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
Good to see you blogging again zigs! dr Epstein is supposed to be really really good so I hope it goes well for you, whatever your decision is. I know what a tough call it is but you're right....you will surely have a long time to think about it knowing the NHS lol. thank you so much for the mention! I'm always thinking of you babe and congratulations on setting a date! it sounds like a lovely idea and much less hasstle than the usual formal affair. Sending you massive hugs you gorgeous little pixie xxxx
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