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Tips around getting through Christmas with a Chronic Illness

alihemsleyalihemsley Member Posts: 1 Listener
edited December 2019 in Guest blogs

I’m Ali and I’m a 25-year-old fashion and lifestyle blogger from Brighton. At the age of 17 I became unwell with symptoms of fatigue and widespread pain and was consequently housebound. After 6 months, I was diagnosed with ME and Fibromyalgia, and was placed on antidepressants due to the mental health effects of these conditions and the isolation that they caused.

I struggled with my fluctuating health a lot over the following few years but now I’m much more in control of my conditions. This is mainly due to acceptance, understanding and changes in lifestyle. As well as working with brands as a fashion blogger, I’m now starting my own business ‘The Chronic Wellness Club’ - a subscription membership site to help those with chronic illness and mental health conditions to build their resilience and improve their wellbeing.

With Christmas coming up, I’ve been thinking a lot about how I’m going to cope with the holidays. Routine goes out the window, things suddenly get very busy, there’s a pressure to give into ‘temptations’ and it’s also super cold! It can be a very different time when you’ve got a health condition, whether it’s mental or physical, so I’ve compiled a few tips to make the festive season more fun and less fearful.


Plan rest time

I’m very used to pacing due to my chronic illness, particularly my fatigue, but this concept might be quite new. I’d advise reading up on the Spoon Theory and trying to estimate how many spoons you have per day and how much activities use. It’s very easy to fill your calendar with lots of fun things and then realise you have no downtime to rest and recuperate. That time is so important, so I’d suggest trying to create a good balance between rest and activity.

And make it fun!

Rest doesn’t have to be unsociable or boring. In fact, I’d say the more enjoyable you make it, the more likely you are to feel better from it. Write down a list of Christmas films you’d like to watch, buy a Christmas-scented candle to light, pop on your new pyjamas, grab a cosy blanket and get some yummy treats! Want to socialise but also need a little rest time? Invite a friend to a movie night or pyjama party rather than a night out!

Be prepared

We all know what the holidays are like, with the distant relatives we only see once a year who always seem to ask us the personal questions that really aren’t necessary.

“Have you got a boyfriend yet?”

“Are you STILL ill?”

As much as I love my Gran, every year I know she’ll make a comment that’s unintentionally slightly upsetting! It’s easy to let these negative comments, no matter how misplaced in their intentions, make you feel low. I find that practising a short, succinct answer to these questions really helps to make me feel more confident when discussing a sensitive subject. Remember, you can answer as much or as little as you feel comfortable, and it’s okay to say, “I’d rather not discuss it” and then divert the conversation onto something else.


Don't fall into the comparison trap

Whether you’re comparing your family, your presents or even the amount that you’re doing over the festive period. Remember, comparison is the thief of joy! It’s easy to fall into the comparison trap, especially because social media is a ‘highlight reel’ only showing you the best bits of someone else's life. Try to take everything with a pinch of salt and remember that everyone is dealing with something behind the scenes, so kindness is key!

Practice gratitude

This is really an extension of the previous tip, but it’s so important that it deserves to be a standalone point. During busy times, when I’m particularly prone to flare ups or feeling low about myself due to health-comparisons, I try to think of things that I’m grateful for. I’m grateful to have people in my life that support me and bring me joy. I’m grateful to have a warm, safe home. I’m grateful to have clean running water.

Ali’s can be found on Instagram and YouTube. You can also find out more about her new business venture The Chronic Wellness Club.

What are you grateful for this year? What films are on your Christmas watch list? How are you going to pace yourself? Let us know in the comments below!

Replies

  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello and welcome!

    This is going to be a memorable Christmas. In previous years both kids were too little for me to try to talk about Christmas with them beforehand. So I naturally want things to be different this year. With that in mind, we do have a number of tried and tested Christmas traditions. Some are from my early childhood and a few are ones I trialled out in my pre children years. 

    Instead of a big Christmas meal, we are doing things our way. Rather than waste time cooking, we are ordering most of the food from a local supermarket. On Christmas Day we will not eat turkey either. On Christmas Eve, we will unwrap gifts in the early morning. What are your traditions? 

    Then we will go to church to pray and fhen come back for lunch. For lunch, we will have egg sandwiches that is it. After lunch, we will probably play games or watch a festive movie as a family. As the evening approaches, we will pull crackers and resume opening presents. We will finish the day with a prayer and a glass of wine. Dinner will be cranberry pie with turkey. 

    On Christmas Day, we start off with coffee. Then we have a party! In lieu of a big old fashioned Christmas lunch, we have drinks, snacks and nibbles for party guests. Dancing too. In the night time, we sit talking or take a quick walk for air. I personally don’t like balloons so we don’t have any. But there will be music and laughter. That is a tradition from my early childhood Christmas parties. I will invite friends round on Christmas Eve too. 

    How do you celebrate Christmas? I agree. Every year I say thanks for something before I eat my Christmas dinner. 


  • redgeredge Member Posts: 1 Listener
    Hi, I was diagnosed with fibromyalgia of May this year. I'm still coming to terms with it, mentally and learning how to listen to my body. I was  just starting  a life of my own after my youngest of 5 children had turned 16. I started doing a degree in university and held down a part time job, when bam! My body starting saying no 😖  I'm grateful for tips and suggestions. At least this year I will be getting out of cooking Christmas dinner for everyone, theres always a positive to my disadvantages, that's how I'm trying to see things from now on 😊 love and best wishes 🥰
  • TopkittenTopkitten Member Posts: 1,258 Pioneering
    I've suffered Chronic Pain for many years and have been through hectic Christmas's trying to cope and being left out so that I don't suffer.

    Taking suitable rests or planning a less painful way of doing things is called "Pacing" by the Pain Clinic and of all the advice I have been given that has been the most useful. As for inappropriate comments, I have now been faced with them so many times I don't really hear them any more and simply ignore them when I do hear them. They are personal questions they have no right to know the answer to and if they cannot be bothered to remember previous answers then tough luck, I am not going to explain over and over simply because people cannot be bothered to take notice of what I say. Chances are that they are only asking out of politeness anyway and don't want to know the answer really, certainly not any detailed description. Oddly it was my sister that did this the most and then, after a long description of how I actually was one time, she complained that I shouldn't go into such long details. I replied with "If you are being so rude as to not be interested in how I actually am and are only asking because you have nothing better to say then don't bother asking in the first place, simply show your ignorance in not being really interested with how a family member is feeling". I heard my eldest daughter trying hard to suppress laughter as she left the room as she had over heard it all and was trying not to be ignorant herself, lol! My sister was not best pleased but then she shouldn't have upset me first.

    I used to explain to the family how I was doing beforehand in order not to embarrass them at the time but found that this only encouraged them to leave me out of things for fear of making me suffer. Now I tend more into only saying the good things whenever possible.

    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.
  • Sharon78Sharon78 Member Posts: 2 Listener
    Your comment comment regarding your sister is like me and my eldest son who is now 23 I have chronic pain fibromalgia along with a list I do try no to mention it I have never asked someone to help me unless I am desperate it’s just the way I am I can’t stand sympathy it’s not me I’m a single mum of five spent ten years with a man who used to use me for his own entertainment u TIL the beatings got so bad I was scared he would kill me in front of my babies i think that a lot of the back and beck
    pain is down to when he used to kick me with his boots on I heard the rib xrack but no dr as usual once he kept me in the bedroom for six weeks because he beat me so bad and it was on the face I could not hide or cover it six long and still abusive weeks I would have took my life but my kids sorry I have to stop x
  • brujah81brujah81 Member Posts: 56 Courageous
    Hiya my name is Kelly; i have fibromyalgia, EDS and ME. Christmas is always so hectic. I always try to plan the odd day here and there or the odd morning to rest but i always become totally exhausted going to peoples houses etc. I have had fibromyalgia for about 12 years and the EDS well i was born with it.. The ME about 10 years.. Pacing is hard over Xmas and new year... i am  pretty good the rest of the time with pacing.. doing stuff every other day.. but most people just dont get it.. my pyschotherapist recently suggested swimming every morning.. i just kept my mouth shut.. i do enough every day to keep myself from shutting down.. chucking something everyday in the mix would kill me.. never mind arranging carers to take me and then there is getting dressed and undressed which people dont realise just how exhausting it is!
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,182 Scope community team
    A great post @alihemsley! Very informative! Thank you everyone else for sharing your thoughts. 
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    Scope

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  • TopkittenTopkitten Member Posts: 1,258 Pioneering
    I think @Sharon78 it might be better for you to raise your own post about such things as I am sure you are not alone in being treated so badly and some others may need more convincing to do as you have done and try to leave the abuse behind. Talking does help and people here (except perhaps me) are mostly supportive and kind. I'm just too old and mean to support others in such a way. Bah humbug! LOL!

    @brujah81, it is very difficult for people who don't suffer a chronic condition to understand what it means, It isn't easy either to understand a different chronic condition when you are used to dealing with your own. I have also found that the longer we suffer one chronic condition we tend to pick up another now and again. I now (like you) have 3 different conditions although mine are more similar to each other than yours I believe and whilst I understand the differences in a cerebral way it still is difficult to switch over to understand how a different condition "feels". As for the advice we are given...... currently society is on a big "exercise kick" and believe exercise to be the answer to everything whereas, in fact, it is the worst thing that you can do for many chronic conditions. I was recently in hospital and had to speak to a young male physiotherapist who basically told me that everything I do to control the pain was completely wrong and made no sense. This "kid" hadn't looked at my MRI's and so really had no idea what was wrong, he just believed everything he had been taught in becoming qualified and, because I wasn't qualified, believed everything I said was nonsense despite 15 years of hands on experience compared to his 0. Shortly after he started mouthing off at me I told him, in no uncertain terms, to ##??## off and it left me in such a state due to mental health issues that I discharged myself from hospital immediately causing a massive panic response from the nurses and doctors. Their panic I guess was understandable as I had been put into the Cardiac unit after being incorrectly diagnosed having strained muscles due to a chest infection and not had a cardiac event. Anyway I digress. All I can suggest is to do what you want to and can manage and simply ignore people who think they know better and say no if you cannot keep up. I've found that being a pessimist has it's advantages, I assume I can do nothing and am therefore pleased when I do manage to do something whereas an optimist usually ends up just disappointed.

    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.
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