Weekly roundup

I’m doing my roundup a day early this week as I’m hoping to visit my bezzie mate (who lives 40 miles away) tomorrow and won’t have time.  Having said all that, it’s due to snow tonight so lord knows whether I’ll even be able to get out of my village in the morning as our roads don’t get gritted!

I’d like to take this opportunity to thank my lovely readers for all the support shown to me over the very difficult situation with my Mum.  You were so kind, generous, understanding and non-judgemental……..and I really needed that.  Well, apart from the one commenter who obviously behaves as badly as my Mom, who hurts her children the way my Mom hurts me, and who basically wanted to justify her own behaviour – she needed to shut the fuck up.  This week has been like night and day.  When I’ve been to Mum’s house there has been no half pint tumbler of vodka next to her seat.  She has been lucid.  She has been awake.  She has joined in the conversation.  She has even made me laugh.  She has not been a half asleep, slurring, confused, snappy, irritable drunk…..and it’s been lovely.  It won’t last though, obviously.  She’s an alcoholic.  But it’s still nice to know she still cares enough about me, deep down, to try.  It’s felt like a holiday.

I have been deafened, however, by the silence of my readers over my low histamine in foods research.  Not a single comment!   I’m stunned at the lack of evidence all the low histamine food lists are based on.  I’m angry that people online are making money out of sick people based on no truth whatsoever.  I’m mortified the lists are, for the most part, based on nothing but pure guesswork being as though my health (and potentially my life) is so dependent on what I eat.  And I’m surprised I’m the only one to feel this way (well, apart from my mate Sarah who wrote to me as mortified as I am).

I’ve had a cold this week.  At least, I think it’s been a cold – hard to tell when you have ME and feel like you’re coming down with some evil lergie every second of every day.  I’ve been sneezing and bunged up for nearly a month now, as well as extra achy and exhausted.  I put it down to my mast cells playing up and giving me hayfever-type symptoms.  But then last weekend I started to absolutely stream, my head was banging, I sneezed my head off and I could barely put one food past the other.  So I thought I had a cold.  But then 2 days later it just dried up.  I still feel like it’s lurking though.   That’s the thing when you have diseases which affect your immune system – it doesn’t behave as it should.  So I still don’t know if I have/have had a cold, I just know I feel extra shite and am struggling to find the energy to get dressed in a morning.

Speaking of which, I need to get up and take Bertie out – it’s going to be bollock-freezing cold on my scooter this morning as it was -10C overnight.  I might need 2 hot water bottles stuffed up my jacket, not just one, and I’ll have to hunt out my balaclava 😉  I’ll leave you with a photo of a young male deer fawn I took the other day in the snow – good job I didn’t have the dog with me, he would have chased it from here to France!

 

 

 

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12 thoughts on “Weekly roundup

  1. Kara

    When I read your last post, I thought I submitted a comment? It may have been a moment of “oops, that made me sound like an idiot, so nevermind.” It happens. I’ve been following your blog for a while, so I suppose you can consider me a bashful follower ;). I do love your blog – the amount of thought and time you’ve put into it is obvious.

    As someone with digestive problems, diet modifications are necessary and the most frustrating part is the ENDLESS trial and error. Micromanaging every single dietary choice takes the fun out of eating, doesn’t it? I would love to see more focus in the medical community on diet for disease management, and the younger doctors seem to be more in tune with this, but at the same time, there’s so much variability how the individual will respond to a prescribed diet. I guess that’s where the discrepancies come from since it’s us guinea pigs who are making the lists, and I agree with you – trying to make money off of that information is rotten. If I ever figure out a way to cure my Crohn’s symptoms through diet, or any other way, you’d better believe it’ll be free for the entire world to use.

    Cute buck, by the way! It looks like you were really close to him, how cool!

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    1. Jak Post author

      Hi Kara

      I checked through my comments to see if I’d missed one but couldn’t see anything from you. I do that all the time – think I’ve replied to an email only to find it in my drafts folder or something 3 months later 😉

      Sorry to hear about your Crohn’s symptoms – I have a friend with it and it’s an awful and painful disease 😦

      Yep, the whole diet thing does my head in too. I used to *love* my food, it was the one pleasure I had left and now that’s gone :-/ I wish I’d eaten more gummy bears while I had the chance!

      I cheated a tiny bit with the buck. We have a deer park nearby – they’re not tame but they’re fairly used to seeing people so you can get close(ish) with a very long camea lens.

      Jak x

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  2. Lisa

    Sorry – long time lurker, late night reader (in New Zealand). I wanted to comment about the histamine posts as I have EDS, POTS, gastroparesis and MCAD plus the fun of brittle asthma and just diagnosed with Primary Immunodeficiency. I am living on highly salted cheese crackers with tiny bits of normal food (which I instantly regret!).

    My doctors don’t assist me with anything dietary as dieticians have given me advice in the past and it’s essentially useless.
    I have extremely high IgE levels, over 24,000 which my Immuno says is allergy but skin prick and RAST tests have basically shown I’m reacting to everything – so how can I help myself? I didn’t want to look stupid but I need some help

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    1. Jak Post author

      Hi Lisa

      Wow, you have a LOT on your plate 😦 I’m so sorry to hear of everything you’re going through. Have you heard of the Inspire forum https://www.inspire.com/groups/rare-disease-and-genetic-conditions It’s based in America but has lots of overseas members too and is a really knowledgeable place to ask questions. I also did a quick google search and found a mast cell support group on facebook based in NZ https://www.facebook.com/groups/themastocytosisnetworknz.global/ I don’t know if you’ve had mast cell disease ruled out? This facebook group might tell you who to see to do that in NZ.

      Jak x

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      1. Lisa

        I do have it MCAD. Anything NZ based is generally tiny and often run by one person but thanks, I was on the Inspire EDS page – kind of got sick of it and getting no replies so switched to FB groups. Thanks anyway, the battle continues! Hope you have a good 2016 Jak xx

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        1. Jak Post author

          Sorry to hear you’re struggling for support Lisa 😦 Must admit I don’t do the forums either – the Americans have access to doctors that I don’t, and I can’t tolerate any of the drugs recommended to treat MCAD, then I got fed up of everyone telling me that this diet or that diet would cure me which is nonsense. The UK is about as thin on the ground for support as NZ by the sound of it – I left the only British group because we weren’t allowed to discuss Ehlers-Danlos and were made to feel that having MCAD wasn’t as bad as having Mastocytosis :-/ I started blogging so that I could just say what I liked, never thinking anyone would read it and here I am half a million visitors later, yikes! If you have the energy you could maybe start your own blog? It helps to vent if nothing else. Wish I had some answers for you. Jak x

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  3. Robin

    So glad to hear you had a pleasant visit with your mother. With any luck, maybe there will be more of these than the less desirable ones you’ve endured.

    As for the low histamine list – haven’t looked at your new/improved version but will do that today. Don’t be too bummed about the lack of comments, whether about the histamine list or your posts, in general. I can’t speak for others, but I only say something if it relates to me and my situation (mine pales in comparison to yours and that of so many others). I can only sympathize with the details of your story. I’ll try to do a better job in showing that support.

    Hang in there!

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  4. Livvy_sheep

    Jak,

    Love the picture. I haven’t been up to reading thru your research but as I’m about to start my illumination diet I am really looking forward to reading thru all your hard work and findings. It is greatly appreciated from someone who is no fit state to achieve that personally. Thank you thank you thank you, I can only imagine how hard you must have pushed yourself to accomplish it. It’s so sad what you wrote in the comments about the lack of mcad support on the uk.. I did not know this as I haven’t even tried to find support other than reading your blog! You keep me sane and make me laugh when I’m bedbound and feeling so lonely. Thank goodness you choose to come here and speak your mind! Many hugs and thanks again. Xxxxxx

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    1. Jak Post author

      Bless you Livvy_sheep for taking the time and energy to comment 🙂 Good luck with the diet – the first 6 months are the hardest but it gets easier! Jak x

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  5. Jen

    I hate going to the doctors & being asked what I’m allergic too . . . just about everything it seems now! I too would like to see more of an effort on the part of medical professionals to understand where/why/what is up with mast cell activation & an appreciation for the day-to-day challenges of patients, especially food. Let’s get to the root of the problem, rather than covering up the symptoms, & please, don’t tell me to just eat more, if only it were that simple!

    Stunning pic by the way!

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    1. Jak Post author

      I hear you Jen. There is zero understanding of mast cell disease. Mind you, I feel there’s zero understanding of ANY of my 3 diseases – I just sit at home and suffer in silence, pointless going to the doctors as they have no clue what to do with me esp as I can’t take drugs. Jak x

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