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Possible benefits how will I survive
Hi i am in the early stages of my MD journey, I have a possible form of MD however just awaiting which subtype I have.
Physically my quadriceps are heavily wasted, my biceps also.
My feet and calves hurt a lot so its spreading.
I’m tired a lot, as muscke weak
I am still working but physically it’s to hard, I don’t tell anyone as I will be sacked.
I walk funny but say is a old back problem
Basically In the not to far future I will loose my job because the effects of this illness.
Some days I can’t walk more than 10 meters if I have over done it, others I could walk 1 mile slowly but in pain. When I’m to weak I just take the day off work and say I’m sick, car broke ect ect
I am a full time single parent to 2 young children under 5 also.
I am 40, I have paid my mortgage off so no housing costs.
Once I loose my job I doubt I will be able to get another due to this illness
What will life look like then.
How will I survive financially
Any single parents with MD here can say what I might be entitled to?
Reply To: Possible benefits how will I surviveJoe the picture you paint is not an attractive one, and it is one that many of us have faced. You do not say who you work for, but , like everyone else, the will have a personnel manual which may tell you what your rights are should you become too ill to work. It may also be wise to talk to a union rep for advice. Some organisations have reasonably good packages for when you cannot work any longer, like the NHS for example. It may also be a good time to start looking for other opportunities, either different employment or even self employment as you may still have some lead in time before you no longer work. People on here will know I am a great supporter of physio for those of us with MD. It helped me keep going for a few years longer , and more recently helped me keep walking. I suspect you will have claimed PIP or DLA, and you should now begin to think about how your condition has changed since you did. If it is deteriorating as quickly as you indicate then this should be a priority for you. looking at the benefits that would become available should you not be able to work will give you an idea of how much money you may have available. I am sure others much more expert that I will be able to help you there. if you plan ahead now, as you appear to be starting, then, should the day come when you cannot work, much will be in place ready for you to carry on being a parent and provider.
Mike
So many love songs, so little love.
Reply To: Possible benefits how will I surviveI’m currently self employed in building sector on a long term contract in which they will drop me instantly if knew. No responsibility or commitment as I’m self employed.
Reply To: Possible benefits how will I surviveI used to be scared of losing my job as a bus driver, but the fear was worse that the reality. Both ESA and PIP, along with having my rent paid, meant I was probably better off not working. I’ve been living like this for 11 years in December.
Of course I understand that many people would take a big hit in the pocket and have to cut their cloth to suit, but thank the gods we still have a safety net in the UK (Despite the wishes of HMG!).
Reply To: Possible benefits how will I surviveI’m currently self employed in building sector on a long term contract in which they will drop me instantly if knew. No responsibility or commitment as I’m self employed.
Same same…
Reply To: Possible benefits how will I surviveHi Kelly what type of MD do you have, I take it your hiding it like me.
I feel like I’m playing a game at work like I’m a spy as in I’m hiding my secret. I take steps at back where people don’t see me. I climb ladders at dinner time when people are not about.
Peoples problems at work and my own now seem nothing, my only problem of thought is if I will still have the ability to walk when I wake up in the morning.
I was athlete level fitness most my life and now I struggle climbing stairs.
Reply To: Possible benefits how will I surviveSome councils have a money matters “better off” money checker to help you review what help your on now. what you can apply for under your current income and health situation. Citizens advice may also be able to do this.
With you having 2 young children you may be eligible for help with childcare. After school care.
Are you claiming PIP/DLA?
Single persons Council tax (apply online via your council or by phone)
Council Tax band reduction for disabled adapted home (this is worth asking for as it lowers a full band. If you have hand rails, wider doors or any adaptations in bathroom)
Blue Badge (via your councils web page or gov.uk)
Carers Allowance (if you have family member helping out they may be able to claim this)Google Carers center or Direct payment advice centers for your area. They will have a list of things that may help. Often a few discounts on services.
I would seek employment advice on your rights even as a contractor. If you where to disclose you are disabled your employer would have hard time justifying at tribunal if they act unfairly. you might find they can make reasonable adjustments by maybe reducing your hours which would allow you to seek tax credits yo support lost hours. ACAS on Facebook respond quickly.
Dont let having MD put you off applying for other jobs.
https://www.disabilityjobsite.co.uk/
https://www.evenbreak.co.uk/en
Reply To: Possible benefits how will I surviveIt is commendable that you are still tyring to do your work, but what happens if you cause an injury to yourself or someone else. Is it worth it?
OK, the decision was taken for me by my employer, but it was like a weight being lifted off my shoulders in the end. I couldn’t have lived with myself if I had killed or maimed someone at work, when I knew I wasn’t safe.
Reply To: Possible benefits how will I surviveI’m in the building trade as a sub contractor so no loyalty, will get dropped if can’t do job
Reply To: Possible benefits how will I surviveI work alone when I do my job so don’t effect anyone eles, I read you said you was a lorry driver so yes can understand risk of this job when it has progressed. I’m still in early ish stages
My condition is weird as some days I feel totally fine, walked 5 miles with daughter on my shoulders today. Then there are bad days getting out of bed to go to the toilet seems a challenge.
Then others where I am fitter than others down the gym.
I still pass as normal most days and even pass more capable than others most days hence I don’t want to claim any benefits as feel wrong until I’m am at that stage.
Just bad days are bad.
Reply To: Possible benefits how will I surviveMight be an idea to keep a food diary to see if anything is triggering the bad days. Caffeine can really tax muscles.
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