Today I took my kids to the paralympics. For me who has severe CFS this was a massive undertaking and the journey has taken a week as I can’t manage the journey in one go.
Recently I had my DLA cut from higher rate mobility and middle rate care to absolutely nothing as apparently, according to the guidelines “moderate” CFS doesn’t count as needing care. Bugger anything that says DLA is about the individual. Every day i’m in agony, every day i’m tired and every day I have to manage what I do otherwise I hit the wall and can’t care for myself which as a parent who’s husband works full time and has a disability himself is a really scary prospect.
This summer I have spent 3 weeks in bed just so that I can have one holiday with my children. Due to my lack of blue badge and road tax exemption the money i’ve had available to make up for this has been cut drastically. My 6 year old daughter is my carer, making sure i take my meds and reaching for the snack foods and strategically placed water bottles when I am too tired to get them food for myself.
One comment which stuck with me during the opening ceremony was about the wheelchairs available to competitors. They pointed out that people in the uk had much better access to good quality wheelchairs but I don’t buy it. The voucher for mine was for around £200 – the average sports wheelchair over £1k. There is no way i’d ever be able to afford that chair – even if I still had DLA.
Yes the games were inspirational and yes I managed the day on my feet (thanks to tramadol and gabapentine) but the pain i’m now in makes me angry. I’m dreading tomorrow when i wake and can’t get out of bed and rely on my 6 year old to bring me my tablets.
The 100 yard rule needs scrapping. what flaming use is being able to walk 100 yards? woo hoo you can get into the supermarket, can’t shop there but you can get through the door! We are shafting a whole generation of paralympians who maybe think they either aren’t disabled enough or simply can’t get the funding to train or get equipment.
This week if i’d of still had my DLA i’d of brought a careworker. someone to help me with my meds and with the cooking, someone who could push my wheelchair and someone who could of helped me on the trains. Yes I managed but the pain in the morning is going to be something else.
My DLA paid for my painkillers, now it’s a struggle. It shouldn’t be like this……
In March of this year my DLA was reduced from middle rate care, higher rate mobility to just lower rate care. I asked for reconsiderations and the award stayed the same. Having gone to my MP I got another reconsideration and my award was reduced to nothing – all because according to their medical services “moderate” CFS doesn’t cause someone to need care. So much for DLA being about how someone’s disability effected them individually.
What gets me about this statement is that i’ve had “moderate to severe” CFS for the past 5 years and have never had a problem until now. I’ve checked the CFS scale and at my best i’m in the worst 70% and and fluctuate between that and the worst 80%. This of course is without taking my fibromyalgia and back problems into account.
Most of this of course is based on a deeply flawed ATOS medical which focused on joint weakness and pain which at 3pm ain’t that much of an issue. There was no mention of the CFS during the medical and in the section about fluctuation it says “none stated” yeah because I wasn’t asked. I was even penalised for being able to get into my MPV to pick my daughter up from school. The fact alone that I had to get into the car to pick my daughter up from school less than a mile away and that I used a wheelchair to go a couple of hundred yards from the carpark was irrelevant. I have a strong pincer grip and could get off a low sofa briskly erm see me in a few hours mate when Adam has to get me off the dam thing because i’m too tired to move.
There is no mention of the sudden sharp pains in my back, hips and legs or dizzy spells which come out of nowhere and cause me to fall. No mention of the crippling fatigue which makes everything I do a challenge and force me to spend time in bed whilst the girls are plonked in front of the telly, no mention of the panic attacks when i’m tired and things are getting on top of me, no mention of the depression caused when I’m unwell for weeks at a time and don’t see a soul.
Needless to say I am complaining about the report because it’s fundamentally flawed. Way too many “none stated” bits where i’ve not been asked the question.
I just feel like i’m being treated like a criminal. All I want is to be able to live comfortably and when I’m well be able to work. I’m limited because I can only concentrate for short periods of time so work as a temporary nursery assistant for an agency which means I can pick and choose hours around how i’m feeling. I work a couple of hours a day when I can and sleep at least 2 hours a day on a good day and up to 6 hours a day on a bad one. Even if I don’t sleep I spend 5/7 days a week lying in bed unable to move for several hours. I rely heavily on my daughter to fetch and carry and on my husband to cook, clean, push my wheelchair, help with my medication and to help me in and out of the bath. Apparently according to ATOS guy a bath stool would mean I could do this independently! Again I wasn’t asked about this, I pointed out that the lack of grab rails in the bathroom meant I couldn’t get in and out of the bath safely – what relevance does a bloody bath stool have? I have 3, bloody useless if you can’t get in the bath to sit on the sodding thing in the first place.
He mentions the fact that I wasn’t in any pain or discomfort, yup well there’s a good reason for that – I was up to my eyeballs on the highest dose of gabapentine and codeine possible. I restrict my activity and my husband supports me with my medication so that I maintain this level of mobility. Without this then I would be bent double most of the time in agony which would in turn make my CFS worse as I wouldn’t get the rest that I need.
So just like that I have no DLA whatsoever and in fact I have to repay 3 months worth potentially and all because of a report from a GP who meant me for less than an hour. Cheers!
Since Caitlyn and Clara were born we knew something wasn’t quite right. Clara would get excema, Caitlyn had reflux and they never settled. It took me 6 months begging the GPs but eventually I got a referral to Leeds General Infirmary. Within minutes of them being seen by the paediatrician they were diagnosed with a milk protein intolerance and were given prescription formula.
Things were fine until we started to wean them. They suffered from chronic diarrhoea and were constantly sent home from the childminder as a result. Caitlyn was growing slowing and wasn’t well much of the time. She was tired, grey and permanently bloated – Clara was better though not by much. We kept begging the paediatrician for help and for over a year was told it was “just toddler diarrhoea”. The girls were discharged and were left to deal with it – Cait still bowel incontinent. One day I lost it. Cait had been sent home from the childminder yet again and I rang the doctors demanding an appointment. Just before we went in Caitlyn exploded everywhere. The GP saw it and the colour in her face drained. She helped me to clean Cait up and referred her straight to Harrogate.
Harrogate were great, The consultant agreed that this was a serious problem. Cait was just weeks away from starting nursery and was effectively incontinent. Elemental diets were discussed and food diaries started. We were referred to a dietician and I felt for the first time we were being listened to. After a few weeks we hit a breakthrough and realised that it was chicken causing an issue. The moment we cut out chicken and eggs the diarrhoea stopped and so did the accidents. She grew 4cm in 6 months and is so much happier. Other than a bit of constipation, reflux and bloating Caitlyn is doing really really well.
Clara was referred to a general clinic at the same hospital however and I’m not impressed. We were fobbed off with them saying there was nothing that they can do other than work out what’s causing the reaction and excluding it and I don’t need their help for that. I kind of see the point but having a name, a formal diagnosis, would help us explain to people what is going on.
Part of me is angry and dreads to think what long term damage has been caused by the original consultant fobbing us off. I fear that they might become intolerant to more foods and end up really poorly as a result and I fear that one day they will eat something which will make them very very poorly. The trouble is we don’t have a firm diagnosis – only a suspicion that it’s a rare condition and the only consultant who understood has retired. We don’t know how much if any damage has been done but they only way of doing that is surgery which is pointless when things are under control with diet.
I have questions but I’m not sure who to ask when it’s only a suspicion. Do I ask for a referral elsewhere and try and get my questions answered? Do I hope the new consultant knows enough not to fob us off again. It’s so hard 😦