Eight weeks to save my life

I have lost £180k nett wages since I was forced out of my job in 2008 and the government has lost £90k in tax and NI. I don’t understand why a simple cost benefit analysis has not been completed by The Department of Health. Treating those with chronic lyme disease would pay for itself ……. I’m a Chartered Civil Engineer – I was managing the design of multi-million pound decommissioning plants for BNFL Magnox nuclear power stations when I fell ill. The cost to the economy of loosing our combined capability to this illness – whether you are caring for a family or working is beyond measure even without consideration of the personal cost.

I would like to think my life can be saved. I watch DIY SOS and cry as I see communities turning out to help people in crisis. Lovely people with hearts of gold. I have no way out of my crisis without help and not enough energy to do anything except dream. In eight weeks my life will close down to the ceiling above my bed, without hope of treatment, I am terrified of facing the crippling anxiety I was experiencing, shaking on the inside, night sweats, feeling like I am dying. Symptoms upon symptoms. I will be finished. I have fought and fought for ten long years – even now I am trying to manage a way through the maze of social and financial problems this disease creates on top of the debilitating symptoms – but there is no way out. Now I have to face hunger and bankruptcy because of a dysfunctional benefits system.

I contracted Lyme disease (neuroborreliosis) and Babesia in 2004. I was bitten again in May 2013. Within weeks I was experiencing acute lyme symptoms in addition to the chronic lyme symptoms which I lived with on a daily basis. I do wonder if lyme disease is behind the statistically unexplained number of meningitis cases in the area surrounding Stroud. I was bitten twice in the area and both ticks were infected with neuroborreliosis.

I can no longer afford to fund the herbal protocol I am following as there was nothing else available to me. It’s been imported from the USA at a cost of £2000. I believe if you have neuroborreliosis you need anti-biotic treatment in addition to the herbal protocol. My parents who are 81 and 84 years old are paying for the last four weeks out of their savings account for their funerals.

My benefits were stopped in 2010 when I was too ill to attend an Atos medical and I have no money left. They didn’t approach my designated contact, York BDC were already aware I was bedridden and yet passed my claim forward to Atos for a medical requiring a 33 minute bus ride and ten minute walk. Atos were advised of my condition by another friend but still issued the medical appointment. I was too ill to open the mail – I thought everything was sorted and they would approach my designated contact to arrange a home visit. I haven’t been well enough or had the support to appeal the decision. I approached my parents MP and have been told the claim is too old to be appealed. I’ve not only lost the beenfits but all the NI credits too. I have to make a new claim and wait for it to be approved – I’m too tired to do anything. I can’t have council tax benefit as I am not at my flat – I’m too ill to live alone and at my parents.

I can’t afford to eat. I have tried not eating but it makes me feel incredibly ill when my blood sugar falls so I am reliant on sharing my parents pensioner sized portions. We are all hungry and there’s no money left for the last two weeks of May.

I have a £21k maintenance bill from the freeholder of my flat (I own the lease outright) which was payable in mid January 2014. The work should have been done in 2004/2005 for £8k. I have been unable to sell the flat since I lost my job in 2008 because of this situation. I cannot afford to pay, cannot raise finance as I have no job and have no-one who can offer me a private loan. I am trapped in a situation which will lead to bankruptcy and the loss of the £180k I have invested in the lease. Worse still without this money I have no hope of sourcing private treatment here or overseas.

My flat is gorgeous in an old wollen mill, with all the original features and windows … with a mill stream running past my bedroom window. Mill ponds and a leisure complex with a swimming pool and tennis court …. Once the work is completed I would be able to sell. My solicitor has told me no-one will accept the risk until then.

I would love to hear from anyone who can help me until I can repay the money following the sale of my flat – or anyone who can help me build a campaign on social media to save my life in eight weeks. I don’t even have a facebook account. Using a screen is really difficult for me so I stay away from the computer usually, I can’t even speak on the phone as my brain can’t make out what people are saying. I live in a world of text messages …..

I would like to think my life can be saved. In eight weeks time I have a very difficult decision to make. If my parents weren’t still alive and vulnerable at 81 and 84 years old I would have already taken that decision in 2011 shortly after being diagnosed and told I wouldn’t ever get any better. I have no way out of the financial crisis I face without help and not enough energy to do anything except dream. In eight weeks my medication runs out, my life will close down to the ceiling above my bed, without hope of treatment, I am terrified of facing the crippling anxiety I was experiencing, shaking on the inside, night sweats, feeling like I am dying. Symptoms upon symptoms. I will be finished. I have fought and fought for ten long years – even now I am trying to manage a way through the maze of the social and financial problems this disease creates on top of the debilitating symptoms – but there is no way out. Now I have to face hunger and bankruptcy because of a dysfunctional benefits system with no payments since 2010.

A simple cost benefit analysis would show the government that refusing to use the chronic fatigue syndrome definitions from around the world and carrying out clinical assessments of patients with the best tests available worldwide – and then treating them for the condition they have would save millions and bring in millions more in taxes and GDP. There are tests for lyme disease, ME, hypothyroidism …. all the things that get lumped into the “we don’t know what’s wrong with you because we don’t test or assess you correctly” CFS definition even before you consider those with a lyme disease diagnosis. What we need is an “Oslers web” (ME/CFS publication) for lyme disease – if I can just get treatment are there any journalists out there that are up for working in a team to collate all the information as a lobbying tool??? I’m up for it if you are!

Current Location: Stroud, Gloucestershire
Infected in: Stroud, Gloucestershire