The Little Things...

Sometimes it is the little things that get you through the day.

As I get older, my condition declines and I often have days where I wake up tired, my muscles don’t want to work and getting through the day is a fight.  Living off of sheer will-power…!

It is on these ‘will-power’ days that the little details are so important and one such detail for me is my Google Calendar.

The tiredness has definitely increased since I’ve finished work and it is difficult to distinguish between feeling tired and lack of motivation.  Is the reason I find it harder to get up in the morning because I really feel tired or is it just because I know that I do not have to go to work?  No longer working, I can honestly say that I am never bored.  There is always something for me to do, be it cross stitch or reading or visiting with friends, going to the cinema, watching Syfy or spending time with my family.  However my Google calendar has become a very important part of my daily life.  This is not because I have so many plans I have to write them down for fear I will forget them.  It is because I want to feel that I have lots to do in my life.  I know that my life is worth while and (I hope!) I am a valued member of my family and I have some very good friends who want to spend time with me and I want to spend time with them.  However my Google calendar is a visual recognition of this.  It not only reminds me what I’m doing and when but also reminds me that I do have things to do, there are things for me to get up for and I have purpose in my life.  It provides written proof that I have ‘things’ to motivate myself for.

I firmly believe that although, without my Google calendar, I would be living my life exactly the same, the way in which I use it definitely improves my quality of life and my confidence.  Even though keeping track of what I’m doing is such a small thing, to be able to see exactly what I have done and what I have got to look forward to is such an important part of my day and keeps me motivated.

Tiredness can come in different forms, mental and physical and it is physical tiredness that affects me.  Unfortunately there is nothing I can do.  There is no medication and sometimes no amount of rest will make me feel any better, however the one thing that I hang onto on the bad days is that there will be good days.

Sometimes the small thing that gets you through the day can be a lifeline.  The obsessive compulsiveness of a calendar, a partner, watching your favourite film…their importance should NEVER be underestimated!

Care and Care Agencies

At the moment I am happy with the Care Agency I have.  Which is actually quite a big deal.  Having to have physical assistance with even the smallest task is not a very dignifying process and so having the right person/personal assistant/carer, or whatever you want to call them, can make all the difference.

I hate having to have care, hate it hate it hate it...!  Its undignified and embarrassing.  However if you've got to lump it whether you like it or not, it might as well be good care...

I have a lot of physical assistance with getting in and out of bed, dressing, showering, food preparation and other general day to day tasks – picking up things, reaching, feeding/cleaning my tortoises etc… In short without the assistance of others I could not survive but although that sounds like a depressing thought, it is not.  Having care is hard but it is something that you can learn to get on and deal with and live a productive life.

I have had care throughout my entire life, in differing forms.  As my degenerative condition progresses, the amount of help I need increases.  My experiences with care agencies did not happen until my early twenties, when I was no longer able to transfer independently from bed to wheelchair or dress my lower half.

During the time that I have needed care I have undertaken several university courses and worked for 10 years as an administrative assistant.  I have a good social life and when I was 29 I passed my driving test (I am unable to dress myself but I am able to drive a car, weird huh!).  So needing care is not the end of the world.

To receive care, I have a budget that the government gave me after an assessment by social services.  I then use my budget to pay for my care agency.  My local social services department looks after my budget for me.  However I know that you can receive this budget into a bank account yourself and use that on a care agency or other needs, this is called direct payments. Here is a good website to explain this: DP Link

A few years ago I did use direct payments.  The money was paid into my bank account on a monthly basis (a separate account, not my current account), the invoices from the agency would come to me and I would pay them using this money.  At the end of the month I would also fill-in a form for social services detailing what care I had, had and what I had paid for.  I did this quite successfully for about year and then things started to go wrong with the care agency I was using.

They started sending me a carer I was not happy with.  I didn’t feel that she could undertake the job safely or to my satisfaction and I resented paying for the service.  I looked around to a few more care agencies but was unsuccessful in finding one who could take me on… And so I was forced to go back to social services and I asked them to take over my budget and find an agency for me.  I still get to approve or disapprove of an agency and still maintain ultimate control, I just don’t have to deal with the money any more.

So why do I use an agency?  I am a creature of habit and my routine does not change much on a weekly basis, this makes my care rota quite easy for an agency to cover and using an agency means that if my regular carer is off sick they will replace her with little stress for me!!

The Care Quality Commission is in charge of regulating and reviewing care providers and can be helpful when looking for information about agencies or other providers: CQC Link

I do not have a lot more to say on this subject as I know that my knowledge is kind of limited because I do not use direct payments and I go to a care agency rather than having personal assistant/s (PA).  I would like to find out about having personal assistants and I don’t think there is a lot of information available on this.  I would be really interested in hearing from somebody who does have PAs, how they advertise to get a PA, how they organise their care in a rota around what PAs they have and what tasks they can get their PAs to undertake.  Particularly as this might be the kind of care that I require in the future or if I decide to take on directs payments again.

On a final note I will say that if you are in any doubt about any of the care that you receive, please do not hesitate to tell anybody about this, a friend, relative, social worker, occupational therapist, police, neighbour, absolutely anybody.  You do not have to put up with any potentially harmful or abusive care.  There is good care out there!!

Please contact me and we can then expand the website to include more information.

Grants and Concessions

There are no two ways about it.  Having a disability sucks.  No matter what form your disability takes, there will always be some way in which you are disadvantaged.

HOWEVER

There are some grants and concessions that you can apply for that are very cool and will go some way to easing your burden!

Here are a few that I have taken full advantage of:

(please check relevant eligibility criteria before you apply)

Ø     Cinema Passes – carer/Personal Assistant (PA) goes free - with the high price of the ticket to the cinema these days, if you have to have someone with you it is even more costly and so be sure to apply for a Cinema Exhibitors Association (CEA) Card at CEAcard Link

Ø     Bus passes - my local council offers a free bus pass to wheelchair users and those with physical disabilities.  You can also have your pass endorsed so that a PA, if needed, can go free as well.  It is definitely worth checking out your local council website to see if there is any support such as this in your area.

Ø     Theatres - a lot of theatres will sell a disabled persons ticket with the PA ticket half price or (sometimes if lucky) free!  This can drastically reduce the extra price of going out and needing to bring a PA with you.  I have been to a lot of theatres in London and seen a lot of shows.  My advice to anybody thinking of doing this is, brilliant, do it and have a fantastic time!  However definitely check out the facilities in each theatre before you book anything to avoid any nasty surprises!  I intend to write more on this subject at a later date…

Ø     Disabled facilities Grant (DFG) - this is basically money that the government set aside for disabled people to adapt their home with.  To access the DFG you need to go through your occupational therapist which means contacting your local social services offices and having someone allocated to you.  The process can be long and complex, bur worth it in the end.   To find out more here is a good website: DFG Link

Ø     NHS wheelchair grants - having been lucky enough not to have gone through this system since I was a little child, I not have a lot of information to tell you!  Basically, taking into consideration your needs, you can obtain either a wheel chair or part payment to the cost of the wheelchair through assessment processes with your local wheelchair clinic – information here: NHS Wheelchairs Link

If you have used any of these and would like to share your experiences please contact me.  Likewise if you use any grants or concessions that you would like to share that I have not mentioned yet email me and I’ll include it.

Working, Money, Benefits and Atos interviews

I finished work last year after 10 years as an Admin Officer at a Magistrates Court.  I liked working, liked earning my own money (be it a modest wage) and liked being able to say ‘I have a good job’. So the decision to stop working due to my disability was not an easy one to make.

Because my condition is a degenerative one, as well as deciding whether I could cope with the work considering my current condition, I also had to take into account my future condition.  I.e. do I stop now while I still have the ability to do some things and enjoy my life or do I just want to keep working until I can’t do anything any more…

The decision for me was made slightly easier by the fact that I was finding it more and more difficult to keep up at work.  My colleagues and even those I had trained found it increasingly easy to surpass me and although my bosses did offer me concessions and (after some persuasion) adapted the workplace for me as fully as they were able to, I was still very aware that I could no longer perform to the standard that I wanted to.

So after 10 years that I decided that maybe it was time for me to stop struggling and to do some of the things that perhaps I haven’t been able to do whilst I have been using all of my energy working.

My first worry about not working was money.  If I no longer have any wages where is my money going to come from?

I have two forms of income:

Disability Living Allowance (DLA) and

Employment Support Allowance (ESA)

I have been receiving DLA all my life, although I am aware very soon this will be changing to Personal Independence Payment (PIP).  Anybody making a new claim for DLA would now apply for PIP instead here is quite a good website that explains it all. DLA Link

the change from DLA to PIP is a source of anxiety for a lot of disabled people, myself included.  It can be argued that the government have not been very clear on setting out the guidelines and criteria that will be looked at.  However the government have tried to reassure people that the genuine disabled person will have nothing to worry about.  I guess that time will tell whether that is true!  I will be sure to tell you about my experiences as soon as I am changed over…

I had to wait to apply for ESA until I’d finished work and I had received my last wages. ESA divides people into two groups.  The work group, which sounds a bit like jobseekers allowance (JSA, where you claim benefit whilst actively trying to find employment) and the support group, which is a bit like a mixture of income support and severe disablement allowance.

  I was lucky enough to be placed in the support group without having to have an Atos interview.

Here is quite nice site that explains about ESA: ESA Link

The dreaded Atos interview…

It is my understanding that (sometimes) when you claim for ESA, to decide which group you are placed in, either the support group or the work group, you are required to attend an interview with Atos health care.

For the new PIP disability benefit you will be required to have an ATOS interview every three years.

Atos health care website: Atos Link

ATOS health care do not have a brilliant reputation for their disability assessments when you speak to disabled people directly.  Disability is completely subjective and there is such a wide range of disabilities that is difficult to imagine that one healthcare service would have a complete understanding of them all.

I have had one ATOS interview and that was a few years ago now, to assess my disability and work capacity in order for my employers at the time to get an idea of how much I could and couldn’t do and how much to adapt the workplace by.  I was less than impressed with the resulting report, which was just too general and too vague to actually say anything.  My employers decided that they knew me and had a better understanding of my condition than my assessor.  So I hope that there is been an improvement in the assessments especially because a lot of stock is going to be placed in them.

I have a very obvious physical disability and as much as I hate that sometimes (actually most of the time) perhaps looking like a crip will help me out on this occasion!  I worry about people with hidden disabilities and hope that the assessments will also properly take into consideration the difficulties that come along with these types of disabilities and not unduly disadvantage anybody.  My advice to anybody attending these interviews is to take literature about your disability with you.  Any leaflets or articles concerning your disability and how this might affect you could help you explain about yourself.  The Internet is a great place for obtaining this type of information.

Good luck and be sure to let me know your experiences…