The Reality Of Christmas

Christmas shines a spotlight on relationships.  We all have a romantic view of how the holidays should go, with beautifully behaved children, thoughtful spouses, wonderful food which magically appears on a prettily decorated table, visits from friends and extended family and everyone laughing and playing games around a log fire while drinking eggnog and stuffing our faces with mince pies.  The reality, however, is often delinquent children, spouses who treat you like an unpaid skivvy, food which takes days of backbreaking preparation, visiting parents who point out everything you’re doing wrong, friends who drink too much and outstay their welcome, and the woman of the house ending up crying in an exhausted heap on the stairs wondering why no-one appreciates her.

Relationship breakups sky-rocket over Christmas even amongst healthy people and when you add chronic illness into the mix things can get even worse.

I, of course, have the opposite problem to all of the above.  Loneliness is spotlighted over Christmas, when the entire world seems to be surrounded by friends and family and I am lying in bed alone at 4pm watching everyone on the telly having a wonderful time.  Even if I were surrounded by family I couldn’t bare the noise, join in with the games or eat most of the food and would still be in bed alone at 4pm with a flat battery while the party carried on without me.

But you don’t have to be on your own to feel lonely.  I remember Christmases when I was healthy and in a relationship when I’ve felt lonelier than I ever have single.  I’ve been to parties where I’ve stood in a crowded room and felt like the loneliest person on the planet.  Being alone and being lonely are two very different things.

It seems to me that over Christmas expectations often don’t live up to reality.  We’re constantly bombarded with unrealistic images on TV of perfect family Christmases and forget that, just like photos of models in magazines, the images are airbrushed into perfection.  Unless you have an army of paid help it’s almost impossible to have the perfect home and table groaning with home-made delights.  Your husband is not going to magically turn into Superman and your children are not going to have a personality transplant.  You are not going to suddenly have a great relationship with your in-laws and Santa is not going to provide you with a month’s worth of extra energy in your stocking.  Realizing that Christmas is probably going to be tiring, stressful and a lot of bloody hard work makes the reality less disappointing and leads to less confrontation.

When you’re ill, lowering expectations is even more critical.  It’s important to discuss Christmas with the significant people in your life well before the day.  Your spouse, children, friends and family might expect you to rally and ‘make an effort’ to act like your healthy self which can lead to disappointment on all sides.  Talk about your reality and how much you can participate without your health suffering, so that everyone has chance to get their head around the situation well in advance.  Realize that there may be times over Christmas where you may feel sad that your life has changed so that you’re not totally blindsided.

As a singleton I treat Christmas like an actual holiday.  I give myself permission to lounge around doing whatever the hell I like.  If I want to sleep all day I sleep all day.  If I want to eat crap I eat crap, even if it gives me hives.  I take long, candlelit baths. I spend way too much time on Facebook than is healthy chatting to my other single sick friends, or I sometimes impose a complete internet ban and give my brain a rest.

I realize that problems don’t go away just because it’s Christmas.  My Mum will probably be more drunk on Christmas day, not less, and my parents will not take the day off from bickering.  I will not magically feel well, in fact I’ll probably be having a pretty rough day due to the extra effort involved in the run up to the holidays, and I will not suddenly be able to drink alcohol without passing out however much I’d like to.

Most importantly I try not to be nostalgic about the holidays.  I remind myself that, when I was healthy, not a single Christmas went by where I did not have a blazing row with my partner, usually for going out on Christmas Eve and getting hammered with their mates then spending Christmas day hung over, or for spending the whole of Boxing Day watching sport on TV.  My parents annoyed the crap out of me and I felt obliged to visit my step-brothers despite the fact I don’t like either of them – at least being sick gives me an excuse to opt of shit I don’t want to do!  There are definitely things I miss about my healthy life, but there are definitely things I don’t.

Ultimately, Christmas for me will be a mixed bag.  There will be times I’ll feel content and times I’ll feel miserable.  There will be times I’ll have some energy to join in, even if that’s just online, and times I won’t.  There will be times I’ll feel lonely and times I’m glad I’m on my own.  There will be times I’ll want to strange my Mum with my bare hands and times I’ll be sad this could be our last Christmas together.  No change there then.  And that’s the point.  Christmas is just a day like any other.  It’s our expectation that it will be something wonderful and the disappointment when the reality turns out not to meet that expectation that makes us sad and angry.  The more realistic we are with our expectations and the more prepared we are for the reality of the holidays hopefully we can find joy in the good bits and acceptance of the bad.

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9 thoughts on “The Reality Of Christmas

  1. Faye Amber Bryan

    Hiya, I enjoy reading your blog, you write really well. I just wondered what part of your illness means you pass out when drinking? I have suffered with bad health for the last 4 years (since I was 30) and since then I haven’t been able to drink as it just makes me feel rubbish. Before I was 30 I went through a phase of passing out when drinking. I am a lot better health wise than I was, I work full time and live a relatively ‘normal’ lifestyle. I have hypermobility amongst other things but to enjoy a few drinks would be so lovely.

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    1. Jak Post author

      Thanks for the comment Faye 🙂 My drug reactions (and remember alcohol is a drug!) started with passing out one Valentines day after having a couple of glasses of wine when out for a meal – I’ve never been able to touch alcohol since as it causes anaphylaxis, I assume due to my Mast Cell Activation Disorder.

      Alcohol can cause issues for many people with Mast Cell Disease for reasons which aren’t yet understood. Most people with M.E. also feel rubbish if they drink (though they won’t have the anaphylactic symptoms that people with MCAD do), but being as though I personally think M.E. is a type of mast cell disease that comes as no surprise. People with hypermobility are more prone to mast cell disease (an estimated 1 in 10 people with Ehlers-Danlos Syndrome are now thought to also have mast cell disease). There’s more about my history of drug reactions in this post https://mastcellblog.wordpress.com/2013/06/25/drugreactions/

      Jak x

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  2. Holly

    Hi Jak,
    Thanks so much for your very informative blog, I have been reading through posts and comments with great interest as I have recently been told by a consultant gastroenterologist that he thinks I have ‘some sort of mast cell issue’ and prescribed oral Sodium Cromyglycate for my symptoms. Unfortunately he has not told the GP that he thinks it is a mast cell issue, only that he has given me Cromoglycate for ‘food sensitivities’. My illness goes far beyond food sensitivity, although food plays a large part in things, but I feel I need to have a proper diagnosis to get anyone to take my huge raft of symptoms seriously. I appear to fit the MACD bill perfectly (with the usual flushing, constant urticaria all my life, dermatographism, food/drug sensitivities and so on) in fact reading through the symptoms has been a revelation to me, explaining many things, like the bizarre swelling of my mouth/lips that I experience regularly which no one else has been able to explain. One of the worst issues is my extreme fatigue which has been increasing for about 8 years, and now is so bad that I am effectively disabled, and my husband has had to quit his job to become self-employed and care for me and my daughter. All of this has been brushed off by the NHS, who have told me variously that I am simply anxious and having panic attacks regarding the food and drug sensitivities (apart from one doctor who refused to try any more anti-depressants after I had an extremely bad urticarial/flushing attack in response to them which she witnessed and was concerned I would go into anaphylaxis.), that I have Chronic Fatigue which they cannot treat and that my other symptoms are not significant.

    I am hoping that I may be able to get a diagnosis via Dr Seneviratne. One problem I have is that Dr Seneviratne’s secretary has told me he cannot treat anyone who has taken Sodium Cromoglycate, as it will interfere with his testing. Whilst I have not taken the cromoglycate yet, fearing exactly this issue, until recently I had been taking a herbal remedy called Reishi Mushroom. I stumbled across this accidentally as someone told me it reduces flushing – I tried it and lo and behold, it works astonishingly well to reduce flushing and urticaria, and I have had the first relief from those symptoms in ten years due to it. Now that I know about the likelihood of my problems being a mast cell disorder I have done more research and found that there is indeed evidence to show that the mushroom acts as a mast cell stabiliser. I am now very concerned that tests will be invalidated by the fact that I have been taking this, and don’t want to waste a lot of money seeing Dr Seneviratne, if it won’t yield a diagnosis. I was interested to see that you said Dr Clive Grattan diagnoses on history alone, do you think I would be more likely to get a MACD diagnoses from him than Seneviratne?

    Sorry to ask a question that I can’t really expect you to know the answer to, but any advice at all would be very much appreciated as my family and I are really struggling with the effect of this illness and we are desperate to get some kind of diagnosis. There are so few people to ask for advice with MACD being so poorly understood, that it was a real relief to come across your blog.
    Thanks so much,
    Holly.

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    1. Jak Post author

      Hi Holly

      So sorry to hear of your symptoms and your struggle for diagnosis – your story will be familiar to most people with MCAD sadly.

      I know very little about Clive Grattan – a few people have said he’ll diagnose MCAD while others have said he poo poos the whole thing. He’s a dermatologist, so I think if you have obvious skin issues he’d be helpful but if symptoms are more gastro or general maybe not. Sorry, thats not much help!

      I’m very surprised to hear that Dr S won’t test if you’ve taken SC. I haven’t seen him in 3 years, so things may have changed, but he only told me to come off any antihistamines for 2 weeks before my appt and he was happy to do my blood and urine tests after that. So it may be you should stop the mushroom 2 weeks before any appt, though I’m only guessing. He prescribed SC for me then said I should have my histamine levels re-tested in 6 months so obviously taking it isn’t a problem for testing per se.

      Natasha, the girl in the TV programme mentioned in this blog post https://mastcellblog.wordpress.com/2016/11/30/ontv/ saw a haematologist called Bethan Myers in Leicester on the NHS. She doesn’t do the blood tests that Dr S does (he’s unique in that respect) but Natasha got her MCAD diagnosis from her.

      There is a list of some other doctors who don’t test but may diagnose MCAD on this forum page: http://www.ei-resource.org/forum/multiple-chemical-sensitivity-mcs/3382-mcs-as-mast-cell-activation-disorder?start=12

      If you’re on Facebook there’s a closed group for UK MCAD patients here https://www.facebook.com/groups/368740546663534/ Might be worth joining and asking your question re SC and Dr S on there? Also asking who other people have seen for a diagnosis (I think Natasha is on there so would be able to tell you about Bethan Myers).

      Hope that helps and good luck,
      Jak x

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    2. Karen, The Walking Allergy

      A huge challenge, diagnosing this silly condition, isn’t it? I live in Canada, went to see Dr Afrin in the US for a diagnosis. His advice is to not go off any meds for the urine and serum mast cell degranulation metabolites (N-Methylhistamine, Prostoglandin… can’t remember the others off the top). I was taking an H1, an H2, sodium chromoglycate, and ketotifen, didn’t stop any one them. I had several positive results. It’s possible that the tests in the US and the U.K differ, though. What tests does he do?

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      1. Jak Post author

        I’d kill to see Dr Afrin Karen so am well jealous! We don’t have *any* of the tests here in the UK that they have in America. Dr S can send fluids off to America to be tested for leukotrienes but of course that’s really expensive and most of us can’t afford it 😦 He doesn’t even do the 24 hour histamine test anymore. When I was diagnosed he only did one histamine based test and none of the 6 other tests recommended by MCAD physicians – our labs simply aren’t equipped to test for them. Jak x

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  3. Lindsay

    The holidays can be so stressful! And, even though I’m surrounded by people (4 people live in my house), it still feels very lonely sometimes. I have divorced parents, so holidays used to involve spending the day going to numerous houses. But now, my husband and I just stay home and do absolutely nothing. No special meal, no exchanging presents, and it’s absolutely fantastic!

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