The Solace of Stitching or How to Preserve your Sanity one Stitch at a Time!

One thing that no one tells you about having a chronic illness is how much of your personality it eats away.  So many of the things that have defined my life (playing the flute, singing in choirs, dancing etc etc)  are now basically impossible, so I've been trying to find some relief in the things that I can still manage. These are mainly characterised by being hand work, such as crochet and hand sewing my hats.  The state of my health has caused me some pretty big bouts of depression and anxiety (fairly understandable when confronted with the need for a double lung transplant!)  but being able to pick up a crochet project or hat and feel the rhythm of the stitches as I form them is incredibly soothing.

When my mind is in a tumultuous mess, the repetitive nature of crochet and sewing calms me in a way that some people compare to meditation. I have tried Mindfulness Meditation as recommended by my psychologist, and I have found it helpful.  The main problem I have with it, is that it mostly focuses on using your breathing as a way of centering your thoughts in the present and not worrying about the future or the past.  I can see how this can work but when your breathing is a massive problem, focusing on it just makes me more stressed, not less! So sometimes what I need most is a task that prevents my mind worrying endlessly about all the stuff that is driving me nuts. Crochet and hand sewing hats takes enough thought and concentration that it prevents the endless spiral of depressive thoughts that are so easy to slip into.  I really do find a great deal of solace in stitching, and its not just me- a quick search on the Internet shows how many people have found relief from mental health issues using knitting, crochet, embroidery or other hand crafts as a form of meditation, for example this article from the Craft Yarn Council has numerous exampes of knitting being used as therapy for the seriously ill.  So it's not just me!

Another thing no one tells you about chronic illness is how it can leave you feeling out of control.  I find this particularly hard as CF or not, I like to know what is happening in my life and that I have a plan of what I ant to happen and how I'm going to get there. Sadly, n many ways it feels like the illness is in control, because you always have to take into account all the extra stuff that having something like CF entails.  You can't just decide for example, to go out to the cinema, you have to consider if you are up to going there, can manage the air con in the cinema (it can really set off a niggling cough)  have you got all the meds you need to have with you have you  got your insulin and diabetic contraptions and so on and so on and so on.... I'm not saying it's impossible to do things, you just have to be incredibly organised and know that there are these controlling factors to pretty much every decision you make.  I really don't like that my CF makes me feel that it is control and I am not (understatement alert!).  I'm not saying that healthy people are always in total control of their lives, but they can be pretty certain that if you do (A) then the outcome will be (B).  When you add chronic illness into the equation doing  (A)  may sometimes result in (B)  but its more likely to end up being anything from (C) to (the square root of five) and anything you can imagine in between. With something like CF at the stage I am at, you can plan and prepare all you like, but inevitably your body decides to throw a hissy fit and suddenly all bets are off.  I hate that one day I'll feel ok (at least ok my standards!) and I'll be able to do something simple like having dinner with friends and the next I can barely get out of bed cos I've got a raging temperature and I'm trying to breathe through treacle- I really cant express how frustrating this is and how angry it makes me.
Crocheting and sewing gives me some semblance of control back, I can still do these things, the way I want and and my CF can just sod off!  This gives me a great deal of satisfaction, however simple and small the project may be, its still mine.   When everyday tasks feel like insurmountable problems, actually making something from start to finish really does help prevent the feelings of  being out of control, of inadequacy and uselessness that having CF can create.  I frequently feel that I am just a huge burden on Mr EB and my family and friends.  They have never given me any reason to think that, but it's hard not to feel that way when you need so much help to do things that everyone else takes for granted.  To try and help asuage these feelings I have been searching online for articles and books that might help me learn to deal with these difficulties in a more proactive way.  One book that I absolutely adore is Ruby Wax's Sane New World.  Not only is it hilariously funny in its explanation of Wax's own metal health problems, but it includes lots of exercises based upon mindfullness, that are easy and simple to do.

Another really interesting article that  found online is by Dr JoAnn LeMaistre, all about Coping with Chronic Illness. It's actually a shortened version of a book of the same title, which is sadly out of print, but despite its relatiely short length it is a really helpful read.  She talks in depth about setting realistic expectations of what you can achieve and trying to live in the present.  If you have a chronic illness I seriously recommend reading her article, as it really does cover loads of helpful ways to cope with your reduced health.  So until I either get listed for tranplant, or by some miracle a treatment does become available for my genotype I shall be crocheting and sewing myself into some sense of sanity!  If you'd like to see some of my crochet projects, do check out my projects page on Ravelry.

It's a hard knock life...

Yes, I've been reduced to quotes from musicals to express myself... I've never wanted this blog to be all about how shit having cf is, as for one thing I think its pretty obvious, and I've always lived in mortal fear of people thinking I am trying to get their sympathy... Fortunately, I think the number of people who read this blog are so negligible (don't ask me about how depressing my google stats are!) that probably no one will notice:-)

So anyway, I've been having a hell of a lot of ivs recently, its been pretty much every 3 weeks for several months and sometimes less...So I had to have one of 'those' conversations with the consultant last clinic, and I have been rather forced to confront some home truths.  'Those' conversations are the ones that you have about the big scary things, like the fact that the "drugs don't work" very well anymore (now it's 90s grunge songs), and I'm rather running out of options, so transplant is rearing it's ugly head once more.  You may well make it through the conversation without dissolving into a puddle of angry tears, but later on you have to actually face the facts, and I really don't want to.  My declining health has been so gradual that I find it hard to recognise the fact that I am this sick- sick enough to need a double lung transplant in the not too distant future.  I know that sounds daft, but it's only when I actually sit down and think about my daily life that I realise how much I'm struggling- physically and mentally.  Putting off going upstairs until you absolutely have to, because you don't want to cough your lungs up is not normal in a 34 year old.  Not being able to speak without getting out of breath- ditto.  Having to make other people walk at my pace cos there is no way I can go at theirs.... The list could go on, but frankly it's too depressing. But all this has occurred so slowly that it has just become 'normal' for me. If I had gone from being well to suddenly being really ill then it would be a lot easier to realise where my health is at now.  Cf is such an insidious disease that when you do finally confront what it has done to you, it is almost surprising! 

We've not given up completely just yet tho.  The consultants and I have a plan! Next time I need ivs, we are going to try and desensitise me to some of the meds I've previously been allergic to, which I'll have to have as an in patient sadly.  But it may mean that we can try some new treatment options and hopefully get a little bit longer off ivs, which would be really nice. So to try and alleviate the boredom I'm going to plan and get materials for a couple of crochet projects, and make some hats that I can then trim whilst incarcerated.  We have also just completed the purchase of a bungalow, that once we've done it up a bit (ok a lot!) will hopefully make my everyday life a lot easier and less stressful.  I'm also rather enjoying designing all the fun things we 're going to have in the new house, with Mr EB of course!   I'm not going to just stop living and doing things and being me, because my body is being difficult. 

2014 Round-up and 2015 Plans

Well its a New Year, an obvious time to take stock of things and plan for the future.  2014 was a very mixed bag of a year.  ON the positive side I had some fabulous times with friends and family and totally the best day of my life so far, when I married my beloved Mr EB in June. I couldn't have asked for a better day, the weather was perfect, food was amazing and we are so lucky to have so many lovely people in our lives who came to share it all with us.  Sadly, the year also contained way, way too much crap!  I spent two weeks in Papworth in March/April plus a further three weeks at home on ivs being treated for Micobacterium Chelonae, I can honestly say that the treatment was utterly horrible-I have never been so sick in my life!  So that was hilarious fun,  then in October my health was the worse its ever been, i ended up back in Papworth and oxygen dependent for the first time in my life.  I don't think I really appreciated just how ill I was at the time, probably because going into denial was the only way I could cope with it.  I had another round of the micobacterium treatment (yay more ridiculous nausea!) and spent three weeks in Papworth and another two weeks on ivs at home.  It really was a horrible experience, I had one evening when I simply could not catch my breath, my O2 saturation plummeted and the nurses bunged me straight on oxygen.  In retrospect I was really scared, and it still scares me just how bad I got and how quickly, but at the time I was surprisingly calm, as I wasn't totally aware of what was going on.  The next ten days or so were spent pretty much on oxygen 24/7 which whilst it definitely made me feel better, meant I was also stuck in bed for pretty much the whole time-very dull!  I became very weak and lost a spectacular amount of weight during October and the only reason I didn't end up have to NG feed was that I had a total freak out about it and managed to persuade the dietitians I would start drinking the dreadful milkshake supplements (which I have and thank God the weight is slowly getting back to an acceptable level).

This health crash has forced me into having to reassess my life, yet again-bloody CF!  Trying to stick to my motto of 'adopt, adapt and improve', I'm attempting to view this as a positive thing, but mostly I'm just a bit confused as to what I am going to do.  Working to a deadline is just way too stressful when you can't tell if you may suddenly end up stuck in hospital unable to do anything for three weeks...So work is going to have change a lot, I'm just not quite sure how yet! More hats and embroidery seem one way to go, but I don't know how I'm going to sell anything-suggestions gratefully received...

We are also considering moving to a new house that will make my life a bit easier on the domestic front.  Stairs are definitely no longer my friend.  It's not that I can't do them, I can, but when I'm not feeling great (which is increasingly often), when I get to the top I either feel terribly faint or have a massive coughing fit-not ideal! Our house only has an upstairs bathroom which is a bit problematic; so we are on the look out for a bungalow- I feel so old!  I love George Street and really don't want to have to go through the stress of moving, but equally I am increasingly conscious that I cant keep up with the domestic side of life, not to mention the garden-I really do feel utterly useless at times! So, we are considering moving now before I get much worse and it becomes harder.  So it looks like there will be some big changes ahead in 2015.

Absence!

Oh dear, I've been a bad blogger again... Its mostly been down to my health being a total disaster area.  The doc's finally decided that I'd had enough positive cultures of a micro bacterium called Chelonae to actually warrant treating it. Given that they've been trying to decide this for about two years, you can see how few positive results I've had and also how serious the treatment is as they don't give it to you until they really think you need it.  The treatment is seriously, seriously crap- for me it was two weeks in Papworth on three IV drugs, two of which are very, very strong along with two nebbed antibiotics and four pill antibiotics!  This was followed by a slightly reduced IV regime of the two massively strong ones, as well as all the nebs and pills for another two weeks which, thank God, was at home and I am now on the maintenance regime of the two nebs and two pill antibiotics...its still a lot of drugs, but it is much more bearable than the IVs. They actually wanted me to do the IVs for longer but I'd lost so much weight (5kgs in about 10days) and was so knackered and weak that they let me stop at four.  They were really nasty drugs too; tigicycline (I think that's how you spell it!) makes you seriously sick-I spent the first 48 hours unable to eat anything and not even water was staying put. The docs eventually got a good anti-sickness regime going which at least let me keep food down, but one of the anti emetics I started with, was so strong it basically knocks you out; so whilst you aren't being sick anymore you are also mostly comatose-great! To give you an idea of quite how sick I was, they gave me the same drugs that they give cancer patients when they are on chemo-really no fun at all. So, that was pretty much all of April out of the window on massive loads of drugs, so I didn't have a chance to do anything interesting to blog about.

At least now I've had a bit of time to recover and even go on holiday with Mr EB and the massed Evans clan, I'm getting back to work on my wedding dress and doing some embroidery too. Hopefully, I'll be able to do some more interesting blogging soon when I will finally be able to blog all the pics I've been taking  of my dress and have some other work to post as well.  Life will finally get back to being sewing and fun based, rather than drug based!

Free form felt helmet

I've always been a bit wary of trying free form or hand blocking felt. Having CF has gradually stopped me doing many of the things that have defined my life.  I can no longer play the flute or sing as the deep breathing aggravates my lungs and starts them bleeding-nice! This means no more orchestras, bands, choirs or singing in shows.  I can't dance anymore for the same reason, so there goes teaching lindy and dancing four or five times a week and going away to lindy events.  I can't work as a wardrobe mistress anymore as I am just not strong enough and yet again my lungs cant take it, and my increased IV treatment means meeting deadlines for shows is impossible and even meeting wedding deadlines is very hard.  All this has meant that I have lost so many things that I love doing, that I defined my life with, because my stupid body simply can't cope with them, and I really, really, really hate this.  One of the few things that I still have left is sewing and particularly hat making.  So if I had tried free form blocking a hat and been rubbish at it I would have been so annoyed, as I need to still be able to do something creative and hopefully be good at it, or I would probably just go totally mad.  Fortunately, I think I managed pretty well at my first go...  phew!

Free form hat making is unlike normal hat blocking because you do not use a wooden block in the shape of the desired hat.  Instead, you use a head shaped block or stand and having steamed the felt you pull it into shape over the block then pull and pinch and twist it into whatever shape you want. I bought a malleable head block ages ago, but have only just steeled myself to finally try out free form blocking.  Technically, my head is a malleable block for making wigs on, but it works just as well as a more traditional balsa wood head shape, it was also less than half the price of a carved balsa head...  I used my kettle to utterly steam the blue felt cone, then pulled it over the head and off I went with the pins.  I found that you have to work really quickly as the felt soon cools and stops being so pliable and stretchy.  To begin with you can take the hood of the block and re-steam it on the kettle spout, but once it got lots of pins in it to keep the felt malleable I held the whole thing in the steam jet and also used a wet tea cloth and a normal steam iron to press the steam into the felt and keep it soft.  You've got to be really careful whilst doing this as not only is it very easy to steam your fingers but I even managed to get a face full of steam on a couple of occasions-not good!

The first few pleats and pins

More pleats, more pins...

Pretty much all the pins!

It is a very organic and rather mad process, as you do find yourself just making it up as you go along. When I started I had an idea inspired by a 1920's cloche that had a line of pleats running over the head from front to back, but as I pinned it sort of morphed into the pleats curing right round the head! It is also very difficult to stop and I did find myself wanting to just carry on adding more and more pleats and tucks until I ran out of felt! Once it was all pinned up I left it to dry completely, before gentle removing it from the block and painting the inside with hat size and repining it onto the block to dry again.  The size makes the felt far more firm and stops it loosing all the shapes you've made.  To further hold the shape in, I carefully sewed all the pleats into the hat. The good thing about felt is that its fairly easy to hide tiny stitches under the pile of the fabric.

The finished hat on my dolly head.

The sewn in pleats.

From the side.

I am rather pleased with how it turned out, and I am definitely trying free form blocking again.  I was rather amused however when bot my parents independently described it as a helmet for an alien in Dr Who! So it's got dubbed the blue helmet in my head now!  For once, I've actually done a couple of those daft self portraits of me wearing it, by holding my IPhone at arms length!  I did try some without my glasses on, but I'm that short sighted I really could not get it to focus properly!

Hat accessorized with the latest port needle and dressing...

Temporary reprive...

Well, I'm back on the 'normal' ivs, dull, dull, dull, but I am not to be hauled into Papworth for three weeks just yet... The consultants have consulted, and decided that at the moment they don't think it's worth subjecting me to the treatment regime for the micro bacterium as they want more evidence that I actually a colonised with it before they do that.    Now I am fairly pleased about this, but I am still getting a very large sense of deja vu, as I was told the exact same thing a couple of months ago.  However, I subsequently got another positive result and the whole saga started off again, so in this instance I am not holding my breath... It is fairly obvious that this situation could reverse itself as easily as falling off the proverbial log so until I've had a good few more negative cultures I will not be hanging out the bunting and opening the champagne.  I've also managed to grow another unheard of bug called Chrysomanes indologenes!!! (no idea if I have spelt that right).  It is apparently not something to worry about as it doesn't cause problems, but how on earth do I manage to pick these things up?  I'm seriously considering wearing a hazmat suit at all times as I just seem to be collecting weird bugs at a great rate and I am getting a bit fed up with it!

Going round in circles, crocheting as I go!

I must admit to an overwhelming sense of deja vu... I am pretty much exactly back to where I was in October (after I had my first rubbish sample of some sort of micro bacterium), waiting to get some other sort of result that would give enough evidence to justify me being incarcerated at Papworth for three weeks and starting a massive regime of drugs to treat said micro bacterium.  This time they have at least identified the type of micro bacterium, but the doctors still are very wary of starting me on this unpleasant roller-coaster of drugs.  I can see why its such a hard decision, I really don't want to have to do these extra drugs, but it does rather leave me back in limbo- again!  So, I am trying not to worry and fret myself into a total mental collapse and hoping that either I get a nice obvious reason to do all this stuff or that the various teams involved decide that I am not colonised and can still be assessed for transplant when I need it... Like I said in the last post, I'm not good at waiting...

I find that one of the best ways of distracting my troublesome brain is to keep my hands busy.  I've just had another two weeks of what might be called 'normal' IVs, to treat the pseudomonas that regularly upsets my lungs.  These drugs won't treat the micro bacterium, so they should not be affecting the results of the samples I am sending off.  Whilst I'm on them tho I do feel rather like I've been run over by a steam roller and am just knackered.  This gives me far too much time to brood and worry, so I've been keeping myself busy with more crochet and also more embroidery designing with the new software and machine I've got (more on that later when I've got the hang of it!).  I've been gradually crocheting a blanket made of hexagons for several years now... I do a few here and then stop for a bit to do other things, then I come back and do a few more.  Well this dose of IVs I decided to get it a to a point where I could stat putting it together but can can still add more hexagons on later.  I've now got at least 12 of each of the nine colours and will be starting to crochet them all together with white yarn as I've worked out a layout I am happy with.

Many, many hexagons to be joined together.

Because I tend to get bored with repeating the same shape and colours, I have also been working on a yarn-eater blanket, to try and use up some of the yarn scraps I've had hanging around taking up space.  I really like making granny squares so that was an obvious choice. I was rather inspired by a blanket made by my great-grandmother which is made in amazingly bright colours, in clashing combinations that I really love.  So I decided to do a version using slightly smaller squares, only three rounds in different colours.  So far I've done nearly 50 squares and as you can see it's very bright and over the top!  I like the fact that the individual motifs are so quick to make, so you can just knock one up whilst having a cup of tea and have something to show for it immediately.  I will carry on making loads of squares until I run out of colour combinations, then will join them altogether with black.  If I get stuck in Papworth for three weeks I think I could manage an awful lot of crochet...

The Waiting Game...

I hate waiting. I've never been particularly patient with anything, but where my health is concerned I'm fairly useless.   I like to know what is happening and what the plan is and why I am doing the treatment.  So having to wait whilst the docs decide if they think I should have the treatment for the micro bacterium is just hellish.  The treatment is seriously tough- three weeks in hospital  on four IVs and extra nebulisers. And ts not on the cf unit because of cross infection issues.  So whilst I will be in an en suite room (I'm not allowed on a ward thank God!) it won't be the super nice new ones on the unit and I will have to deal with non-cf unit staff; who with the best will in the world are not as good as the unit staff and do not have anywhere near as much experience in dealing with cf patients and our treatments.  Then once all that's done it's two years of an extra two nebulisers, maybe three and an extra two possibly three pills on top of what I already take! So whilst I can totally understand and agree with the docs not wanting to inflict that on me based on not much evidence, having that hanging over me is really doing my head in... If it was just obvious that I am definitely colonised with the micro bacterium then I would say fine lets get it over with and have the treatment, which Dr Barker calls 'Domestos for the lungs'. But it's not obvious.  Yes, I've had one clear positive and one sort of weak positive result but the bronchoscopy results have all been negative.  Usually bronch results trump sputum because it is much more certain that the bronch samples are from within the lung and not just something I breathed in from the environment and then breathed out. My CT scans don't have any clear changes indicative of micro bacterium and I've not lost significant lung function, all of which would be suggestive that it's really there.  With such small evidence its not surprising the consultants are having a hard time agreeing what to do with me!

The other problem of course, is the transplant aspect.  The Papworth transplant team are very hesitant about transplanting people who have this bug as the outcomes tend to be rather poor, well actually really poor.  The micro bacterium can lurk in your system in other places and then when you are imuno-suppressed to prevent the transplanted lungs being rejected  it can infect other major organs and cause abscesses-really not my idea of fun!  Being told that having a transplant with this bug present could end up with me having abscesses in your liver, kidneys or even brain was not a fun experience...  So the Papworth team seem very keen for me to have the treatment before they will consider listing me.  The consultants are asking around other transplant centres to see if I would still be eligible elsewhere or if it is a definite refusal all round.  If they all agree that it's a no-no, then that will at least make the decision for me.  I'm not prepared to give up on the opportunity of having a transplant one day cos of some stupid bug and if that means I've got to do this treatment then so be it.   The docs say its fortunate that delaying the decisions for a while won't impact on my health, but I would much prefer to know what I've got to do asap, rather than this uncertainty, I don't deal well with uncertainty. I'm far too good at fretting and arguing with myself and not sleeping- kind of like right now really!. But I'm just going to have to put up with it for a while longer and carry on waiting...

ARGH!!!!

I am so annoyed with my bloody lungs!  Sam, the specialist cf nurse from Papworth rang on Monday to tell me that I've grown a micro-bacterium in one of my last sputum samples....I am furious abut this!  I grew a very pathetic example of one at the end of last September, it was such a tiny sample that lab could not even identify its actual species and it died on the plate before they could! However, I was immediately segregated due to cross infection risks, and had to start sending  about a million more samples off and have a bronchoscopy. All the results came back negative and I was declared bug free.   This was such a relief as having a micro-bacterium is really very serious, they are not easy to treat and get rid of completely and some of them are an automatic disqualifying criteria for transplant.  I've got to the stage where transplant is being talked about more and I even went to see the transplant team in October to talk abut options.  Fortunately the transplant team don't think I am ill enough to be fully assessed and listed for transplant yet, so I do have some time to try and get bug free so when I need a transplant it is still an option - at least that is what I am telling myself to stop outright panic.Its not that I want a transplant now by any means, it is not a cure, but I really do not want to be told I can't have one because of a stupid bacterium.  When the time comes I want to make the decision as to whether I do have a transplant myself.

I didn't deal well with all this stress, not surprising really, it is all rather serious after all. With all the extra stress and annoyance at being segregated and ill, and the fear of not being eligible for a transplant I was rapidly descending into a big depressive spell.  I started seeing the CF Psychologist again (who has been just brilliant) to help me cope with it all, but when I got the all clear it was just such a relief. I could not stop smiling and laughing for several hours after being told and mentally I felt better than I had in months.  It was like a huge weight had been lifted off my head and I could see a future which if needed could include the benefits of a transplant.  Now I've had another positive sample all that weight is back again, and its even worse this time as I really can't pass this second result off as a possible false positive or just a small sample of bug that I breathed in and came out in the sample without it actually colonising my lungs- which was the prevailing view for why it turned up last time and was such a pathetic sample.  One positive result is not considered enough to decide if a patient is colonised with the bacterium, as the treatment is very heavy, arduous and long, so the docs really don't want to put you through it unless they are sure its worth it.  Now I have had two samples come back positive so it looks like I can't avoid the treatment.  I just can't believe I am going through all this rubbish again!  It always knew it was a possibility but I had hoped to have at least a few months off before the next health catastrophe came along...

Incarcerated!

Well I'm stuck in Papworth for a bit... Sigh. I had a bronchoscopy past Thursday as a way of hopefully ruling out my having nasty microbacteriums that would prevent me being eligible for transplant. The bronch went fine, in that I can't remember any of it! But since then I've been left with very sore lungs and nasty high temperatures... It got so painful that nearly called n ambulance on Saturday night, which anyone who knows me will agree that I must have been in agony if I was prepared to go to Addenbrooks A and E on a Saturday night! Fortunately, I could call the unit at Papworth and talk to a doc so I avoided that joyous experience. Sadly the temps and pain remained so they have dragged me in to sort me out. Very dull but alas necessary.

Hat a week/month progress

I've actually managed to do a bit of hatting over the last couple of weeks, which has reminded me just how much I enjoy it. I've been making a very large brimmed cerise sinamay hat, which I've edged with black and will have black decorations. Sadly, tomorrow I've got to have a bronchoscopy and start IVs so I probably won't be able to finish it for a while.  I need the bronchoscopy to try and decide one way of the other if I am harbouring a rather nasty micro bacterium.  I had one random sample come back positive for it in early October, but I've had five reasults since that are negative.  The problem is, that if I do have it it will almost certainly stop me being considered for transplant... My doctors do now seem fairly sure that I don't have it and that the positive was just one of those things that sometimes pop up, however, to make absolutely sure I need to be thoroughly searched by broncoscopy to be declared totally bug free.   This has been a very stressful and distressing time to put it midly! The idea of not even being able to be considered for transplant rather knocked me for six.  Knowing that one day I might be able to have a really positive outcome from transplant and get some of my strength and stamina and life back, has aways helped me carry on fighting when I've been feeling rubbish and struggling with this bloody disease - which has been rather a lot recently. So to have that little glimmer of hope taken away was really, really hard.  Having had all the negative results has restored my mental eqilibrium a bit, so hopefully the bronchoscopy will go well and also come back totally negative and I can try and get back on track health wise and head wise. Fingers well and truly crossed.

Anyway, as my hatting will be a bit on hold for a while, I thought I'd post a few pictures of my making it so that I feel a bit better about my lack of sewing! The pictures were taken with my iPhone so they are not great quality (and some are a bit out of focus!) but you can see how huge it is...

About to start blocking the brim.  The Crown is done and hiding in the background.

The blocked brim.  It took nearly every milliner pin I have.

The brim with its edge wired, its a long way around this brim...

Half way round sewing on the brim binding.  Clothes pegs are so useful in millinery!

 

So now I have to decide how to decorate it.  I've made some sinamay decorations but I am still not sure quite what I want.  I didn't make it with a particular event or outfit in mind, it is more an experiment to see if I could do enormous hats as well as the mini ones I usually make. I really like the simplicity of the shape as it is so I may leave it plain for now until inspiration strikes.  With two weeks of IVs to look forward to starting tomorrow I will have plenty of time to think about it...

Food and I

I have a bit of a funny relationship with food.  As a PWCF I have problems with digesting food, particularly with absorbing fat.  This means I have to eat as much food as I can, as often as I can, to maintain a healthy weight; its what I call the CF Diet. I can't remember a time when there wasn't a dietitian/doctor/nurse/parent telling me I needed to eat more-they still do! According to the health pros I should really be consuming one and a half times the recommended number of calories for an adult female- which I find practically impossible!  Added to this pwcf don't produce enough of the hormone ghrelin that makes the body feel hungry, so even tho I have to eat a lot I very rarely feel hungry.  People often say to me "oh you are so lucky you can eat whatever you want and not get fat."  Although I usually just smile at this remark, what I would really like to say is "b*ll*cks!  Getting past the obvious fact that being thin is never going to be any sort of compensation for having CF, this is simply not true.  I do not get to eat what I want, if I did I probably would not eat very much at all and would survive on tea and cake!  What I have to do is eat even when I don't want to, when I am feeling nauseous or when I have awful heartburn and quite frankly this is not fun.  If I don't eat enough the weight falls off me at an alarming rate and I can go from my okish BMI of 19 (the dietitian would prefer 20+, 20 being 'normal') to about 16 or even less, which is getting into dangerously low. malnourished territory.  For most women this would probably be fabulous-easy weigh lose, but for me it means no energy, lungs get rapidly worse and I end up on IVs or worse.  Without the high calorie intake I try and maintain, my health collapses frighteningly quickly, so I really don't have a choice as to whether I keep to my diet.

I would seriously contend that my CF diet is just as hard as any diet to loose weight. Frequently, I get to a point where just the thought of having to eat makes me utterly miserable and sometimes I even start feeling sick.  People often think that I must just 'be used to it', and yes, I suppose I am used to it but that doesn't make it any easier.  It also does not change the fact that its never going to get any better.  I have a target weight to get to and I have occasionally managed to get to it, but once I'm there the slightest cold can result in my falling straight off it again.  Also, maintaining this weight is really difficult, if I relax my intake down goes the weight again.  So, not only is this diet unpleasant it is unending. I am hopeful that a new study that is designed to see if injections of ghrelin could stimulate my appetite may make eating a bit easier if I am actually hungry sometimes. However, the study is still going and it takes a long time for these things to be approved-sigh.  In the meantime I will just have to keep eating...

Fantastic book!

Not really all the same size...

In a bid to make my cf diet a bit more easy to live with, I do tend to eat little and often rather than big meals which frequently get thrown up again... This is probably why I adore afternoon tea and small baked goods. They are much easier to eat and really help keep my intake up.  Also, as Dan Lepard says in his book Short and Sweet (pictured) sometimes 'we like to have our own cake rather than a piece of someone else's!"  I'm trying to widen my small things repertoire a bit and I found a recipe for Chocolate Whoopie pies in Dan's book that looked very promising.  They are two small cakey-biscuits sandwiched together with marshmallow frosting and finished with chocolate icing-nom.  I think I may have made mine a little bit big, and next time my inner pedant will definitely insist I get the piping bag out and make them more tidily! I dolloped these ones onto the baking try with a spoon and I think they were a bit big once put together to be described as bitesize...  I was feeling far too lazy to be more careful, but I think they could look really fantastic if made a bit more effort. I'm not totally convinced by the marshmallow frosting that sticks them together, as I do find marshmallow a bit too sweet even for me and it is so sticky that dealing with it is fairly annoying! However, the little cakey bits are delicious, so next time I may try using butter cream or possibly chocolate ganache. I also like the idea of experimenting with a lemony version and maybe a chocolate and cinnamon one...mmm...

 



Hmm

I've written and rewritten this post several times over the last couple of months but I'm not really sure what to write in this blog anymore.  I always wanted it to be about things I've made or done, shows I've done,  places I've visited and fun, cheerful (preferably shiny!) things, with maybe a bit of awareness raising about CF and encouraging people to sign up to the donor register and donate to the CF trust.  I don't want this blog to simply become a long guilt trip by me to make people give money and I definitely don't want people feeling sorry for me! It was never meant to be a litany of my treatments and health problems, as quite frankly I am fed up of having to put up with them myself, without boring everyone else and repeating it all online.

So, I don't know where this blog is going to go... I was feeling rather down about it all, I hate having to be sensible all the time and not do things cos of my health; it's very annoying, not to mention frustrating, irritating etc.  So I'm going to make a list of things I can still do and that may even be doable whilst on ivs, as they take up such a lot of my time these days. I definitely want to try and resurrect my hat a week project, which got totally scuppered by my health, however, it may have to become hat a month!  But I don't want all the lovely and rather expensive things I've got for hatmaking like my blocks and lots of feathers and materials, to just sit about gathering dust.  They were bought for a reason and they are darn well going to be used!  There must be more things that I can still do so my brain does not moulder and I loose all the skills I worked very hard for.  So on my list, I'll start with more crochet as I can already do the basics but might try some more complicated things. Then there is tatting which is a type of knotting my mum used to do, which I've always fancied having a go at.  More machine embroidery is also on the list as my machine is just sitting about too.... Although this is a bit on pause due to software problems- don't ask, it's very annoying!

Some culinary adventures may also feature in my new list of things to do.  I may finally write my definitive list of the best places to eat tiramisu that I've found! Any excuse to eat more tiramisu... Perhaps I shall embark on a challenge to make all the recipes from one of my many recipe books with my marvellous new Kitchenaid mixer- courtesy of Mr EB and my parents for my birthday.

It is quite ridiculous how much I love this machine! Not only is it a beautiful colour (Ice Blue), but it makes baking so much easier, as I was starting to find holding and using a hand whisk annoyingly tiring.  So now I can sit and let this do all the hard work.  It also has loads of extra tools and gadgets that you can add on, like an ice cream maker and a sausage stuffer so I feel this may feed my gadget hoarding gene too.   Watch this space for, hopefully, a bit more regular blogging...

Oh dear...

... I've not been a good blogger. No posts for over two months-opps. To be honest tho, I've not really had very much to blog about! Work wise its mostly been alterations- which are not exactly exciting! Otherwise, my life seems to revolve around far too many courses of IVs - including the last eleven days being incarcerated in Papworth's CF Unit.  My health really has gotten a bit pants. I've been having IV's every four weeks sometimes only every three, and its not exactly an exciting fun thing to blog about. I'm not one of those bloggers who want to blog every tiny aspect of their lives, as most of the time I find it very hard to believe that anyone would be interested in the banality of my medical regime!  I could go into great detail about my IVs and all the tests I've been having and the problems of being in hospital, but quite frankly it bores me so I doubt anyone else wants to know! All I really want to say about my health at the mo is that it is crap, I have to take too many drugs, but it is sooooooo good to be out of hospital! I was getting serious cabin fever in there!

Another consequence of all these damn drugs is that I have had to cut right back on work. Making sure I hit deadlines has resulted in my having to work when I am on IVs which is really not ideal. Not only am I tried but  my brain is all drug addled so even simple jobs take a lot longer. Worst of all it is very stress full! The last thing I need these days; the consequences to my health really are not worth the money I may earn... So once again, my health is forcing me into changing my life in big ways I don't want. I haven't quite worked out what I am going to do but I am going to have to 'Adopt, Adapt and Improve!'  Suggestions on a postcard....

28 days later...

... And I'm finally line free! Hallelujah! I have gone through exhausted, past shattered and arrived at catatonic. I've tried to think of ways to describe it, having a head full of cotton wool making all my thought processes dull is one part. Having limbs like lead whilst trying to walk through treacle kind of gets the physical aspect. It's just all a bit blurgh. To be really rather annoying, it turns out that the original sample that set off the whole MRSA panic in the first place has been reexamined and reclassed as not MRSA but MSSA, or methicillin sensitive staph aureous... All that barrier nursing and schmozle wasn't necessary! Gah! A least the drugs do seem to have finally worked and my chest has improved and is drier than it has been for a long while, so I'm hopeful that I might actually be able to stay off the ivs for more than just a month - fingers crossed...

I have also had my first proper shower for 28 days! Yes, I know that sounds utterly disgusting and like I have not washed in all that time, but don't panic, I have! The problem with having a port is that the needle is in my left upper chest, and it's covered with a fairly large dressing. You have to try and keep this as clean and dry as possible to minimise infection risk. The port line goes all the way to just by my heart so if bacteria got into it via the access point it could go very quickly right round my blood stream, not something I want to happen. So you have to be really careful to not splash it- not easy, especially when you have long hair which needs washing. This means showering becomes a fairly comedy routine or trying to shower one side of your body whilst sponging round the dressing! The other rather ick thing is that when you take the dressing off after fourteen days there is rather a lot of dead skin and oil from your skin stuck under it, so after 28 days it is just gross, but now I am clean and fresh and can splash about in the shower as much as I like- bliss!

December disaster

Well so far I could really have done without December, and that's before I've even started thinking about Christmas. I had an awful head cold that rapidly went to my chest. So off to Papworth I went and got two weeks of Tazocin and Colomycin, annoying but necessary. It meant that I had to have a line in at the G and S ball, not really an accessory I'd chose to wear to a white tie event, but at least I got to go. The drugs didn't really fully get me better, so I was expecting to have to do another week. What I was not expecting was that a sputum sample I gave them at day seven of the drugs would come back as MRSA positive and that the doctors wanted to admit me for two weeks of three antibiotics to eradicate it.... Argh! Now MRSA in itself is not that much of danger to people with CF as it does not cause a massive decline to the lungs. However it's not something I really want lurking so I could see why the consultants wanted to be so aggressive in their treatment. What is really annoying is that by having an instance of MRSA I was immediately banned from the CF unit because of the risk of infection to the rest of the unit... So I had to have a side room on a different ward. Fortunately, the room was very nice and ensuite, sadly the air conditioning within was incredibly noisy and I could not turn it off. On the first night I was freezing and ended up with an awful headache. Also, the staff are just not the same as the CF nurses, who I've known for years, are experts in CF care and let you sleep undisturbed. They also don't quibble about heating up food that you've brought in yourself, home cooked or bought. As I was being barrier nursed the housekeepers simply woud not heat up anything for me... Apparently once something has been into a barrier nursed room it is not allowed out again, even if it's going to me nuked in a microwave! However, this was not a protocol observed by all of them, some of them would, some of them lectured me on infection control and would not! I've lost quite a bit of weight as a result which will result in the dietician yelling at me! Being barrier nursed is just frustrating!

To my further annoyance five days into the treatment the docs tell me that actually I might not have MRSA! Apparently as the lab has moved from Papwroth to Addenbrookes some communication issues have sprung up. The lab did not ring up the CF nurse to tell them of this MRSA as they are meant to, it just popped up on the computer when they checked for the results. So Sam the CF specialist nurse rang up and they confirmed it was MRSA. However, because the lab has had a few mix ups in the aftermath of the move my consultants got the consultant microbiologist to re-evaluate my results to make sure the diagnosis was correct. So possibly hurrah I don't have MRSA! Eventually the consultant got back to them saying that the initial pattern of growth for my sputum looked like MRSA but after a while of continued growing it didn't! So they are resending several of my samples to be more thoroughly tested to try and get a definitive result. So they know it's definitely staphaureous, which I have grown occasionally for years, the question is, is it methicillin resistant or not??? Apparently it is an 'unusual organism' and they need more data to decide. In the meantime I am left with all this to-ing and fro-ing as to whether all this treatment was actually needed. This regime is pretty hard core, ciprofloxicillin, fosfomycin and teicoplanin are all very strong. But I'm carrying on with it just in case, but it's only cos the lovely Dr Barker is very understanding, that she let me out after a week of incarceration and dropped the dose of fosfomycin from four doses to three. Doing a dose every six hours results in very little sleep and near hysteria! I also may not have needed to be barrier nursed at all if I don't have it, what a waste of bloody time that would have been. Darn microbiologists! I don't think they realise that the bugs are actually from people and how much stress messing up causes them...

A Hat a Week

Recently my health has been rather depressing. I'm now on ivs about every six to eight weeks, when once I only needed them every six months. My lung function is about 50% now, which to be honest is crap and means I am tired all the time and I can't do things that I love, like playing the flute or lindy hop. This combined with some other health rubbishness which I won't go into cos its all a bit raw still, has made me a bit depressed. I've been prone to depression since I was a teenager and I can now recognise the signs that mean I'm on a downward spiral. In an effort to prevent myself sitting in a corner and brooding about how unfair life is, why me, blah blah blah I have decided to start a new project. I find that forcing myself to keep busy and think about other things does help stop me getting too depressed and gives me time to try and sort myself out. So my project is A Hat a Week- pretty simple, I am going to make a hat a week, although I include in 'hat' pretty much anything that you wear on your head, so veils, fascinators, flowers, tiaras, anything that attaches to your head! This will of course be work and health dependent sometimes I may not manage it, equally if I don't have much on if I may even make more than one hat-how reckless and daring!

My project has also turned out to be computer dependent too! I have actually had this post and hat ready for about two weeks, but unfortunately my faithful old computer, emphasis on old, turned up its toes and died-again... So I have been unable to blog properly cos the ipad doesn't really do photo uploading easily. Thankfully Mr EB really is a computer genius and managed to get all my files off the old computer and apparently can even get it working again, although this involves time which is something that he does not have a large supply of. So eventually I shall get the old machine back, but in the meantime I am borrowing one of Mr EBs spares!

So the first Hat a Week is another bridal one. This is a mini pillbox made from ivory sinamay and finished with an ivory ribbon and silver wire spirals set with swarovski crystals and freshwater pearls. When I use this block again I am probably going to use it slightly differently in that instead of blocking the whole hat with one piece of sinamay I'm going to block the headband and tip as two separate pieces then sew them together. This should make it easier to turn the sinamay under at the bottom, with one piece there is a whole lots of fibre that has to get turned in!

Hats and Hormones

My bridal hat collection is coming along well. In fact I have far too many ideas of things I want to try and designs I want to make, than time or energy to fit them all in at the moment. I'm currently taking part in a medial study at Papworth, which is very interesting but rather time (and blood!) consuming. They are investigating if a pwcf's appetite can be increased by supplementing our production of ghrelin -the hormone that controls appetite. Annoyingly pwcf do not produce as much ghrelin as they should, so although we need to eat loads to maintain our weight we hardly ever feel hungry. Forcing yourself to maintain a high calorie diet when you just don't feel like eating is not a lot of fun, so anything that will make me actually feel hungry for a change is good in my book! I already tried to do the five week programme in April, but i got ill half way through so had to stop to have iv drugs. This time I had a total nightmare with my port.  It stopped working half way through a blood test and then had to be re accessed twice more to finally manage to get it working again and hep locked properly-sigh. Am now very sore from having three needles shoved in the one place and did not get to start the second part of the trial.

Oh well... back to the hats. This one is a rather fun button hat covered in pleated silk crepe to resemble a shell. It is finished with a huge silk and tulle flower. I love the flower it's just so big and bold whilst still being quite elegant.

These photos are sadly not very good as, (A) the photos are by me and I am not that good at it! (B) when photographing something that is basically the same colour all over it is really difficult to get the detail to be clear and (C) the light really was not good enough for photos, but I wanted to get some pictures of it up before I go on a little holiday so won't be able to post... When we're back I will get Mr EB to take some much better ones!

Port Love!

It may have been a bit traumatic getting my port into me, but my God it is a marvellous thing! I've been having ivs for a week now in an attempt to regain some lung function and get me a good summertime, and it is soooo much easier than faffing with a long line. There was no digging about in my arms trying to find a vein that works and would take a line and I don't have to spend two weeks with one of my elbows basically immobile, as that was the only place that lines would work. It took two minutes to pop in a needle and hook me up!! Brilliant!!! It hurts a little when the needle is inserted but nowhere near as much as having a long line inserted. Also it stops hurting practically immediately- bonus! I am also taking ciprofloxicillin which I could not take through a long line as it makes my smaller veins stop working, so hopefully this will really help with the bugs as they have not been hit by this antibiotic for ages. It is also wonderful being able to bend my arm whilst taking the drugs. I can even play the piano whilst hooked up! Sadly the drugs have not dramatically improved my playing...! All in all I am a total port convert, so if anyone out there is thinking of having one I say- do it!

Freedom!

At last I've been released from Papworth! The port went in successfully and after a week in hospital to do some amminophiline and extra fluids to try and clear my chest out as much as possible, they agreed I could finish the second week at home. I am totally knackered as I am on fosfomycin and tazocin, and unfortunately fosfomycin is four times a day or every six hours, and tazocin is three or every eight hours... Now even stretching the numbers a bit so i can do both drugs on some doses, I end up doing a minimum four doses a day which takes up loads of time! It also means I get a maximum amount of six hours sleep in one go. I usually get a minimum of nine, so I do feel rather like I've been sat on by an elephant! However on the olus side I am feeling so much better compared to the usual drugs i take. So hooray for the port as I could not take the fosfomycin in a long line as it buggers my small veins up. I am still fairly bruised and sore, but hopefully this will all have been worth it and I will actually feel better for a decent length of time. Fingers crossed!