Winter 2012

Hi everyone!  This is a very overdue update which is probably going to take me quite a while to write so I've set aside the whole week to write it.  As you've probably guessed, my energy levels are so low at the moment, it's a case of writing a couple of lines and then taking a rest before carrying on so that's precisely what I plan to do and hopefully I'll get there in the end.

August saw the event of my Wedding in Crear, Scotland.  Despite the not so promising weather forecast, it turned out to be a beautiful day; sunshine, pure blue skies and a sparkly sea!  As cliched as it sounds, the day could not have been more perfect.  We married on a secluded beach at lunchtime with just the florist and photographer as our witnesses, then spent the rest of the day sat outside our cottage in the sunshine chatting, laughing and indulging in a few cheeky sips of champagne!  We spent 4 days up in Arghyll and on our return moved into our marital home, a beautiful 3 bedroom cottage with lovely views, a log fire and almost total seclusion.

It wasn't long however until my luck turned again and I ended up with what was suggested to be an intestinal abcess, following 3 infections in two months.  Again, the pain was shocking and my tract was draining far far too much scuzz to I was admitted to hospital in the early hours, only to be discharged when it stopped 'leaking'.

Having had one infection after another, the CFS, the joint pain, and not being able to tolerate my feed at more than 50ml per hour has seen a dramatic decrease in my energy and strength which has deteriorated very rapidly over the past 6 months.  Reading last years' blog entries brought home brought home how degenerative this evil illness is, I thought my activities were limited before and now I can only hope to see that level of energy return.  It just goes to show that you never do know what you've got 'til it's gone.  Every night I hope that the next day will bring just a little more energy with it, to make me able to do a little more but it would seem at the moment, I'm pure out of luck.  I remain in hope though and have learnt about 'pacing and switching' which I am determined to focus on in the hope it could offer me a little more of my life back.  My main trouble seems to be totally overdoing things, taking an activity too far which can take days or weeks to recover from.

A few weeks ago my feed and water tolerance went down to zero over the course of a few days. In dangerous fear of dehydration I had an emergency appointment with my GP who sent me to hospital for tests.  Fortunately Peritonitis was quickly ruled out and x rays showed the tube was still placed correctly.  I was placed on complete system rest for 7 days, nil by mouth and tube and iv fluids and meds.  It seemed like a very long stay largely brightened by a few visitors which as always, were a total delight!  Finally I was allowed to restart my feed and water at 10mls per hour and I managed to increase it enough to convince them to let me come home with the promise that I would rest like crazy, do no exercise and return if things went downhill again.  To my horror on getting home I'd hit six and a half stone again and was covered in huge bruises (I went through 6 cannulas as my veins kept collapsing) and could barely stand. I've had to put my wedding ring on a chain around my neck because my fingers are so thin now they won't stay on. At the time of typing this I've been in bed for over a week and still feel no improvement of energy and believe it's largely due to CFS.  Now, I KNOW I was overdoing things before my admission, I was spending a couple of hours at the field each day only to come home and get straight into bed for the rest of the day but surely that can't be the only reason?  I just don't know.  I feel so miserable right now and see no end in sight, there are things I should be doing; working, looking after my pony...But just brushing my hair is wearing me out at the moment.  My whole body aches and shakes, I can't control my body temperature for jack, I have a constant headache, limbs made of lead, I've lost my voice, and that's before I even start on my gastroparesis...I know that things won't always be like this but it's very difficult to report to friends that I still feel "the same" when asked, when I wish I could answer "Loads better thanks!"

I suppose the only thing that will get me through this is understanding and support.  I'm very lucky on this score and I do have some truly amazing friends both in 'real life' and online who do understand chronic illness.  One of the hardest parts of this is dealing with the frustration of not being 'better yet',  Yes, it's hard enough for me, it must be exceedingly annoying for an onlooker waiting in the wings with plans that I simply just can't join in with right now.

I guess things will all sort out in the end....Please bear with me, I'm doing all I can. Even though sometimes it seems all I can do is lie in bed.  When I feel a little better, you'll be the first to know.

This has taken a little longer than I planned to write and now we're into the second week.  I'm sure there's plenty I've missed out but I'd just like to stick this up really rather than spend another week on it, then again, by that time things may have changed completely, I may be dashing about like a loon, partying, and have to scrap the whole damn post....

 I remain in hope!

Thanks for stopping by and all the lovely messages and comments I receive from my online friends, via this page, facebook and inspire.  They mean everything to me and as always if I can help anyone in a similar situation in any way, I'm only a message away.

Z. xxx

Latest Update

High time I updated this almost abandoned blog!  If I still have any readers left, thank you for returning and I'll try to keep this as concise and as positive as possible.

In January I had an appointment with a geneticist from Cambridge who travelled to my local hospital to meet and discuss the proposed diagnosis of Ehlers Danlos Syndrome.  After an hour of assessment he agreed with my GP that I have this disorder, hypermobility type which has been the cause of my painful knee and shoulder joints and formed a link to my Gastroparesis.  He recommended I try to strengthen the muscles around my joints in order to prevent future dislocations and pain, easier said than done, but I have been trying my best!  His suggestion for the chronic lack of energy which I have been experiencing tenfold since my tube infection in December is most likely due to CFS (Chronic Fatigue Syndrome) but with no current treatment, this is not a particularly helpful diagnosis.  Things have been very up and down over the past four months, both physically and mentally.  Some days I don't feel too bad and if I 'save' up energy, I am able to do a few 'normal' things even though I feel wiped out for several days afterwards, I am determined to try and live as well as possible.  Other days are a terrible struggle, I am sleeping anywhere between 12 and 20 hours a day and much of my awake time feel somewhat shaky, weak and nauseas.  I am still working although currently experiencing a gastroparesis flare which has seen me take a couple of weeks of work which has led to my mood deteriorating somewhat, it's very difficult not being able to go to work since it leads to feelings of failure which doesn't sit very well with me.  Despite this I am managing to go to the field once a day to look after my pony which is something which brightens my day somewhat!

I had an appointment with my gastroenterologist yesterday.  The great news is, I weighed in at 46kg which is a HUGE improvement and now puts my BMI at 18.7 (A healthy weight at long last!!!) as opposed to 15 which it stood at before I got my J tube.  He has prescribed some new meds to help with my ongoing nausea and possibly assist with my gastric emptying.  He has also made another referral to Professor Epstein in London for the gastric pacemaker, he seems to think I would be a good candidate for it but as I think I've mentioned before, I have heard mixed responses to this ranging from success to no improvement whatsoever.  It's quite a big surgery and I am very unsure about it at the moment but knowing what the NHS are like, I don't think I need to rush any sort of decision about it for a fair few months at least!  Tube feeding is going well and I am feeding at 70ml/hr during the day and hydrating with sterile water at 50ml/hr overnight.

On to more positive matters, I have finally booked my wedding for mid August which will be an extremely low key affair on a beach in Scotland, just Dave and I and a couple of witnesses which we will meet just before the wedding.  Some people have pointed out to me that I don't seem as excited or 'bridezilla' about it as perhaps I should, but although (unsurprisingly!) I am absolutely thrilled to be getting married, anybody who has lived, or currently lives with a chronic illness will know and understand, it is very difficult to make plans and moreover look forward to things, not knowing how one will feel from one day to the next, let alone in a few months time.  Being overly excited often, in my experience, leads to disappointment which I could really do without right now so I prefer to be realistic and take things day to day, week to week.  I am just hoping that I will feel OK when the time comes, at least enough to enjoy the ceremony and a small celebration afterwards.

I think that just about wraps everything up for now.  Oh, not quite!  Just wanted to give my friend Nat a quick mention who is currently really struggling with her GP and in hospital, you can check out her amazing blog at http://helpme-minx.blogspot.co.uk/ She has been a massive source of help and inspiration to me and many others so please, drop by and give her some support!

Much love.

Ziggy. xxxxx