An Invitation to an Event Full of Emotions

By Nicky Flikas

3 min read

One thing I miss about the beginning of the pandemic is not having to worry about events. Not having to worry of how I will get myself there.

I been getting invited lately to lots of events. But most of them, I haven’t been able to go, having to cancel last minute or coming up with an excuse because let’s face it, I have tried explaining to my family and friends, but still having a hard time making them understand without getting having them getting upset.

Working a full time job has been taking all my energy

Or, what some call spoons. When it comes to making plans on the weekend, it’s very limited for me. I have explained through my other articles, working all week with the responsibilities of a wife and a mother to 3 kids, with a chronic illness, this alone can be so much to handle. A lot of the times, I find myself struggling to keep up. Struggling through tears to find ways to keep going. This is where a lot of self talks happen. Yes I talk to myself a lot. If I don’t do it? Who will?

Words like: You got this! You can do this! This will pass! Just a little bit more! I know you're not feeling well right now, but this is only temporary and tomorrow will be a better day! Or like you have come so far! You have done this before! Or you have gone through this before and you can do it again. Sounds a little cheesy, but this is what helps me get through the countless bad days. This is what works for me to keep getting through my days.

When the weekend comes, there’s only 2 days to recuperate

There’s only 2 days to make sure I catch up on all the tasks around the house. It’s already hard every day of the week, as I struggle to get up for work and finish through the day without flaring up. It’s already hard by mid-day I start to feel like I can do it or finish the day. It’s already hard at the end of the day as I can barely feel my body from the pain. Sometimes having to order out because cooking is just not an option.

My weekends are usually kept for resting and trying to prepare myself for the next week of work and everything that comes with being a mom and a wife. Again this is what helps me keep get through this awful battle. This is what works for me.

Getting an invite used to be so excited for me

I loved getting dressed and going out. I loved seeing my family and friends and just having a good time with some drinks and food. This has changed. I dread it now.

I received an invitation 3 months prior for my nephew's baptism. I was already thinking of how I would go. I am at a point again where my biologics might not be working for me anymore making me flare often. The days have been feeling like the beginning of my diagnosis. To imagine going to an event that will consist of sitting long periods, trying to avoid dancing and having to socialize long hours was bringing already anxiety to myself.

These feelings are not the first. When I know I have an event coming up, I always end up feeling worse. I am not sure what to call what my body goes through. A flare? The week prior to the event, because I was so stressed and full of anxiety, I ended up getting sick with a loss of voice, increased pains in the chest and back. I wasn’t able to sleep from the pains which brought up exhaustion. My medications weren’t even helping me find relief. It felt like a nightmare.

I tried to explain to my family what I was going through, but yet again thought it might be an excuse. It hurts that they don’t see this invisible illness. I know everyone has their own issues. I know everyone has their own things they struggle with. But just a little understanding. Just a little belief that this is hard.

I ended up going to the event with my kids and husband. Thankful for my husbands support; he offered to go with the kids, but I just couldn’t let him go alone from the guilt that was eating up if I didn’t. I didn’t want to be the one once again that had to cancel last minute. Instead we made a plan to go and show our faces for a bit. We skipped the church and went straight to the reception. Stayed a little and once I saw I just couldn’t anymore, the night ended for us.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Lisa Marie Basile Moderator & Contributor
Thank you for sharing this very vulnerable and honest and relatable post. I simply couldn’t relate to this anymore! Are used to be so energized and so capable. I remember feeling like I could do anything. Now everything is a weighted decision, and I often end up leaving places or events or parties simply because I’m in pain or exhausted. Now I sort of just told myself to expect this, and I try not to get in my head about it. But it certainly is some thing that I have grieved.
Rebecca C Moderator & Contributor
<inline-mention username="Nicky Flikas" user-id="2484107"/> Since the end of the pandemic I've had so many different invitations and it's been exhausting and nerve-wracking trying to keep up. There are some I've accepted and some I've had to put to the side. As I read your experience above, I got a knot in my stomach - oh the anxiety - that comes with being chronically ill and accepting or taking on obligations. It's been hard for me to say YES I'll commit to going to. There have been some I've not shown up to. When this happens I send a card and apologize for not attending. No explaining just a "Sorry I missed out on the events. I viewed photos and it looks like I missed out on a wonderful time - congratulations!" Life can be hard to navigate but I try and put my health first. This illness is unpredictable and as such, I have to go with the flow, as you did by ending the night early. I am glad you attended the baptism, and that you have the support around you to help when choosing to attend events. Wishing you a life full of experiences and less pain and discomfort as time goes on. Best of wellness always - Rebecca (comm advc)
Julie Vallortigara Moderator & Contributor
<inline-mention username="Nicky Flikas" user-id="2484107"/> Hi, Yes that's difficult to face those invitations when we don't feel like it, when we don't know if we can make it, when we are not sure how long we will be able to stay....and having to explain why make everything worse for us. I hear you, I have been to events, mainly weddings when I was loaded on anti-inflammatories, relying on the alcohol to tone down my pain, asking guests if they had painkillers in their bags!! When I see my face on those pictures of parties, I do look ill!! I don't know how I managed these...I like so much the gatherings, the dancing bit, and the celebrations. I pushed myself but it was hard. This was before I started my treatment (biologics) and I am now lucky that this medication changed my life. I am not sure I would be able to push myself much these days, being older for a start, having a dog and so waking up early every day 😉 And I don't have a family to look after. All that to say to you come first Nicky and you know what you need. You are the one living with AxSpa so you can chose what's best for you. I think you are amazing, working and having a family and a husband, and managing it all with your condition! Well done you!! You keep going and look after yourself 😀 Take care, Julie.
James Hollens Moderator & Contributor
Hi <inline-mention username="Nicky Flikas" user-id="2484107"/> , I can relate to this so much! Although I can't imagine how much tougher it is for you balancing your family life as well so props to you for still getting out there despite how challenging I imagine it was! Nowadays I get a bit of anxiety whenever I receive an invite as well. It is impossible to know whether my body will be up for it when that day arrives. But whenever I tell that to people it always sounds like I am making an excuse in advance! I hope you were able to have a great time there and that it wasn't too hard on your body in the days that followed! Wishing you all the best, James (Community Member)

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