National Arthritis Week with Catherine

Catherine Manning, our Disabilities Liaison for London, talks about National Arthritis Week.

If you weren’t aware this week is National Arthritis Week. I’ve had arthritis since I was 12 years old. I have 3 forms of arthritis and a number of other conditions thrown into the mix just to make life a little more interesting and challenging.

Arthritis is not just an old persons disease. It affects any age at any time. If I had £1 for every time someone has said “oh you’re very young to have that ” I’d be a rich woman. Another misconception is that it only affects joints. Rheumatoid Arthritis can and does affect joints, lungs, lining of the heart,connective tissue, eyes . I have RA in all joints and nodules in my lungs caused by inflammation.

Living with arthritis affects every part of my life from waking to going to sleep at night. It causes pain, swollen joints, extreme fatigue then you add the side effects of the medication into the mix…..nausea, sickness, thinning bones, weight gain. We take medication to counteract the side effects of the medication!

My life is made up of countless hospital appointments, physio and blood tests. My hubby helps with my day to day care. ….washing, dressing, cooking, cleaning. He’s an amazing gentleman but our relationship changes when he became my Carer instead of my lover. I know he’s worried and frustrated too and there’s not enough support for carers out there. Our wedding vows “in sickness and in health” are so true.

The hardest thing is to watch my 8 year old struggling and be in pain. He’s going through tests as it’s strongly suspected that he has Juvenile Arthritis. I can relate to everything he is feeling from worry to frustration to anger.

I had a wonderful job in the city but 2 years ago my contract was terminated because I couldn’t sustain my role due to pain, fatigue and hospital appointments. If I do something one day like taking the kids to school i then spend the rest of the day recovering.

Things that you take for granted, I struggle with such as holding a pen to write, cutting up my dinner, holding a cup of tea, brushing my hair, getting dressed. The list is endless but I won’t give up, arthritis will not win.

My name is Catherine and I have arthritis, arthritis doesn’t have me.

#nationalarthritisweek #nras #arthritisresearchuk

Catherine – District Disabilities Liaison for London

Happy Feet with Muddy Podiatrist

As June is Feet for Life month, Jenny has asked me to write a guest blog
on foot health for all of you lovely lot. I am currently training to be
a podiatrist and will quite happily ramble about feet to anyone who will
listen. I was told I would have a captive audience so grab a cup of tea
and a biscuit, make yourself comfortable and we’ll begin. Please feel
free to stop me if I’m still going next Tuesday.

It’s quite difficult to pick a foot health topic that will be relevant
to every member of our disability community so I am going to go broad
and simple.

Look at your feet. If you don’t have feet, look at your legs, stumps,
knees or whatever lower extremity you have. Really look. What does your
skin look like? Any cuts or bits of hard skin? Has that mole always been
there? Do your nails need a trim? When was the last time you had a
really good look at your own feet?

If you have diabetes, I’m really hoping that you’ve had at least a
cursory look in the last 24 hours. Diabetes causes damage to nerves and
blood vessels, meaning that if someone with the condition gets a cut on
their foot not only might they be unable to feel it due to nerve damage,
but the lack of blood supply also means their body is unable to heal it
effectively. I won’t put you off your garibaldi by telling you exactly
what happens if a diabetic foot ulcer is left untreated, but believe me
when I tell you it’s a scary prospect.

“But my insulin levels are fine!” I hear you cry. “Why am I
staring at the little piggy who went to market?”

Well, dear reader, there is an awful lot that can go wrong with the
lower limb if we don’t look after it properly, and the sooner you spot
any problems the greater the chances that they will be resolved quickly
and easily. Most people are familiar with how to check for breast or
testicular lumps and try to check on a fairly regular basis (I recommend
finding a buddy and checking each other), and checking your feet should
be a similar routine couple of minutes out of the month (buddy system
optional depending on your preferences).

So what did you see when you had a look?

I would imagine there would be a bit of redness in places. Probably
around the one or two littlest toes, and maybe around the big toe.
Although most people have this, it is not actually considered normal.
It’s a sign of badly fitting shoes, but as the market is filled with
badly fitting shoes there’s not a lot we can really do about this.
Just keep an eye on this for now, and seek further advice if it becomes
painful, swells, oozes or smells.

I suspect there will also be some hard skin in places. Again, not
considered normal but an unfortunate part of modern life. If it’s not
causing you any problems then we’re not going to worry too much. If it
ain’t broke, don’t fix it. If it’s getting uncomfortable or
splitting it might be time to get some further care though. Try to see a
podiatrist or a chiropodist (they’re the same thing, just use
different words to confuse people) if you can, but a doctor or
pharmacist may be able to help depending on the severity of the problem.

How is your skin looking? Is it soft and supple, or looking a bit dry?
The skin is our first line of defence against bugs and infections, so we
want to keep it in its best possible condition. And when you think that
your feet are down there on the ground with all the dust and bacteria
you realise just how easy it is for something to sneak into a patch of
flaky skin and BAM! Itching and pus and mushrooms and all sorts of
wondrous delights living under your toenails. It’s not just vanity –
moisturising saves lives, people! Or at least prevents another course of
antibiotics. But that’s important too.

And then there’s the one that everyone forgets – moles. When people
get a mole that looks a little iffy on their back the first thought is
to get it checked out with the doctor. Somehow, we seem to forget about
our feet. It’s the same with sun cream. If we’re going out in the
sun the factor 50 gets smeared all over arms, legs and backs, but how
often do we forget about the tops of our feet? If you’re wearing
sandals in the sun that could be a recipe for a very painful few days,
not to mention the same risk of sun damage as the rest of your skin.

It’s particularly tough to think feet if you’ve got a physical
disability that limits your movement. They are all the way down there
and tend not to complain too loudly. And you know what? Most feet are
generally pretty well behaved. The better you look after them, though,
the better they will look after you. I’m not asking for miracles, just
a quick once over every now and then so that you can spot any problems
in their early stages. After all, the earlier you catch anything going
wrong the sooner it can be dealt with and the less chance there is of
you needing more meds or expensive treatment or worse.

If you really can’t reach to see, there are loads of options
available. Ask your doctor if he can have a quick look next time
you’re seeing him. If you have a partner, carer, friend or family
member who helps put your socks on, maybe they could just have a check
every now and then. If you’ve getting your toe nails cut, ask whoever
is doing them to just have a look and let you know if there’s anything
that looks off. If you end up barefoot feeling the grass between your
toes at a ritual some time, ask your fellow participants if anyone is
feeling bold and would be willing to have a goosey while you’ve got
your shoes off already.

Just be wary about asking that one slightly odd neighbour. You know the
one I mean. The one who seems just a little too invested in your foot
health. Unless you’re into that kind of thing of course. In which
case, fill your boots.

Happy Feet for Life Month.

Muddy Podiatrist.

So, is your moot disability-friendly?

So, is your moot disability-friendly?

And no, I’m not talking about wheelchair access. Well, that’s a part of it, but there’s so much more. And no, we can’t always get it right, especially with limited choices of venue. But that shouldn’t stop us from trying. In a lot of ways, it’s often not so much about actual arrangements as about having an attitude of concern and inclusiveness.

Firstly, are there physical barriers to people attending? People with disabilities have, obviously, very differing needs and conditions, so there’s no “one size fits all”. There are people in wheelchairs who can do slopes but not steps, and people with balance difficulties who can do steps but not slopes. Is there Blue Badge parking nearby (this includes not only designated bays but also permission to park on double yellow lines so long as this does not cause an obstruction)? Are the chairs adequately comfortable for someone who might have difficulty sitting upright for too long? Are the lighting and acoustics good? If the answer to any of these questions is no, is there anything that can be done to help? And is all this information – or at least the most important bits – available online somewhere?

Then there may be emotional or cognitive barriers, which are often the more difficult ones to spot. If a new person has social phobias or anxieties, would they feel encouraged to ask for support such as meeting someone from the moot one-to-one first, before coming along to the moot itself? If they have particular needs, is there a space where they can ask for what they need? Is the moot tolerant of differences such as autism or learning disability? Are there assumptions that everyone is literate? If someone is too shy to speak out in a moot, could there be a go-round at the end specifically for people who haven’t spoken to have their say? Or use a talking stick? And not everyone likes to be hugged: many people, for reasons ranging from neurodiversity to a past history of child sexual abuse really don’t like to be touched – how would you make space for it to be ok for them to say so?

Disability, of whatever kind, has a tendency to restrict people’s ability to work, and therefore to be financially resilient. Many disabled people either can’t drive or can’t afford to run a car. Is your venue on a bus route, and if so, does the moot finish before the last bus runs? Would it help if someone offered them a lift home? If you’re in a pub, is there an expectation that everyone buys their own drink?

Part of the problem, it seems to me, is that humans, by design, think in categories. There’s normal and there’s not-normal. When someone is a wheelchair user, it’s fairly obvious what their restrictions might include. But when disabilities are invisible, the onus gets put on the person themself to explain their needs, which is easier done in an atmosphere of welcomingness, of inclusiveness, of sensitivity to difference and in individual needs.

I’m aware that this piece is really only a quick skim through these issues. If you can think of helpful suggestions that I’ve missed, please add them in the comments below, and I’ll see if I can collate them for a future piece.

Sylvia Rose
District Disabilities Liaison for Devon, Cornwall and Isles.