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I have Fibromyalgia, OA and Depression. I am trying to raise awareness of these and other similar debilitating illnesses. Remember - They may not be able to see our pain, but YOU can feel it...and they can't prove it isnt there !!! YOU are human...YOU have rights...YOU have the right to be heard - TALK - SHOUT - DONT STAY QUIET - LETS MAKE THEM HEAR US !! All the content featured on this site belongs to me and permission for use of any of my photos, images, names or blogposts is required.

Thursday 12 December 2013

Osteoarthritis - Wear and Tear or Disease?

Having recently been diagnosed with OA and having spoken to few others who have also been diagnosed or are suspected to have it, but are being brushed aside by their GPs, I went on a bit of a trawl online.


GP's are belittling this condition to suit themselves. I can understand it to a point as there is little they can offer in the way of treatment.  Pain meds, anti-inflammatories etc are offered as a form of management and ultimately surgery may be required to replace a joint.  
However it is a degenerative disease and not just the flippant "wear and tear" that many Doctors call it, leaving their patients in the dark about what it could ultimately mean for them in the future. Whilst it may take decades to cause severe damage leading to surgery, for the unlucky few it can be as little as 12 months. 

Note that it mentions on many sites the pain levels do not always match the severity of the disease:

My pain levels were so badly elevated when my knees 1st started that I thought I was going to end up in a wheelchair.  As the condition 'settles' so does the pain but, as my mum will tell you, each time it affects a new joint those pain levels rocket again until your body 'gets used' to it.

Mum has had OA since she was 28 (she is now 67). Over the years it has affected every joint in her body. However, she has never needed surgery. Hers is a wide spread but fairly stable form of OA which she has managed in the last 10 years using supplements called Glucosamine and Chondroitin.**  
She keeps herself as mobile as she can and has to manage pain with basic pain killers, heat and rest as she also has diverticular disease which prevent her from taking strong medications (as her stomach bleeds).

**There have been studies which have suggested that neither of these supplements benefit people with OA.  I can only tell you it has helped my mum and as we are all different, in the way we respond to medications and supplements, I have mentioned it here as a suggestion that some may wish to consider trying.

 

 

The following 3 snippets are taken from UK, American and Canadian sites in relation to OA. - Please note that whilst it may be referred to as wear and tear it is also clearly categorized as a disease and is NOT found in EVERY adult, old person or fat person.



  
UK

Symptoms of osteoarthritis

The symptoms of osteoarthritis vary greatly from person to person, and between different affected joints.
For example, a joint may be severely damaged without causing symptoms, or symptoms may be severe without affecting the movement of a joint.
Three key characteristics of osteoarthritis are:
·        mild inflammation of the tissues in and around the joints
·        damage to cartilage, the strong, smooth surface that lines the bones and allows joints to move easily and without friction
·        bony growths that develop around the edge of the joints
This can lead to pain, stiffness and difficulty doing certain activities.
Osteoarthritis mostly occurs in the knees, hips, spine and small joints of the hands and base of the big toe. However, almost any joint can be affected.
Read more information about the symptoms of osteoarthritis.

 

Who develops osteoarthritis?

Osteoarthritis usually develops in people over 50 years of age and is more common in women than in men. It is commonly thought that osteoarthritis is an inevitable part of getting older, but this is not quite true. While in very old people the changes of osteoarthritis are visible on X-rays, they don’t always have related pain or problems with joint function.
Younger people can also be affected by osteoarthritis, often as a result of an injury or another joint condition.


USA

If you’ve been diagnosed with osteoarthritis (OA),  you’re not alone. This chronic disease affects some 27 million Americans. OA is characterized by the breakdown of cartilage – the part of a joint that cushions the ends of the bones and allows easy movement. As cartilage deteriorates, bones begin to rub against one another. This can cause stiffness and pain that make it difficult for you to use that joint. Osteoarthritis can also damage ligaments, menisci and muscles. Over time OA may create a need for joint replacements. 

There are two types of OA – primary and secondary. Primary osteoarthritis is generally associated with aging and the "wear and tear" of life. The older you are, the more likely you are to have some degree of primary osteoarthritis. However, not everyone gets it – not even the very old. That’s because OA is a disease, and not part of the normal aging process. Secondary osteoarthritis, in contrast, tends to develop relatively early in life, typically 10 or more years after a specific cause, such as an injury or obesity. 

Osteoarthritis occurs most often in knees, hips and hands.  Other joints, particularly the shoulders, can also be affected. OA rarely affects other joints, except as a result of injury or unusual physical stress.

The pain and stiffness of osteoarthritis can make it difficult to do daily activities including your job, play sports or even get around with ease. That’s why it’s important to learn all you can about this disease, how it affects you and how to live with it – a process called self management.


CANADA


The word arthritis means inflammation of the joint ("arthr" meaning joint and "itis" meaning inflammation). Inflammation is a medical term describing pain, stiffness, redness and swelling.
There are more than 100 types of arthritis. Arthritis is among the leading causes of disability in Canada, affecting nearly 4.5 million people of every age, physical condition and ethnic background.
Osteoarthritis (OA) is the most prevalent kind of arthritis, affecting more than three million Canadians. It occurs when cartilage (the tough elastic material that covers and protects the ends of bones) begins to wear away. Cartilage is an essential part of the joint; not only does it act as a shock absorber, it also enables the joint to move smoothly. With OA, the cartilage erodes, eventually resulting in pain, stiffness, swelling and bone-on-bone movement in the affected joint.
OA will usually cause the affected joints to become stiff in the morning, but the stiffness usually lasts about 15-20 minutes. As the day progresses and joints are used, the pain and discomfort can get worse. Resting the joints tends to provide relief. The joint may become inflamed with pain, warmth and swelling. The pain and stiffness causes the joints to be used less often and the muscles surrounding the joint weaken.
As the cartilage wears down over time, the joints may slowly become bigger (boney) as the body tries to heal itself. With severe OA, the cartilage may wear away entirely and the bones may rub together ("bone-on-bone"). When this happens, the joints become more painful.

There is also a rare type of osteoarthritis called Inflammatory OA. This is a more severe, rapidly progressive, multiple joint OA that is associated with more stiffness in the morning and swelling in the joints with warmth and redness. This type of OA is more difficult to diagnose because it is often confused with rheumatoid arthritis (RA). A rheumatologist can help make the correct diagnosis and suggest treatment for Inflammatory OA.

Monday 8 April 2013

ESA and the neverending confused state I live in.

So, its 10 weeks today since I received a letter from the DWP telling me they had considered my ESA appeal and had reached a decision in my favour.  I confirmed with my WRAG Job Centre Advisor that I had in fact been placed in the support group for 12 months.

I've heard nothing since.  The letter stated I would get further details about my award (if there was any monies owed) within 10 weeks, and that the delay was due to THEIR backlogs. (quel surprise)

10 weeks later - still heard nothing, still don't know if the 12 months in support group started from the original ESA decision date last August, or from the appeal decision date in January.   No idea if there is any outstanding monies but suspect not as my ESA was "topped up" as I had previously been on topped up IB due to long term sickness. 

Also, if they have decided I am suitable (too sick to work) to be in the support group, and based on the original WRAG assessment which stated in the report that they saw NO chance of me returning to any sort of work within 2yrs ... what's going to happen when the 12 months are up?  Its only half of the term stated and Im still going to be too bloody sick to work. I have to assume that this will start all over again, with another form, another appeal and more stress.

My only comfort during this time is that my DLA re-award in Sept last year was an indefinite one, which will see me through until 2015 before I face the dreaded PIP assessment.  I know I wont pass that using the current criteria, as I don't use a wheelchair and can walk, albeit in constant pain, more than 25 meters.


I would like to acknowledge the fantastic help I received from Nick (Twitter: @mylegalforum) and the Mylegal (now ilegal.org.uk) forums for his support, advice and letter writing skills during my ESA appeal. I firmly believe that without him, I would have still been battling the appeal and would have probably faced a physical tribunal and / or been denied and forced to participate in the WRAG process at the Job Centre.

Friday 22 March 2013

Its been a while:

I havent blooged in a while.  My brain has been so fogged up.

However, I was posting in a private support group this morning and wanted to share with you my feelings.

For the last 3 days I have been an emotional wreck.  I struggle with Major Depressive Disorder (and have done for 18 yrs) and there are times when I can spend an entire day sobbing for no reason.

Well, Yesterday was one of those days. I was utterly exhausted, my eyes were burning and I swear I was dehydrated I had cried so much.  I was struggling with a few issues but I couldn't understand how they could be upsetting me so much.

The this morning the penny dropped.  I was talking to my Hubby on the phone about it and he said, "Why were you so upset?" 

DING........

I needed to cry. I needed to be weak, vulnerable, feel sorry for myself and let it all go.  WHY? 

We spend all our lives being STRONG!!  We are asked how we are and we say, "Fine thanks".  Not because we are fine, but because we are sick of hearing ourselves moan about why we are NOT fine.  We put on a brave face, smile through the pain, push ourselves to our limits and beyond, just so that those around us don't worry about how bad we really are.

Remember, having this awful condition changes your life. We grieve for the life we used to have and struggle to see the positive in the life we have yet to come.  Depression is a part of it. Pain is a part of it. Tears will fall.  We are not WEAK. we are STRONGER than we shoulder ever have to be and sometimes we simply need to let go.

Sending out Gentle Hugs to each and every one of you xxxx

Wednesday 13 March 2013

Benefits and Work - An E-mail Update

I know many of you subscribe to the Benefits and Work e-mail (and some pay the membership subscription) but for those who don't, here is an update on the DWP and benefit issues.

TODAYS E-MAIL READS: 

As a minister misleads charities about who will be eligible for the enhanced rate of PIP mobility, the prime minister misleads MPs about who will be exempt from the bedroom tax and the DWP tries to mislead everyone about the rise in the number of DLA awards, it’s clear that the coalition is having problems selling its ‘welfare reform’ agenda.
Add to this today’s multiple u-turns on the bedroom tax, top level staff being ditched over at Universal Credit (UC) HQ and the rumours that most of the IT contractors have stopped work on the project, and it seems likely that the problems are more than just presentational.
Not sadly, that claimants can draw much comfort from this, as it’s equally clear that the DWP intend to plough on regardless of the misery and chaos they will be heaping on sick and disabled people.
But, while charities content themselves with writing stiff letters, claimants are not going down without a fight as they take to the courts to try to overthrow some of the worst aspects of the current changes.

PIP ENHANCED MOBILITY
According to disabled people’s organisations who were at a meeting with Esther McVey on 28 February, the minister was very clear that not only would claimants who cannot walk more than 20 metres get the enhanced rate of the PIP mobility component but that:

“the enhanced mobility rate of PIP will be paid to those disabled people who cannot stand and move up to 50 metres unaided or aided safely, reliably, repeatedly or in a reasonable time period.”
This is, of course, completely at odds with the law, which states that people who can walk between 20 and 50 metres will only get the standard rate of PIP.
Disability Rights UK, who were at the meeting, wrote to the minister (external link) on 1st March asking for clarification, but are still awaiting a reply.

Meanwhile, rather than just writing strongly worded letters, disabled claimants have taken to the courts.  Following an appeal via Benefits and Work, campaigners have gathered sufficient disabled candidates to mount a legal challenge (external link) to the reduction from 50 metres to 20 metres for PIP enhanced mobility.  
We hope to have further news of a judicial review in the next few days.
In another cause for concern for some Motability customers, new rules make it much harder for disabled claimants to be driven by a personal assistant who is a foreign national  (members only).

MISLEADING DLA STATISTICS
As the DWP try to fan the flames of prejudice against claimants, Disability News Service has discovered that they issued statistics which showed that DLA claims had increased between February and May 2012, but failed to mention that the number of working age claimants had actually gone down.  Given that one of the main justifications for the introduction of PIP is an allegedly out-of-control increase in claimants, the fact that it is only awards to children and the elderly, who are not eligible for PIP, that are increasing is something the DWP would much rather nobody noticed.


MISLEADING BEDROOM TAX STATEMENT
David Cameron, meanwhile, utterly misled MPs at last Wednesday’s Prime Minister’s Questions by claiming that ‘anyone with severely disabled children is exempt’ from the bedroom tax.  In fact, a Court of Appeal case that would – against the government’s wishes -  prevent some carers of disabled children from having their housing benefit cut where their child is unable to share a room for medical reasons, is being challenged in the Supreme Court by the DWP, who are trying to ensure that carers of disabled children do lose out.  **
 The DWP have even advised local authorities to suspend the part of a housing benefit award that relates to a spare room, until the case has been decided by the Supreme Court.  There’s more details from CPAG (external link) and from Channel 4’s Factcheck (external link).

**Stop press:  the DWP have today withdrawn their appeal to the Supreme Court, meaning that local authorities should allow an extra bedroom for children who are unable to share because of their severe disabilities.
The government did announce a partial climb down on the bedroom tax today, by allowing foster carers and soldiers serving abroad but planning to return home to be exempt from the bedroom tax.  But no such exemption is to be introduced for disabled people, many thousands of whom are expected to lose out under the changes due to be introduced in April.

Meanwhile disabled people are fighting back, with the We Are Spartacus group having mounted a legal challenge against the bedroom tax which had its initial hearing on 5th March.  The judge gave the DWP 14 days to come up with reasons why he should not allow the case to proceed.

UNIVERSAL CREDIT IN DEEP TROUBLE
Work and Pensions minister Mark Hoban has denied claims that contractors have stopped work on the massive universal credit IT project.  
But the DWP have already admitted that, when the pilot goes live in April, at least some of the claims will be processed with a pen and paper rather than using the multimillion pound computer system that is still allegedly on time and on budget.  They have also greatly reduced the range of claimants who will take part in the pilot.

In another sign that things are not going well, UC director Hilary Reynolds has ‘stepped down’ just months after taking over the post.  Her job is now being covered by David Pitchford, the trouble-shooter recently brought in as chief executive of the project.
With so few claimants involved in the pilot, there is the beginnings of a possibility that the whole UC fiasco will be allowed to drag on until the election is over before being dropped, either quietly or with great fanfare depending on who wins power.





PLEASE NOTE ; SOME LINKS ARE MEMBERS ONLY PAGES. THIS IS THEIR CURRENT OFFER:

MONEY OFF ANNUAL SUBSCRIPTION - ENDS MIDNIGHT FRIDAY
If you’re not already a member, join the Benefits and Work community (open access) before midnight on Thursday and you can get £3.50 off the cost of your annual subscription. Just type the following code into the coupon box when you pay:

54729
to get an annual subscription for £15.95, down from £19.45.

Thursday 17 January 2013

DLA to PIP


PIP delayed for indefinite DLA awards


The timetable for moving working age disability living allowance (DLA) claimants onto personal independence payment (PIP) has been put back by two years, until after the next election, for people with indefinite or lifetime awards of DLA.


From April 2013
The new timetable will begin with a pilot from 8th April 2013 for new claims to PIP in the North West and part of the North East of England. Postcodes affected are:
CA, CH (except CH5, CH6, CH7 and CH8), LA (except LA27, LA28, LA62 and LA63), CW, FY, L, PR, WA, WN, BL, DH, DL (except DL6, DL7, DL8, DL9, DL10 and DL11), M, NE, SR, and TS (except TS9).
From June 2013
From June 2013, all new claims from anyone aged 16-64 will be for PIP instead of DLA throughout  the whole of Great Britain.
The only exception will be renewal claims from a fixed term DLA award which is due to expire before the end of February 2014, where the renewal claim will still be for DLA rather than PIP.
From October 2013
From October 2013 the following DLA recipients will begin to have to claim PIP:
Children turning 16 will have to claim PIP when their existing fixed term award is coming to an end.
People reporting changes of circumstances which might affect their rate of payment, such as an improvement or deterioration in their condition, but not issues like going into a care home or hospital or changing address.
People with a fixed-term DLA award which expires from the end of February 2014
Anyone who chooses to make an application for PIP, including people who have a fixed-term or indefinite award of DLA.
From October 2015
From October 2015, everyone still getting DLA will have to make a claim for PIP.  Claimants will be selected randomly rather than by area or age, although the DWP say that they will “invite claims as early as possible from recipients who have turned 65 after 8 April 2013, when PIP was first introduced.”
The DWP does not now expect to complete the reassessment of all existing DLA claimants for PIP until March 2018.
THANK YOU TO http://www.benefitsandwork.co.uk  FOR THIS INFORMATION
Also:
The DWP has finally revealed that personal independence payment (PIP) will be paid at the same rates as the equivalent awards of disability living allowance (DLA).
The daily living component will be paid as follows:
Standard rate:  £53.00
Enhanced rate:  £79.15
The mobility component will be:
Standard rate: £21.00
Enhanced rate £55.25