Ten Tips to Cope with Chronic Illness at Christmas

Ten Tips to Cope with Chronic Illness at Christmas

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Christmas.  The most wonderful time of the year?

I love it, but not everyone does for lots of different reasons.  When you have a chronic illness or disability there can be some roadblocks to your ability to get through the season, like the cold weather ahead, services shutting down, carers taking time off and so on.

So I thought I’d put together a little survival guide with some of my tips and ideas of how to get through the festive season, and I would love you to share some of yours in the comments below.

1) Christmas Cards

When you have chronic pain, the thought of sitting and writing out a stack of cards can be a daunting prospect.  Some may struggle to see what they’re writing, others may suffer from hand tremors that send their writing all over the place.  If you’re anxious about cards, why not look at other options?

A traditional Christmas Card

A traditional Christmas Card

E-cards can be a lot easier to create, and are sent by email.  If you’d rather give someone a physical card, you could type out an insert to pop in with each card.  (I find typing a lot easier than writing for a short period of time, and when I can’t I use Dragon Naturally Speaking to control the computer with my voice.)

Also have a look into the full range of pens out there.  Some may find a thicker pen easier to hold, or an ergonomic design that slides onto your fingers to stop it shaking and give a better grip may help others.  Then write a couple of cards a day, rather than sitting and doing them all at once which will help pace the activity out.

2) Gift Wrap

If you’re an online shopper, there is often a gift wrap option to save you doing it.  Otherwise, it’s time to get creative.  I sometimes buy a range of pretty gift bags and shredded tissue paper.  I pop the gift in the bag, cover it with tissue paper and tape the top.  It’s much quicker, and you don’t have to worry about neat corners and ribbons.  There is also such a large range of gift bags and boxes now – including specific ones like for wine, DVDs, etc that make life a bit easier.

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3) Christmas Parties

When you have limited energy, these can be a bit of a nightmare.  It doesn’t mean you should miss out entirely, but perhaps just limit yourself to an hour or so, or make sure you’ve build resting time in before and after to give yourself as much energy as possible.

You could also host an alternative party by getting a selection of Christmas films in, some festive snacks and keep it low-key.

4) Watch out for the Winter Blues

Even those who aren’t formally diagnosed with depression can find the winter months difficult to get through.  Many feel trapped in their houses, avoiding cold weather and icy pavements.  Days go by quickly when there isn’t much light, and it can be quite isolating.

Try to make sure you continue doing things you enjoy.  While the outdoors might be shut off to you, perhaps join a local crafting group, or take it in turns to have a small gathering with friends so you don’t go for long-stretches without seeing anyone.  The charity Mind are suggesting you hold a Christmas Crafternoon.  Find out more by following this link. 

If you do find yourself struggling with the blues, remember the Samaritans are always available, and you can even email them if you find phones awkward.  Sometimes just a friendly voice or email can help break up your feelings of isolation.

A different type of winter blue

A different type of winter blue

5) Weather

Last year we were lucky enough in the south east to avoid the snow.  This won’t always be the case though, so try and plan ahead.

I bought some thermal gloves earlier this year – as my hands tend to feel the worst of the cold, as well as some thermal socks.  I checked my boots are okay, and don’t have holes in them in October, so I had time to replace them if needed. I’ve bought a blanket and a wheelchair bag so I can carry it around with me if needed, and keep one in the car.

Those with joint problems/mobility issues tend to feel the cold much quicker, and those in wheelchairs usually suffer badly – as when you’re sitting still you’re not generating natural body heat.

Look into heat packs – wheat packs are good for around the house, or Cura-Heat pain packs or similar places on the worst areas.  There are also hand warmers or foot warmers to put in your shoe/gloves. There are also the clickable versions that tend to give pretty good warmth, but do need boiling before you can use them again.

pain relief

Generally however, I plan not to go out as much as possible in the cold.  Many pharmacies offer a repeat prescription and home delivery service, so I get my medications bought to me monthly.  This saves one worry, and one trip out.

I also make use of online delivery for food shopping.  Tesco were offering a Delivery Saver where you pay £30 a year and don’t pay for any mid-week delivery slots, and you also get priority over the Christmas period.  Other supermarkets will probably offer similar money-saving options. Iceland now offer online delivery, whereas you used to have to go to the store and carry out the shop for them to take your shopping for you.  This is a great way to get in festive food without having to face the crowds.

If you’re a fan of online shopping, always make sure to have a look for any money-saving codes, and sign-up to cashback sites such as Quidco.  If you’re prefer a non-virtual experience in real shops, try and go mid-week when it’s not as busy.  Try to start picking up bits throughout the year rather than panic in the last couple of weeks.  This year I’ve failed however, and will be joining those panicking!

 6) Ask for Help

Sometimes you really need to be honest with your loved ones about what you’ll need to get through the day.  I normally go to family member’s for Christmas Day, so for me it’s more about trying to pace and saying no if needed.  Usually after lunch my family goes to the crematory to pay their respects.  However, I spend that time sleeping in order to get through the evening.  I found it quite hard to ask for this, particularly to sleep at a family member’s house – but I had to suck it up and say that’s what I needed.

If I get invited to a party or gathering, I always try to tell them I’ll need a chair, and most will put one aside especially for me.  Also try to tell people in advance what you’ll need – a quiet place to rest, or that you might need to leave early.  When responding perhaps say you’ll only be able to come for an hour or so, so you don’t feel bad if you do have to leave, and if you’re able to stay longer it’s a bonus.

A friend of mine who is the host for her family at Christmas saves up to get in a cleaning company, so that’s one task off her shoulders. I also recently hosted a small gathering at my house.  I knew I wouldn’t be able to be up-and-down all night offering drinks, so instead I made a Festive Punch, put out some other soft drinks, and put up a sign asking people to help themselves.  They did, and it really saved me some energy and pain!

I of course know it’s not always easy, that families aren’t always supportive of your needs, and can be dismissive.  There are no easy answers.  Just try to be firm, and perhaps find someone to be an ally and help to advocate for you.  But some people will always be that way unfortunately!

7) Stock up on pain relief

Extra activity often leads to extra pain.  So make sure you have enough painkillers to last the season, if needed.  Take a higher dose on Christmas Day, which may be the worst day.

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Biofreeze and a wheat bag

Also have a box ready with anything else you use.  A microwavable heat bag, Tigerbalm, a Pain Gone Pen, Biofreeze Spray, etc.  Perhaps also book in a massage/physiotherapy appointment/chiropractic adjustment in advance for the week after Christmas if that’s what helps you, and saves having to phone around once the pain has hit, and companies are closed for the season.

8) Cooking Made Easy

If you’re the one that has to provide the Christmas meal – there are lots of short-cuts that make it easier on you.

Frozen and already prepared food is much better quality than it used to be.  You can get almost everything already chopped and peeled, which will save time, as well as energy.  It’s not ‘cheating’ to make use of these, and while it may work it more expensive – to me it’s definitely worth it if you can budget for it.

Make a list of times to put each item in the oven a few days before Christmas, before everything gets busy.  Tape a list near the oven, and direct anyone in the kitchen at the time to make themselves useful. Set alarms on your phone so it all runs smoothly and stress doesn’t take over.

On Christmas Eve prepare everything you can – put vegetables in pans, cover in water and put the lids on.

If it’s easier on you, have a light lunch and move the main meal later on to give yourself more time.

9) Think Ahead

Bugs and colds are plentiful at this time of year, so take a trip to the pharmacy and grab a basket of essentials.  Paracetamol, cough syrup/throat pastels, Lemsip,  Beechams, Immodium, Milk of Magnesia, etc.  The last thing you want to do if you’re stuck down is have to drag yourself out.  Also have a bottle of hand santisier available to try and prevent some common bugs beforehand.

Have a list of numbers ready in case of an emergency.  The local police station, the out of hours GP, emergency vet, who you’d call if your boiler breaks down, etc.

Don’t forget to pick up some batteries and light bulbs, and make sure you have a working torch to hand.

Okay, so Christmas isn’t a national emergency, but it’s always easier to be prepared.  You never know when a flare up might hit, and you’ll be grateful you grabbed that extra light bulb before it happened.

A selection of medications for common winter bugs

A selection of medications for common winter bugs

10) Remember Others

Families that have at least one member with a disability are 30 times more likely to be living in poverty than a family without a disabled member.  In the past year the number of people having to use Food Banks has trebled.

60,000 people relied on their local Food Bank to provide their Christmas meal last year, and this will have significantly increased this year.

If you can afford it, please pick up a few bits for the Food Bank – and think outside the box.  The most common donations are baked beans and soup, and while they’re gratefully received – there are many more products vitally needed.

A lot of the people going to the food banks don’t have the facilities to cook from scratch, so rather than a tin of tomatoes – a complete sauce is often much easier. Anything that can be a complete meal in a can – like a stew is also helpful. Treats are very welcome – if you’re living on beans, a small packet of sweets, or some biscuits can be very welcomed and bring some normality back.

A list of needed products from my local food bank are as follows: Tinned Meat, Tinned Vegetables, Rice Pudding, Squash, Tinned Potatoes, Long Life Fruit Juice, Long Life Milk, Nappies, Baby Food, Toiletries including sanitary protection, Shaving Foam, Toothbrushes/Toothpaste, Shampoo/Condition, Christmas Treats, Instant Mash, Pasta Sauce, bags of Sugar, Instant Coffee and small bags of tea bags (for single people).

Also – many people have pets before they fall on hard times, so donations of cat/dog food are most gratefully received.

 

 

Everyone has their own coping methods, so I’d love it if you shared them in the comments as they may just give someone else an idea.  Finally, my wish to you is that you have a happy and pain-free Christmas, and a better 2015 than you had this year.

 

Happy New Year?

Happy New Year?

A New Year generally brings about mixed feelings.  Traditionally it’s a time to reflect over the year that’s passed, the good and the bad – and also to think about your aspirations for the year ahead.  It’s also a chance to draw a line under the negative, and to have a fresh start.

Over the last few years those goals for the year ahead have shifted quite dramatically for me.  They used to be around completing my studies, and then became quite work focused – whether it was finding a job I loved, or making progress within my work.  Taking the project I was working on forward, or becoming a manager.  They may have also been more fun – like sharing memories with friends, going on holiday with family, or visiting new places.

Over the Christmas period I managed to meet up with friends I hadn’t seen in awhile, and family members who told me their news, and it’s been playing on my mind ever since.  They’re just getting on with their lives – getting engaged, celebrating promotions at work, looking forward to their holidays abroad, planning on meeting up for weekly squash.  The kind of normality that’s just faded away for me. Thinking about the things that stick out for me from 2013 – they’re sadly mostly health focused, like being given the go-ahead for some new treatments, the nice consultants I saw, and the nasty ones.  And then the biggest – having to stop working.

When I look forward into 2014 I see a couple of dates – the lumbar injections in January, the infusions in March.  Then a whole lot of nothingness.  I don’t know what will happen in 2014.  Obviously no one does, unless they have a handy crystal ball – but every year since I was 15, my physical health has been quite rapidly declining.  Each year I can cross a few more things off the list I can no longer do.  This time last year I was just about holding a job down, this year I’ve spent more of my week in bed, than functioning.

Even New Year’s Eve itself was quite different this year.  Having had a bad night previously, I spent most of the day asleep.  I woke at 6pm, and it took awhile for me to even realise it was New Year’s Eve!

That said – if I continued to dwell on what’s changed or will continue to, or if I thought “well there isn’t any point anymore!” then nothing will improve.  Instead it’s about shifting priorities – finding interests and hobbies that are manageable, and allow me to have things to look forward to without feeling like life has hit stalemate.  Or even better, saying to myself, “I’ve survived another year.  It wasn’t easy, it was painful – but I’ve done it, and can continue to do it.”

But if you are someone who is able to go to weekly ‘insert activity of choice’, head out for a drink with friends at the last minute, or can go on holiday and spend all your time planning what you’ll do when you get there – then treasure it.  Please.  Health is precious – and can vanish in an instant.

Fireworks

Disability and Crafting

Disability and Crafting

Please note this post was originally published in the December issue of ‘Living Well with Fibromyalgia.’

When you’re in constant pain, it’s very easy to focus on it.  It can become all-consuming, and the more you think about it – the worse it feels.  Someone once suggested to me that I try crafting as a means of distraction.  I have to be honest, I was a little annoyed – how would painting a pretty picture take my crippling pain away?  It seemed a little dismissive.  Plus there was also the fact I’d never thought of myself as a particularly creative or artistic person.  At school even my doodled stick figures ran screaming in terror, and my art teacher made it clear it wasn’t my forte, but I thought I’d give card-making a try.

I enjoyed making them, but they weren’t that great.  I’d look online at all the beautiful designs people were creating, and it just didn’t feel quite like me.  After I’d spent a fortune on card-making supplies, I decided to try my hand at jewellery instead, and in doing so found a new passion.

Stargazer Watch

Stargazer Watch

The early days of making jewellery weren’t easy – my hands cramped up terribly, and I was left with blisters all over my skin.  In time my dexterity improved and it helped strengthen some of my muscles in my hands.  And it was true – when I’m busy concentrating on making a new item, my brain is focused elsewhere.  It doesn’t make the pain go away, it just redirects my attention so I’m not thinking about it, which is really helpful.

Once I joined the world of crafting – I found more and more other people with disabilities were also there, and finding an outlet in art – by painting, woodwork, ceramics, photography or anything in-between.   For example a friend of mine makes ‘pain monsters’ from felt when she’s having a bad day, which helps her create a visual representation of what she’s feeling.

It took me quite a long time to find out what was wrong with me.  Many years of fighting and pleading with the medical community to stop shrugging their shoulders, and to do something.  When I was told I had Fibromyalgia, it came as something of a relief.  I felt like I wasn’t alone – there were other people with this stupidly long list of symptoms out there.  I wanted to commemorate the end of that fight, that also informed people about the condition.  I made my first Fibromyalgia awareness bracelet not long after, and then began to receive requests to create ones for other conditions – including some I’d never heard of before.  People liked the more personalised feel to the more generic rubber bands that are usually sold.   My biggest seller was for Marie Charcot Tooth Disease, and eventually the national charity began to order from me so they could sell them on their website.

I also auctioned lots of my bracelets off for the Fibromyalgia Association UK, and also for Ehlers-Danlos Syndrome related charities when I was diagnosed, a genetic multi-systemic connective tissue disorder.  It made me feel like I was helping, even in one tiny way.

An Ehlers-Danlos Syndrome bracelet featuring zebra stripe beads - the symbol of the condition

An Ehlers-Danlos Syndrome bracelet featuring zebra stripe beads – the symbol of the condition

It’s very common to walk into a shop and see a row of pink coloured items for Breast Cancer awareness.  Yet there are so many other conditions that people often haven’t even heard of before, let alone understand what they entail and what it’s like to live with them.  People have often told me when wearing one of my awareness bracelets it has sparked conversations with friends and family who had never asked about their health before.

Fibromyalgia Awareness Bracelet

Fibromyalgia Awareness Bracelet

Fibromyalgia Awareness Bracelet 2

Fibromyalgia Awareness Bracelet 2

The colours of the bracelets are usually picked by the existing awareness ribbon colour, and if there isn’t one, then by the colours of the national organisation/charity for the condition.  Sometimes there are obvious symbols that can be included as charms.  Fibromyalgia often has an association with butterflies, Autism with jigsaw pieces, Charcot Marie Tooth Disease with hands and feet.  Sometimes a spoon charm is added from the fantastic analogy “The Spoon Theory” by Christine Miserandino, to which many people with chronic illness resonated with.  My most commonly used charm is simply a silver ribbon with the word hope written on it – as I believe that’s something we all need in some form or another.

Arthritis Awareness Bracelet

Arthritis Awareness Bracelet

In April this year I had to stop working due to my health continuing to get worse.  Being able to make jewellery – even if it’s for twenty minutes in the middle of the night when I’m struggling to sleep, has helped keep my spirits up and creativity flowing.

If you’re interested in seeing more of my jewellery and awareness items you can find me under Sparkly Place Jewellery on Facebook.