Being Embarrassed About Your Condition.

August 23, 2017

 'I'm too functional to be disabled and too disabled to be functional.'



Beginning to have to rely on walking aids, changing your bedding, changing your surroundings, adapting your life, becoming bedridden is not something we all dream of for our lives. 


Going from a top class athlete to a someone who will lose balance after walking a few yards. How did this happen? 


I was always the one in the pool being told off for having the giggles and I pushed my body hard, so hard but it always worked with me. I bounced back. How do you accept and adapt to your body no longer bouncing back. That is what is immensely difficult. I miss the girl that was always in fits of giggles and could simply have a rest day and be come back stronger. Now if I have the slightest blip, a bad day or start becoming unwell with another infection it can throw me off for days, weeks or even months. 


My body can attack, fight and cause damage itself within hours, yet healing is the longest road imaginable. 


I look back at times over the last few years when red flags were right in front on me. Yet I ignored them, always blaming myself for the pain and weakness I felt. Never recognising these red flags, just ignoring them out of embarrassment mainly and feeling like a failure for no longer being able to bounce back and be the strong athlete I once was. 


Red flags that I should have taken more seriously;


-School - I always felt fatigued. I never went to bed late. I still had the swimmers mindset and kept to my routine. I was never later than 10pm. Though I would sit in the car in a mornings questioning why I felt so zapped. I wasn't doing early morning training anymore, or doing all those hours training so why was I always tired? 


-Plagued by colds - often when I had the flu jab I suffered more colds but I always seemed to be suffering from the common cold. 


-Always cold - people would laugh and joke about me always wearing my coat or being wrapped up. I would feel upset by this as I would love to walk around be able to show my clothes off but I simply couldn't bare to remove the layers. As once I was cold I can never get warm. The only thing now that gets me warm is a hot shower or bath. Once I am cold even adding extra layers doesn't help. I have learnt to laugh off the jokes made and always carry or wear layers to keep myself warm. 


-Food - food, glorious food. Back in the day foods did used to give me discomfort - bloating, stomach ache and indigestion but you just dismissed them as they are common and happen to everyone right? I always used to stuff myself too ( still do ). School lunches - well it's a miracle I could fit it all on my tray. I would have pasta with tomato sauce and cheese, a cheese sandwich, a packet of crisps and a trusty twix everyday. I would feel bloated and suffer some symptoms after but I enjoyed these foods and the reactions were bareable. So I continued to eat them until my symptoms became more severe - headaches, sickness, rashes, brain fog and more. 


-Blurred vision - I have suffered blurred vision for my years and was always moaning to my Mum about not feeling save to drive. Someday I do feel extremely drunk. Yet I put it down to my nerve damage medications. It was a side effect so I just accepted it and tried to live with it. 


- College - I struggled lifting and carrying my bag around. The strain exhausted me and caused me so much pain. I blamed my weak stomach and tried to take less books. Yet I also struggled with concentration. I wasn't always in the room. Things were beginng to blur. At the time I blamed the long days ( which were challenging ) being up at 6am to catch the bus at 7.30am and arriving home for 6.30pm. It's a long day to tired the fittest person. So I ignored the effects. 


-Grades Decreasing - the subjects in class I was great with, I always responded to questions and the points I ever raised were valid. I had the knowledge. Yet under stress and pressure, tiredness from never sleeping caused my exam work to not reflect my class work. My grades were disappointing to what I knew I could achieve. This was hard hitting for me. I loved my courses especially media and politics. I thrived in those classes because I looked deeper than the surface and my over thinking actually worked well as I could deconstruct the challenges and creative work in front of me to find the answers. Maybe this is why I love writing poems as wrapped up in them are the real stories but only people willing to really engage will see their true meaning. The same can be said for my colouring. You bring the story out in them. 


- Exercise - since giving up swimming I don't exercise guilty as charged. I did a little yoga here and there and of course walking when travelling but swimming was my sport nothing else gives me that joy. I also couldn't hack anything too intense just to my pain. So exercise was a hit and miss job. Though when I began tiring quicker when walking around whilst travelling it upset me but I blamed the fact I didn't do exercise and I did like to walk when I could as it was a form of exercise I was still able to do but kept me from tightening up which I felt was contributing to my pain levels. So whenever it was nice weather I would always try and just go for a quick walk with Matthew. We would talk about the day and just clear our heads. Gradually after coming down with that virus in June 2016 I have never been able to walk like that again. 


-Moving out - moving out, I was so ready and super excited. I had my home decor head on and was excited by the prospect of getting stuck in. The reality was very different. I couldn't hack it. My concentration, my arms ached and became fatigued quickly when painting, I couldn't lift things and the stress of decor decisions and the work zapped me. I began feeling very guilty as my Mum (who we all know loves getting stuck in) and didn't mind but she was having to leave me at home to go and work on my house because I couldn't hack it. Your mood gets very low and you question why the hell can't you do this? My way of ignoring and avoiding the upset was doing actitivties outside of the house - meals out, cinema trips etc. When Matthew became solely devoted to the house and didn't want to do other activities I begrudged him for it. And now looking back it fills me with great sadness that my sadness and inability was one of the major factors of our break up. 


-Exhausting Events - prom, weddings, concerts and evenings out, shows and day trips I was not hacking. I would laugh it off that I was a grandma who needs her bed by 11pm but it was hurting me inside. We would kick off the evenings at 7pm ( however I would already be exhausted from the getting ready process ) and then by 10.30pm I would be done. I remember my 18th birthday we had the main party but then of course I wanted to go to town as you wait years to experience the experience so at midnight we got the taxi into town to hit the clubs. I was already tired and by 1am just after one hour of being there I wanted to come home. I had no energy to dance and the exhaustion from stress was making me feel sickly. I held on until 3am but I was so glad to be home. At the prom I would miss out on after balls and after parties because again by 11pm I was done. I couldn't party on until the 5am. Why couldn't I enjoy life like a young adult should be? Even now, meals out drain me from all the conversation, bright lights, busy surroundings and cinema trips even, the car journey then the concentration to watch the films. Simple, enjoyable tasks can't be fully enjoyed. I joked it was me getting old! It was killing me inside. 


-Travelling - my love. I adore travel. You learn so much, soak up so much culture and experience adventures you cherish forever. Though the whole process of packing up, getting ready would wipe me out. I would turn up to my Mum's half dead and she would question why I wasn't all pumped up to go. I was, I could wait for the experiences but I was zapped from packing, sorting the house and worrying about the airport stress  - lifting bags, long queues, rushing, uncomfortable chairs etc. I would accept the dig and retreat upstair. Making the excuse I was going to bed early when I was hurt and flipping exhausted with high pain levels. I would then sit up worrying I had upset my family, come across ungrateful and mad at myself for not being happy go lucky. 



-Early morning prep - having the get up hours earlier to ensure we are ready and functioning. Waking up every morning feeling like I had been run over my a bus, knocked over the head with a baseball bat and unable to feel some of my limbs means that mornings weren't a quick case of rolling out of bed, shower, change and breakfast. Done in 20 minutes. It was having to adapt to doing everything slowly and allowing yourself a rest time before meeting time. You never knew / know what your symptoms will be on a daily basis so the time it takes you to get ready varies. It's best to give yourself as much time as possible you aren't adding to the stress by stressing over being late. I just told myself it is me being organised and never wanting to be late. 


-Headaches and migraines - I began being plagued by constant headaches and migraines. Becoming sentive to lights and movement. I was struggling to function- think straight, work situtations out and concentrate. It wasn't because I wasn't drinking enough as I easily go through two litres of water a day, plus green teas. I ever have the volumes high or anything like that. So why the awful headaches? I would go to many consultants and be given a number of medications. Told I needed to reduce my stress levels which made sense - I was always stressed. Again making excuses for my symptoms. 


-Brain fog - hitting a point where you. I longer feel in the room, forget things and in some cases cause you to pass out. Again you blame it on 'being tired' and 'losing your mind.' 


-Sore throats - I would always struggle talking, swallowing and have swollen glands most days. I never understood why. I always blamed my headaches as when they were at their worst so was my throat. Though a hoarse voice became my everyday voice and I was becoming ever more embarrassed by it. Always excusing my 'sore throat' first before beginning a conversation. I could travel anywhere without my throat spray and the amount of time Mama and I ended up at the pharmacy abroad buying throat products.



-Urine infections - as soon as I became run down I would come down with a urine infections. They give me immense stomach and back pain. As always I would just go and get antibiotics or use over the counter products to relieve the pain and fight the infection. I used to suffer a lot with urine infections when I was younger so again I would make the excuse that I was obviously prone to them. 



-Cold sores - as with the above, as soon as I was run down the cold sores would decorate my lips. I would simply try to clear them up with over the counter products and tell myself it was obviously something I was just prone to. 


-Aching joints - getting in and out of cars, getting up off the floor, bending and moving around was causing me great pain. I would joke that 'I am getting old', laugh it off but then walk away a bit worried. Playing sports at school, especially tennis I remember bending down for the ball always causing me pain. Again at the time you do it because you can't look lazy for not getting the ball but I would tell myself it was my nerve damage that was the root cause of this pain. Now I struggle getting out of cars, getting off the floor won't happen without help. 


-Mixing up words and sentences - sometimes what I write at first makes sense to me but then I realise I have used the wrong words or missed words. When talking in conversation I 'lose' words. Unable to remember what the word is or what word it was I wanted to use. Or my sentence don't even make sense. I start off on one subject and trail off onto something else getting confused on the way. For many years this caused me to keep quiet, stay in the corner and almost avoid conversation because I didn't want to look silly. Although I have got better with working around this if I am feeling naff I will not speak just listen, or park myself at the end of the table, excuse myself and avoid engaging through fear of getting caught up in my own words.



There are plenty more red flags over the years that I now look back on and wish I had not ignored and addressed them better. We do what we believe is best at the time though. I was just a teenager -- young adult. All the above I dealt with myself because I was in denial about my health getting progressively worse. 



I was Sophie Ward- I had swum for my country, a top athlete. I need to man up, get a grip and suck up the pain.


My years of lying, smiling and laughing off the pain made people never fully understand how poorly I was becoming because I was neither truthful to myself nor them. 


I did not wish this disease upon myself. 

Just because I can't swim 60,000metres a week anymore DO NOT mean I am a weaker person. 


Battling Lyme is probably even harder and more challeneging. 


I was embarrassed to look like a weak person. People would question - 'why are you still sick?' 'Just sleep.' But my God reading all my red flags to myself shows the strength I have. 


I was trying to fix and heal myself. So scared of losing myself when it was beyond my control. 



I have had to adapt my frame of mind of embracing the changes I have to make; 

- accepting a wheelchair

- eating allergy free foods

- treatments 

- raising awareness and blogging 


As positives, always cherishing every moment and being as grateful as I possibly can. Not as negatives - looking weak, being fussy, being lazy. 


Deep down I know I am not weak and lazy. I work hard, I always pull through. I need to be kinder to myself and realise that. 


I thank all of you, my readers. Your support, love and kind comments help me break down my walls, accept and be more open. 


I hope this blog makes you all just think and back track. Do you have any red flags of when your body is trying to scream out and giving you signs and signals. 


Don't laugh them off, or make excuses for them. They matter and need to be addressed. 




Here are some pictures from the pub quiz last night. 

I have forgotten and managed somehow to have lost most of the night. Luckily I took a few photos to this morning be able to flick through and smile. The glory of brain fog. 


I am so grateful for the beautiful friends I have and all the moments I get with them. 







Your support keeps me fighting, learning and being open everyday. 



Love and peace 



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Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN. 

Life is too short not to live it to the full, making yourself happy.

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