Thank you to the man at the door yesterday who asked me if I was retired!! I know I look bad sometimes and am getting old, but I am 20 years off retirement age and how can you retire when you have never had a career or a proper stable job?
It is depressing though as 20 years ago I thought I had it all ahead of me, although I had already had many disasters. I had health problems whilst still at school and had a reduced level of education and finally got 2 CSE's and 3 GCSE's in English, Childcare, French, Human Biology and Maths not a great achievement. I left school and worked as an office junior for 2 years before deciding to train to be a nurse. This was before nursing became a degree subject and it was basically a full time job along with studying. I trained in Derby and loved it, but 2 1/2 years into a 3 year training my training was discontinued due to a back injury. I was heartbroken and to this day I regret not trying harder to carry on and challenging the decision. So in one fell swoop I lost my job, career, accommodation, independence and car. After a period of unemployment I got a job as a Contract and Quality assistant at Sheffield Children's hospital. A totally meaning less job title which involved assisting junior Drs with clerical work, liaising with other departments and and data collection. It was a trial job that 3 people were recruited for after a short time the other 2 left and weren't replaced so I did the job of 3 people. Sadly the job was only a one year contract and there was no funding to extend it, so there ended that job. Whilst working at this job I also studied for childcare qualifications by correspondence course and got a grade A in one of the courses!!
At this point I decided to go back to studying and try and start another career path, so I enrolled on a Dip. HE course in Playwork, the first year in Sheffield and second year in Leeds with option to do a 3rd year and convert to a degree. Whilst studying for this I did several unpaid work placements with children with special needs, including the blind, autistic children, developmentally delayed children and physically disabled children. I also had to find paid work to be able to afford to get through the course as I only had a basic student loan to live on, so I signed up with a nursing agency and was able to work as a care assistant. It meant taking work and short notice and always being in an unfamiliar environment, I got to know most of the hospitals in Leeds! I completed the third year to get a degree in Professional Studies with Playwork. The areas of work I was interested in, play therapy and similar were not open to me though and I needed to gain further qualification. Most play therapists were qualified in social work, but I couldn't do that as I did not have enough practical experience! Some of the people on the course went on to do teacher training, but I found an interesting course an M.Med.Sci in Primary and Community care, back in my home town of Sheffield.
Amazingly I got a place on the course, most of the other people on the course were Drs, Physios and OT's, rather out of my league. Having already done a degree I had to pay my own fees and living expenses so needed to work. The course was a full time course, but lectures were only on 3 days and many of the others had day release from well paid jobs, only 3 of us on the course were doing the full time one year option, the others were doing a part time two year option, but I needed to get into a proper job. Again I had to find part time temporary work so carried on with the nursing agency and also got a job in a nursing home and the local pub, just to survive. At times I was working 40+ hours in 3 different jobs and studying full time. Not surprisingly my health began to suffer! I had a kidney stone just before the course started and was in hospital. I took just a week off work as I was working to get money to see me through the course and there was no sick pay on any of the jobs. As time went on I was not really able to cut down my hours and was often working nights and days, but needs must! Eventually I became too ill to work so had no income, then my studying began to suffer too and my tutors started to complain and asked me to give up the course. No chance I was not doing that again, so I agreed to go part time. I now had no money and could not claim benefits because I was classed as a student, I could only get benefits if I gave up the course, no chance. I then had to take time out from the course altogether, but in order to finish was still registered as a student. Eventually after 3 years I finally got my degree, but because I had failed one of the modules and had to redo it I only got a basic pass rather than a grade as they did not grade anything that had to be redone, but you had to redo to complete the course, seems rather unfair to me. The one I failed was statistics, hardly my strong point.
By this time I had moved to Leeds with Rob who had got a job in Leeds and I needed a job. I was able to get by for a bit working for the nursing agency, but it was not stable enough. I finally got a job as a part time job Home care co ordinator, I was still far from well and still writing my M.Med.Sci dissertation on Barriers to Individualised Care in Nursing Homes. The dissertation had to be related to your work, which was fine for the Drs, Physios etc and they had access to patients and data. I had to ask the nursing home manager where I worked at the time if there was anything I could research for them, but I wasn't allowed to use patients and could only interview carers so it was not a great piece of research, but it was the end of 3 years struggle or so I thought.
Two days into the care co-ordinator job I fell ill and had to have 2 weeks off, not a good start! I finally got back and got into the job, but then began to have issues with getting paid, there was a lot of travelling and I was using my own car, which I had basically had to buy to be able to do the job! After a few months the stress got too much and I had to leave and I never got much of the money owed to me and was not able to fight for it, due to ill health and no money. I fell back on the nursing agency again, but my health was getting worse and I was not able to work much at all. Again I was not able to claim benefits as I had not paid enough national insurance only having worked part time in any job for many years. Finally in 2000 I became too ill to work and I haven't worked since.
During my life I also gained experience through work experience and work placements in nurseries, youth clubs, libraries, and respite care settings.
Rob had a full time job and we had to survive on that.
After finishing work I was in a very lonely depressing place and started to write articles for an ME website and became editor of the Leeds ME group newsletter. By this time I was into my 30's and had married and really wanted to become a Mum. But guess what I couldn't do that either! After years of trying we were referred for investigations, but nothing was obviously wrong so we were referred for IVF. I wasn't very good at that either, I managed one pregnancy out of 3 attempts. We had to give up then as money, time and energy were getting difficult and I had to focus on Emily.
So here I was a Mum to one, and I even needed help with that! I was not able to look after Emily on my own full time, what a failure. I can't call myself a full time Mum or even a housewife and don't do all my own housework. I'm not a full time Mum now as Emily is at school. I would still love more children, but I am too old and can't expect people to help me out. I didn't know how I would manage when I had Emily so we took a chance. The fact that I did get help was because Rob got cancer whilst I was pregnant so couldn't help me and that's still really the basis I get help on as he works full time and has his own health issues. Anyway it will never happen as I am too old for IVF and can't have child naturally as Rob is infertile due to his cancer treatment.
When Emily started school people wanted to know what I was going to do. She has now been at school 3 years and I am still not well enough to work, it takes all my energy to get her too and from school and make sure she is looked after when she needs it. Even if I could work what would I do? With a job history like mine who would give me a job? All my qualifications are out of date and irrelevant and I never know if I will be able to commit to anything. I have tried helping out with some children's activities and last year helped with a hour of spellings in school, its rewarding, but meant I was too exhausted after to be Mum to Emily. I don't have help with Emily now so have to be up to what she needs.
Before I had Emily I made cards and started my own website to sell a few, I never made any money on it as I could not do that many, but at least I was doing something and filling some time. I have not been able to get back into that as I don't have the time and energy even with Emily at school and so many people are now making and selling and the standard is way too high for me. I still have all my stuff, but don't even manage to make for my own use much of the time and get really upset with all the stuff I have going to waste, but can't get rid of it either as that too would feel like a waste.
I like making things, but struggle with concentration and following instructions. I began quilt making a few years ago to give me something to work on and enjoy, but its hard work and I only ever manage to get any done at the class. The quilt I am working on now will have taken me 2 years to make once it gets finished, some people would have made it in a week or 2! Its nice to make things, but I do make many mistakes and can only do it when I am able to concentrate. I have many things of the go where I have got to a tricky bit and now need help so have had to stop. I also started making bracelets and simple jewellery, but once you have made people a few they don't want any more and I can't produce enough to sell or meet the ever increasing standard, so again the stuff just sits there and the more complicated stuff I want to try never gets done.
So I can't work, I can't make things, I am not a full time Mum or housewife, so what am I then. On forms I have to put long term sick, what a job being sick!!
Earlier in the year I decided to start a blog and redo my website, but guess what I got stuck. I can just about manage the blog, but the website needs knowledge I don't have so is not completed how I wanted it. I need help with it, but Rob does not have the time and once Emily is finally settled in bed I am too tired to start working on it. So yet another failure, disappointment.
So am I retired? Well the definition of retired is "having left one's job and ceased to work," so yes in that literal sense I have been retired for 14 years. A retired what though? Never heard of a retired failure, or a retired never got anywhere.
At 43 I am about 20 years off retirement age, but the chances are I will never work. Even if I recovered tomorrow no one would give me a job and I would need to train for anything despite the things I have done in the past as its all obsolete. It's not much of an example to Emily and she does sometimes say she is not going to work when she is grown up, either that or she is going to have a job that earns her lots of money, but requires little effort!
A few weeks ago I was asked why we don't move to a bigger house or a house with potential? Why? Because we can't afford to. The reply well Rob has a good job. Well yes he does, but he has the only job, the only income and having a disabled wife is not cheap. We don't get any benefits, don't even get child benefit, well actually we do, I get paid the benefit and then it gets taken off Rob, but I have to declare it as an income!! We don't have the security to commit to big expenses. Rob has a good job and a decent paid job, but this year is the first year he got a pay rise of 1% after several years of no pay rise and the cost of living has gone up a lot in that time. There is little chance for progression in the job now as that would mean more hours and probably a move to London, not some thing we could do. The other week many of the people higher up the chain were made redundant, not exactly something to aim for then. No job is safe and after seeing my parents and grandparents struggle after being made redundant its not something I want to go through again, redundancy does not always come with a lump sum pay out and a good chance of another job. We have no fall back if Rob lost his job, I do not have any income or the chance of walking into a job either. So no thanks we will stay where we are with what we can afford, sorry if we don't meet your standards and expectations.
It does make me feel bad though, like I am dragging my family down with my inability and stopping them doing the things that they could do without me. Foreign holidays are just a dream. Emily was teased the other day because she has never been on a plane! When I was a kid most of us had never been on a plane, it was only affordable to a few, now you are a laughing stock if you haven't been abroad or stayed in this country for a holiday. I would love a bit of sun and scenery, but the toll on mine and Rob's health, not to mention the expense makes it impossible for us.
Many people who have had cancer decide that they are going to live life to the full and go off on holidays and do whatever they fancy and stuff the expense. My husband does not have that luxury. everything he does and works for is for me and Emily to be able to have what we need. I am not very good at realising that sometimes and am quick to pick him up on the things he doesn't do, but if it weren't for him I would have nothing at all.
So I do have a lot to be grateful for, I am alive, I am living in a comfortable home with enough food to eat. I have a beautiful daughter and a loving husband. So why is that not enough? Because I don't have a job, an identity, so I am just an ill person, but with an illness that is not really accepted and recognised, so I just become a nobody or a lazy person.
Maybe my job title should be professional nonentity, or professional moaner.
Rant over I think, but watch out if that man knocks at my door again. he actually wanted me to sign up to a first aid course, actually something I would love to do, but again wouldn't be able to manage.