I feel it in my fingers...

Ok, I hate the song but struggled to find a title for this post!

Not as jolly as a lovely recipe for a cake but then sometimes the less jolly parts of life come to the fore and a subject close to my heart (feet, hands and knees etc.) has reared it's ugly head again.

PIP

Anyone *outside* the DLA (disabled living allowance) world is forgiven for having little or no knowledge about the subject, why would you need to know about it? I knew nothing about it until a friend mentioned that I was having a lot of problems getting around and had I considered applying for DLA?

The clue is in the 'A' it stands for 'allowance' and it is a payment made to people who are disabled in some way, shape or form due to illness regardless of whether they are able to work or not. It can be used in ways to assist the claimant in leading as 'normal' a life as possible. We don't spend it on cruises and fast cars you know and the 55 page form is a beast to fill in...they don't hand out those Blue Badges willy nilly either!

Even though looking at me with my rosy cheeks, beamimg smile and positive outlook you wouldn't guess how much pain I am in but I can assure you I am and because of the life limiting qualities of Rheumatoid Arthritis I am a DLA claimant. I use mine to pay for things like:

 Good shoes that are very expensive but recommended to me by the healthcare practitioners I see for the management of Rheumatoid Arthritis. I have arthritis particularly badly in both my feet and hands. I can't just pick up a pair of shoes in the supermarket as my already painful feet would be in unbearable agony!

A tiny vacuum cleaner! 

Sounds rubbish but my old cleaner, a perfectly serviceable Dyson 02 (never throw anything away!) is far too heavy for my feeble wrists now and in order to attempt a reasonable level of hygiene at home a person does sometimes have the need to run a vac over the floor...

Pre-chopped veg, this and a food processor are the only way (unless I rope someone in...) I can really cook properly now as my hands and fingers are so sore! Even picking baby spinach leaves last week was a teeth-gritting affair! 

Cleaning Wipes

 Of all types...

Oven Cleaning

I've finally given in and admitted that I can no longer clean my oven myself - last time I did it, about a year and a half ago it took me a couple of days and I had to rest for a day after. I also have problems kneeling down - tomorrow my oven gets a really good clean by a professional company!

You would think I was fussy about the cleanliness of my home but really I am just very scared of becoming unwell - Humira leaves me prone to infections and masks the symptoms in such a way that it isn't obvious until the infection is quite serious! Factor in that all arthritis drugs have to be stopped while the antibiotics do their stuff and it's enough to make the most un-house proud person flick a duster around once in a while!

Reading through the guidelines to assessors of the new PIP (personal independence payment) it seems to me that people who accept the difficulties that having a disability brings along to the party are to be penalised for adapting and having a positive attitude towards life which is not the way a supportive society should be treating people who are already struggling to have some kind of life abeit a slightly, slower and stiffer one in my case...

I'll be back on cake recipes next time I promise!

Nic x

 

 

Rhubarb Flapjack Recipe!

 This recipe was inspired by a gardening book full of recipes for using up gluts of seasonal fruit and veg - a very nice book but some of the recipes are a bit off with quantities and timings IMO so flying by the seat of my pants I tweaked away and served this up to my knitting group...

 The knitters are cake experts and most Wednesday mornings the topic of food is to the fore around 90% of the time!

 The original recipe called for two pounds of the mighty barb and stated it would serve four persons WITH CUSTARD - that's a lot of rhubarb...eeek!

SO

eight ounces of butter

one ounce of sugar

nearly a whole small tin of golden syrup

went into a pan and left to melt together while I got

one pound of rolled oats

one teaspoon of seasalt

two teaspoons of ground ginger

together to which I added the molten mass of buttery sugariness!

Mixing it all together really thoroughly...mmm!

Pressing the crumbly oaty mixture well into a lined tin, the sort you would probably use for brownies...about two thirds of the mix will bank up the sides well (we need to keep that rhubarb in!)

I then added the 

one and a half pounds of rhubarb

chopped into chunks and stewed lightly with

one and a half ounces of sugar

 

 before sprinkling the rest of the oaty mixture on top and pressing down slightly and baking at around 150 C - you know your oven - mine looked done after around half an hour.

I cut the resulting bake into 15 pieces and there was none left!

ENJOY!

Nic x

*this is for all you Twittery Rhubarb Obsessives out there...*

The Listening Project

Yesterday afternoon 'The Fella' and I travelled into Ipswich to meet up with a twitter buddy who works for BBC Radio Suffolk - a bit different to our usual Sunday routine! We were to be part of a really exciting project being run by local BBC radio stations, Radio Four and The British Library....*excited face*

I had heard of The Listening Project through listening to snippets of some of the conversations featured on Radio 4 and thought it sounded so interesting that I was very excited to be asked if I would like to 'have a conversation' which would be kept at The British Library for future generations to have access to. Who to choose to speak to? I have a couple of friends who are also 'Radio Four Bores' and one in particular would be great to talk to but she lives too far away...the conversation needs to be half an hour-ish and it's supposed to be an opportunity to talk about things you may not have had the time or chance to do so before...choosing a suitable conversation partner is harder than you would think! 

I wanted the conversation to mean something, to be of use to people and not just a soundbite of the times we are living through - I wanted people to know how it feels to have an invisible disease, the obstacles sufferers have to overcome and how a thoughtless remark or comment can be very upsetting and that we don't 'just have arthritis' like old people have....hmmmm!

'The Fella' was less enthusiastic about being recorded talking to me...for a week he put forward more suitable (in HIS opinion!) candidates but eventually I wore him down and he agreed to do it...which just goes to show what a brilliant man he is!

We talked about a LOT of different stuff (not just our creaky bones!) but it was noticeable just how much both our lives are affected by Rheumatoid Arthritis - almost everything we do has it lurking in the background and believe me *it* makes sure we know it's there! The other thing I noticed was how incredibly strong and brave a person suffering from an incurable, chronic condition has to be and how much I admire 'The Fella' for doing this without fuss for 20 years, he has a 16 year head start on me!

We also laughed, we laughed a lot!

Couldn't have done it with anyone else really...

Nic x

What happens on Humira Saturdays?

 Well the only side-effects I am aware of is a feeling akin to being smashed in the face with a shovel but as that doesn't hurt as much as having RA does so I can cope with that! Makes blowing my nose and kissing the Fella tricky but then RA makes a lot of things like that tricky too...so having passed my assessment and being able to stay on Humira injections aided by a low dose of Methotrexate which helps to stop my body rejecting the Humira. 

Every other Saturday morning I get up and when I get the milk out of the fridge for my morning cuppa I also get out a Humira 'pen' - it's refrigerated as it needs to be kept between 2 and 8 degrees C but it stings if you inject it when it's TOO cold...half an hour on the kitchen table makes it about right and I'm supposed to check that it's:

a) in date

b) has no flecks in the liquid

c) is not damaged

 Making sure everything is squeaky clean (including my pimply, pale thigh here!) I find a fleshy bit and follow the steps...I have heard that patients using Humira in the States get a talking pen which they can practise with but no such fun here in the UK unfortunately!

The needle is in that white tube and step one is to take the lid off...so far so good!

 Step two is to take the lid that covers the push button off...both recyclable BTW! I'm a bit feeble in the hand department and find it hard to grip so I use both hands to do the job and still struggle a bit but would hate anyone else to have to do it...

 (When I did my first jab on my own I had worked myself up into such a state and it was fine, in fact I barely felt it! The pain from RA is so much worse TBH...)

 Pushing down hard enough to push the white tube back - this makes sure the needle goes in and none of the drug seeps out...urgh! Always makes me feel a bit sick this bit - getting the angle right so I can see the little 'window' is a bit of a palaver but I can just about do it now! I have to count to twenty....slowly and try hard not to *jump* when I press the button!

In answer to anyone who thinks it's 'just a pen, a little prick' it isn't ya know - it's a bloody great needle and waiting for the twenty seconds to be over as you hear the liquid going in (yes, you really can!) seems to take forever!

 But....then it's over! I check the 'window...

 ...place the packaging and lids in the 'green bin'...

 ...place the needle in the sharps bin that sits next to the bleach bottle with the child (and Nic) proof lid that lives in the bathroom...

...go finish my cuppa and get on with my day!

Hope anyone waiting to start on Humira finds this reassuring and helpful, Nic x

PS. I still have a lot of pain in my feet, hands, hips and knees but can definitely see some improvement - I don't have 'sausage' fingers or toes right now and have been wearing normal boots for months now. *smiley face*

 

Feed me!

Chocolate and peanut butter crispy cakes!

One jar of crunch peanut butter, two big bars of cooking chocolate, dark and high in cocoa solids! Melted together in the microwave (choc first and then add PB) then give it a good stir, sniff (very important!) and then add enough cornflakes or rice crispies to use up all the chocolate peanut yumminess before spreading it all out on a tin or baking tray lined with a bit of greaseproof. Leave in fridge while you go and do something else and cut into squares just before you need it - the bits that drop off as you tidy are for you to test and it is kinda the law that you do this and at the same time give yourself a pat on the back! Mrs Tudor and I thought that they would be jolly nice if they also had some sultanas or flaked almonds in...or some glace cherries.....*sigh* sadly the Monday ladies are a little choosy and some don't like sultanas or orange or apple or...you get the picture? I like to try and keep everyone happy!

 This post has been inspired by a great tweeter fella who loves a good cake and always makes me smile when things are being a bit glum or tricky...he knows who he is! He liked the look of my crispy cakes which went down a storm with the crafty ladies last night...I missed another evening session of my Monday group due to being knackered and feeling a little under the weather - I have my second assessment for anti-tnf this Thursday and it's making me a little stressed. Over the last few years I have seen a pattern forming and I always get slightly 'better' around this time of year - to narrowly fail another assessment would be very hard to bear....but hey ho, there is always cake!

I've had to adapt almost every aspect of my relationship with food since becoming ill, at first I did try to isolate which villainous foodstuff was responsible in making me become so ill. Then after a while I thought 'sod it' and didn't really bother about anything, I just wanted to be able to move around and not be in pain - food became fuel and was no longer pleasurable.

I'm back round to enjoying my relationship with food again, it's different and there's always a few glitches along the way such as when I take Tramadol (takes away my appetite completely - not a good thing! I may look hefty but it isn't always food that's responsible...) but we are rubbing along nicely right now...I've developed a few different techniques which will have purists fainting all over the place but it gets me by and I have very few complaints!

These are my heavy old scales, they belong in a big farmhouse kitchen and not in a tiny modern (but perfectly formed) council house in deepest, darkest Suffolk. 

I use the butter to weigh out the self-raising flour and sugar - equal amounts of each and then pop the butter into one of my lovely old vintage mixing bowls and place it in the oven whilst it's warming up. I know that I should be creaming the sugar and butter together until it's light and whippy but if I do that I will need a lie-down for the rest of the day. It's the same with preparing vegetables, chopping up a butternut squash can finish me off for a week! As soon as there is some softening occurring I remove the bowl carefully and sit down with it at the table and using a wooden spoon start to mix everything together...I could use the Kenwood mixer but what with the pills resting on it and having to change the beater...I prefer this way. Once I've added eggs - five if they are from Zsa zsa or Button and four if they are from Hylda or Betty - I plonk it into a big silicon and glass cake tin I got from Lidl for four quid and cover the surface with chopped up fruit. Pear and raspberry work well but so do pears on their own and if you are lucky enough to live near a Bullace tree then do some foraging and get them on that cake! After a sprinkle of sugar it goes into the oven and is ready when an inserted skewer comes out clean...ta da!

It's not all about cake though and the Fella and I have had this (above) every Sunday bar one ever since seeing this on Nigella's programme - he reckons he'll never get bored of it! Parmesan dusted eggs are cooked in tomatoes that have been mushed up in a pan with garlic and chilli - we use a squeezy tube of Harissa paste from the Turkish bit in Asda instead of chopping chillies, with my track record for clumsiness it's far to risky to allow me to handle REAL chillies...

So between my wonderful ma cooking brilliant roast dinners for me and eating with the Fella I have managed to find a way to love food again. I can no longer lift my pots and I can't cook every meal everyday, I don't have the energy and my hands hurt far too much but we get there...slowly! Tonight we will have sesame prawn toasts with our Thai curry, in the old days I could rustle them up in no time but these days I need three days notice and recovery time...they are so worth it though! The only ones we have had that are better are at the China Chef in the Station Yard at Needham Market.

There's your first food blog from me then Noel...I've held back some hot cake pics for another time! Nic x

PS. Apologies for poor quality photos, I'm borrowing the Fella's laptop and only have BlackBerry photos of food to hand right now!

Harvest

It's autumn and that marks three years since I first visited the rheumatology department at Ipswich Hospital. If they ever move the pictures that adorn the corridors around I'd be wandering around in there forever! I have absolutely no sense of direction...up until May this year I have been every six months since that first appointment. Now I seem to be up there every week, recognizing the number of the hospital on my phone despite not entering in my contacts list.

Reading through my notes I see that I was presenting classic symptoms of Rheumatoid Arthritis which through most of the last three years has been raging through my body causing pain and inflammation - my feet were described as 'little trotters' once as they were so swollen...

I know it's hard for people to understand that every part of me hurts most of the time, I wear splints on my hands when my thumbs need support not because they hurt more than my feet, knees, back or hips...it is quite upsetting when people assume it's only the part of me I'm supporting at that moment whether it's with splints or a stick. This happened yesterday, last Friday, last Wednesday...a very good friend assumed that just because RA is now thought to be on the scene it's somehow, all of a sudden become so very much worse than when it was thought to be PsA. The usual suggestions of a change of diet and Chinese herbal supplements then followed....it's hard at the moment not to cry out and show people just what it's like to be permanently tired and in pain.

I know that they are merely trying to help, to try and find a quick fix, to get me back to how I was before this happened...

The programme on Channel 4 called 'Food Hospital' featured RA in it's list of conditions that can be cured with food - I'm not denying that there are some conditions that are affected by food but trust me if I could run again if I never touched another crumb of bread then do you not think that I would find the will power to resist?  Programmes like this, articles in the newspaper all citing lower ESR levels as evidence of a particular diet working give false hope to all the well meaning, thoughtful people around us.

My ESR levels have never been high, have always been unremarkable and yet there is no denying that there is always inflammation there. Celebrex has become my favourite drug - hope that they keep me on it, the swollen feet have gone down, my fingers no longer resemble sausages. The pain I have now is not from inflammation as the damage has been done, the bones are crunching against each other and I remove myself from that with Tramadol.

It's breakfast time, I'm here at the kitchen table, waiting for the pills to work and trying not to think about food, the Tramadol has taken away my appetite and as anyone who knows me in real life or via Twitter I live to eat, love to cook and feed people. The Fella and I are taking it in turns to cook nice healthy meals for each other, my parents cook for us once a week and we're struggling through...

Nic x

PS. I get the disc with Friday's MRI scan on it today! The really helpful lady in Diagnostic Imaging has posted it out to me and the nice lady at PALs is trying to find out why the Radiographer's notes were removed from my X-ray images...two painful steps forward and then one back!

MRI

Last Friday I had an MRI - I had been told on the phone that it was my hands and feet that would be done and I had to decide whether the left or right in each case was the worst affected.

This amused and confused us all and many a happy hour has been whiled away (I'm currently taking  a LOT of Tramadol!) deciding which side is worst - left hand and foot both look pretty grim but I have a lot of pain in the right at the moment...

Having been given a timescale of around 'one and a half hours per bit' during the same telephone conversation with the MRI reception I arranged for my folks to drop me off, go to do their shopping and pick me up around three hours later. 

Fella also helpfully told me that when he had his ankle done he just had to stick his foot in with the rest of him outside the machine....so I took some knitting for the feet bit and a book about knitting for the hand bit. 

Turned out it was only my wrist and hand that was of interest after all and as for 'just sticking my hand in.....' that bit was also wrong - de-bra'd (their term, not mine!) and lying face down in a 'Flying Superman' position the whole of me went in! The noise was erm....*noisy* if you have never been in one or accompanying someone having one it's like having roadworks 6" from your head. As you enter the room there's a 'thud, thud, thud' as there is already a background magnetic field - so you don't get a shock (I assume) then donning an impressive set of headphones (not unlike the Boy's Wharfedale's!) the technician warns you that the big noise will start and my goodness...it certainly does and with a minute's break at half-time for a contrast medium to be injected through an IV that is how it is for about one and quarter hours! 

Lying perfectly still and silently, hand strapped into position in a tube with a hammer drill working away...not the best of Fridays but if it gets me some better treatment then totally worth it!

I've just spoken to the MRI department and they say it's already been reported and sent to my new consultant. I'm hoping they will send a disc out to me too, they will accompany my x-rays which I have now discovered are missing their notes!

Oh, and I also had a chance this week to contribute to a book being written about arthritis and how people cope with being diagnosed with a chronic, painful, incurable and difficult to treat condition. The author is now adding another chapter about working with the condition. 

Actually diagnosis is a huge relief as it takes a long time and some of the tests can show false positives or negatives. Diagnosis can direct the treatment in a more productive and positive way preventing a person from becoming permanently disabled...it can be comforting to be able to put a name to the pains that have plagued a person, the fatigue that is invisible to others...

Nic x