awareness / Body Snatchers / careers / Chronic Illness / Chronic Pain / Confidence / Ehlers-Danlos Syndrome / Hospital Glam / Hospital visits / Invisible illness / Pelvic Pain / Self esteem / Spoonie Life / Support / Time Out

I am in charge body snatcher!….

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Picture from – Pinterest

Sorry I haven’t posted in a while, I have had an EXTREMELY busy Summer with the kids and then the return to school.

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Picture from – Pinterest

We had fun and I absolutely loved having that time together but boy did it feel like a marathon towards the last two weeks! It was and is hard work and I have had to keep going, I have had to ignore the pain and fatigue and push myself through.

You could say I have had to declare war against my body and show it who is in charge. I’m not letting this shit get the better of me and I will fight against it because I have to, my children need me to.

My children need me to get them to school, they need me to get them to the various clubs they attend and they need me to do all the Mummy things I am supposed to do. There are things I need to do and I WILL do them, even if it does bring me to my knees daily! I have to and I want to, there is no choice!

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Picture from – Pinterest

Life has been so stressful the last five years. I’m in and out of hospital and this year alone, I’ve had to spend another eight weeks locked away! One minute I am up and winning and then the next I am down.

I have HAD it and I am not taking any more! I am taking back the control and I am not letting this beat me!

I start my new college course this evening and I am so excited about some me time. I am still studying to become a Counsellor, I’ve just decided to swap to our local college.  I have had to swap for financial reasons, the fact the course is weekly rather than monthly which will keep me engaged and also mean it’s three hours of sitting rather than my previous seven hours, which I found very painful. My studies are going to take me four years to complete now as I have to go backwards slightly to move forward but if that is what I have to do to eventually be welcomed back into the world then so be it.

I have a brain and I am a hard worker, I would be a valuable asset to any team.

I am qualified to teach post 14 years and I have studied Art up to Foundation Level. I have a Level 4 qualification in Health and Social Care and am now studying Counselling.

I am a qualified Beauty Therapist (Cosmetologist) with 17 years experience and I have owned my own successful business. I even came second in The East of England’s Young Business Woman of The Year when I was 23 years old.

The trouble is, all that hard work, studying and dedication and it does not mean squat now I have suffered my life bomb! People often forget what you were and focus far too much on what you are now.

Before the hospital stays, operations and daily crap of the last five years, I would be offered every job I applied for. Since my health problems and mobility issues, I am not even offered a job interview.

I have applied for so many positions/jobs and most of the time, I do not even hear back. There is never a letter, phone call or email to let me know why I was not good enough and it gets me really down. We are broke and my financial freedom is another part of my life robbed away by chronic pain and illness and I am sick of it, I want my life back!

This is why I am currently studying, if nobody will take me on, I’ll study and show them what I am worth when I work for myself eventually. So what if I am in pain, it does not mean I can not do great things still! My brains still there and I still have so much to give, I just need someone to believe in me, I won’t give up!

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Picture from – Pinterest

I work for my Mum from home, it sometimes feels like she is the only person on earth that believes in me.  My Mum sees my potential and looks past everything that has happened. I love the job but it is only part time and like I mentioned, worked from home. I really miss being part of a team and being with other people.

Life has only been a struggle since my health nightmare kicked off, I call it my ‘Pelvic Apocalypse.

I am not taking it anymore, I am not letting my body win. I am sick to death of feeling so stressed about life and how to manage. I did not study for all those years, work so hard for something to then come muscling in and rob it all away from me. I do not want this body snatcher anymore and I am going to ignore at ALL costs!

I am going to imagine my chronic pain and fatigue as a zombie trailing behind me. I will always know it is there but as soon as it gets too close and tries to bite a chunk out of me, I will give it a whack, a shove and put it back in its place. I need to stand up and be counted again, I need to be part of the world!

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Picture from – Pinterest

I do manage to fill the hours. I am never sat twiddling my thumbs. I raise awareness over on my Facebook page My Grumpy Bumpy – Bump to Birth and Beyond With Invisible Illness so am always reading up and researching different topics.

I blog here and share daily to the linked Instagram account spoonfulsofglitter and on the Facebook page Spoonfuls Of Glitter so am always researching the latest trends in beauty, hair, makeup and fashion.

I work for my Mum from home as previously mentioned which means I get to take my children to school each day and pick them up, a privilege I may of missed had this not all happened to me.

I get to have unlimited time with my children and that’s worth more than all the money in the world! The time we share together is the silver lining to the storm clouds above me. Without the storm, I would never have had these precious moments.

I am studying and enjoying carving a new path for my future. I love to learn and have more or less been studying something every year since leaving school! I am the eternal student and really love to challenge myself and set new goals.

I am also due to shortly start volunteering at the hospital, visiting patients and just being there for someone to talk to and a friendly ear to listen. I can not wait to help others who are in the place I find myself so often, lost and alone and scared about what is happening to them. I want to help ease their fears and be a light in the dark. I have found great comfort from various volunteer staff during my stays and I would like to give something back.

The interview for the voluntary work was my second for a similar position and in both interviews they wanted me to start straight away (you have to wait for all the checks to go through though.) In both interviews they said they could not wait for me to start, that I was an inspiration and that I was extremely strong to of gone through what I have gone through and still want to help.

If they could see my worth in these situations then why are none of the positions I apply for seeing I am willing and able?! What am I doing wrong?

I will tell you why, it is because they don’t even give me the chance to meet them. My applications just seem to get disregarded and I can’t help wondering if it’s because I now have to tick the box that states I have a disability?

If they just gave me the chance to meet them, they would see the light in my eyes, hear the the desire in my voice and see the fire in my belly to succeed. They would see that I have so much more to prove and that I would be honoured to be given the chance to be out there again. How do I portray my passion to succeed on a one size for all, tick the box application form?

To get your foot in the door, you have to tick certain boxes. Your answers have to fit and quite often positions are filled internally!

I miss the old days where employers used to stick an advert in the window and interviewed you there and then. There was none of this filtering applicants based on a form, job applications are so impersonal now. How can you get the measure of a person from just a form?!

What if you are better at expressing yourself verbally? Surely the ability to communicate and portray yourself professionally is far more important for any job role and key to any position?!

Yes of course, they need to see your qualifications and experience and quite often check out spelling and grammar at the same time but surely it is the person that counts, you can not beat face to face discussion and the form takes the chance of that away for lots of people!

I will not let these knock backs hold me back though, I am on a journey now to carve out a new career path. The voluntary work will give me such valuable experience, even if I do have to stay broke until I can finally work for myself one day. I know I am worth taking a risk on and if I have to take the risk myself, then I will!

This is fighting talk, this is war against the body snatchers, this is my body and I am in control! I hate feeling beaten and I am not allowing myself to.

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Picture from – picturequotes.com

I am not a superhero, I have not discovered a magic cure to my problems. There are days where it is so hard to be strong.

There are days I cry myself to sleep when the pain is so severe.

There are days it feels too much to even get up and out of bed.

There are days the brain fogs so bad I can not get my words out and it all comes out jumbled and the wrong way round.

There are days I forget the way whilst driving and have to rely on my Sat Nav.

I get days where the fatigue frightens me, I get scared about how tired I feel and it is like wading through thick mud just trying to get from A to B.

Chronic fatigue feels like someone has injected you with a sedative, your legs feel like led and it can be so hard to function, you just want to go to bed!

The difference now that I am becoming almost professionally chronically complex is in my head I am not thinking “oh no, it is the end of the world, I am never going to get through this,”  now I am actually thinking, “F*#K YOU, you can not have my body, body snatcher” and trust me anger works!

I force myself to do the school run because it does me so much good to talk to the other Mums. I wake up early everyday, do my hair and makeup and the boost this gives my self esteem is priceless. It used to make me feel so down not having a reason to get ready or put on my mascara and lipstick. I am a girly girl and I like to feel nice, looking good makes you feel good so now I have given myself a reason and it fees like I am back.

I force myself to get up early on a Saturday and Sunday and fight through the pain to watch my daughter play football and son play rugby. I do this because I want to be there cheering them in, I do not want to miss another moment with them, we have already missed so much. I am so proud of my children and I will forever be by their side one way or another, by any means! I also do this because again, it gives me reason to get ready, I get lots of fresh air and I get to catch up with other mums. Suddenly my world doesn’t feel so lonely anymore.

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You only feel lonely when you shut out the world and are alone. Often we are our own worst enemy, we create our own problems. I fell into a rut where I felt a mess because I was never getting the chance to do my hair and makeup, couldn’t move around so lived in pyjamas and the more I did these things, the more I hid away and the lonelier I became. Now I feel like I have come out the other side of a long dark tunnel, I am in such a better place and I feel much happier…..exhausted but happier!

I may not be going far but at least I am going. My confidence is growing again and I am catching up with friends and making new friends, all of which is boosting my self esteem and self worth after they hit rock bottom.

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Picture from – Pinterest

Try to remember the person you were is still the person you are. Do not become your pain or illness, they do not define you. Make the world see your worth and do not let yourself become a forgotten one.

Yes it hurts and yes it is hard but if your life is happy and full you can distract  yourself from the bad stuff.

Get angry with your body snatcher and do not let it win! I am not talking about racing around and jeopardising your health, I am talking about just keeping going, not giving up and keeping up your contact with the world outside your home because it still exists and wants you to be a part of it…..well, all but the people advertising job vacancies it seems but we can work on them later!

Be kind to yourself, you are just as amazing as ever, if not more!

Jen

xxxx

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When all else fails, take a Snapchat pic….Jen xxx

 

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