Hi guys, sorry I haven’t blogged in a while, I’ve been stuck in hospital for the last five weeks and lost my blog mojo temporarily.
I posted this post to Facebook in honour of EDS Awareness Month (Ehlers-Danlos Syndrome) and decided I wanted to add it to my blog.
Trying to work whilst living a life full of pain, fatigue and limitations…..
I hate working from home, it’s lonely and I miss the days of being part of a team. I miss the little things like, coffee breaks, lunch with others, nights out and Christmas parties. I really miss the feeling of working together on a team goal and sharing that sense of team achievement .
My life is lonely during the school day, my world is mainly virtual these days!
My world has got even smaller again lately. I can’t even escape for a Starbucks on my own or pop to get my nails done before doing the school run and catching up with the other Mums. After five weeks in hospital I am left with zero mobility. I’m sleeping, washing and using the commode in my living room and for the time being, my life is enclosed in these four walls!
Even if I could get about, even if my mobility allowed it, I’d still struggle to work outside of the house and holding down a job. My hospital appointments alone are like a job in themselves and take up so much time.
This is why I have no choice but to work from home and study in the hope that by the time my course finishes in two years, life may have got easier. If it hasn’t, I’ll be able to work for myself. I’m studying to be a Psychotherapeutic Counsellor and hoping to help others like me. Once qualified, I can fit my practice around my own crazy schedule of healing and help. It’s a job that only requires my ability to listen and show empathy and after all that I have been through and seen others go through, being there for others has become my strength.
I have learned that chronic illness and pain doesn’t just equal illness and pain, it also equals;
LOSS OF INDEPENDENCE
LOSS OF SELF WORTH
and much much more!
We have never been on a family holiday! We can’t afford to and I’ve just never really been pain free enough for all the travelling. If we could afford a holiday though, we would be able to put things in place to make the travelling easier for me. We are going to Haven this year and that’s a start but I want my children to see more of the world.
I feel so guilty that for now, I’ll never earn enough to give my children what they deserve to enjoy. They are fed, clean, happy and always have nice clothes. I save all year to give them the best birthdays ever but it’s the other luxuries they miss out on, the things I want them to one day be able to experience like their friends. I won’t stop pushing myself until I can give them all of those things. If I have to do it by myself and carve a career that fits around my hospital life, I will do, I have to and I am going to.
Look at my crazy hospital schedule for the next few months, this is a normal pattern of appointments and it goes on all year!
Thursday 25th May – Middlesex hospital – Orthopeadic/EDS
Friday 26th May – local hospital – Orthotics
Wednesday 31st May – Cambridge hospital – Rheumatologist
Tuesday 6th June – London hospital – Urologist/Gynaecology
Friday 16th June – Cambridge hospital – Pain Physio and Occupational Therapy
Friday 23rd June – London hospital – operation
Friday 30th June – Cambridge hospital – Joint injections
There will be more appointments after the last listed have been rebooked, some are weekly!!
Monday 10th July – New Market hospital – Dermatology
Wednesday 26th July – London hospital – big hip injection
Who would give me a job with this schedule?
Then there is the facts that some days I’m in so much pain I can barely move, or sometimes I go to hospital appointments and don’t come home for another month?! Then there are times like now when I have to use my wheelchair but find it too painful to sit in for more than two hours?!
Who could I possibly ever work for other than myself?
I graduated as a teacher just before my health declined. I absolutely loved my job, loved the kids and loved the team. Before that I worked as a Beauty Therapist and Skin Care Specialist and loved the salon environment. I even had my own little salon for five years in my twenties. I love working and I love being busy.
There are hundreds of people like me, we are the forgotten generation. Our place on this earth slowly erased, our role in society written off.
This is why I raise awareness and blog to help all sufferers voices get heard, to help them feel less alone and to share light in the long dark tunnel!
This is why I study, I am making my stand and making sure I am not forgotten or written off. This is why I do my little job from home, to still feel valuable and important and feel like I still have so much to offer to the world.
This is why, no matter the struggle, I’m determined to study again and carve out my future for my children, it’s like starting from scratch but I am determined to not give up!
My job from home is working for my Mum and I am so grateful to her for creating a position for me. I am extremely fortunate that I can do this job and that it fits around all the drama.
I can do all of my work on my iPhone or laptop and all I need is wifi. This means I can work even when I am in hospital. I am so lucky she created this role for me but it’s part time because of my health issues and it’s worked from home.
I so so wish I was there with her in the thick of it, in the buzz of the office, no two days ever the same. I desperately miss the bustle of a busy working day.
The desire to be back in the thick of it is like a fire in my belly that will not be extinguished. The desire to not see my bank account overdrawn, wiped out by bills and to be able to live life and enjoy life with my children pushes me through the fatigue and pain.
I will not stop till I get to feel that buzz again, I refuse to stop.
This desire still doesn’t change the fact that whatever the future holds, I’ll probably be on my own doing it.
Alone on what I’m doing but not alone in what I am going through. There are so many people experiencing this struggle out there, living in limbo and waiting and hoping for things to change.
If we can’t find a way to work for ourselves or for an extremely understanding employer, our working lives can and do come to an end or become very stressful.
If we apply for a job, think of how many gaps in employment we have to explain.
Reasons for leaving previous employment?
Disabilities and special needs?
The world is supposedly inclusive and equal for all, job descriptions often state they welcome applications from people with disabilities?!
Other than my job with my Mum, the only other work I’ve been offered has been voluntary and trust me, I’ve applied for lots of roles! As yet, I have not even been called back for an interview!
I used to get every job I applied for, now I am not even offered so much as an interview.
I have also had an Occupational Health assessment and they wouldn’t sign me off as fit for work for more than 10 hours work out of the house a week. They said it would be too much to do any more hours for me, this only magnified the feelings of failure.I wouldn’t even be allowed 10 hours now my mobility has been temporarily greatly reduced again!
My brain is still fantastically able and I have so much to offer but my physical ability always lets me down.
People are quick to judge the chronically sick or in pain. They are quick to call them lazy, unfit, depressed or accuse them of giving up.
TRUST ME you have no idea the battle that person is facing, the amount they juggle, the fight they are fighting and the will to come out the other side.
TRUST ME there are not many of us that would choose to spend all day and night, within the same four walls. Sat here watching the world awaken and go off for their daily adventures. Watching everyone return full of stories from their day? Who would choose to feel this cast aside?
We want to be with you, doing what you do more than you could EVER possibly imagine!
If only you could make a space for us and see what we see, feel how we feel and understand our lives.
#chronicpain #chronicillness #edsawarenessmonth