Hello, im new to this site and was wondering if any one could help/advise me. I am 32 and was diagnoised with RRMS a yr ago. I was a nanny on a relatively good wage, quite high up in my profesion. I can no longer do this job. A nanny has to be 100% reliable and with MS i am not. Loss of vision meant no driving for 2 weeks. lack of sensory control made simple jobs like bathing children dangerous, and on top of the relapses there is the continueous tiredness followed by lack of concentration, a possible accident waiting to happen wen working with children. My consultant has surgested i start on tysabri. A)im reluctant to go on any drugs and B) being a live in nanny im now out of work and of no fixed abode!!
I was lucky enough to fulfill my life dram this winter and went travelling to Asia to learn how to mahout an elephant (figured do it whilst i still can!) but the relapses slowed down drastically with many hours spent stress free lying in a hammock. When working i relapse maybe every 2-3 months. so i cant work. but when i dont work and do nothing i am relatively healthy, (other than the on going sensory symptoms) Even when notworking by the evening i am tired and any thing that needs concentration i do in the morning. For example im not working, the other week i went to an evening do of a wedding did not really drink, did dance a bit and stayed up until 12, the following 3 days were a right off for me. So my dilema what do i do. if not working and on benifits i lok well, could walk the dog for maybe 30 min a day, and bike 2 miles to the shop occasionly. and be ellagiable for no bennifits. if working end up eligable for full ESA. And as far as bennifits go id rather work. but the system is that that you either have full benifits or you dont have any!
Working 3 hrs a day =apx £100. then no help with anythinelse
not working = ESA help with council tax, perscriptions, reduced rates aon thigs and loads of other possible financial help
So others in this situation (excluding the no fixed abode bit) what do you do?
And just incase any one else is of no fixed abode what do you do about drs and hospital apts. i drove 400 mile round trip for my last apt!
i know there is alot of blurr in here, but thank you.
MS has a habit of barging into a productive, well-established young adult’s life and making mincemeat of it. I am so sorry that you find yourself in this situation. No bright ideas to offer, I’m afraid, but I just wanted to say that I really feel for you. With so much up in the air at the moment, obviously it would be good if you could pin at least one aspect down and get yourself into some sort of stable orbit, even temporarily, to give yourelf some calm thinking space to address other things. But you know that already! Where to start is the issue, and I do not know what to suggest to you, beyond reminding you that you are a capable, organised person and that you will find a way through. It’s so tough, and so unfair, though.
Good luck.
Alison
I came across an organisation called ‘working links’ at a recent MS event who help people facing problems to find their way back in to work. I haven’t used them myself, but they may be worth contacting to see if they can provide you with a bit of direction. www.workinglinks.co.uk.
Sandy
### What you are describing is a common ill health dilemma. If you do not work and lead a restful life you do not meet the criteria but if you push yourself to work you prompt a relapse and become eligible for ESA.
There is a middle ground – to work part time and claim tax credits.
Working Tax Credit if you are disabled
You can get Working Tax Credit if you are disabled provided:
- you work at least 16 hours a week and
- your income is low enough and
- you get certain benefits because of your disability and
- your disability puts you at a disadvantage in getting a job. HM Revenue and Customs may ask you to give them the name of a healthcare professional who can confirm how your disability affects your chances of finding work. This might be a doctor, occupational therapist or a community nurse.
The qualifying benefits include Incapacity Benefit, Disability Living Allowance, Personal Independence Payment, Armed Forces Independence Payment, Employment and Support Allowance, Attendance Allowance, Industrial Injuries Disablement Benefit, Statutory Sick Pay, a war pension with constant attendance allowance, occupational sick pay or Income Support or National Insurance credits awarded because you have been unable to work. There are rules about how long you have to have been getting some of these benefits before you claim Working Tax Credit. Some of these benefits stop once you are working, and some carry on.
From CAB Advice Guide
The other option is to rethink ESA eligibility. There is an opportunity on each ESA descriptor to say “it varies” . This is your chance to explain that whilst you might have some better times there are times when you are unable to complete the task. Indeed the very fact of doing the task once means that you couldn’t do it again! I’m not saying an ESA application would be easy – it is challenging with RRMS but by no means impossible. You have described very eloquently why your condition has made working impossible, your mission, should you choose to accept it is to convince the DWP of that fact.
BTW Some of the benefits you mentioned like council tax are to do with low income - not being on ESA. You can get CT ad HB if your income is low. Help with Health Care costs are also available – Google “NHS Low Income Health Care Scheme”
Jane