Chronic Illness and Blue Badge Struggles

| Maddie

Every wheelchair user, chronic illness fighter and blue badge holder have all endured societies ignorance at one point in their lives. Maybe several times or just the once but however many times it may be, it happens to all of us and its never nice to receive.

Blue badge holders vary hugely, with thousands of different diseases and disabilities being the reason we hold one in the first place – no one person is the same. In todays society, the majority of the public still seem to be just as clueless regarding the nature of chronic illnesses, as ever.

An illness has no preference nor does it care about the colour of your skin, gender, age or religion. It simply does not care about the challenges you already face nor does it care about wealth, height or weight. An illness simply does not care, no opinion is formed and no choosing is done. Any illness, any person, any victim to a deep poisoning within. If any illness can strike any singular person, why is there still a problem with the vast range in people who hold a blue badge?

I’ve had a blue badge since the age of just 13, a mental hurdle in itself dealing with yet another unwanted ‘aid’. I’m 17 now. I’ve been through two blue badge licences, of which both include an up to date, sickly pale teenager. When we think of a blue badge and therefor a disability, I can be fairly certain when I say this – the majority think a blue badge must belong a 90 year old granddad with crippling arthritis, hunched over, shoulders high, dragging his one leg behind him. Disability comes in many forms, that we’re getting better at understanding. The logical bit – disability means possible blue badge? Eh not so much.

Speaking as a chronic illness fighter and a blue badge holder of almost 5 years, I can tell you wholeheartedly that parking in a disabled spot thoroughly makes me nervous – here’s why. As we pull up to a spot, whether it be at the side of the road that requires a badge or the disabled bit of Tesco’s, I and whoever I’m with is instantly judged for that decision.

I can’t truthfully say it’s just the abled-bodied majority of the population that are doing the judging; the very community I’m apart of are probably the worst. Thankfully I’ve never received worse than head shakes or glaring as they walk on by. I’m lucky enough to miss the notes under the window wipers or the verbal abuse received by some of the chronic illness fighters among us, none of which is acceptable by any means, whatsoever.

After years of going place to place with my mum as my best friend, the pair of us have seen the head shakes and the evil looks thrown our way and have glared right back. Although it begins to get fairly tiresome and we shouldn’t have to put up with any of it in the first place, I’ve become increasingly nervous about parking in a disabled spot (if need be) by myself. Now I can drive, my blue badge is my saviour. Without it, trips to get a sandwich to bring home after college would be more than painful on the bad days that often make an appearance.

I’m not sure whether the fact I’m 17 is the issue, or maybe because I’m not always in my wheelchair. Maybe its because I can drive, I just don’t know. What I’ve noticed is the blue badge holders themselves, typically the elderly majority, see themselves fit to make something I benefit from, embarrassing. As I leave the car after setting the badge on my dashboard, I walk away knowing the people sitting in the cars are watching as they always do, and I wonder to myself. What are they thinking?

I have never once thought necessary to prove my health is what I know it is: not healthy. As I stroll past, I wonder if they watch the way I walk, the way I carry myself and the speed I do it at. I wonder what they’re accusing me of in their heads as I walk past their horribly parked cars, heading for the entrance. These thoughts aren’t built of nothing, these thoughts and worries are built from the stories we share among each other and the vile looks of disapproval and theft from the elderly and disabled.

I read an article actually related to an illness close to me. The lady featured in the news had fibromyalgia, and although she was in the wrong for what was told in the article, the comment section disgusted me. ‘If she can drive, she’s not disabled’ and ‘fibromyalgia – a way of cheating the system’, comments alike. Supported by hundreds of people, reading these comments only further fed my thoughts about the whole situation.

I can drive yes, on the bad days I don’t. To prevent the bad days, I walk as little as possible and even then, sometimes that’s too much. My legs work fine, they’re perfectly functional. Although I experience pain throughout my body, driving 10 minutes to get to town is nothing compared to the pain caused by walking. I’m supported in the car, my back can rest, my shoulders and arms too and my legs move very little in order to drive. Not all disabled people are paralysed, not all disabled people struggle to drive. Ever thought some people hold a CERTIFIED blue badge because their legs are weak, they pass out while walking or they have no balance?

As for my age, I can only assume it’s half the problem. It always is. Chronic illnesses can also be invisible illnesses, meaning my illnesses aren’t going to be painted on my face and no, I don’t carry a sign either. You can’t see the illness and struggle, but its very much there. Did you know I know more young people with chronic illnesses and disabilities than I do old? I may be young but being old isn’t a necessary requirement to hold a blue badge you know.

I think the problem lies in the disabled community itself. If we can’t show each other compassion and support, how can we as a community expect the abled to do those very things for us? Instead of making me feel uncomfortable for pulling up in a spot being the age I am and the way I am, think about what could possibly lie behind the smile and the steady walk. Instead of making me nervous as I walk past you, as you stand huddled outside Aldi, looking and whispering, get on with your life and leave me be. I think I can speak for the majority when I say we have enough to deal with, without the embarrassment of walking past a clearly old and disabled elderly and feeling targeted for parking in the same spot.

Just in case you’re incredibly uneducated or something alike, blue badges aren’t easy to get hold of. If you think they hand them out to teenagers, you need to rethink your way of thinking itself. It’s not easy and I deserve help for my many illnesses just as much as any other disabled being.

Education & Chronic Illness

| Maddie

Earlier today, I was sat in the window of a small tea shop in our local town, sipping a mixture of melted cream and hot chocolate with my mum. Tomorrow is a very important day, not only for myself and my family but others exactly like me. We began discussing the topic, and as predicted I got irritated and angry. Tomorrow we argue the importance of my education and the adjustments needed to achieve what I should already have. In short terms, I have to prove I’m sick enough to be helped.

We all watch films about lifestyle and love, drama, action and even illness and death. However our society has been fed a trail of lies, shielded from the harsh truth that is very much my reality. I was led to believe being sick only ever went two ways – you recovered, or you died. Never surfaced the idea of neither, health nor death. Instead, in its place a life long, debilitating illness that neither threatens your life or allows you to live it. Ladies and gents – chronic illness.

Being ill has it’s handful, wait – bucket… no, digger tonne of problems as you can imagine. Feeling like you’ve been hit by a bus, dragged for several miles and then left to die is more or less expected. What I never expected with the many diagnosis’s given, was the most simple of human rights to be questioned and threatened. Asides from my family and my health, education is my absolute priority. Not only am I faced with something so much more complicated than ill or not, they just have to go and throw yet another struggle and another tiresome battle into the mix.

Tomorrow my mum and I have to enter a room and argue my human rights to people that see me as nothing less than money spent, all because I wasn’t originally seen as fit for help. Battling for an education with any illness is beyond hard, but knowing I’m not the right sort of ill or I’m not ill enough for their standards is a total different ball game. I don’t have any learning difficulties yet learning is still very much difficult. My physical situation impacts on my learning. I can’t think straight or speak properly, my thoughts become jumbled and lost among the words on the paper. The searing pain up my back, legs, arms and neck make sitting and writing near enough a work out. The headaches become unbearable; my vision blurs and my head burns. All of which is on a standard day, but hey, I’m not sick enough for any extra help right?

First of all its incredibly insulting to think my pain and suffering for the last 4 years is invalid and through it all, I still can’t get help for something that was never my fault. The educational system is so narrow minded when it comes to health and pupils needs, in my experience anyway. There’s this little box where they can help you if you fit perfectly, all four corners. If you don’t fit, you don’t get the help regardless of whether you’re desperate or not. It’s a joke. Help for students should be offered straight away regardless of the reason behind it, they shouldn’t be adding to the ongoing fight many chronic illness fighters and their families experience.

Yet again chronic illness, in my opinion, is being pushed aside and over looked, not taken seriously for all its seriousness. The world encourages diversity and difference yet refuses to help the disabled unless its battered out of them; like a dog with a bone. Every debilitating aspect of the poison, yet it’s not something worth helping a 17 year old out with. I’m not asking for anything to be given, I’m not asking for the impossible; I’m asking for the chance to better my knowledge and understanding and learn like every other person can. I’m asking for the chance to give myself the future I so desperately want, yet I was denied help and now we’re here.

My point is that being ill is hard enough, chronic or not, and we should all be helping each other to make anyone’s life just that little bit easier, even if its only a little, tiny bit. Teenage kids shouldn’t have to prove themselves worthy of help with their education, just like adults in the world of jobs and employment shouldn’t have to prove themselves in need of necessary help within their work. Fingers cross, tomorrow goes well.

‘Positive thoughts’

| Maddie

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.

 

Goodbye 2017, Hello 2018

| Maddie

Once again, nothing really went as planned. This year, 2017, I have laughed, cried and loved my family through everything. Now, 2017 is coming to an end, it’s time to recap on the year I’ve had.

2017 started off with a bang as the fire works lit the sky and showered down with dancing colours, as usual. So, what’s happened this year?

In no particular order, you’re about to read.

This year hasn’t been a ‘bad’ year, nor a ‘good’ year. It’s been another year of making incredible memories with my family and loved ones while learning everyday how to manage the crazy thing we call life. I’ve cried, we all have, but boy have we laughed too. Laughter is the best medicine in my very professional, wise and teenage opinion.

This year we spent two weeks in Kos, a beautiful island off Greece, oozing with culture and Greek traditions. We toured the island in a rented car and feared for our lives the majority of the time we were on the road, while looking at the beautiful landscapes and rich culture that thrived through the island. We drove up the biggest hill we could find and took mountains of photographs capturing our time there. I also had my feet sucked by little fish, weird but oddly soothing.

The holiday was amazing, half of it spent exploring, the other lounging by the pool and consuming as much alcohol as possible. I loved every moment and would suffer the flight there and back in a heart beat to go again.

This year, I finished my Media course and left that well behind me and all the mess it caused. I greeted a fresh year of college with open arms and now I’m doing my Maths and English GCSE’s in hope of doing my English A-levels next year. Unfortunate circumstances meant I missed them at school, so I’m doing them for the very first time at College (GCSEs).

I started this blog too, in hope of spreading awareness but also in hope of developing and improving my English skills for my desired future job as an Author or Writer. I have messed about with this site constantly, incorporated social media into it, and shared my life as a chronic illness fighter and a teenager, in hope of inspiring others or at least informing the healthy community around me on my and others illnesses.

I started working for my Dad this year, designing and piecing together a leaflet for his business. I later did some work for my Mum too and her charity, both of which I’ll be carrying on after the new year. To finally have a job and an income, and to earn some money and independence has been great, truly. I bought my family Christmas presents with my own money which I haven’t been able to do in the past, as having a job and having the worlds most unreliable body don’t work well together.

I turned 17 and was gifted a brand new Toyota Aygo was the best thing, past imagination. I love it soooooo much, Drogo/n (my car’s name) is cute, small and warms up within minutes. I have a wonderful family and I’m incredibly grateful for everything. I also started driving lessons and my driving test is around January, February time! I honestly cannot wait. Again, the independence driving will bring me is amazing but learning to drive with different members of my family has been one of my year’s highlights.

Going a little off topic from driving, I also set up a Facebook business page called ‘Mad Designs’ this year, in which I now have my first client. I am currently designing a logo which will be used on her shirts, cars, hats and business cards, representing her amazing company.

We are now further along with my illnesses and professional care thanks to one of the best Dr’s in the country and my wonderful parents. Everything is looking good with his care plan so hopefully this will be the start of a limited POTS symptom free year!

There have truly been so many wonderful memories this year, with every laugh and smile mentally captured along the way. Not everything about this year has been smile worthy, however. We lost a wonderful friend and horsey of ours, Bob. I knew him my entire life and my family and I carried on caring for him when his amazing owner and our beloved, and truly wonderful friend died 4, nearly 5 years ago. I hope you’re both happy to be seeing each other again, although we miss you tremendously.

Earlier this year I was told I have Alopecia Areata after a clump of my hair on top of my fell out and continued to spread and grow over the period of 5 months. Not a brilliant time for me, or us, and having yet another thing go wrong was difficult to face. Half the time I feel like I look ill and sickly pale but the huge egg shaped patch of non existent hair perched on top of my head only added to the original feeling.

I flared badly earlier this year, and still haven’t recovered from it so this again has been something I have had to deal with daily but I’m learning with every good and bad day.

My mum is working hard, and looking after everyone as usual, the glue that holds us all together, while dealing with her hands remarkably well, even if it doesn’t feel like that to her. Dad’s company is running well, I hope he’s pleased with it and his work. He also made mum the best Christmas present ever, so he now owns the best present giver title this year. My brother, Lewis, has settled into his new high school really well and has made a tonne of new friends. His drumming is getting better and better too, I’m hoping he sticks to it, he’s a natural and everyone knows it.

Although not everything was a positive experience, I learned yet again, family is everything and family can get you through anything. I’ve lost friends and made friends, but through all the good and bad of this year, my family have been there to share memories with every single day. I wasn’t expecting a smooth ride this year, and smooth it hasn’t been, but I’m ready for 2018 and the life long living memories I’ll create with my loved ones, family,  friends (the old and the new) and whatever else we’ll explore and experience together, this year, the next and for the many to come. Happy New Year!

 

 

 

Let it snow, let it snow, let it snow.

| Maddie

I love Christmas but normally struggle to feel Christmassy when the merry time of year approaches. For some reason or other, the weather seem to alter my perspective of Christmas. Long story short, when its miserable outside, I don’t feel very Christmassy.

Lucky for me and the many people currently in the UK, it began snowing two days ago and hasn’t stopped since. It’s safe to say, I’m in love with the white sheets that cover the outdoors from head to toe.

Xmas 1

Well now I’m feeling very Christmassy, even if we aren’t there completely yet. I already took it upon myself to start early with the winter like habits. Christmas films have been none stop since the 1st November, hot chocolates on the increase constantly and even the décor and tree has been up since around the 1st. The snow is the icing on the cake for me, just too top it all off and to add to the Christmas Spirit.

Xmas 4

I had a great time making a 10 foot snowman in the front garden with my brother today, which then furthered into a snowball fight with the neighbours. It’s still snowing now, and it hasn’t stopped all day so hopefully the snow will be even thicker when I wake up tomorrow.

 

Must Haves For Pain Days

| Maddie

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.

 

 

Sneak peak of December’s coming posts

| Maddie

This post isn’t necessarily an important nor long one, however I just wanted to let you know what will be happening this month leading up till Christmas.

To spice things up a little, this month I’ll be posting with Christmas in mind. I love Christmas and in all honesty, I don’t know anyone that doesn’t. To further my holiday cheer, here’s what to expect from me in the coming month.

  • CHRISTMAS WISH LIST
  • FAVOURITE CHRISTMAS FILMS
  • FAVOURITE CHRISTMAS SONGS
  • BEST BOOKS TO COSY DOWN TO
  • HOW TO SLEEP ON CHRISTMAS EVE
  • HOLIDAY PLAYLIST
  • MUM’S BEST MINCEPIE
  • DIY CHRISTMAS DECOR
  • THE MOST IMPORTANT THING ABOUT CHRISTMAS
  • FAMILY CHRISTMAS TRADITIONS
  • MY FAVOURITE PART OF CHRISTMAS

Keep in mind, not all these ideas will be covered and certainly not in that order. However, I’m looking forward to covering some of these topics for sure. I hope everyone is having a wonderful December so far, I sure am.

Hashimotos; where it all began

| Maddie

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

| Maddie

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.