I’m not sure if I’m posting in the right place but here goes. Diagnosed with MS and on Avonex once a week self injecting. Work full time in a physical job, with a family to provide for. We privately rent. We do not recieve any financial support as I earn around 30k a year. I am struggling post injection, I’m only 39 and I’m beside myself with worry as I can’t afford to reduce hours at work. I do overtime to make ends meet. How in the hell Do people cope? The stress is aggravating my MS I’m sure. Will impact of avonex slowly improve? I’m not sure why I’m posting, some support or reassurance I think. All the best.
Hi sorry to hear off your position talk to your ms nurse regard the Avon ex it should settle down .
Your financial position talk to welfare rights there might be financial help available for you
And get time to relax try not to stress
have you told your employer that you have ms?
they have a duty to make reasonable adaptations for you.
look at the Disability Discrimination Act 2010 and get advice from CAB.
Access to Work can help by looking at your work station and listening to how ms is adversely affecting you at work.
they will then work with your employer suggesting reasonable adaptations.
they can also provide taxis to and from work.
take hillybilly’s advice on board too.
it’s difficult to claim for support when you never have before but that is what the welfare system is for, what you paid in for all your working life.
make sure that you look at the legislation.
Hello,
I suggest you start with CAB and MS nurse because of confidentiality, and learn what your rights are. RE employer tread carefully cos some will move you sideways then out.
Good luck
Patrick
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Hi
i was on Avonex and the side effects day after injection did diminish the longer I was on it. There is light at the end of the tunnel
Hi
All the beta-interferons are now rather old and have the side effect of flu like symptoms. This is why a lot of people take the drug on a Friday night, so they have the weekend to recover from the side effects. But if you have children, that’s not really going to help much as you’ll only have the weekends to spend time with the family, so that’s probably as fatiguing as work!
You could talk to your MS nurse about maybe changing to a different drug. There are other drugs besides Avonex that you might tolerate better and in the process increase the relapse reduction rate. (Eg Tecfidera.)
I’d probably try this route before making changes at work, since if you can alter things so you’re not feeling quite so crappy, you can save the Access to Work etc for later, in case a change of drug doesn’t help matters.
Obviously talking to the CAB about potential benefits might help take the strain from you a bit. But starting to make a claim for eg for PIP might just add to your woes. Have a look at Personal Independence Payment - Citizens Advice to see if you think you might qualify.
Best of luck.
Sue
Thankyou all, I’ll certainly speak to my MS nurse. I’m due to see him in a few weeks. I work weekends also, so the prospect of having weekends clear for family has never been much of an option. Work are being flexible in allowing me to swap my day off to the one I need to recover the side effects. I’m just concerned going forward that this isn’t manageable long term. I’ll look into your suggestions. Thanks for your support all.
Hi
Do you claim DLA or PIP? If you do, you could claim for the disabled component of working tax credits. That would mean you could reduce your hours but not be out of pocket (it’s what I did).
Dan
Hi Dan I don’t, We don’t claim anything. It’s what’s making me worry. Amy reduction in my salary and we would sink. I wasn’t aware I could as still working.
Hi again
PIP (which replaced DLA from which claimants are gradually being migrated), is a non means tested benefit. This means it’s ‘needs based’ rather than income based. It makes no difference what you earn or how much money you possess. It is solely based on your needs as a result of illness or disability. It stands for Personal Independence Payment.
PIP is split in two and you look at each type individually. The first component is for Daily Living, and this is all about how you manage your needs for care; it includes any adaptations you need to use to do things which an able bodied person would manage without such equipment. So things like shower chairs, grab bars, raised loo seat, implements to help you wash independently, or indeed any help you need in the bathroom. Also bed rails, stand aids, leg lifters, anything in the bedroom. Riser recliner chairs, raisers for furniture to help you stand up, specific equipment to assist you just to live. Then there’s kitchen equipment, perching stools, or bar stools to sit at a counter to do any cooking tasks, special equipment for weak hands, special cutlery for eating, of of course any help you require to do any of these things.
The second component is about Mobility. It relates to the distance you can walk with or without aids. Two distances are important, 20 metres and 50 metres. If you are unable to walk 50 metres you’d qualify for the basic rate of PIP for Mobility, and if 20 metres, it’s the enhanced rate.
When it come to any task, but particularly walking, the test is whether you can do it safely, reliably and repeatedly. So if you stagger and/or are at risk of falls, or need a long rest before doing it again these are all part of the assessment.
Each of the components has two rates, basic and enhanced. You score points for each component based on a series of ‘Descriptors’ and within each Descriptor, a range of Activities. If you score 8 points for each of the components (individually) then you qualify for the basic rate, and 12 points gives you the enhanced rate.
For the self test to see whether you’d qualify, look at the link to the CAB site I included above.
Once/if you qualify for PIP, you can also look at Disabled Persons Tax Credit.
You may not qualify for either rate now, but it’s always worth keeping an eye on disabled benefits for changing needs in the future.
If you think you might qualify, either look back at the many posts there have been on the subject for more guidance on how to go about proving your needs, or repost and we’ll do our best to guide you to the best way of making claims and websites which will help.
Sue