As the days draw nearer and people begin to celebrate that magical time of year, the Christmas season, I find myself having yet another Spoonie Christmas.
A Spoonie Christmas you ask? What is that? Well what I mean is a Christmas where I have a list of things In my mind that I wish I could do but due to chronic illness and a lack of energy it simply is not possible.
Christmas With Chronic Illness
Being ill during the Christmas season for many means you have to pick and choose what you will and won’t do. For me this year I chose to take my child to the Pantomime.
Don’t get me wrong, this was an amazing experience however as a Spoonie a decision is more than a yes I will no I won’t, a decision is more like what will I do and what will I give up to be able to do this?
So whilst I have a small achievable Bucket List of things to do this Christmas season, here are the things I’m unable to do. The things I took for granted before illness struck.
Those things every day healthy people can do without thinking, will that put me in bed rest for the next week?
This is my Spoonie Christmas
Sitting in the lounge watching my hubby and child put up the tree. I’m all positive and full of laughter.
I joke and laugh as I sit and dish out suggestions for decorating. Hey I even write a blog post on how fun this is but deep down I feel the pain of not being able to join in.
I can’t stand up and decorate the tree, it would burn me out.
I can’t say, let’s jump in the car and go choose a real tree this year. I’m too sick to get off the sofa and how would we got a tree in the car with a wheelchair?
I could send my hubby to go get a tree but that defeats the fun of choosing one as a family.
I can’t take a trip to town or the shops to go find new decorations, to search out bargains in the charity shops, which I used to do.
I have to make do with what we have because doing those activities would burn me out.
I smile and pretend to be happy but the reality is deep down I feel disappointment and sadness.
Yes I had Christmas baking on my Bucket List, heck I’ve even mentioned it but the reality is its not going to happen.
I’m not even well enough to cook my own meals. If I spent time baking treats, well if attempted to do so, i’d not have energy to walk downstairs or have a shower.
I’d love to make truffles and fudge like we did in he past.
To create Secret Pixie gifts and bake Christmas treats to drop at the doors of our friends and run away before they see who it is. We can’t do this, I don’t have energy.
Christmas Carol Singing
I remember the days I use to go carol singing. I want my child to experience this. I find myself laying in bed saying maybe next year.
I always visited the old people’s homes and attended to wish them a merry Christmas and sing carols.
We would go to the Carol concert at church and join in the singing.
I can’t do this. singing burns me out! It’s one thing I love to do but it uses up my energy. Maybe we can have a singing session at home instead?
I compromise and try and find a way to adapt. It’s just not the same.
I’d love to sit and make Christmas gifts. I barley had the energy to wrap my daughters presents. Heck, I don’t even have the energy to choose the gifts.
Before Chronic illness I would go out shopping. I love the hustle and bustle of Christmas seeing the toys and gifts on sale.
This year all gifts have been bought from the Supermarket. Yes there are some lovely times but it would be great to go to a mall or shopping centre. I’m just not well enough. Maybe another year.
We have parties to attend, friends and family we would love to see at this time of year. If I had my health id be planning a. Few days I’m Yorkshire visiting friends.
Some family don’t understand, “don’t you want to see us?” They ask! Of course I do but if we went visiting family for the day, I’d probably not be well enough to enjoy Christmas Day with my hubby and daughter. Heck it’s going to be tricky as it is! So this year as much as I say yes it will en nice to see you, we probably won’t do so. I’ll get my hubby to post the gifts. There’s always next year.
The list goes on and on. I do not have the energy for every day tasks. If I am to do anything to celebrate Christmas something will have to give. We plan to prepare our Christmas meal on Christmas Eve.
Peel the veg the night before and put our meat in the slow cooker when my Child wakes us with her Santa stocking.
It will be lovely having a Christmas dinner but it will mean exhaustion on Christmas afternoon. I currently can’t get through a day without sleep and rest. Christmas Day will be no exception.
I’m not the only one in the home with Chronic illness. My husband suffers from Chronic Fatigue Syndrome.
Most people don’t know. It’s partly to do with the fact he was born without a thyroid. We are both spoonies and we will be having yet another Spoonie Christmas.
We will make the most of life and do what we can this festive season.
We will give our child the best Christmas we can which includes attending some pantomimes which has been fun but being chronically unwell also means many sacrifices of the normal traditional Christmas activities that so many people take for granted.
We will enjoy Christmas the best we can but not without feeling bitter disappointment for that which we are unable to do due to Being a Spoonie, Chronically ill with no energy.
I know how disappointing special Holidays like Christmas can be when you are sick. Before I got sick I had the whole family group 20-25 people at my house for Christmas Eve dinner, and the next day we would all go to the in-laws and party again. Can’t do that anymore. Invitations don’t arrive anymore, sad to say, but me and Hubby still have a nice few days celebrating. Both my grown sons moved 1200 miles away,so I don’t see them either. Maybe sneak a little extra HC on Christmas Day so you can enjoy the day with your beautiful family
Yes, I think i may need some extra medication Christmas day so we can enjoy a christmas dinner and the whole day without crashing out.
Ana De- Jesus says
Aw hun it made me sad reading this post because there is so much that you want to do but can’t do . We all take the little things for granted and its only when they are gone that we realize. I am like your husband, I have CF too.
Chronic Fatigue is not a nice illness…exhaustion really does make life different. I hope your condition improves as well as mine.
Vikki Holness says
I feel you pain mama, i’ve lived with Chronic Fatigue Syndrome for 13 years now so these words really hit a nerve with me. There is nothing more frustrating and disheartening than having to sit back and watch while others do the things you wish you could be doing! xxx
Thanks Vikki, Chronic fatigue is no fun and makes live hard, I know many people have this issue and its never easy!
Becky, Cuddle Fairy says
I can’t imagine how difficult it must be for you & your husband. I’m glad you have been able to bring Sylvia to the pantomimes, they looked really great & I’m sure she has really enjoyed them. Hopefully next Christmas will find you with a real tree 🙂 x
Thanks becky. It’s been nice to take Sylvia out when we have done.
Such a brave person it must be so hard to miss out on Christmas stuff with ur child due to being exhausted all the time. I hope you enjoy the panto.
Thans Joanna. It is hard at times and upsetting but I try to focus on the true meaning of Christmas and what is important like family and while it is really hard and i want to do all these things…. i am grateful to have a lovely family.
Miranda (Myrabev) says
Awwww bless you, all these things we take them for granted it really makes me want to give you a virtual hug.
Thanks. Sometimes I just need to write how i feel down and it was one of those days.
Awww, this doesn’t sound nice at all. I can relate to some of it because I have a condition too (Not being able to do what I’d like or use to be able to do) but not as bad as yours! I’m so sorry you have to go through all this. *hugs* I hope you have a lovely Christmas with your family despite not being well. xx
Thanks Sarah. It is a fluctuating thing and sometimes I do do things but then have to pay the price for a long time afterwards. Thanks for the hug
Zoe Forde says
Excellent post Angela. I really relate to what your saying. Living with depression, Christmas can feel very trapping for me and I struggle with how my feelings don’t always match the ‘joyous mood’ that’s the norm. x
Thanks Zoe. I’m glad you relate. It can be difficult for people no matter what the illness. 🙂
Jade Priscilla says
Your post has made me realise how much I take for granted, every day tasks which are not so simple when unwell. Wishing you and your family a very Merry Christmas 🙂 x
Thanks I did the same too before I became unwell and I guess it’s a good thing to be aware of what life is like for different people.