All through life we are expected to make progress, meet milestones and improve ourselves. So what do you do when you have an illness that halts progress and self development? And what do you do when you feel like your life stopped 20 years ago and you are still getting older but not moving on?
Twenty years ago I had already had a lot of hiccoughs in my life and things had definitely gone as planned or as they should, with a lot of issues and illness during my schooling and then a back injury killing my dream job! And all that was before I was 21. So there were lots of changes in direction and a lot of hard work as things were never easy.
In 1997 I started a post grad degree, not where I had expected to be, having left school at 17 with 5 Gcse/O’levels to my name. I managed to use my failed nursing career to get onto Playwork degree and then on to a Master’s, a great achievement for someone who missed a lot of school and was never considered very bright! I still wanted to work in health care in some way so a degree in Primary and Community Care should have been the way to go. But as is my luck illness struck again! I was trying to hold down 3 part time jobs and a full time university course, my body couldn’t cope and I became ill with ME diagnosed in 1998.
Time off work and time off the course didn’t help any and although I did finally finish my course 2 years late, I had to give up work in 2000 and I haven’t worked since.
I feel like my life stopped in 2000, so I still expect to be able to pick up where I left off, but of course that doesn’t happen does it as the rest of the world keeps going and I have got older so what can I do now? In 2000 I was 29 so still had to time to build a career, have a family etc, I was a bit behind others, but it didn’t matter too much then. Now I am 47 and no further on. I have got married and had a child, but none of that was straightforward either. Now I am 47 and still stuck at 29 wanting a career and more children, but of course I am too old and too out of touch to be able to do either.
Progress for me these days is measured in how many painkillers I have taken, how many Netflix episodes I have watched or whether I managed to get all the washing done!! Not the sort of progress you want to be measured by.
I feel like I have always struggled and I have always been playing catch up with the rest of the world and just when things look good, I crash back down again. After issues at school I finally pulled through and got some qualifications and got a full time job at 17. I then decided to train as a nurse so left home at 18 and worked, nurse training was on the job then, full time work and studying! I lived in nurses accommodation and bought my first car at 19, life was good. Then it crashed down again and by the time I was 21 I was homeless, out of work and car less. Not much to celebrate.
I pulled myself back up through my 20’s through periods of unemployment, working, volunteering and studying and finally got a degree qualification at 26, but still having no job or sense of direction, enrolled on the Master’s degree. This when my health began to fail big time and as I have already said I had to give up work in 2000 having struggled with no income to get my degree. I still have dreams where I don’t know if I got my degree or not!
During this time I met my now husband, I was working then and studying, so he saw me deteriorate and still stood by me and supported me. My husband was also working and studying for a Masters degree, but he was much younger than me having followed the traditional path of education. In 1999 he got his first job and we moved to Leeds. I was still trying to work part time and finish my degree as we had very little income. I always vowed to finish my degree because I didn’t want to fail at anything else, my life was full of failure. But whilst I was on a the degree course I couldn’t claim any benefits and still can’t as I never collected enough National Insurance Contributions due to mainly doing agency work and several part time jobs.
In 2001 we got married, of course when planning for a special event, we had to have a difficult time with my Grandpa dying just a few weeks before the wedding. I was 30 the day we got married, so we had to decide if we wanted children despite my health, there wasn’t really time to wait and see if I improved. But again things weren’t easy and we ended up having IVF treatment, my other grandad died the day we got the drugs for the first cycle and that one failed and then on my 35th birthday and 5th wedding anniversary, we found out our second cycle has been successful and our baby would be due just after her Dad’s 30th birthday in Feb 2007. We dared to be happy again, but it was short lived with both my Mother in Law and Husband being diagnosed with cancer and I don’t remember much of the pregnancy at all. Christmas 2006 was a total blur with my husband’s diagnosis and my Grandma being in hospital.
We began to pick ourselves back up after Rob’s surgery and diagnosis and look forward to our baby. Emily was born 2 weeks early so arrived 3 days before her Dad’s 30th birthday. Rob was due to start radiotherapy when she was 2 months old, my Grandma died the day before his treatment started. So yet again our early weeks with Emily are somewhat of a blur.
Having two ill parents is not a great start for a child, but with help we struggled through and she was an easy baby and always happy. She got used to being with different people and has always got on well with adults. We wanted a sibling for her, but time wasn’t on our side and medically it was almost impossible so we had to give up after IVF cycle 3 ended with no embryos. We had run out of options, time and energy and needed to focus on what we had. It now seems trendy for celebrities to have children in their late 40’s or even 50’s, but the rest of us are told it’s dangerous and irresponsible.
Why am I writing all this, to prove what I have been through? To get people to feel sorry for me? I don’t know, it just makes me feel pathetic. It makes us scared to make plans or to try and enjoy ourselves as we are always waiting for something to go wrong. Holidays are always difficult as we have to work around health issues, only having one driver, managing luggage etc. Each time we went away we came back to find someone had been admitted to hospital.
Finally plucking up courage last year to take a holiday abroad and to celebrate Rob’s 40th and Emily’s 10th we booked Euro Disney. My Dad died the day we went. I had to go on the holiday for Emily’s sake, but it’s the hardest thing I have ever done and leaves me with bittersweet memories of Euro Disney and again unable to remember much of it. After making the necessary arrangements and having the funeral we had to get back to some degree of normality and there was no time to grieve, I had to do that whilst trying to be on holiday too and never dealt with it properly as you can’t do both and you can’t ruin things for everyone else. As with many things that I need to deal with it has to wait, which means yet again I don’t get to move on. Can you be stuck in several different places/times at once?
This year we managed a holiday abroad and it went well, I felt awful and was so stressed out, but we did it!
Back home I am struggling, everyone is moving on and I am still stuck. I have been ill for 21 years, not worked for 18 years. I have kept going through many things alongside being ill, but it doesn’t make me feel strong or proud of what I have done, it makes me feel pathetic and a failure and that I have let everyone down. Emily is going to high school and is making her progress in life, she did SATS in May and did well and despite all the difficulties we have had she seems to do well. The end of the summer term was crazy with leaving events and high school events, it was exhausting and emotional and left us all stressed and bad tempered. The summer holidays have flown by and I haven’t been able to do as much as I wanted with Emily and I get cross when she makes too many demands on me as I am always so worn out and struggling with symptoms. This isn’t fair to her or anyone else and makes me feel guilty on top of everything else.
Her growing up makes me feel left behind and makes me think about how I messed everything up and can’t hold down a job or make anything of myself, which is what life is all geared up to. We are put on this earth to learn, grow up, make money and reproduce and I failed at them all. My life seems to be all hard work and loss. I am not saying I have it bad, I know people in much worse situations so then I feel guilty about that too. I still feel I am waiting to achieve something and make progress, but at my age these things aren’t possible anymore, even if I became well enough. I’d love to train for something new, but who would accept me. I’d love another child, but my body is past it, and I wasn’t able to grieve for the children that we created, but that didn’t make it, as you have to move on and forget about it. So life moves on without me catching up. At the same time I haven’t had chance to grieve for what I have lost as I have had to move on and try to keep going and trying to catch up.
The events haunt me and trouble me most days along with poor health and low energy, they make me miserable, irritable and isolated. Then I come across as impatient, rude, unemotional and unreasonable, none of which I intend or want to be.
How do you come to terms with events that are in the past, some of them 30 plus years ago?
How do you accept them and understand that they were not done to punish you or to make life difficult?
How do you be happy within limitations?
How do you find something that can fulfil the desires, without becoming even more ill?
I keep saying I am going to pull myself together and deal with these feelings and move on, but I don’t know how and even if I try something else comes along that requires my attention and energy so the issues get moved to a back burner again as life doesn’t stop and wait. How can I feel like I haven’t done anything, yet have no time to do things?
I worry about the effect on my family too, we all seem to be unhappy and irritable at home, but put on a brave face for others. We are not very good at accepting feelings and if any of us is upset or angry we say that they need to calm down or not be upset. Feelings are not wrong and should not be dismissed, but I guess it’s easier to dismiss that acknowledge in the short term, but then they just keep bubbling up. Feelings aren’t always negative, and people don’t get dismissed for being happy, although we do often tell children to calm down if they are excited, no wonder we all get confused.
So where do I go from here?