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Pacing yourself at Christmas time

htlcyhtlcy Posts: 132Member Pioneering
edited December 2017 in Guest blogs
Continuing our discussions around isolation in the lead-up to Christmas, Heather talks to us today about the impact of 'pacing' and activity management, and how this can affect her mental health.

You can feel it in the air. It's the darker mornings, the bitter chill of the weather, and the twinkling lights illuminating high-street windows: Christmas is nearly here.

Christmas is a traditionally busy time: there's parties to attend, friends and family to visit, feasts to plough through and shopping for our loved ones. Most people take these festivities in their stride, without having to give the non-stop socialising and partying a second thought. But for those with disabilities, Christmas can be a particularly difficult – or perhaps even isolating – part of the year. 

selfie of a blonde haired girl wearing a black top and multicoloured glasses

As someone with cerebral palsy – amongst other conditions – I find this time of year quite overwhelming. Many of us in the disabled community will tell you that 'pacing' is a big part of our lives, and during this busy period, pacing can be so difficult to maintain. Pacing means individuals have to plan their time, and prioritise certain activities over others. So, as you can imagine, Christmas makes pacing almost impossible. 

Growing up, I became very aware that I had to approach the socialising and festivities from an entirely different perspective. It wasn't possible to go out most nights, do the Christmas shopping, go to work and do all the other things most young people usually do. And, when I attempted to do everything my friends were doing, my body would pay for it. A big part of my conditions means I am hugely fatigued most of the time, and with fluctuating chronic pain levels, this fatigue only gets worse. Partaking in the 'usual' amount of socialising expected of the season can really take its toll, and the only way to minimise the pain and discomfort is to only do what you feel is possible. 

Unfortunately, saying 'no' can often be the most difficult thing to do.

It's hard knowing that whilst you're tucked up in bed, nursing a painful, uncooperative body, that all of your friends are out partying and having a great time. As I've grown older, I am slightly less upset by this - as social events become less about the partying and more about having a good-old catch up -  but sometimes, having to say 'no' even to these events is really very disheartening. It's hard knowing that – through no fault of your own – it's simply too hard to make it to the plethora of social events that make up the majority of the season.

This isolation is felt by many disabled people over the holidays, and, as many of us will tell you, this can be so detrimental to our mental health. This Christmas, perhaps take the time to consider hosting events that are accessible, and that can – and should – be enjoyed by everyone, regardless of disability. If you know your friend has a disability and that they're likely to say 'no' to an event, still invite them: they might say no, but they will know that you have thought of them. Better still, you have given them the choice to decide what is - or isn't - good for their bodies and mental health. 

Christmas is meant to be a season of joy, shared with those who matter the most. No one deserves to feel left out, or isolated. And as disabled people across the world prepare for this hectic, overwhelming time, we would appreciate nothing more than to feel included and supported. 

You can feel it in the air. It's the darker mornings, the bitter chill of the weather, and the twinkling lights illuminating high-street windows: Christmas is nearly here...

Can you relate to Heather’s story? Share your thoughts in the comments below!

Replies

  • di2110di2110 Posts: 1Member Listener
    I totally agree like others my illness is invisible as well as chronic pain and fatigue with other problems  I have Epilepsy so all the meds that would help I can' t take. I find it so difficult to do the simplist things and have gone from running a care home to not even being able to walk properly.
    The way I look at it is there are many people who are  worse off than me but it' s getting increasingly difficult to be positive. 
  • HeyokaHeyoka Posts: 6Member Listener
    Agree with all above.  I think the TV Adverts have a lot to do with it all. I think one year the TV should put 50% of the ads. showing Christmas for the Disabled and Long Term Illness!!!!!!!!!   Instead of making it all lovely and making us with Health problems feel even worse.  Also what about people who cannot afford to spend and shop like all the Ads.  Also being alone at Christmas can bring much pain to people.
  • MarkmywordsMarkmywords Posts: 398Member Pioneering
    On top of all my usual problems, in the last 3 months alone I've had;
    Auto-immune hemolysis (anaemia),
    Shingles,
    Post-herpetic neuralgia,
    and now an idiot with poor hygiene at work gave me a cold which led to a bacterial lung infection.

    Being immune-compromised I don't respond to oral antibiotics. I expect to spend the Christmas week either in my bed or a hospital bed and see no-one socially. :'(
  • Baloo456Baloo456 Posts: 8Member Listener
    My disability isn't visible as I have aspergers, a form of autism, I struggle with social events that leave me absolutely exhausted. Sharon 
  • icecreamicecream Posts: 14Member Connected
    htlcy said:
    Continuing our discussions around isolation in the lead-up to Christmas, Heather talks to us today about the impact of 'pacing' and activity management, and how this can affect her mental health.

    You can feel it in the air. It's the darker mornings, the bitter chill of the weather, and the twinkling lights illuminating high-street windows: Christmas is nearly here.

    Christmas is a traditionally busy time: there's parties to attend, friends and family to visit, feasts to plough through and shopping for our loved ones. Most people take these festivities in their stride, without having to give the non-stop socialising and partying a second thought. But for those with disabilities, Christmas can be a particularly difficult – or perhaps even isolating – part of the year. 

    selfie of a blonde haired girl wearing a black top and multicoloured glasses

    As someone with cerebral palsy – amongst other conditions – I find this time of year quite overwhelming. Many of us in the disabled community will tell you that 'pacing' is a big part of our lives, and during this busy period, pacing can be so difficult to maintain. Pacing means individuals have to plan their time, and prioritise certain activities over others. So, as you can imagine, Christmas makes pacing almost impossible. 

    Growing up, I became very aware that I had to approach the socialising and festivities from an entirely different perspective. It wasn't possible to go out most nights, do the Christmas shopping, go to work and do all the other things most young people usually do. And, when I attempted to do everything my friends were doing, my body would pay for it. A big part of my conditions means I am hugely fatigued most of the time, and with fluctuating chronic pain levels, this fatigue only gets worse. Partaking in the 'usual' amount of socialising expected of the season can really take its toll, and the only way to minimise the pain and discomfort is to only do what you feel is possible. 

    Unfortunately, saying 'no' can often be the most difficult thing to do.

    It's hard knowing that whilst you're tucked up in bed, nursing a painful, uncooperative body, that all of your friends are out partying and having a great time. As I've grown older, I am slightly less upset by this - as social events become less about the partying and more about having a good-old catch up -  but sometimes, having to say 'no' even to these events is really very disheartening. It's hard knowing that – through no fault of your own – it's simply too hard to make it to the plethora of social events that make up the majority of the season.

    This isolation is felt by many disabled people over the holidays, and, as many of us will tell you, this can be so detrimental to our mental health. This Christmas, perhaps take the time to consider hosting events that are accessible, and that can – and should – be enjoyed by everyone, regardless of disability. If you know your friend has a disability and that they're likely to say 'no' to an event, still invite them: they might say no, but they will know that you have thought of them. Better still, you have given them the choice to decide what is - or isn't - good for their bodies and mental health. 

    Christmas is meant to be a season of joy, shared with those who matter the most. No one deserves to feel left out, or isolated. And as disabled people across the world prepare for this hectic, overwhelming time, we would appreciate nothing more than to feel included and supported. 

    You can feel it in the air. It's the darker mornings, the bitter chill of the weather, and the twinkling lights illuminating high-street windows: Christmas is nearly here...

    Can you relate to Heather’s story? Share your thoughts in the comments below!


  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Thanks so much for sharing this @htlcy - great glasses by the way!!! 
    Scope
    Senior online community officer
  • icecreamicecream Posts: 14Member Connected
    i find the idea of christmas, impossible to do, my mental health goes on overdrive the thoughts of self harming to suicidal thoughts go in to orbit. the fact that it seems to start earlier yr on yr really does not help ? i dont do family gatherings , i dont go to partys with friends , i no longer watch normal tv the adverts make me feel so worthless .. i have learnt over the yrs to lock myself away for the wk of christmas 
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @htlcy Thank you for blog.  I can identify this when I was young and I never had then people who understood me.  Especially when I asked to go to events and had to say no.  If I can recall briefly I was the entertainment and amusement for people at parties.  It becomes tiresome when they are boring and have nothing to say.  Yet am witty full of stories and one liners.  Did usual round of parties make me laugh.  Well I did but still ended up going home alone.  Here we go again sorry every body another load of Christmas moan and groan sorry.  I think it is great you can do these things now and I hope you can continue to do so.  If you can.  Planning and organising is the way for me.  Last week shopping for food and stocking up fridge, freezer.  Have to because of the hordes of people suddenly getting anxious one day shops closed help.  So I just wait till it is all over.  Please can I also stress enjoy yourself and do what you can.  Great fantastic.  Life is too short.  Best wishes in all you do and I like your funky glasses.  Take care
  • GeoarkGeoark Posts: 1,186Community champion Pioneering
    I do spend a lot of time seriously considering if something is worth the pain I often experience afterwards and would it have a knock on effect where work is concerned. As a result when I do have money to spare to do something I usually pay for my wife and daughter to go and do something together.

    One thing which is important to me is that I spend time with my daughter so she builds up memories of me other than someone who is always in pain and not able to do much but go to work. So I do try to book time off so that we can do something together, usually involving her doing some shopping or visiting a favourite shop.

    As I started my Christmas time off today and not back until January, and she had the day off decided that it would be a good day to visit one of the many winter/Christmas fairs with her. She had already visited the one at the Southbank and found a stall doing salted caramel brownies with chocolate chips that she loves. So after starting at McDonalds - surprised the chips were not drowning in salt and the burger was half way decent - we visited the winter fair. Warm brownies, a couple of owl ornaments and a cup with a dragon as the handle later I was ready to head home. 

    So off to Leicester Square winter market we went. Had a good time looking round and a couple of shawls for the wife and present for the cat later I was once again more than ready to head home. Forbidden Planet is close by and daughter has not been there for a year so once again off we trotted. One Niffler plushy (fantastic beasts and where to find them fame) and we were on the move again, this time back home.

    Got home and struggled to lie down, but as soon as I did there was a click as something went back into place and then an hour of spasms while my muscles settled down. At the moment I feel tired and in a lot of pain but I am okay with that as this was my main Christmas treat to myself. Hopefully my body will have settled down before Christmas day, but if not it is a price that I am happy to pay.

    What really topped it off was when I asked my daughter what her favourite gift was, thinking it would be the plushy but no. Spending time with me and having a good laugh.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • ChaoskayChaoskay Posts: 74Member Courageous
    On Xmas day, I was in the midst of a rather severe rheumatoid arthritis flare - but I had agreed months in advance that we'd host Xmas dinner for 10 people. I worked so hard to get the house clean and tidy, wiping all the surfaces down and hoovering, that my right hand was doing the swollen claw thing and my arm wouldn't work properly, meaning I had to clean my teeth with my left hand as the right one couldn't even hold a toothbrush properly.  Peeling and chopping vegetables or holding pans of roast spuds was not an option
    I was embarrassed, ashamed and humiliated that I was unable to do the things I wanted to.  Thankfully my husband, my 12 year old daughter and my mother in law took over and I've never been so grateful.  They didn't even complain, although I spent the entire day worrying that people would think I was being lazy.
    It's just horrid feeling useless. I told myself I was stupid for not pacing myself and not doing all the preparation beforehand.  I mentally felt like an attention seeking idiot later too as later on in the day my wrists and hands eased and yet everyone else already had control of the cooking so I wasn't needed, mind you my hips were seizing up by then instead.  It was all about self blame really.  But I couldn't help it.
    I missed out on a boxing day family gathering because I just didn't have the energy to cope with another day of socialising and hobbling around.  I thought they would think I was rude.  Again, I couldn't really help it.
    Pacing myself is a constant problem, my condition means I don't know what state I'll be in from one day to the next.  I suppose the answer is to just accept that my condition is unpredictable, but life is all about making plans.  I hate that I can't rely on even my own body to back me up when I need it to.  This really hit home this Xmas.  :(
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Whilst my problems are vastly different I had similar issues. Having my son over Xmas day evening and a couple of his friends too. I faced a mountain of clearing and cleaning before mf friend turned up Boxing Day. Even simple tasks like hovering is too much for me and I was already committed to preparing and cooking dinner. I got round the dinner issue by chucking everything into a slow cooker only leaving rice to do. However, hovering and mopping the shower room completely exhausted me and I crashed into sleep for a couple of hours before she arrived. Knowing it was coming though gave me the chance to set an alarm but even so it took me far longer than usual to get cleaned up and dressed and I only just made it in time. We had a lovely time together but after only 2-3 hours I was yawning again. fortunately she is aware of my problems so noticed I was flagging and left promptly. I then crashed in my chair, asleep for 4 hours. This led to being awake a lot of the night but at least the evening went well.

    Living alone I have no others to help or fall back on which means that no matter what the cost, if I want to entertain it is all down to me. I only do so for people that are well aware of my problems.

    Everything we do requires much more effort and planning than it does for those without such issues. Not that they could ever understand fully what things cost us. It doesn't mean we should give up though, just plan better.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • GeoarkGeoark Posts: 1,186Community champion Pioneering
    Hi @Chaoskay one of the reasons I used to hate about family gatherings was family members insisting they do everything and having to do what the host wanted.

    Some of the best have been with friends who are more than happy to let others join in. My wife would help with the cooking while I entertained the kids but then the men would do the washing up afterwards while the women relaxed. 

    Unplanned activities so I would end up having make up being put on, and no sooner done my wife volunteers me to go to the shop to get something. Or having my legs waxed because the girls heard it was painful and wanted to try it on someone else first. Then the arms, then the back not a flinch. When someone suggested they do my chest I quickly pointed out that they would run out of wax strips and should do their legs. As they counted down and pulled the first strip off the screams of joy(?) was definately worth it.

    Given the choice between sitting around bored pretending to enjoy myself, or having a day where I didn't have a clue what might happen, I know which I would prefer.

    What I am trying to say is being the perfect host is part of the trap we fall into, but letting things happen natually can be more fun for everyone.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • ChaoskayChaoskay Posts: 74Member Courageous
    @Geoark You are completely right.  Going with the flow is the best way to deal with things.  It's still frustrating when I have such high expectations of myself though. 
    So, you weren't a fan of waxing then?  That did make me laugh.  I'd rather stick to having unfeminine, furry legs than deal with that level of pain I think.  :)
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    @Chaoskay if pain is a concern then try heavy pain medication. The tattoos I have had sorted out recently I barely felt with the meds I have to take, lol!

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • GeoarkGeoark Posts: 1,186Community champion Pioneering
    @Chaoskay fortunately as a man I don't have to worry about waxing, plus with a lot of nerve damage I didn't feel any real pain. I do however have a very hairy chest and had not intention of finding out if I would feel the pain there. 

    I am sure if your arthritis had not flared up  you would have been the type of hostess you envisioned. Hopefully if the people you invited know you they will not be thinking the things that ran through your mind.

    I have family who have high expectations not only in themselves but in their guests, one reason why we only ever accepted an invite from my brother once to spend  Christmas with him. It is one reason why I appreciate our friends who are much more relaxed.

    As I am never sure what I am going to be like from one day to the next I keep my expectations low and do what I can. The main exception to this is spending time with my daughter.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • HazelhHazelh Posts: 1Member Listener
    Hi I am a woman with CFS and I can so relate to this article and the comments. I do work part time but have to pace myself so that I have the energy to work. Luckily I have a job that I enjoy so that acts as part of my social life. Happy New Year to everyone here!
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    edited February 2018
    Hello @Hazelh Pleased to meet you.  Welcome to the forum.  Hope you OK.  Sending a message for New Year Hope it goes great.  Best wishes.
  • NY19NY19 Posts: 14Member Connected
    Couldn't agree more about inviting people anyway - my partner and I both have ME/CFS and have had to say 'no' so many times that nobody invites us any more! Saying 'no' is tough but not being asked at all is worse.
  • htlcyhtlcy Posts: 132Member Pioneering
    Thanks for reading, everybody, and many thanks for your kind comments.  I hope Christmas and New Year were bearable for you. I'm going through a flare up just in time for work! I agree though, it's all about knowing limits and only doing what you can. Sending positive vibes to all of you :)
  • DasiydoDasiydo Posts: 94Member Courageous
    I got five promble First is two secert Santa and promble had in Primemark and M&S but tell late or think ready post on one boards I think my 2 promble I half deaf and also got dyspraxia but third prombles most shopper keeper know BSL sign language but only just found out  I half deaf I only can Markton sign language but know one know in Staffordshire it like Stoke on Trent people only know it.

    Transport is another promble fall with caring so had get my brother drive me to Red Hill Christmas meal but I was early because he had go work and Tilltion Hotel for another Christmas meal and double booked with same day New Northfield field centre and it was snow. So hear tough promble do Peer group recover for mealth health and small group use go to Risebrook Cafe and I happy meet with old friends again do another group as well and college Crouse but also before computer center at 1pm I meet with disabilities friends at 1230am just had pudding or cake and have laugh and joke.  Then order my food this old man was moading about everything say don't cook there food and it cold I want turn around tell him shurt up but didn't " You don't look deaf" " Oh don't I what these?" " Your MP player " " Excuse me  wait for my food don't push in Que" " Can bring coffee over please ask staff nicely even was having hearing aids promble" " So went back to talk to my friend then all went to computer center and made Christmas card on the computer. I feel awful because let my Risebrook friends down other peer group down because of Snow but very ice didn't have caring help me and buses did try get through snow it was payment to ice you end up walking on road because pavement was too ice.
    My secert Santa didn't go right because could not get help in lift in Primary mark or M&S staff won't  help me I upset use health and safety on me but took wheelchair in lift and Parent in push chair but not Austin, dyspraxia or half deaf and because hide disability so won't take me up Lift so my two secert Santa went wrong. I just went with flow my other promble got two beautiful cats called Sydnee and Annbel and I had leave them loney on Christmas Day could not find Pet Sitter at all but did on boxing Day thinking my brothers won't feed them but there did so could stay my sister longs. Then had brightest cake and green tea at my other brother house. I had say part from few hidecup I had nice Christmas 
    V.shaw
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Dasiydo How are you?  Reading your thread seems you had a few problems and difficulties.  I understand that. Life never runs smoothly.  Things and obstacles always arise.  I hope this year work out.  Best wishes 
  • AlexAlex Posts: 1,325Scope Team Scope community team
    edited January 2018
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