing a bad neck. However, I often use it for my legs as it stretches across well and that’s were most of my pain occurs. My mum also buys me ‘Deep Heat’ heat patches that you stick on your back and neck, which help me out on those bad back days.

4. Netflix

Netflix is a great way to keep yourself entertained when mobility is an issue. Depending on what you watch, depends on the amount of energy you use which is perfect, if you ask me. If you’re in need of few good binge worthy recommendations from a Netflix Professional, read my ‘Binge Worthy Netflix Shows’ post!

5. Family & Friends

On some days, being around other people isn’t an option. However, on the days it is, spend it around loved ones. I always, always, always feel worse without my family around me to cheer me up. Hugs, laughter or just their presence is a brilliant way of getting through the pain flare you’re currently experiencing, in on piece.

6. Organisation and Cleanliness

This one is a strange one, but in fact something very important in terms of allowing me to rest probably. So having a clean room, hovered, bed made and no dust allows me to truly relax and feel comfortable in my little space. Maybe it’s just a Maddie thing, maybe it’s not, I’m not sure. However, I know 100% I cannot rest probably and to the best of my abilities if my room is in a state. It doesn’t help my pain per say, but it does indeed allow me to de stress and relax.

7. Loose & Soft Clothing 

One of the many sucky parts of having M.E means becoming sensitive. Whether it be light, noise, touch or smell, M.E impacts your ability to tolerate the things you could once before. Loose clothing is something I feel most comfortable in on pain days. Not just because it’s not hugging my body and doesn’t add to the feeling of grossness, but also because on occasions, my skin cannot tolerate tight hugging or rough materials. I often like to wear fluffy lined jumpers or clothing that hangs off me. PJ bottoms or joggys is always the way to go on a poorly day, having a baggy jumper means I can stay warm and flick my hood up without the uncomfortable sensation tight clothing can give me.

8. Pillows

Pillows, similar to blankets, are a much needed not feeling well item. However, a pillow under the back or to keep my head from feeling too heavy (I call it bowling ball head), can provide a certain amount of comfort. My mum bought me a pillow designed for pregnant women who have hip troubles. As silly as it may sound, this pillow is a 110% must. You put the pillow between your legs at night while you’re on your side and it for some reason, it works like a wand. I love mine, I highly recommend getting one if hip and back pain is something you struggle with.

 

 

Hashimotos; where it all began

I have hashi’s, as I’m sure I’ve mentioned many times in previous posts and that’s where it all seems to begin when I tell my story.

I don’t think I give enough credit to my thyroid in all honestly. It doesn’t effect me as bad as my other illness’s do. However just because it isn’t debilitating as such, doesn’t mean I don’t suffer still as a result, like many others. I have to give it to all the ladies (and the odd few gents) who deal with it, I really do. I often think because it isn’t as ‘chronic’ as chronic illness’s go, the illness itself and the people suffering from it are completely, without a doubt, overlooked.

I’m pretty confident doctors don’t really give two about the condition either. Take this and you’ll be fine, they said. Guess what doc, not fine! As always, if you’re not familiar with the condition, Hashimotos is an autoimmune disease of the thyroid. In other terms, the thyroid is slowly destroyed by your own body. The immune system attacks the thyroid, thinking the thyroid is inflicting harm to the body. If you haven’t already put two and two together, it’s not ideal by any circumstances.

One of the biggest problems I find many with hypothyroidism (the end result of a dead ass thyroid) have, is the medication. First of all, if you live in the UK you only have one option in terms of medicine as a replacement hormone for the thyroid. Secondly, you don’t have a choice to whether you can take it or not. Thirdly, the medication has some really crappy side effects that no one really wants. Well, not at all really. And last but not least, the doctors have a good habit of putting you on a dose that’s too low for you to properly benefit from. Long story short, you experience the side effects of the medication but none of the beneficial factors on a dose that is sometimes ‘scientifically fine’.

Immune systems, aren’t they great? No, not when you have a dead thyroid replaced with artificial hormones. You think having a cold is bad? Try having it twice as long with added fatigue. Thanks to my none existent immune system, I caught cryptosporidium too. Yes, a notifiable, horrific disease all because of this one little gland that decided to go sleepy on me. Speaking of things that don’t function properly, my metabolism. I swear to god, I can put 10 pounds on from just looking at a chocolate bar. Another lovely side effect of a dead butterfly gland; losing weight is really hard and essentially really tough to get to grips with mentally. I could exercise my butt off and lose half the weight most people lose from a daily stroll. The joys.

Fatigue, insomnia, bad hair and nails, weight gain, constipation, memory loss and joint pain. It’s all really tough. However, the thyroid being a gland that controls the hormones means a lot of problems in the womanly areas. Miscarriages are a very real result of an underactive thyroid. Like myself, some doctors worry that puberty will be late or never actually fully arrive. Having such a bad thyroid (150+ for me) meant questioning the possibility of ever having children or even having a period. Thankfully I did start my periods (not really thankful anymore, cramps suck), but it doesn’t mean I won’t miscarry when I’m older like countless other woman. I have to plan ahead of time, plan when I want a child and up my dosage significantly. Otherwise, getting pregnant in the first place is incredibly hard, maybe impossible for some.

Back to my original point. Having thyroid problems isn’t the end of the world, and again isn’t a chronic as chronic illnesses can go but there’s no denying the miserable experience some woman endure. The medication sucks and the illness is over looked as a minor things gone wrong, doctors and people. I had a teacher with the same condition tell me I was being a baby because she was fine with hers. Well that minor thing gone wrong can be really tough for a lot of woman, not to mention the symptoms, the meds AND the increased risk of diabetes, arthritis and alopecia. Don’t overlook someone’s medical problem just because it doesn’t land them in a wheelchair. Us thyroid gals are strong.

Weight & Chronic Illness

My weight is something that has really bothered me right from the age of 9, when I started to gain it. I know what you’re thinking, 9 is way too young to be worrying about weight and I completely agree. After struggling with it for so long, I think it bothered me so much from such a young age because of the lack of control I had over it.

I was diagnosed with Hashimotos at the age of 9 so I don’t really remember much other than feeling ill all the time, a lot of appointments and the dreaded blood tests. In case you didn’t know, Hashimotos is an auto immune disease that attacks the thyroid, thinking its a foreign object in the body it must rid. The thyroid controls countless bodily functions and when the thyroid goes bye bye, everything stops.

Metabolism is just one of countless things my thyroid has affected. I used to be really active till the shit storm I call chronic illness happened; you couldn’t stop me. I used to do gymnastics, ballet, swimming, horse-riding and kick boxing, just to name a few. The activities I did daily kept my muscles strong and my weight at a healthy number. When my Hashimotos made itself known, the wait gain slowly started even with the amount of exercise I did. I had no control.

Fast forward to 11, everything went bad very quickly. My parents looked out for the signs of my thyroid packing up, and as soon as it was apparent it was happening again, I was taken to the doctors and diagnosed. I was told I needed medicine called Levothyroxine to keep my body working, and it if I didn’t take it I’d die. Yep, that’s good doctors for you. Again, if you weren’t already aware, the condition itself causes weight gain but so does the medication. As soon as I started taking it, the weight piled on with one swish blink of an eye. Keep in mind, at this point I had dropped gymnastics and ballet, but taken up a place on the Netball team and started Tae Kwon Doe. I remember overhearing a nasty girl say if you were over 7 stone you were fat, and I was. It hurt but that was just the start.

I’m not making any excuses for my weight but exercise kept it steady. Steady enough I could still be fit with a little chub on the hips. I used to do cross country at lunch times too, had Netball practices 3 times a week and a match every week, went swimming twice a week, horse riding on the weekends and Tae Kwon Doe twice a week too. I also walked to school which was a couple miles from my friends house. I wasn’t a lazy kid.

Again fast forward to age 13, I was at a ‘chubby’ weight but not a size you would consider obese. I fell ill, stopped EVERYTHING within days, and remained bedbound for however many drawn out months it was. Then boom, house bound for nearly 2 years, even better. As you’ve probably already guessed from the sudden loss of exercise, my weight went crazy. I felt horrible about it for so long, struggling with the concept of being ill on the inside but also loosing control on the outside. If you haven’t already guessed, I like control in my life; control and structure. I have lost two stone since my heaviest but only when I gained some more energy, which isn’t something I have spare.

My point of this post I guess, is to end the stigma with food and weight. I hate the way I look at my self in the mirror one day, and I’m pleased I’m curvy as all hell and I have these massive hips to give me shape but the other days, I can just see these tree trunk legs and belly and nothing else. It’s quiet sad. I love my hips and I love my figure. I have a very similar figure to my mum at my age. I’m just more padded out than she was, but some days I’m okay with that and other days I hate it. I hate not having control and I hate the guilt I feel for looking this way. I hate walking into a fast food restaurant and watching for people looking and laughing at the fat girl at Maccys. Just because I’m fat doesn’t mean I stuff my face with food like a couch potato. I’m sure that’s the case for many.

I think gaining weight is one thing, with the right attitude you can easily lose it again. Gaining weight and having no real option of losing weight because exercise makes you pass out, or you lost all your muscle being bedbound, is another. I tried riding last summer again and boy can I tell you, my back and legs were in agony for weeks. I have no core muscles to keep me up right and give me the power in my legs I need to keep myself stable and my pony motivated. I figured that out very quickly. Chronic pain and my POTS are my biggest obstacles, none of which are my fault yet I cant help but feel bad about my size when everyone else is motivated and on the track to a healthy lifestyle.

The comments I see on social media don’t help either. They’re on these big time posts by someone like UNILAD, and other people’s over all attitude to bigger women and men is sometimes really disgusting. Don’t get me wrong, sometimes the comments are lovely and considerate, but the ‘stop eating fatty and get fit’ mentality is still very much real.

For me personally, the lack of overweight chronic illness warriors gets to me too. For most, they lose weight due to the muscle wasting away. That’s what it feels like anyway. The chronic illness community is great for support with your illnesses, but watching others battle their illnesses without worrying about the weight frustrates me. I can certainly feel gross on the inside and out.

Don’t get me wrong however, I love my hips, my waist and my height. I love my face, even if it is sickly looking and as pale as winters breathe at times. My problem is the lack of control which has always been my biggest battle. Since starting college however, I have to admit, seeing over big girls who are just as beautiful and as confident as the smaller girls has helped my confidence massively. So, I’m not ashamed of who am I and the way I look, I thrive with passion and dedication and bad dad jokes and I love myself no matter what because I deserve that; as does everyone. I just think the world needs to become a more considerate and supportive place is all. Maybe them, some of us bigger ladies and gents too, wouldn’t be so disappointed.

 

Hand in hand, Illness and Isolation

Understanding an illness is one thing; or should I say illnesses. Understanding the isolation that comes hand in hand with an illness is a completely different ball game.

I’m not talking about the isolation I once knew too well. I’m not talking about the isolation that comes with only seeing your family for months on end. No, I’m talking about a different isolation. One that I think is much harder to explain.

I have various different people in my life, all of who play an important role. I go to college and I interact with a close friend once in a while, and I see my boyfriend when I can. That used to be all I wished for, but selfishly I still envy other people. I have one close friend, and a couple others I’d just consider ‘friends’ but none of which really get me or understand a whole lot.

The isolation I feel now is different. Back when I was bed bound and crippled by fatigue and pain, I missed out on everything. School, friends, normal social interactions. What held me back then was my illnesses and the inability to function like a remotely normal human being. I was too ill. Now though? I’ve improved enough to drag my ass through college, and meet genuine alive, non imagery, real to the touch people. So what’s stopping me?

I sit at a table in Maths, and I know no one. I’m part time which is amazing for my health, but takes away the chance to meet new people on a full time course. When I walk into a room already crowded with people, I have no place in any of their life’s. I am forced to sit on a table where the only person that acknowledges me is my teacher. I sit and think about how it must feel to be liked by so many people, and to never face the embarrassment of being the quiet girl with no friends. English is better however, I’ve managed to make some friends but the struggle is still fairly similar.

The handful of friends I do have are good, genuine people. Yet isolation comes with having them too. I watch them experience nights out with their other friends, laughing and giggling; forgetting the world. It’s hard to watch. No one considers asking me and I just end up feeling forgotten. I think this is where my illnesses play into it.

I think because for the last 2/3 years I’ve never had the opportunity. It was never a case of being asked and considering it, but always a case of it never being a possibility. I now can go out and I want to, I sure as hell have worked my arse off to get here but it’s as if I’ve been covered with a sheet and totally forgotten about. I think I’ve made it abundantly clear I want to go out and about, experience what I should of done in high school but no one seems to remember me. Part of me thinks I don’t get asked because they expect me to say no. Maybe it’s just too much trouble inviting the girl that’s sick. Both are kind of crappy.

I don’t just want to go out to experience what a house party is like or spend time with a group of friends till early in the morning, I want to do these things in hope of making friends. It’s a vicious circle really. I cant get invited to anything to make more friends which I was hoping to make at this party I never got invited to, so they could invite me to others.

My family have told me to give it time, the day will come when I’m wanted and included in other people’s life’s. I just thought it would of happened already, I think I’ve waited long enough. Don’t you think?

I hate the fact that other people’s fun upsets me. I never wanted to be the person that gets jealous over other people’s happiness; yet here I am, feeling left behind. It’s not true and I’m not alone, I have an amazing family, all of which are my best friends and always will be till I draw my very last breathe. I do have friends too. Yet this overwhelming sense of being invisible can easily eat away at my good mood.

I’ve tried talking to certain people about it outside my family, maybe in hope of some understanding and progress, but I don’t think they do understand. I almost feel desperate, wanting what they have, to be loved and included. I think we often take for granted what we have, I sure did before everything was taken away from me. I feel like people over look the impact and beneficial factors of having friends because they’ve never known any different, and not being invited to something every once in a blue moon , isn’t a big deal. From someone who’s never experienced any of that, it is. Heck, I cant even get my own cousin, MY OWN BLOOD, to invite me to a single party which he has on a regular basis.

The lack of understanding is isolating itself, but being over seen constantly just adds to the feeling I’m already trying to get rid of. At times I feel like I have to insert myself into other people’s life’s to get anywhere. I have to ask about going out, I have to reach out first. I’m always the one at home while everyone else takes for granted the memories they are making. The wild and exciting ones they’ll tell the grandkids. But I can tell you this. I’ve been through some hard times; my whole family have. Every single time no friend nor foe has been there in support, just my amazing family. If I end up a weird old horse lady with 145,876 dogs, cats and ponies then that’s fine, my family are all I need. I have a friend, a best friend and an unbreakable bond in each and every one of them. That’s all I need.

Easy P.O.T.S Friendly Hairstyles

POTS, Postural Orthostatic Tachycardia Syndrome, is something I have carried with me for the past 3 years. Like mentioned before in previous posts, POTS is one of my most debilitating illnesses.

Asides from being dizzy all the time and passing out whenever my lil ol’ body thinks best, POTS affects every single aspect of my entire life. Something I started struggling with when my POTS worsened, is putting my arms above my head. In case you didn’t know, people with the condition have awful body circulation and basically nothing works the way it should. When I, and many others, attempt to put our arms above heart level, it starts to feel like the blood is draining from our arms. I think it’s safe for me to say it hurts quite a bit and most the time your arms start to cramp and ache; all of which is on top of the palpitations and dizziness.

Making myself feel better on pain stricken days normally means trying to look as okay as possible without further hurting myself. Doing your hair comes with it’s own personal set of challenges, so I came up with a few, fairly easy hairstyles which don’t worsen your POTS/pain.

Disclaimer: My hair doesn’t look the best as my health has beaten it to an inch of it’s life. The weird colour in my hair is old dye, something I have had to stop due to a previous diagnosis. I also have a shaved side, however all these hairstyles work with normal haircuts. 

 Half down, half up.

Hair style 3

  1. Section the part you want tied up in the bobble, I tend to part it just above my ears.
  2. Using whatever’s easiest, tie up your hair.
  3. Loosen off the bobble, by wiggling your hair about. If it’s easier to do so, put your fingers underneath your hair at the front and pull up slightly.
  4. Pull down any cute baby hairs around your face for a more relaxed, casual look.

This is my go-to hair style for most days. It’s simple and easy to do but also very quick, minimising the time my arms are spent in the air.

Half bun, half down. 

Hair style 1

This is fairly similar to the ‘half down, half up’ as you can see.

  1. Section the part you want tied up in a small bun, I tend to part it just above my ears like before.
  2. Go to tie your hair (the bit you parted) up. This time, don’t pull your hair all the way through. Depending on how big you want the bun depends on how much hair you pull through.
  3. Loosen the bobble if preferred.
  4. Again, pull down any baby hairs or strands around your face.

If you prefer to do so, try different sorts of buns. I do mine this way because it takes less time, meaning its less painful. However if you can manage, try swirling your hair around itself and then tie it at the base.

Twisted sides, half up, half down.

hairstyle 4

I switched over to my mum’s beautiful hair as I cant do this hairstyle on myself with a shaved side.

  1. On each side, find a chunk of hair above you ear. Thickness of your hair chunks is all down to personal preference.
  2. Begin twisting the hair till you get half way down.
  3. Bring both twisted bits of your hair together and join them with whatever you feel is easiest and least time consuming. You can use a clip or a bobble.
  4. Pull out any extra hairs around your face to soften the look if desired so.

Sticking to the same level of easiness, but adding a cute spin to a simple hairstyle.

Messy side plait.

hairstyle 5

Something a little different, but maybe even easier. I’m using my mums hair again as my hair isn’t long enough for this cute hairstyle.

  1. Bring all your hair to the preferred side, make sure its brushed and smooth.
  2. Start plaiting wherever you desire. You could start right behind the ear or leave some baggy hair and start slightly further down.
  3. Finish off with a hair bobble.
  4. Loosen your plait by pulling at the hair. You can also put your fingers in-between the braid and pull outwards.
  5. Pull some baby hairs down from your face to add to the casual look.

I don’t do this style personally now I have a lot of hair chopped off, however I think this one is a great one to do. Your arms aren’t up in the air, so the extra time spent on your hair isn’t painful. You can also switch and experiment with different types of plaits.