A Bit of Background
I’m a mum of 4, and married to Dan. Our children range from 10 and 22 years old, with the eldest two from a previous relationship. My 22 year old flew the nest over a year ago, and my 19 year old just recently left…..
For a long time I have been quite poorly. Drs giving me test after test without giving me a ‘main’ diagnosis – just being told I have GAD, tinnitus, migraine induced vertigo, cervical and lumbar Spondylosis, lichen Planus, asthma…etc etc….
About 2 1/2 – 3 years ago, I could no longer cope with the extreme tiredness, backache, numbness and loss of balance, and instead of one stick to steady my balance, and support me when I had sciatica, I had to start using two sticks permanently…..this is when all the tests started – sporadic as they were (just like me!) because I would be incapacitated and not go back to see my GP when test results came back normal! – so finally late last year, I had a diagnosis of fibromyalgia, with overlapping M.E. I think I must have cried for a week! First joy – because this illness has blighted my life since my early 20’s – if not even earlier, so it was a huge relief to FINALLY stop wondering what was wrong with me! And then came the tears of sadness…sadness that I have an ‘invisible illness’ with very similar symptoms to MS – but without the full support of the medical profession behind it!
Is THIS what they call hell?!
In late 2012 – ( the year me and Dan FINALLY tied the knot! ) I realised that I wasn’t getting any better, and I decided to give in and claim DLA….there entailed several failed attempted of trying to apply online – I could barely sit at the PC for longer than 5 minutes, and our PC kept crashing anyway! – when you have M.E – days can turn into months, and before I knew it, it was April 2013, and still it had not managed to apply for DLA, so I applied for a paper copy, and then phoned social services to see if they could help with form filling ( blunt answer no! ) so I got in touch with CAB/DAB, but they couldn’t make it before my DLA application deadline…..days turn into months again, and I have a spell of morning paralysis in the summertime, which left me bedridden for quite some time – more than usual.
i eventually applied for PIP – the new DLA ( or at least it replaces the old DLA ) which is supposed to be easier…..ha! All I see is that they’ve cut out the lower rate care, which means many will lose a vital benefit, and extended the mobility side of ‘walking’ so far, so millions will lose their motability choice…..
Anyway, I had to get the PIP forms extended – memory is v poor around this time, and don’t have any written diaries, but I believe I had the date extended twice – because I was struggling with illness and the form filling again – BUT – I finally got it sent off around Sept time….but it will be backdated to Auguest 2013
Hell for me started at the beginning of summer – I was suffering greatly, but not only that, my wooden ramp had finally rotted away, and I could no longer get out of the house independently ( either with my mobility scooter or my wheelchair ) so entailed about 8 months of being housebound. I had all the OT reports from Suffolk County Council SS in place, recommending various adaptions, including the access ramp, but at first Ipswich Borough Council were having none of it….they didn’t want the house adapted ( a council house ) at all. I persisted though, and finally got the go ahead late in 2013, and finally had the ramp installed in Februaury 2014….which should have meant FREEDOM!!!…….
But he’ll had well and truly set in – my husband is a heating engineer, and was struggling with work, and the Ltd company we were ‘advised’ in 2009 would be a good idea….not so….2013 was our hardest year, and my husband was (as always, because he could never afford to employ anyone else! ) the sole employee. So he had to take the hard decision to work away from home after summer…..what a living hell….my 19 year old was as much use as a chocolate teapot during weekdays! And I couldn’t cook, clean, or even get upstairs to bed at night. I slept in the wheelchair in the kitchen all through the week ( handy for drinks and letting the dogs out for a wee! ) and continued to do this for months. My health declined further, and the stress of bills ( which weren’t getting paid – I didn’t know my arse from my elbow! And it was either, we eat and put money in the metres, or we pay rent….we chose to eat ) forced myself and my husband further apart. We almost broke up at the end of November.
Ipswich Borough Council were not very helpful, they KNEW of my difficulties and came out in October to fill out a Vulnerable Tenant form, and get me help with form filling…..this never happened! We had a possession order put on us around Sep time, but made agreements. Trouble was, I was getting repeat infections and my husband, when home, was trying to get the housework done, and get me seen at hospital or out of hours clinics. It’s was so stressful for the both of us….
Eventually, we had a huge talk at the end of November and Dan agreed that he shouldn’t be working away. He just couldn’t leave me anymore – the money wasn’t great – we were living on the breadline, and my health was deteriorating, and the children were suffering ( our then 9 year old, and our 16 year old who has autism and severe OCD ) so he had no other option but to quit……the sticking point though, was our ltd company – he couldn’t claim any benefit ( including housing benefit ) because we didn’t have up to date accounts of the business – the accountant hadn’t been paid for over a year, and I couldn’t even fill out a simple form, let alone hmrc stuff!
Fast forward to January – we still hadn’t heard anything about the vulnerable tenants scheme, and help with FORM FILLING!!, so a friend recommended an organisation called iHag – brilliant! But we couldn’t get in until end of January 2014! – meanwhile we had a visit from a housing officer, who dropped off yet another possession order – and this time they meant business. We were both very cross about this, and asked about the vulnerable tenants scheme and were told that it’s because there’s such a long waiting list, and apparently they were waiting for an income and expenditure form from me! ( so you need help with form filling, but in order to get it, you need to fill bloody forms out!! )
Anyway, ihag have been brilliant – helping us with finances, and are going to support us when we go to court Tuesday 13th May 2014
Hell did finally catch up with me in March – after countless infections ( cannot possibly count how many since sept 2013 ) My GP was useless….the day before I was taken to hospital he just prescribed me Ibruprofen !! ( see video above, taken a few hours before my GP visit ) – after months and months of chills EVERY single day, I was diagnosed in hospital with another infection – pneumonia….and was admitted for 4 or 5 days.
It’s now May, and yet I am still recovering – in fact I think it may even be coming back….the chills are creeping up on me, but not surprising really, considering I have to go to court to see if the judge will except £10 per week, and we can HOPEFULLY get to stay in the house we have lived in for 13 years.
I’m on ESA now – and STILL waiting for a PIP interview! ( nearly 9 months wait now! ) and will be expecting an interview from ATOS to see if I am fit for work!! ( I’d make a good bed tester! ) the benefit system is so complex these days….my husband can’t even claim carers allowance, because I’ve not been awarded PIP yet, and he’s unable to claim JSA because he can’t look for work……..and this is a man who has worked all of his working age life. He wonders what on earth his tax money has been spent on! He feels let down, and so do I!
They say you’re only a certain number of pay packets away from homelessness……and that’s true for us, even living in a council house and having the correct number of people for bedroom tax purposes. I truly hate the way this government had ruined Trade, turned against the sick and Disabled, sold off our assets, allowed the rich to hide their money through tax loopholes, while squeezing every penny, not only out of the benefit system, but out of the ordinary working folk.