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.

 

Applying for Disability Living Allowance – part 2

Applying for Disability Living Allowance – part 2

I detailed my first experience claiming Disability Allowance in a previous post.  The second occasion was a year or so later, now with higher care needs, and needing to use a wheelchair and walking stick.  This time I received a response saying I needed a medical within a couple of days of sending off the forms – before they could have even read them.  I was told a doctor would come to my house.

The doctor seemed fine at first.  He asked about my daily life, and what was wrong with me.  I had made notes beforehand so I remembered to cover as much as possible.  However, he made it pretty obvious he didn’t believe in my condition without actually saying so directly, and snapped at me numerous times when I forgot what I was saying (part of my condition.)  His ‘examination’ was dubious.   It was literally the following: listening to my chest, poking me twice in the spine, and asking me to walk two steps with my walking stick.

I received a letter saying I’d been turned down not long after.  I appealed and the process meant they first reconsidered it automatically.  I immediately requested the doctor’s report before they reconsidered so I could see what evidence they were basing their decision on, which I felt was fair enough.   I was told this process usually took some time, and I’d have enough time to respond to the report and submit new evidence in addition.  Instead I was shocked to get a letter shortly afterwards saying they’d turned me down at the reconsideration stage without me seeing the evidence or having a chance to respond.

It wasn’t until shortly before the tribunal I received a copy of his report, and was horrified.  He’d watched every little thing, and instead of asking why I did something, he put it in the report and twisted it.  For example I at one point for a minute or so I sat cross-legged because I’m hypermobile, and sitting straight on hurts my legs.  I regularly change position to stretch out my back, and legs.  He instead wrote that I sat in the ‘lotus position’ throughout with no problems.

One symptom of my condition causes extreme sensitivity, sometimes to sensations that shouldn’t be painful.  This is called Allodynia when a normally innocuous stimulation causes pain.  I particularly struggle with clothing, and so most of the time I wear loose fitting clothing.  On the day on the medical I was wearing a baggy top, and loose pyjama bottoms.  They were coloured, as PJs often are.  I wasn’t making a fashion statement, but everything else was too painful.  I had detailed the struggles I have had in relation to mental health and living in pain to him.   However on the page he should have detailed all this on, he instead simply wrote that I wore ‘bright coloured clothes’ so couldn’t be depressed.

He also wrote that I had nothing wrong with me.  I could walk fine with no problem and could walk 600 metres.  I had no joint problems and no care needs.  He wrote my memory was fine, and failed to mention the notes in front of me I was using to jog my memory.  I couldn’t believe it.

Again, it went to tribunal and a lady from Welfare Rights at the Council said she would represent me which was a great relief as I’d found the previous tribunal awful and very stressful, which made my condition worse alone.  But she informed me she was going into hospital and wouldn’t be able to attend with me during July.  I phoned them up straight away and informed them of this.  I was told it was fine, they’d made a note on the system  and I wouldn’t be given a date during that month.

Surprise, surprise I then got a letter with my tribunal date set for July!  I phoned them up again thinking they’d say no problem, and send me another date but instead I was told I didn’t follow the correct procedure.  My representative should have written to them to introduce herself, and inform them of these dates.   I protested that I’d spoken to the tribunal service and not been told any of this, but that it had been noted.  I was told that person had been wrong.

My only chance now was to appeal against the date in writing to the judge.  When I informed the representative of the outcome she was very suprised, despite having been in her job for years.  So I wrote my letter to the judge, explaining what had happened, and that due to my condition I’d find it tiring, painful and stressful to represent myself, and there was no one else.  I heard nothing, so I phoned them up a couple of days before the date and was told my appeal had been refused, but no reason had been given and I had no choice but to struggle on alone.

Once again it was a panel of three, but this time a representative from the Department of Work and Pensions was there in addition.  I was pretty worried – thinking he was going question me too, but he was fine.  He asked one question about how far I could walk, and otherwise remained silent.

The judge this time seemed motherly and nice.  She said my mum could talk freely and not to worry.   She asked if I had any comments about the GPs report.  I had put together a massive submission arguing with every point the decision maker had made, and then every point the GP had made.  I went through it and pointed out every single error.  At one point the Disability Specialist rolled her eyes and laughed openly at me as I spoke in a derisive.  They didn’t seem to be listening.

Next the GP then started his questions and went over my conditions, asking how things affected me.  At one point he asked how my memory affects me, which is a bit of a sore point with me.  I burst into tears.  He asked if I needed a break, but I was a total wreck.  I hadn’t slept, I’d been throwing up and shaking like a leaf.   I was wound up tight, ready to snap.  I just wanted to get it over and done with and so I pressed on.  He asked how I worked.  I explained I was doing seven hours a week, I could work from home if I needed to, and I had equipment in the office to assist.

The Disability Specialist came in, going over every detail of my day.  Again, I found pure ignorance.  Why don’t you get a commode to save struggling downstairs at night, she said?  I tried to explain there was no space upstairs for one.  I live in a tiny Victorian terrace.  There isn’t even a landing, and the room fits a bed, and not much else.   But even if I did have one, I would need help to get out of bed, and to empty it – which is still a care need, but she wouldn’t listen.  She kept suggesting things, without giving me time to explain why it wouldn’t work for me.   She obviously found ‘easy’ solutions to my troubles, and didn’t give a crap they were unworkable.

How can you drive if you have bad wrists?   I found resting my arms on my legs, and gripping the wheel at the bottom more comfortable, and I only ever drive very short distances and stop often.  How can you work?  With a lot of help, adjustments and patience.  They fired questions at me, then asked them again slightly differently, as if they were trying to catch me out.

What do you do in your spare time?  I paused here.  I had been warned about this question.  Say you watch TV and they will say your memory and concentration in fine, and that you can sit without moving for hours, even if it’s not true.  Say you do anything that requires moving, and you’re doomed.  I felt each question was a trap, as they weren’t going to take into account the reality of the situation.

So I said I didn’t do much at all, but I read sometimes.  She asked what was the last book you read?  I couldn’t remember, but then I said I thought it was a crime novel.   And then added a truthful statement – “actually, it was kind of funny – I got to the end when they revealed the killer, and I couldn’t remember who it was, so I had to go back to the beginning and find out.”  They all laughed, oh dear, she said.

The judge started asking about my mobility.  Can you walk over there?  She pointed to the other end of the car park.  I’d already stated at this point I could walk about two minutes with difficulty, so I said if I can do it in two minutes and it’s all flat, otherwise no.

The GP: How did you get in the building?  I parked and came in. His eyes lit up – so you walked up the flight of stairs?  Nope, I parked round the park in the disabled parking, and used the lift.

I don’t remember much more, but I came out feeling like I’d been through the wars, but that I’d put my case forward.  Yes I had care needs, and no I couldn’t walk without severe discomfort.

Instead of allowing me to wait for the decision, they said they’d put in the post and it would be with me on the Tuesday morning.   The Tribunal was on the Monday.  I pretty much collapsed and spent the rest of the day in bed in agony, and the Tuesday as well.   I hoped it would arrive on the Tuesday.

It didn’t.

The Wednesday was an agonising day from hell.  I was at work so had no way of getting to the post until evening.  I prayed it had arrived.  I was hopeful though – I’d been truthful, and answered every question explaining the difficulties I have.

I remember walking in after rushing home from work, to find mum had got home before me and opened it.  She stood with tears in her eyes and her face the only answer I needed.  They’d turned me down.

Credit to: Michel Meynsbrughen www.prestonotes.c.la

Credit to: Michel Meynsbrughen
www.prestonotes.c.la

This time I wrote to the judge to ask her reasons.  It’s the worst thing, the tribunal just say no –  but they don’t actually tell you why.  There is no set time the judge has to respond to requests, so it took about four months for it to arrive.

It began by laying out everything I said – she needs this, this and this help.  She has this condition.  Then it got to the reasons – she seemed to exaggerate everything she said, and we believe her mobility is fine; her mum only cares for her out of love, not need; she said she could read a crime novel, so her memory is fine; she got through the tribunal questions without a break, so her concentration/stamina is fine.

It pretty much led to a mini-break down.  I couldn’t face a system that called you a liar, and didn’t offer any reasons why and twisted the truth.   I was exhausted.  Mentally and physically.

I was turned down about a year ago now, and I am only just making my third claim.  I now have numerous consultants letters – fantastic ones that detail my condition, how it affects me, the fact I can’t cook a meal and why, that I’m in a wheelchair.

I had help someone who has Fibromyalgia, and spends a lot of time helping people with claim forms.  She put my needs into the ‘right’ words.  She has the knack of covering a variety of topics succinctly, without going on like I do.  I sent the form in, and two days later I had a phone call to say I needed a medical.

I phoned the Department of Work and Pensions up and asked why, with my seven letters, all from top London professors, did they need more information? Oh,  I don’t know, she said, it’s up to the decision maker.  Can I speak to the decision maker?  No.  I then asked her a trick question:  Will they be looking at my previous claims?  Yes, they’ll do that, she said.

BUT THEY ARE NOT SUPPOSED TO!!!!!!!!!!  Each claim is supposed to be a fresh one.  I have more than one new diagnosis, new medical evidence.  They have no reason what-so-ever for opening up the old claim forms, but there is no way in hell they have even opened my new claim form, the phone call came so quickly.   So clearly I was flagged up straight away, and I’m being shipped to a GP with no specialism in what’s a complicated set of conditions.

Anyway, the company behind the medical is called Atos, who have a terrible reputation.  I phoned them up to make the appointment, and they asked if I could go to the medical centre in town.  I said as long as it’s got parking outside, it’s no problem.

She then asked if I was in a wheelchair, and I said yes.  She then said oh well you can’t go to the centre, if you’re in a wheelchair or can’t walk unaided, we don’t allow people there for health and safety reasons.

So to make this clear – the building they use in Colchester to assess disabled people, either for Employment and Support Allowance (for those that can’t work) or Disability Living Allowance – is inaccessible for disabled people.  It’s like banging your head against a brick wall.

I will keep you updated to how my claim goes.  I’m trying to be positive, but drove past the tribunal building today, and I have this horrible feeling I’ll be seeing it soon.