crippled – genuinely…but what does DISABLED medical assessor say??? DLA

Am I part of the branded lazy fat social class?
Am I robbing anyone?
to be honest I’d say so far the system is robbing me –
Of dignity
Of acknowledgement
Of my honest name
Of sanity as we get to this appointment!
Of any benefit I should be getting!

I have retired through *ill-health* 6 years ago.
I have a Blue parking Permit.

I have ( and will try to keep it brief):
1. Severe and brittle asthma- have been hospitalised many times. Have home nebuliser. Classed as one of worst in our medical practice.

2. Irregular heart beat – have had surgery to correct and AVNRT. Still have tachicardic episodes. Heart is under further investigation since can no longer walk up flight of steps without significant breathlessness. Also have been retaining large amounts of fluid.

3. Now have high blood pressure. not sure if it or heart cause pains have been getting.

4. Have constant lumbar back pain- thanks to car accident 4+ years ago. Am on a vast drug cocktail for this. Also attend a longterm pain management clinic. Initially for cortisone injections, but as these became ineffective escalated to nerve ablations- desperately painful procedures. Now these no longer effective. Am still decided what to do here – do I continue with more invasive procedures, continue to try to medicate, and hoping to discuss options with OT

5. I have an arachnoid cyst in my brain cavity. The neurosurgeon ‘feels’ that it is benign. I will ‘feel’ that its benign when I read the biopsy report. So we have to negotiate that one!

6. Chiari Malformation – this is SO misunderstood and way beyond GP level.
It has so many ongoing and life altering side effects.
Neck pain
Shoulder Pain
Sleep problems
Weakness in legs
These are the effects that I do have!
The only treatment of Chiari Malformation, is periodic release of brain pressure through surgery.

7. Headaches- these merit a comment all on their own.
They are daily, in some form or other.
Some are stabbing
Some pulsing.
Some with numbness in body
Some lasting days
Some originate in chiari pain in neck.
Some are migrainous
Some last days – permanently
Some are related to neck pain or position
Some are electrical feel
Some are accompanied by an overwhelming need to sleep- automatic and unfightable. I could sleep 20 hrs out of 24.
All of these headaches are SO invasive.
I have to get my husband to take over medication. As I have so much of a cocktail to take, my husband takes over. I forget through drug induced haze ehat I have taken and can still take!

8. Weight gain. My weight has risen by almost 2 stone in 18 months.
Is it cos of heart?
Cos of immobilty?
Cos of chiari?
Cos of sedentary life?
Cos of debiliation?
But I can assure you in it nOT cos of dietary change!
But it is a horrible, visible, and very commonly misjudged side-effects.

9. Depression- do you wonder why?
With this as a life?
I have become annually more sedentary as I gain a condition, someone gives me more drugs…
I have to deal with grieving for the life and ability (never Olympic gymnast)- ability to walk up stairs without being exhausted.
Ability to walk without pain!
Ability to go out NOT feeling gross and judged wrongly.
Ability to go into a cinema without a lumbar support.
Ability to cook a meal
Ability not to limit your families life!
The list is endless….

Yet I FAILED a DLA assessment in autumn.
Am still – as are all my doctors SHOCKED at that one.
So applied again – after being ignored at tribunal.

So tomorrow, randomly, I have managed to be chosen as one of the people who is being assessed by a stranger.
Tomorrow I have a medical assessment.
Bearing in mind that my GP has not yet been asked for her report!

How LUCKY can a girl be?

The thoughts of that assessment brings me back to the tribunal.

Not minimising in any way the ordeal of rape. But the only thing I can compare it to is a rape trial.
You go through the HELL of you ill and seriously limited life, of depending entirely on someone to do ALL for you and THEN into a room where you are treated as a liar, a criminal, a waste of time, a fit and well person pretending they need help?????

I attend:
Pain management clinic
Asthma specialist
Medical Consultant,
Orthopaedic, and

Oh…and my GP…

The capacity of these people, medically qualified to ignore that astounds me. I really despair!
There I think is the real FRAUD in benefits.
The deliberate ignoring of many many Doctor’s reviews as you cast a very unwell person aside…and convince yourself you are being just!

Not expecting a sleep tonight …not only due to pain…

H 😦



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