Paula,
I would add specifically what the meds' side effects are, checking to see
that these are known side effects, if possible.

Might also be good to make a graphic presentation of the periods when you
were hospitalized.   A person who is frequently in the hospital will not be
able to keep a job, even if during the "good times" she is capable of doing
something.

Bob

Hi Paula,

I put a new post further down with the details I sent to the DLA when I
asked for an appeal. you can use it if you want and just change the details
to accomodate your illness.

Lots of love
Mel
xxxx
Explaining my Lupus

Lupus is an auto immune, Inflammatory, connective tissue disease, which
causes the immune system to be incapable of distinguishing between foreign
bacteria and viruses, and it's own host body's tissues. It also causes the
immune system to create thousands of antibodies that misguidedly attack the
hosts body, causing the inflammation and the breakdown of tissues, and
sometimes organs. This form of disease is properly called Systemic Lupus
Erythematosus, and is the form from which I suffer. Lupus, incidentally is
the Latin version of 'wolf'. It is a chronic (ongoing) disease and is to
date incurable.

My Lupus, involves the gastrointestinal tract and associated organs, (colon,
stomach, bowel and liver), the muscles, joints, skeleton, blood and the
central nervous system (CNS).

I also suffer from:

Sjogren's syndrome - A rheumatoid condition, which causes intense back and
neck pain and the lack of saliva and other body mucus.

Livido Reticularis - very sore, veiny legs and jokingly what I call corned
beef legs.

Raynauds Phenomenon - poor circulation.

Trigeminal Neuralgia (TN) - A disorder of the Trigeminal nerve (the 5th
cranial nerve) that causes episodes of sharp, stabbing pain in the cheek,
lips, gums or chin on one side of the face.

Osteoporosis - The weakening of the bones due to the high does of steroids I
have to take daily to suppress my immune system. Due to the porous bones I
now have any slight fall will result in a fracture or possible break of the
bones.

ME - chronic fatigue syndrome.

Hughes Syndrome - also known as 'Sticky blood syndrome' or APS '
Antiphospholipid Syndrome'. This means my blood clots too quickly causing
thrombosis.

Never a day goes by without me experiencing symptoms: Intense back and neck
pain has now resulted in me wearing a neck collar for a period during the
day. Joint pain.Flash migraines.. Exhaustion following the smallest of
chores, and an inability to stand for more than a moment, or walk more than
a few yards (some days I cannot walk at all, because of the joint pain).
When I 'Flare' (as often happens most weeks) my lupus takes the form of only
what can be described as the worst possible flu imaginable, topped with hot
sweats, fevers, dizziness, inflamed gums and a mouth full of ulcers.

I also experience numbness in my limbs, ringing in my ears and a feeling of
un-realness of being outside myself looking in. Add to this the nausea,
vomiting, joint, muscular and skeletal pain.

Electric shock sensations throughout my body panic attacks, blurred vision,
strep throat, violent headaches and utter exhaustion and then you begin to
get the picture.

On top of this there are palpitations, short-term memory loss, a sort of
mental dyslexia (hard to read, write, type, concentration, think straight
and to make decisions) and also a feeling of isolation. I am unable to
hoover, iron, do gardening etc and have great trouble bathing (having my
husband wash me like one of the children, which I can assure you is very
demoralising and degrading).

I have had 5 premature births:

Neil D.O.B 09/04/90 at 36weeks 5lb 7oz

Hayden D.O.B 09/11/92 at 36 weeks 5kb 12oz

Benjamin D.O.B 20/05/94 at 33 weeks 4lb 4.5oz

Jack (sadly stillborn) D.O.B 19/08/99 at 19 weeks 8oz

Rhiannon D.O.B 20/04/00 @ 25 weeks 1lb 9oz (715grams) For the duration of
this pregnancy I bled nearly all the time from 8 weeks and was hospitalised
twice for it.

And 3 under 12 week miscarriages.

I suffered from Bells Palsy when I was 15. My left side of my face was
paralysed for approximately 3 months and I was given steroids to help.

I also suffer from Petit Mall, which is a form of epilepsy, and I can have
up to 10 episodes a day. When I have these episodes I am aware of my
surroundings and what is happening but I cannot respond until it passes.

I have what I call 'Foggy Brain Syndrome'. This is where I know what I want
to say but my fingers will not type it and my mouth will not say it. My head
feels like it has a net curtain over it and I cannot see or think clearly.

I cannot stand bright lights as these make me dizzy and nauseous. If I go
into a supermarket that has bright lights and white display units I have to
go back outside before physically vomiting.

I suffer from really bad headaches and take co proxomol to combat this, as
they are the strongest I can take without being sick. I also take warfarin
as I suffer from blood clots in the brain and the health professional
believe this is why I am getting most of my headaches

One of the most exasperating aspects of my disease is the fact that even on
some of my worst days I generally look reasonably well, which places me
firmly and wearisomely on the defensive, and tests the faith and belief of
my family and friends to the limit.

The ME coupled with the steroids I take daily cause me to suffer from
insomnia and to feel exhausted following the smallest of tasks. It is though
someone has turned a tap on - draining away all the energy within a few
moments. It also causes joint and muscle pain & weakness, so that on some
days I can hardly move, let alone get out of bed relying on family and
friends to do everything for me.

How do I cope with all of this at my age? Well, firstly I am on lots of
medication, of which some have strong side effects but none the less help to
dampen down some of the lupus activity. Then, I have to accept the
limitations and do what I can when I can, and rest between each task.
Everything else is down to positive thinking, together with a very important
understanding from family and friends. Lupus can be a very isolating
illness. Most of the time it is impossible for me to make plans, keep
appointments, socialise and generally get on with my life, so a positive
outlook is essential, and can sometimes overcome some of the lesser
debilitating aspects of the disease.

The main reason for death in Lupus patients is kidney failure and suicidal
depression is a problem since, with the Lupus, it is triggered by the
release of chemicals in the brain and no amount of 'pulling oneself
together', helps in this regard; one simply has to ride it and go with the
flow, knowing that it will (hopefully) eventually pass.

On the positive side, life can still be precious, and a small task well done
each day must be treated as a triumph. I no longer take things for granted,
and am more sympathetic to others problems.

One of the biggest frustrations for Lupus sufferers is the fact that very
few people know about the disease (most have not even heard of it including
health professionals), even though it is more common that Muscular
Dystrophy, Leukaemia and also mimics Multiple sclerosis. Many Lupus
sufferers get a diagnosis of MS before getting their Lupus diagnosis.

When I was eventually diagnosed with Lupus after having the illness for 15
years I kissed the consultant Dr Hughes at St Thomas Hospital because I
finally knew I wasn't mad then I said 'What really is lupus?' I had no idea
what this illness meant. If ever I meet new or old acquaintances they too
say 'What's Lupus?'

There really needs to be some basic knowledge put forward to the public at
large, so that people would have a basic awareness of this disease. It would
certainly make it a lot easier for us living and coping with the 'wolf'.
Lupus is a wretched disease because it is totally unpredictable,
debilitating and incurable.