Weekly roundup

I am 9 days into my stay-cation and so far it hasn’t been quite as restful as I’d imagined.  For a start my parents went off to stay with my brother last weekend on the train, so I had to organize disabled care for my Mum as our local station has no lift (she literally has to be taken across the train tracks in a wheelchair to the opposite platform).  I actually went on the train with them, found their seats and got them settled, nearly getting myself stuck on there as the doors closed, and they were finally on their way.  I just assumed my brother would be on the platform at the other end to meet them.  You should never assume anything.

When they got there he was nowhere to be seen.  They were also faced with about 200 steps up to the main Console.  Instead of telling my Mum to stay put while he found help and/or the disabled lift, my Dad shoved my Mum up all of them.  She was then so ill by the time they got to my brother waiting in the Console she couldn’t even speak and never recovered.  She felt dreadful the entire time she was away and I spent the whole time worrying I would get a phone call to say she’d been admitted to hospital.

This is why I don’t ask other people to help with my Mum – it’s because the men in my family are fucking useless.

After they returned, I’d gone to meet them, taken them home, got them some bread and milk from the supermarket and made sure they had something to eat for their supper I finally felt I could start relaxing – four days into my ‘holiday’.

My hormones, on the other hand, had no intention of taking a break.  My migraines these days are usually confined to ovulation and menstruation…….until this week, when I’ve had 2 stonkers in one week and another day where I felt dizzy as a blonde on a roundabout.  I’m also struggling with constant nausea and easy satiety – I’m permanently hungry but after two mouthfuls of food I’m full.  Consequently I’ve lost 4lbs without trying.

The cooking/freezing experiment food-wise has had its share of both successes and failures.  My Spicy Chickpea Cakes and Shepherd’s Pie cooked well from frozen but Quorn burgers turned out to be too thick and were burned on the outside and still solid in the middle, so in future I’ll have to defrost them a bit before cooking.  Oven chips froze well, as did soup, lentil dal and pates though the latter three all needed to be defrosted before heating through to eat.  The biggest disaster was my Lasagne which took so long to cook from frozen it just tasted yuk.  It’s been fantastic to have a break from cooking though and I’m going to try my hardest to freeze more food in the future which will be great on those days I’m not well enough to cook anything.

On a more positive note the weather has, for once this year, been lovely and I’ve had a couple of days just pottering around outside or lying in my swing seat.  On Friday my fabulous friend K suggested we go off for the day and told me about a nature reserve by the estuary which is known for its dragonflies.  We took a picnic lunch and had a fab time sitting by a pond spotting insects, which I appreciate isn’t everyone’s cup of tea but we liked it 😉

Photo of dragonfly

Photo of dragonfly

However, my lovely relaxing day didn’t last long as it was when I got home my cleaner contacted me wanting to swap my days to make her life easier and when I wouldn’t she quit on me as outlined in my last post.  I seem thwarted by outside interference never to have any down time :-/

However, I still have a week left of my hols so with a bit of luck and the wind in the right direction I’ll get a chance to unwind more.  Oh, apart from Wednesday when I have to go through to the city for a follow-up appointment at the Hospital about my jaw joint!

 

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8 thoughts on “Weekly roundup

  1. cathyd79

    Hi Jax,
    So sorry you’ve been having a crap time I hope you manage to have a better week this week ! X
    I’m new here hi! I’m Cathy and I’m pretty sure I have HIT I really want to get a diagnosis ASAP as I can’t live like this anymore it’s driving me crazy and bringing me down . No one gets it most think it’s in my head and quite frankly I just want to speak to someone who at least has heard of the dam thing!
    So my question is who’s the head histamine honcho who do I need to sell my kidney to go and see? I can get to London which is where I presume that are ?

    Thanks in advance and keep up blog I love it , it keeps me sain xxx

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    1. Jak Post author

      Hi Cathy

      Really pleased you’re finding my blog helpful, but sorry to find you here as I know it means you’re suffering.

      The only guy to see in the UK is Consultant Immunologist Dr Seneviratne at St Marys in London. Sadly he isn’t funded to diagnose or treat histamine disorders on the NHS though so you will have to see him privately. His consultant fees (you need at least 2 appointments) plus testing could set you back nearly a grand I’m sad to say 😦 A link to his contact details here: http://www.nuffieldhealth.com/consultants/dr-suranjith-seneviratne

      I’ve heard he’s going on a 4 month sabbatical abroad though, from Nov-Feb so if you want to see him I’d suggest you do it asap. We’ve all had problems with his secretary, however, who is pretty useless so if she doesn’t ring you back keep badgering!

      He’s lovely and will do his best to help. Let me know how it goes if you do see him.

      Jak x

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      1. cathyd79

        Hi Jak,
        thanks for the link to the London doctor I managed to get through but unlucky for me and anyone else who needs to see him he is no longer taking on patients as like you said he is on a sabbatical until March next year and no one else will take on his patients 😦 so it’s a grin and bare it at least I’ve found an amazing nutritionist/ dietitian who’s helping massively and at least has heard of it ! For anyone else her name is Yvonne bishop western and has clinics in Harley street and down here in the new forest .

        Cheers x

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        1. Jak Post author

          Really sorry to hear you can’t get to see Dr S for months Cathy 😦 But thanks for the info on the dietitian – I’ll add her details to the blog so that others can contact her if that’s OK. Jak x

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  2. glo

    Cathy I hope you find someone soon. Just knowing that you really do have something and aren’t crazy is a big help. Controlling things is hard but now when I have a problem I at least know it’s a real problem not my imagination. 10 years of diagnostics and doctors just thinking I was a hypochondriac. Good luck finding someone. I’m in the states so can’t help with a referral but totally understand your frustration. Your comment about someone having heard of these things is right on. Even now that I have been diagnosed with mast cell activation disease I have 1 doctor that doesn’t really believe in it. Thank heavens I just found 2 more that know what it is and are willing to try to understand my problems and help me work at finding alternatives to certain meds I need like something for my osteoporosis. Again,I wish you well and hope you find some relief.

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    1. kneillbc

      Doory your staycation isnt quite as relaxing as you’d hoped. I live waching dragonflies, too. Are they a wide variety of colours there, or mostly like the brown ones you photographed? At our cottage in Ontario they were often irridescent blue, or green, or back, even some red ones. Amazing!

      To Cathy- hang in there. I am four years in, both of my local hospitals refuse to see me because they just dont know what to do. I havent eaten in 21 days, but Im hoping to get a dmitted to another hospital tomorrow- finally get the testing I need, get some form of nutrition into me, etc. And then I will get the College to take every single doctor who turned me away and drag them, very slowly over the coals. I will not let them do this to one more person. It’s so hard to get things done properly? The $ I have cost the system, but if they had just sent me to the right person right away, I would have been treated two years ago, when I could still eat, when I havent been traumatized over and over again. (I had eight anaphylaxis episodes in 5 days a few weeks ago) Hang in there, get that diagnosis.

      And Jax. Turn off your computer…….take a tech vacation too 😀

      Karen

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      1. Jak Post author

        There are lots of different types of dragonflies here Karen – the blue and green ones seem a bit more wary of people though so didn’t come near us!

        I’m so sorry to hear things are so bad for you right now matey 😦 You know I went through a similar situation before I got diagnosed and remember how terrified I was and how alone I felt. Reacting to everything you eat is, while knowing that none of the doctors have a clue what’s happening and don’t seem to care in any event, is petrifying. I really hope this time they finally help you.

        Sending supportive hugs.
        Jak x

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