Monday, 25 October 2010

Jenny's Story

As a teenager I was pretty normal, well as normal as a sensible goth girl can get. I do remember feeling exhausted all the time and barely going out at all compared to other people my age. My parents and I didn’t think much of it... not many people would. I got my GCSE’s and went on to do A Levels. My work started to suffer as I got older, I became more tired, sometimes missing lessons because I had fallen asleep in the common room and no one had thought to wake me up.

Once again, I didn’t think anything of it. I even got a part time job working as a catering assistant at the old people’s home where my mum worked. Towards the end of my final year of college I applied to university to study midwifery, (a job that, at the time the government were crying out for people to train in) and got accepted.

In September 2003 I began the three year course. Between the full time hours at university (not normal “full time” university hours, actual full time 9-4.30 everyday) and studying, along with placements (an essential part of the course) I noticed how much more exhausted I was becoming. I went to the doctors and mentioned it but they said it was probably nothing and left me to it. In order to afford to continue the course (without a mound of student debts) I went out and got two jobs. One working as a domestic in the hospital I was training at, the other working in a local pub, all the hours both jobs would give me.

By the middle of the second year of my degree I was starting placement as a midwife at 7.30 am and finishing at 3.30 pm, I would then change and start on a different ward as a domestic at 4 pm and finish at 8 pm from there I would walk to the pub (the final job of the day) starting at 8.30 pm and finishing somewhere between 11 pm and 2 am dependant upon the day. Most of the week this was the routine, and I continued this until it all went downhill.

From the beginning of my second year I had been noticing I was getting ill more frequently, I was barely functioning. Going about my day to day work in what can only be described as a daze. I started going to the doctors, at least once a month, usually once every two weeks. I was in pain, with my muscles and joints and I was ALWAYS so beyond tired, it was indescribable. I got everything that was going round, more than once, usually worse than everyone else. I started having to take time off, both uni and my jobs and began to fall behind in my studies. The doctors sent me for blood tests, the same lot, twice actually and did nothing else.

By the middle of my third year I had had to quit the domestic job, was working reduced hours at the pub to make just enough money to get me through uni, which itself was suffering. I was having to do less placement shifts a week than everyone else, meaning I wouldn’t finish the course until much later. I was having so much time off my uni was beginning to think that I was skiving, what we me having no official diagnosis. By this point I was going to the doctors weekly, sometimes more often. I even took my dad with me, and was vomiting blood in front of the doctor who was still convinced it was all in my head. Eventually the lecturers on the midwifery course sent me to a occupational health consultant, who FINALLY diagnosed me with M.E/CFS. I thought this would be a relief, but it was to be just as difficult from then on.

I ended up having to leave the midwifery degree towards the end of my third year after intermitting for a year yielded no improvement in my health. Because I had completed all the theoretical work, including my dissertation I received a degree, but it was in health studies, not midwifery. This was because I had 118 clinical hours left to complete but was not well enough to complete them. By this time I was house bound, bed bound with an extensive knowledge of a profession I could never work in and a degree that meant practically nothing.

My boyfriend had to move in with my family and become my carer, because my dad was a single parent and working all hours under the sun in order to keep the family going. Yet I never considered the option of going on to benefits. I used the money which I had saved to get me through uni to fund all my living costs for the next two years.

With time (and very little medical assistance) my health improved enough for me to consider going back to work. With my now lack of qualifications I decided to undertake a second, less physically demanding degree, this time in social work (another job the government were crying out for). In my bid to become a productive member of society I enrolled on this course, and this time, unable to work as well, got myself in debt. All this achieved was two more years worth of student debt and a second burn out. I was back to being bed bound, and unable to work again. I had to leave this degree two years into the course because the help I was promised as a disabled student never materialised and, forced to complete the course as a “normal’ student I relapsed badly, to the same point, if not worse than before.

This is where I am now, just under a year on from leaving. The only difference is I’m married, and pregnant. I had to attempt to go onto benefits in March when myself and my husband moved out and without dads help we couldn’t afford to live without. All we are entitled to however is a small contribution to our rent in the form of housing benefit and council tax benefit (with both we still end up paying the majority). I do receive DLA but a lot of this money goes on care, equipment and food for special dietary requirements. I have since also been diagnosed with Fibromyalgia and Hypermobility. I cannot get ESA because my now husband works full time, however it is the hours he works which is considered, not the amount he earns which is pitiful. Even the lady in the job centre (when I burst into tears after being told we can’t get anymore help) actually said we would be better off if he didn’t work.

This is stupid, because we would be in so many ways. If he was to stop working, or drastically reduce his hours, he would be entitled to carers allowance, my life would improve as at the moment it is pretty much me in bed, all day, alone. I would receive ESA and most of our rent and ALL of our council tax would be paid for us. Unfortunately, I suppose, I have very strong, deep set morals that tell me if you can work you should, therefore I will not let Chris quit or reduce his hours. Worst part is we are not entitled to working tax credits because Chris is not 25, and NO ONE (not even the tax credit people) know why there is an age restriction.

Also I can get nothing in the way of maternity pay. I obviously can’t work so couldn’t get any help there, and I'm not entitled to the right benefits to get the sure start grant. Meaning that although we just about scrape by on costs of living, we cannot afford to buy any of the equipment you need for a infant. Apparently I have until three months after the baby’s born to apply for the grant, which I may be entitled to after her birth, but that doesn’t help when I can’t afford a car seat to bring her home from the hospital in (and they won’t let you leave without one!).

I feel like I have done my best, tried my hardest. I have one degree and studied for another in two different professions the government needed people in. I have burnt myself out, and made myself seriously ill twice. I am still there. My husband works full time for a minimal wage because our morals won’t let us “use the system”. I lived for as long as I could on savings even though I was only 21 years old at the time. When I did have to eventually go on to benefits I’m not entitled to much and can barely afford to live. When all I have done, all of my life, is what the government recommends, what is viewed as ‘right’ in the eyes of the majority!

Also, applying for and being entitled to benefits when you have a mostly invisible illness that varies on a daily basis is SO difficult, if not practically impossible. I have had to fight to receive the little I do get and panic that when this changes I am going to have to begin this exhausting battle all over again. I can barely afford to live, and now cannot afford to give my child any sort of a good life, and she’s not even here yet. As I said, if it wasn’t for the help of our parents myself and my husband would literally not be able to afford a car seat to bring the baby home in. This should not be the way, when we are trying SO hard. It makes you wonder what the point is.


badspyro said...

Just thought I would pass on support - I'm another who has had to drop out of university due to illness that the NHS did nothing about - mine, however, was RSI from my computing degree and course before that.

Unable to work, yet looking fit and (relatively) healthy, with one consultant telling me everything was in my head. Ah, such a wonderful world!

I hope you find a way to cope,

Melanie said...

I'm so sorry to hear of your heartbreaking stories. My adult son receives DLA -at the moment, though we know it could be reduced or disallowed on a complete whim at any time) for physical and mental health issues including Adhd. The cost to my health of looking after him with very little or no support for the past 24 years has resulted in me being diagnosed with Fibromyalgia last year. I have not even attempted to try and claim DLA. It was hard enough having to fill out forms for my son and I don't think i can go through the stress of filling them out for myself. I can't afford to have fibro flare ups.. each day is a delicate balancing act of energy expended V energy conserved. I am so angry with this coalition government for adding this sort of stress onto the most vulnerable people in our society. Yes, I am sure there are some who claim and don't need DLA just as there are those in power who claim expenses they don't really deserve, but to punish everyone for a few rotten apples, is utterly tyrannical. If it's the co alition's paln to get us lazy disabled people into jobs, what i want to know is not where the jobs are coming from as the co alition clearly seem to think there are hundreds and thousands of jobs just waiting to be filled out there, no what i want to know is what employer in their right mind is going to employ a clearly disabled person.. or are we expected to all become liars when we fill out our job applications. I'm no liar.. When it gets to the bit on a job application where it asks if there are any medical reasons.. i will answer truthfully. and in the case of fibromyalgia alone, i'd probably have to continue my list of symptoms on an extra piece of A4... No, i believe like just about everything else the coalition is doing.. this plan of theirs to get everyone into work is going to backfire badly. Unfortunately by then it will be too late for so vary many. said...

I agree Melanie - it's a conspiracy - they want us to succumb to despair and do away with ourselves - to them it would be problem solved. I agree also with your point about disability being a morally correct disclosure on an application form - and that the Fibro symptoms take up another sheet of paper! I've got a yellow sheet covered in scribble, top to toe symptoms - I gave it to a rheumatologist who said "you haven't got Fibromyalgia"! My lovely new GP of over a year disagreed thankfully and has diagnosed me, along with the ghoul that is ME. How can we, in the condition we are, commit to and serve an employer? Are they all stark staring bonkers? I think YES! said...

Hi I have just been diagnosed with hyper mobility after suffering for a year with several other wrong diagnosis, haven't been able to work for 8 months, taken a year out of uni and really not sure if i can go back in september. If i don't then that law degree is over so here's hoping! I really feel for you, i have been told because I have worked and paid national insurance since i was 16 (i'm now 26) I am entitled to less benefit than people who have never worked. I get the contribution based but to claim housing benefit and the like it is much easier if you are income based. It all means you just have no money. Anyway i just wanted to say I was able to claim working tax credit from january to april 2011 when I was 25 (turned 26 mid april)so i don't understand why your husband can't get it if its really down to age? As long as he work 30 hours and he obviously isn't earning millions he sounds like a correct candidate to me. I have found also having a partner who is mentally disabled that things always seem to change dependant on the day and who you speak to. Hopefully now you are getting dla someone has guided you through all the other benefits you can have including a free ticket to the cinema if you do feel well enough to go out at some point. though obviously with a baby on the way it may be a while. I have my esa assessment next week which i am dreading. as my doctor said don't worry we can appeal as soon as you come out - so i am not expecting much. If i had been correctly diagnosed a year ago maybe i wouldn't be not working now? and as many other people have said who wants to employ people who need to pace their way through the day and need so much help just to get to work never mind do it. I'm sitting here waiting for the offers! Good luck with everything x