Tuesday 10 August 2021

Chronic illness & special occasions

Blurred focus of a caucasian woman in the background in the foreground is lit candles shaped like letters spelling birthday the woman in the background is posed to blow the candles out
Special occasions can be hard when you're chronically ill as it may mean missing out or not being able to participate s much as you would like to. I find this really hard myself and though I've come to a point of acceptance that I'm not able to do this or I'll only be able to make a short appearance I do still feel a sadness but sometimes resentment towards my ill health for stopping me from enjoying social occasions whether this be my own birthday, Christmas or family get-togethers like we've recently had.

I only know my Dad's side of the family and my Dad had two other brothers and a sister and one of his brothers and his sister live away - my uncle with his wife and my sister with her husband and son. My other uncle and his girlfriend live locally but we don't see then loads compared to hw often other families see each other. So for us seeing family is always a special occasion that I look forward to.

However because of my chronic illnesses I'm limited with everything that I ca do and there are no breaks from it so I can't just press the pause button to enjoy special occasions.

The past few days Saturday to Tuesday (today) we've had a family get-together (on my Dad's family side) as one of my Uncle's has just turned 60 so my Dad's brothers and sister (and one of my cousins) have travelled from where they all live for the occasion. As it was a special occasion my Dad arranged some family things for everyone to spend time together but there was only one thing on the agenda that I could do and even with that event being here at home it was a challenge and I couldn't mange to stay for the whole party.

This felt hard as Naomi wanted to be able to do more things; things I enjoy or haven't done in a long long time and make the most of the rarity of our family all being together. I suppose you could use that popular acronym FOMO - the Fear Of Missing Out to how I feel as I do feel like I'm missing out and it's hard being stuck at home whilst my family are all together having a lovely fun time doing enjoyable things together without me. Even if I used my wheelchair I still wouldn't have been able to participate as my body can't cope with being out for long especially engaging in activities for several days in a row and it would have lead to a big crash and it would be very difficult for me to recover from and would have taken a long time to get back to my level of 'normal'.

I have to be so careful with where I put and spend my precious energy and my symptoms don't stop for any occasion. There are no days off from being ill unfortunately so you just have to do your best to embrace and live your life within the limitations posed by my illnesses.

Dad when he was planning the family get together did plan to have the party on Sunday here at home so I could at least join in with that and because it was here I could easily go to my bedroom when my body had had enough. I say my body because I, Naomi, hadn't had enough - it was my body and my symptoms that had enough when I retired to my bedroom. I pushed my body as far as I could because I wanted to make the most of seeing my family. I do find that sometimes there are times where it's okay to push myself which are actually generally at special occasions. During the party I did step back for a while; I went and sat away from everyone to somewhere quieter to dull down the sensory overload for a while. Doing things like that I find helpful.

Tips for coping & enjoying special occasions*

  1. Pace yourself - you don't have to do everything or all at once.
  2. Think through what aspects you'll join in with and which parts might be best for you to sit out of.
  3. Help out with the preparations as this can be just as exciting.
  4. If it's an occasion like Christmas or your birthday you can decorate your room to help you feel like you're part of the celebrations.
  5. It can be hard if you're not able to eat the special occasion meal such as Christmas dinner or birthday buffet but you could maybe select one food if you're able to eat a little so you feel like your still part of the celebratory meal - a small piece of cake will be just as enjoyable as the whole buffet.
  6. Spread out opening gifts, this could be throughout the day or over several days.
  7. When it comes to opening gifts to make things easier you could ask family and friends to make them easier to open such as by using less sellotape or putting gifts into gift bags.
  8. You could film yourself opening gifts and share this video with family and friends so they can see you opening their gifts to you.
  9. If you're not able to participate ask for people to take photos and videos for you to watch and look at so you can see what went on.
  10. If you are able to participate in an event, even if it's for a short while take photos and videos of yourself with your friends and/or family so you have something nice to look back on.
  11. If you're not able to attend a special occasion ask for someone on your behalf to pass on you best wishes, congratulations, happy birthday or other sentiments. Alternatively you could write a card with a message to be given to the person the special occasion is for so they know that you are thinking of them.
  12. Remember that your family will be understanding if you're only there for a short while or not at all.
* Advice taken from 'Severe M.E: A Guide to Living' by Emily Collingridge - (many of the things listed I've done myself and they do help a lot.) Just as a side note if you have Severe M.E I would highly recommend this book which you can purchase here