So far this month there has been quite a few celebratory events occurring in my life. Just like everybody else I look forward to events worth celebrating. There is nothing better than gathering with loved ones to celebrate milestones, achievements, birthdays, anniversaries, anything really. Celebrating creates memories, which more often than not become life’s most precious moments. Although I look forward to celebrations there is a part of me that dreads them. I worry about how my body will react at occasions. Will my pain levels stay at a level that I can cope with? What are people going to think/say about me if I have to leave early, if I cry, if I get overly anxious? The stress from this alone can bring about some not very nice symptoms. It’s a difficult cycle of stress. Even with this feeling of dread, spending the time celebrating with my family and friends create precious memories to be treasured throughout life.
This year I wasn’t in a celebrating mood. It was my first birthday without my nana here, I am in the middle of a flare up and I was in constant pain. I am not one to usually freak out about age but I felt so exhausted and my pain was really bad that I felt old, add that to the phrase “turning a quarter of a century” I really was not in a celebrating mood.
My best friend, Claire, told me that I had to do something for my birthday. She said I deserved to celebrate. I’m so glad she insisted I do something to mark my birthday, as I ended up having a really nice few days. Yes, days! Plural!
On the night of my birthday Claire, my sister Kaitlyn and her boyfriend Connall and myself went out for dinner. Afterwards we came back home where Kaitlyn surprised me with a birthday cake. We all had a good laugh as she started singing ‘Happy Birthday’ and she accidentally blew the candles out. She just stopped, turned around and went and lit the candles again and started over while pretending that this was not a second attempt. Kaitlyn’s reaction is what made the moment so funny. Afterwards we all watched Moana and had a laugh and cry together. I was very sore and had to move about a lot whilst trying to get myself into a position that I had the least amount of pain. My movements were not helping in the slightest, however I was in the house and I was with my loved ones so it was ok not to be fully ok!
The next day I was treated out to lunch by my big cousin. I was only out a short time but I had a lovely time catching up. She seemed to know when I could not take much more and took me home. I had to go and lie down, as I was exhausted and in quite a bit of pain, for a while but I was glad that yet again, I had such a nice time with a loved one.
The day after that myself, Claire and my good friends Hazel and Cat met up and had dinner together. It was so good spending some quality time with them. It is not very often that we all get together. That day was difficult, after the last two days I was very tired. It felt like lightning bolts were being shot down my back. The girls were amazing, they understood that I was sore and they also took into consideration that I hadn’t been wanting to celebrate my birthday. The plan was dinner and cinema but the plans were flexible. They told me that the plan was all depending on how I was feeling. If I was too sore to go and sit through the cinema then we were not going to go to the cinema. It meant so much to me! Especially when earlier on that day I was messaging them that I couldn’t make it. I’m glad I went. I’m glad the girls were flexible and went with the flow, just feeling our way through the occasion with no set in stone plans.
The next night I went a walk with my other big cousin. He gave me my birthday gift and we had a good time walking and talking. He let me set the pace for the walk and nearing the end of the walk I was struggling and he linked arms with me and supported me right to my door.
All the gifts I got for my birthday were perfect. They were all about self care and activities that I enjoy, that I find calming. I really am lucky that I have the most considerate people in my life. They walk at my pace (no matter how slow that they find it), they seem to understand that I maybe cannot spend very long out with them before I have to leave, they understand that I may need some extra help while out or I may get emotional and still they stick by me!
This year has not been the easiest year for Kaitlyn. It was her honours year at uni so she already knew it was going to be quite tough. During this time, life seemed to just throw so much at her – hardships at work, getting a new job, going through a breakup, starting a new relationship, helping care for my nana, helping to care for me, the death of my nana. All of that is difficult in themselves without adding in being a fourth year student. However, she has managed to overcome everything and passed her course. This week she graduated. I could not have been any more proud of her. She looked absolutely beautiful! She picked an off the shoulder shirt and a classic straight skirt which was a fabulous combination. During the run up to her graduation day, she asked me if I was going to be ok at the graduation, she did not want me getting too sore. How amazing is my sister? I replied to her that I did not care how much pain I was in, I was going to be at her graduation no matter what. The graduation ceremony took place in a church. To get into the church there is a lot of stairs, and the pews are not exactly comfy. I was also rather ‘foggy’ that day. I accused my dad of moving my booklet with the graduation order when it was in fact me who had placed it where it was just minutes before. I was one very proud big sister hearing Kaitlyn’s name being called and watching her cross the platform to be capped and to get her hood and degree. A tear may have been shed…. Any pain I experienced that day was worth it! No way was my conditions taking away such an important event for my sister away!
After the graduation ceremony and reception we came home and all of us changed straight out of our formal clothes and into comfy clothes. Formal clothing was not designed for people in chronic pain. It’s heavy, and thick and it was such a relief to get it off (I was wearing a tailored dress). We all then went out to dinner together in comfort and then Kaitlyn and Connall went off as they had their own plans.
A work mate’s birthday
A girl I work with will be turning 21 in a few days. For the past month or so there has been a lot of secret chats discussing ideas of gifts and a night out was planned. I knew that the way my condition is at the moment that I would not survive a whole night, and I did not want to put a damper on any of the celebrations. So I said from the offset that I would only attend the dinner and not the ‘few drinks’ that would follow. The plan was that she would know that she was going out for dinner with a few people. Everybody else, myself included, had told her that we were unable to join her on a night out for one reason or another. Then when she came into the restaurant there would be a big bunch of us sitting there to surprise her. Somehow, the secret was kept and she was indeed surprised when she arrived at the restaurant. I was so glad to be part of celebrations for her birthday.
My tummy had not been very good that day. It had been making a lot of dangerous noises and doing flips all day. I was exhausted, showering took so much energy from me that I had to lie down a large chunk of the day until I really had to get ready. Despite this and the pain that I was in, I managed to get my hair to a fairly presentable state, put on a dress and I even managed to put my make-up on. I felt somewhat presentable when I left the house. I did not look so presentable when I came home. After the dinner I managed to walk, with some support from my team leader, from the restaurant to the first pub in their plan for the evening where Kaitlyn came to pick me up to take me home. When I got home I took a wee selfie, as you do, and it is shocking the amount I changed in not even being out the house for two whole hours. My make-up was a mess and smudged, I had massive bags under my eyes from being so fatigued (clearly not helped by the smudged eyeliner and mascara!). I thought I looked like I had been out all night drinking… All I did was go out for dinner! It was enough to take it out of me!
Fibromyalgia sucks! People see a young person, and they do not see anything “wrong” with me. People think you are being dramatic if you say you’re tired, or sore at my age. They don’t see the chronic pain and don’t understand the fatigue.
All this celebrating has taken its toll on me. I am so exhausted, I am walking funny, the pain I am has increased and I have had to spend a lot of time resting. However, through these celebrations, even if I was only able to go out and join in for a short while, I have had such a laugh and felt so much warmth from the people that I spent time with. Yes, it all made me anxious. Yes, it all gave me a lot of pain. Yes, it sucked a lot of energy from me and took a lot of effort. Yes, I was nearly cut short when needing the toilet. Yes, I had to leave celebrations early. Yes, I have had to spend a lot more time resting and I have had to spend time not being able to move. But do you know what? It has been worth it! I managed to help celebrate with my friends and family and that has been great!
If you have a ‘condition’ any kind of condition, visible or not, when occasions arise that should be celebrated, if you are able to get out to join in, GO! Attend that dinner, attend that pub, go and join in. Even if you can only go for a short while and have to leave early. Even if it looks like you will just be there fidgeting, when really you’re trying to find a position that your body is not screaming at you. Go and make those precious memories. However, if you cannot go, try and be kind to yourself! Do not beat yourself up about it. Send that message or make that call letting that loved one know that you love them but unfortunately can’t make it out but you hope that they enjoy their time. Hopefully they will understand, it is ok, not to be ok! After all, there is always time to celebrate some other way, some other time. Plus, you never know, the celebration might just end up spreading itself out over time just like my birthday did over various days!