Nice Guidelines...

 I've been up a while, not because I have trouble sleeping but because I'm still so upset after my visit to Ipswich Hospital. Until recently I have trusted them to give me the best treatment available for the arthritis that I have been blessed with.

This last flare-up which started in February has been so painful and draining that every time I speak to anyone about it I end up crying, this gets me nowhere and just leads them to assume I'm depressed. I'm not at all depressed just fed up with being in pain. Yesterday I was told that I could have stronger painkillers (opiates) to help with the pain and help me get some sleep. This annoys me as I have never said I have trouble sleeping - I've had periods of insomnia in the past due to emotional distress but at the moment I'm in a very happy relationship with a very nice man who I adore. We walk our dogs together, cook for each other and he never upsets me or stresses me. My family and friends love him so I usually have absolutely no trouble in the sleeping department!

I'm upset and cross because the nurse who said I needed painkillers to sleep several times yesterday didn't listen to a word I said. I need painkillers right now. I'm waiting for them to work so that I can have a bath, do my chicken duties and then go to work. 

I need them to aid my normal daily life, walking from the bed to the bathroom, more of a stumble and a bit of a swear really if I'm honest!

My x-rays from 2009 and 6 weeks ago are also ready for me to collect, three forms of ID including one photo one and one which is a utility bill plus a tenner in my bag with my knitting....except that there was along wait, my appointment was 3.50, I got to Rheumatology at 3.45 (a record!) and was seen at 4.40, by the time I had been seen by two nurses and sent for x-rays and a bloodtest for something I haven't been tested for before (I forget now what it was but it's to do with 'markers' again) the office I could collect the disc from was closed! Ho hum...

 I did get to see my hand x-rays though not my feet. They use the word 'reassuring' a LOT! X-rays of my hands show no erosion but one nurse did admit that there is twisting and deformity showing, particularly in my thumbs. My feet were x-rayed again, oblique this time as there are signs of change apparently. They may ask for a scan to determine what is soft tissue....I just know that they hurt all the time and when I walk I get striking pain where my toes join my foot.

So along with yet stronger painkillers they are suggesting I try yet another DMARD - Leflunimide. I've tried two already the (as a twitter friend and fellow PsA sufferer describes it) Sunny D of the drug world, Sulfasalazine and the oh, so scary Methotrexate. Both requiring fortnightly visits to the Vampire for blood tests to monitor the effects on my organs. 

Maybe they are hoping I get so zoned out on the opiates that I stop fighting and just sleep all the while...(this is a joke BTW!)

NICE guidelines say that after trying two DMARDs that patients with inflammatory arthritis should be put forward for trials with anti-tnf treatment. These are three month trials and that's because it works fast, in as little as THREE weeks sometimes. The traditional DMARDs take around three months to show any effect. I tried Sulfasalazine for a year, Methotrexate for 15 months and there has been no noticeable slowing down of the changes in my hands.

I didn't have enough qualifying joints yesterday, plain and simple. 

It's unfair.

 I think it's unjust and immoral that because a PCT has recently tightened up the guidelines that until 6 weeks ago I would have fitted into I am left in pain and having to start slowly introducing another DMARD into my life and wait to see if it is the thing that will work for me. You do it slowly because the side effects are pretty unpleasant. Nausea, hairloss etc.

The reason I'm so upset is because arthritis doesn't only affect the joints, it affects the internal organs too, MY internal organs. Anti-tnf treatment can cut the risk of stroke and heart attack by 50%! It can reduce the need for hip and knee replacements. It could prevent my hands and fingers from becoming deformed and mutilated by this sodding disease. 

Nice one Ipswich Hospital!

Birthday!

It was my birthday on Sunday so we kicked off with a lovely breakfast at Alder Carr Farm before setting up a picnic area with croquet at the Camping Land - brilliant day! Great company, food and fun! 

Feet 7/10 Hands 7/10, the cooler weather has helped a little.

It was great fun and a chick hatched on my birthday....but it wiped me out a little and yesterday I didn't really do much just a little bit of knitting and rested so that I can be ok for work today. Feet 9/10 Fella caught me wincing and frowning as I walked about - hands 8/10, the throbbing and pins and needles has stopped.

Big day tomorrow, knitting group and then hospital where I'm to be examined by two people to determine how bad the joint damage is and if I fit the criteria to try anti-tnf treatment. I have tried hard with the Methotrexate since last May and there has been definite twisting going on in my fingers and my feet are so misshapen, it's a wonder I can get any shoes on at all!

I also get to pick up my x-rays!

They make it pretty hard to get hold of these and all I wanted to do was sit and chat through any changes visible with my GP. So three forms of ID (one with photo) and a tenner will get me a disc, that took eight phone calls, one of which was to PALs (a patient liason service) as I was told three times that the images had been sent to my GP.....and they hadn't!

I wonder if there are any more chicks cheeping down at the allotment?

Happy Tuesday, one more day to go......x

The blues....

 Yesterday I was feeling very blue and not in a magical indigo way. 

I'm having to restrict how much I'm using my hands right now and I didn't even turn on my laptop yesterday but if I was to score the pain yesterday it would have been 9/9 for both hands and feet with a cheeky few scores of 7/10 for hips and 6/10 for arms...I couldn't even cry as I wasn't sure I would ever be able to stop.

BUT today I am kind of having a day off and as I'm not taking methotrexate any more it isn't even a pill day - hurrah! I plan to make some paper with the pulp that is sitting in the almost exhausted indigo vat. It may turn out so well that I offer paper-making workshops in the future at HH HQ, or it could just get messy!

The natural dyeing workshops have been really popular and I especially like the effects on this fleece, dyed with Golden Rod and then over-dyed with indigo. 

Magical!

Sometimes, just sometimes when the dyepots are bubbling away with excited onlookers waiting to see what shade they will get, or if I get a smile from someone who has just mastered a new technique I've been teaching them and they say 'wow! I've always wanted to do that' or 'what a brilliant idea'  I don't feel the pain, the stiffness goes away, I forget it all and that is magical! 

Hoping for a magical day and a not quite so messy one...x

About me...

 Today my joints feel like they are on fire, it's been so hot and for some reason that has aggravated my already stiff and very sore bits. I find I am plotting and planning my routes and jobs in order to minimise the amount of time I'm on my feet and since February the thought of being stranded without my trusty (rusty) bicycle almost makes me break out into a cold sweat.....

I like to think that I'm a jolly person and that having arthritis doesn't stop me from doing things like being a mad aunt...

 Getting flowers from fellas...

*whispers* these aren't from THE Fella but they are beautiful and far nicer than the person who gave them to me turned out to be in the end - that's another story!

 I can cook, I love to cook! It's just that sometimes I can't because my hands hurt or because I'm just plain knackered out! Sometimes it takes me so long to prepare a meal that by the time I am ready to eat I am no longer hungry or interested in it. The fatigue element of arthritis is the part I'm finding hardest at this moment and I get sooooo frustrated at having to operate at less than half speed. 

(please note - no grey lines round the yolks! I make brilliant scotch eggs....)

 The things I can and can't do have been bought to the fore this week as I tackled (again) the 55 page DLA (Disability Living Allowance) form. I was turned down last time and didn't appeal as the rejection happened to coincide with a brief period of remission. 

DLA would allow me to get someone to help me clean, getting down on my knees to clean the bathroom will mean extra pain for days after, wipe me out energy-wise and mean that I may not be able to do something else.....like work!

But how do you measure what you can and can't do?

 I can write, here is a pic of Country Crafts on a German website! The German version has a different cover...smart innit?! The fact that sometimes I ache so much that I can't lift a copy of it with one hand is a little depressing though.

I can teach sewing machine skills and instill confidence in people, encouraging them to match, measure and cut fabrics but sometimes I can't even use a pair of scissors...

 I can easily pick marigold heads from the allotment for dyeing workshops and yet find weeding almost impossible involving as it does a great deal of both kneeling and using my hands.

So how does one measure the impact of arthritis on a life? 

I can't do some of the things I would love to do, like running - I last ran in January. I can't do some of the things I'm not that bothered about like cleaning....but I would like to live in a clean house again!

It would be nice to be able to choose to do things without having to work out what I will have to miss out later as sometimes cleaning the bathroom floor isn't worth missing a meal for!

I know I promised to blog about piles (and it ain't what you're thinking!) this time but they will have to wait...something else much more important came up.

Feet 7/10

Hands 9/10

I'm recording the scores for a week as I have an appointment with the rheumatology nurse next Wednesday.

Nx

The one in the middle is madder....

 I refer (of course) to the dye plant madder and the felt in the middle is dyed with madder (exhausted) and we had pre-mordanted with tin....

 Natural dyes are so exciting, you never know what you will get! So many factors influence the resulting colour, it certainly keeps you on your toes! 

Last time I blogged I had been prescribed another ant-inflammatory drug called Sulindac and like the dyeing you never really know what will happen next. 

It didn't agree with me at all, in fact it very nearly killed me! I tried hard to keep smiling through the pain, dizziness, nausea but when I started to lose blood from everywhere I had to pester my poor GP yet again! I was left in pain and bleeding dangerously for the whole four days it took to get advice from the hospital.

So.....it's all change again! Celebrex seems to be ok although I still have pain, no side effects as far as I can tell and supposed to be one of the safer ones to take.

That's me, in the middle and madder!

Next post will be all about piles.....x