Tag Archives: coping strategies

The Need To Create

When I was seeing the Counsellor last Christmas about the situation with my Mum, she said to me “OK, so what creative pursuit do you follow?  I know you do something because you couldn’t have survived your life otherwise and stayed sane.”  Her insight took me aback.  I hadn’t realized how much I rely on my creativity.  It’s a huge distraction, gives me a goal, purpose, challenges and connects me to the world from my bed.

As a child, reading books literally saved my life.  I could lose myself in a story, taking a break from the chaos of my life.  But I’ve also always been artistic, spending hours as a young child drawing and colouring.  My Mum taught me both to knit and crochet when I was really little and I knitted all my doll’s clothes as a kid.  When I went to primary school we had compulsive home economic lessons (while the boy’s did woodwork!) and it was there I was taught to sew, tiny delicate embroidery stitches which took hours to perfect.  I love having the ability to create something out of nothing.

After I left school I was way too busy for hobbies and, reading aside, my creative pursuits were put on the back burner though I used my creativity in other ways, renovating my Victorian house and tarting up old furniture as I couldn’t afford to buy new.  When I became ill, however, all that changed.  I had to find a way of passing the endless tortured hours, so went back to embroidery this time buying kits and making tapestry cushions which took months (sometimes years) to finish as I could only do little bits at a time, and which I gave as gifts for Christmas and birthdays.

A decade on and my joints were becoming ever more painful, so I gave up the embroidery and took up crocheting which I find easier.  I discovered the charity knit-a-square and now regularly make beanie hats and fingerless gloves to help AIDS orphans in Africa.  They also take simple knitted or crocheted squares which they make into blankets – there are a few patterns on their website but if you’re going to send something please only make items they need.  That I can still be useful, help others less fortunate than myself and contribute to the world is incredibly important to me.

Before my MCAS & HIT diagnoses when I was having anaphylactic symptoms every time I ate and living life in a permanent state of palpitations, muscle spasms, nausea and anxiety, I crocheted for hours on end.  I find it very soothing, even if the repetitiveness killed my hands and wrists!  It’s really easy to learn too, with only 1 basic stitch which is modified, so if you fancy giving it a go I’m sure there’s a YouTube video somewhere which would teach you.

Of course, I then discovered photography which I simply love although it is something I can only do on the days I feel well enough to be up and about.  I admit to feeling a bit guilty about my photography, though, because it benefits no-one but me unlike my sewing and crocheting which are given to other people, but we all need something which is just ours and photography has taken the place books used to fill (my brain has been too poorly to read for over twenty years now).  And having taken the photographs I can edit them in bed using Photoshop, brain fog permitting.

When we’re chronically ill we all find individual ways of coping and remaining creative has been a big part of that for me.  It’s also a great distraction and if I make something usable at the end of it then so much the better.  I’ve found that many of my ill friends are creative in some way or another: they make beautiful jewellery, cards which are sold for charity, are crafters or fellow photographers.  That we can make art despite the most dire of circumstances is a testament to our spirits and our innate need to connect with the world, and each other.


Avoiding The Pit

I am prone to clinical depression.  I had a chaotic childhood which predisposed me to mental health problems.  I have mast cell disease which definitely affects my moods and depression runs in my maternal family, in my Aunt’s case so severely she had electric shock therapy (which BTW doesn’t work).  My Mum has suffered from depression my whole life and I have three female cousins who turned 50 this year and all have suffered from depression for as long as I can remember, albeit at various levels.

I was clinically depressed during my teenage years and half-heartedly attempted to take an overdose.  I was definitely depressed when I got divorced, though it wasn’t clinical depression.  And I have had one serious depressive (actually more bipolar) episode since I became ill, though I think that was mast cell related because it was totally out of my control and felt more biochemical than emotional.  So when I talk about depression I do have some experience of the condition.

But I am not a victim of depression.  I bloody well refuse to be.  I have watched my Mum suffer from the disease my whole life and do absolutely nothing about it.  Being miserable seems to be a familiar comfort blanket and certainly not something she seems to want to change.  I simply don’t get that.  I only have one life and I’m damned if I’m spending it moping around and bringing everyone around me down.  I’m acutely aware I have a tendency towards depression and am as proactive about that as I am about my physical health.

So how do I go about avoiding the pit of depression?

  • Acceptance.  We can’t change the past and, in my case, I can’t change the present either – I’m never going to be healthy again a day in my life and there is nothing I can do about that.  So I accept it just like I accept the weather outside my window and I live as full a life as I can despite it.  When I was bedridden and suffering the tortures of hell it was impossible to be “happy” but I learned to be accepting, which gave me peace.
  • Purpose.  We all need a purpose in life or there’s no reason to get out of bed in the morning, especially when that involves pain and illness.  My little rescue dog gives me that purpose.  Regardless how I’m feeling he’s awake at 6am and demanding to be fed.  He then wants a tummy rub, his morning walk (paid for by me), his feet wiped, his Dentastix for lunch, another walk, more feet wiping, his tea and a bedtime cuddle.  My reward for all that hard work (and, oh boy, is it hard work) is completely unconditional love and a furry bundle that makes me smile every day of my life.
  • Passion.  I honestly don’t know how I’d get through without my photography.  It gives me a goal, pleasure, forces me to get out in the world, mingle with other people and forget about my health for an hour or two.  The editing side of photography is something I can do in bed, picking it up and putting it down again when my health and energy wax and wane.  I simply love it.
  • Distraction.  Due to all the resting I have to do my mind has a lot of time to think and not all my thoughts are helpful, so I have to find ways of switching them off.  I watch far too much TV, even having it on in the background when I’m cooking or doing chores, so that my brain is distracted from dwelling on the negative.  I listen to loads of talking books which I download free from the Library.  I have them on when I’m out with Bertie, driving the car or lying in the bath – in fact any time I am relaxed, because I don’t want to give my mind too much space to think about stuff which only makes me sad, angry or frustrated.  I even listen to a talking book as I drop off to sleep or wake in the night, so that my brain has something to focus on other than how crap I feel.
  • Gratitude.  I know this is an Oprah cliché but for me if I start focusing on all the things I don’t have or can’t do my mood nosedives, so when I find that happening I make a conscious choice to be grateful instead.  I had my Christmas groceries delivered yesterday and as I was huffing and puffing and moaning to myself about having to put it all away (my back, neck and arm are still really painful) I stopped in my tracks, called myself an ungrateful cow and started thinking instead about how lucky I was to have all this beautiful food and a clean, safe home in which to eat it.  And then I spent a cosy hour on the couch stuffing my face with Pringles and watching Eastenders.  Bliss, although my waistline will never forgive me 😉
  • Setting myself up for success.  My whole life I’ve attracted people with issues who want to offload their crap on to me.  Which is fine – we all have problems now and again and need someone who can empathise, but I began to realize that these people’s problems were never resolved. They were emotional vampires, sucking the very life out of me in order to raise themselves up and they had to go.  Which is why I feel so trapped in the situation with my Mum because if she were anyone else in the world I would have dumped her ages ago.  I only want to be around people who make me feel joyful, happy, supported, encouraged and understood and the relationship has to be a two way street – gone are the days where my friends and  family do all the taking and none of the giving.

I also avoid negative information.  I catch the news headlines so that I know basically what’s happening in the world and then I switch channels.  There is nothing whatsoever that I can do about the situation in Syria, Brexit or the fact that 6 people were killed on the motorway this morning and hearing about it can make me feel emotional, so I don’t listen.  I don’t embark in heated discussions online because I find it stressful and you can guarantee someone will lose their cool and start being nasty which I don’t need.  I try my level best not to take on the weight of the world because my shoulders simply aren’t wide enough.

  • I put in the work.  I’m sure some people are born with a sunny disposition and nothing gets them down but I sure as hell wasn’t.  For me, happiness takes work and it’s something I aim for each and every day.  If you’re predisposed towards depression you have to make an effort to not be depressed.  And it is an effort, especially when you’re already feeling ill and exhausted.  But the good news is the more you practice happiness the easier it becomes, whatever life chucks your way.

Odds n Sods

There was no weekly roundup on Sunday because I had a 2 day ovulation-induced migraine. The kind where my entire head felt like it was being excavated from the inside and I didn’t dare move in case I passed out with the pain. I am soooo thankful I only really get them twice a month now (ovulation and menstruation), rather than the twice a week of old, but would be even happier if they’d bugger off altogether.

My mast cells are absolutely bonkers at the mo and I have no idea why.  I was (just about) coping with my reflux by swigging Gaviscon every 2 hours, then my body decided it would ratch up my misery a notch or two and started reacting to that as well.  I am now totally med free and it’s not fun.  I don’t know what’s worse – the pain and inevitable cough, or taking drugs and being anxious every day of my life that today will be the day all hell breaks loose and I’ll have anaphylaxis to them.  At the moment I’m living with the pain and enjoying the mental peace.

Not only are my mast cells very drug twitchy, they are also very digestion twitchy and I’m having some small reactions after I eat.  It’s nothing to do with what I’m eating, as I had freshly cooked Shepherd’s Pie on Monday night and reacted, and had leftover Shepherd’s Pie (technically more histamine loaded than the fresh dish) last night and didn’t react, I think it’s just the mere act of eating and the histamine produced during the digestive process.  It’s been a very long time since I’ve had to put up with reactions after food and I’m unimpressed.com.  I also still have rampant butt hives.

I apologise it’s been so long since I added any new recipes to my blog – I’ve just not been well enough this year to faff on for hours in the kitchen.  But I am hoping to add a couple of quick dishes in the next week or so.

We all cope differently with our really bad patches and I thought I’d list the few things which have always helped me cope with mine:

  • Hot water bottle
  • Warm baths
  • My electric blanket
  • Ice packs
  • TENS machine
  • My pets
  • My parents, my Mum in particular
  • Tea (which I technically shouldn’t be drinking but couldn’t get through the days without – I am British after all 😉 ).
  • Warm milk.  I’m often unable to eat during bad patches, but often find I can keep down a mug of warm milk and the odd Rich Tea biscuit, both of which have saved me from starvation on a number of occasions!

Mind set is also important, and while I can’t say I don’t have times where I fall apart (like, last week!) I do try not to linger there for fear I’ll become clinically depressed.  For the most part I have mantras and thought processes which I return to in times of crisis, including:

  • Acceptance.
    “Jak, you can’t change the situation, so accept it.  The worst that can happen is that you die and the way you feel at the moment that would be OK.”
  • Relax into the symptoms.
    The more I fight the pain, or the spasms, the nausea, or the restlessness the worse they get.  I repeat the mantra above and try to just relax and let the sensations wash over me.
  • Remind yourself how strong you are.
    “Jak, you have lived through this before, many times, and you have survived.”
  • Remind yourself you only have to get through today.
    Don’t worry about how you’ll cope with tomorrow, or next week, or next month.  Today is all that matters – get through minute by minute if that’s what it takes.
  • Distraction.
    I do anything and everything I can to take my mind off my situation.  I watch TV if I’m well enough, I go online if I’m well enough, I crochet if I’m well enough, and if I’m not well enough I listen to a talking book or just lie and focus on the birds singing outside my window and try to identify their different calls.
  • Hope.
    None of us would get through life without hope.  Hope that tomorrow, or next week, or next month, or next year, will be better and it often is.

While I’m wittering on about nothing much in particular, I thought I’d share this recent research on the benefits of milk with you.  As you know, I don’t adhere to the current trend that gluten, grains and dairy are inflammatory and bad for us – just the opposite.  This research paper has demonstrated that people who regularly consume milk have high levels of glutathione in their brains.  Glutathione is often called the “mother of all antioxidants” and is found in every cell in the body.  It protects mitochondria (our energy producing cells) from bacteria and viruses as well as toxins, and being as though our mitochondria are affected in mast cell disease (and possibly M.E.) this can only be a good thing.  I know, however, many of you react to dairy – I’m just lucky that it’s one of my ‘safest’ foods.  In saying all that, the milk I drink is always organic from grass fed cows and this is very important.  As with all research this needs to be replicated and further studies need to be carried out.