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.

 

Finding Support with Fellow Sufferers

Finding Support with Fellow Sufferers

Credit to Puiu Adriana Mirabela

Credit to Puiu Adriana Mirabela

Today I went to a Chronic Pain support group.  I love going, it’s quite a great feeling being in a room full of people who know exactly what you’re going through.  Sadly it usually clashes with a work day, so I’m not able to go.  We spend the time just talking about our current issues – sharing things that have worked for us, having a bit of a vent and quite often having a laugh at ourselves.

Speaking of work, things came to a head when I went to see my GP recently and explained how low and stressed I was feeling.  She then said she wanted me to have a break from work, and signed me off for a month.  She also referred me back to the chronic pain clinic at the local hospital to see if they can try something new, and decided to put me on Prozac, to see if I can kick this depression.

Work took it in their usual way.  I have an occupational health assessment tomorrow, which they asked me to have when I joined the company.  I’m quite nervous about it, but will see how it goes.

I’ve been trying to think of something new to do a fundraising event for Fair Access to Colchester.  The group has no money, and I desperately want to advertise and do lots of other things that cost money.  I’ve run some pamper days for a village hall charity before, and I wanted to do something different.

At the same time, I was trying to arrange a craft themed meeting for Fair Access.  I have found lots of disabled people are into crafts, and that’s how I got into them myself really – by looking for a hobby that could distract me from the pain.   I suddenly realised the craft theme could work on a larger scale – by getting a large hall, and having lots of different crafters in giving small lessons.  For example someone would come in a pay a small fee to make a bracelet, or a card, or paint something.  That way people get to do something fun and try out something they may not have done before.  It’s expensive starting a new hobby, and you want to make sure you’ll like it before you spend money.

I thought I could have some tables selling crafts, some children’s stuff and maybe a raffle or something.