Celebrations

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.

My Birthday

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!

Kaitlyn’s Graduation

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!

 

Friendship and Fibromyalgia

ftlfriendFriendship. As social beings, friendship is important to us. It’s the relationship you have with another person. It is likely that you have things in common with this person, or you have genuine affection for them. It is a thing that can bring joy and love, help you through things. Real friendship is such a beautiful thing. The picture above is a birthday present I received from my best friend. The third definition listed, probably won’t make much sense to people but it means so much to me. I guess it is a small insight into the relationship we have. It is all those small things, the memories made and that are treasured, that makes friendship so beautiful.

Friendship is important, it is such a valuable experience. However, if you have fibromyalgia it is so easy to lose friendships. Now don’t get me wrong I know sometimes friendships just fade naturally over time. Fibromyalgia tends to just speed up this process. Every time you get invited to something but you have to cancel, usually last minute, because your anxiety is so high that you can’t seem to get yourself over the threshold and out the house. Every single scenario running through your head of trouble looming, accidents happening, your outfit not being right, you’re too fat, the fear that people won’t like you, the fear that the place will be busy, having to talk to strangers. The list goes on and on. Having to cancel as your belly has just started doing flips and you know you are going to have to spend the night on the toilet instead. Having to cancel as you’re in so much pain that it feels like your limbs are being ripped off your body, it feels like a knife is stuck in your back or you legs have turned to lead and you can’t get one foot in front of another. Having to cancel as you are so exhausted that your eyes are stinging from being open. Or your head feels too heavy, your arms and legs are tingling. All of these ‘excuses’ can wedge itself between friends. Chronic pain can be so isolating, and sometimes sharing it with friends can be worse than keeping it to yourself. Fibromyalgia is difficult to understand, and with it being an invisible illness, you “don’t look sick” or you “look normal” and it is easy for a person to think you are “just putting it on/ faking it/ being dramatic” (really you can insert so many negative comments here, I have heard quite a few). It tends to be that when you cancel one outing, meet up, event then it is generally accepted. Having to cancel multiple times (which can happen) then the invites tend to stop coming, text messages/ emails/ phone calls decrease and the space and silence grows. It is so frustrating! I sometimes wish that my life could be recorded, that people could see the effort put into going out. That people can see how much I try to get out. How much I want to spend time with that/those people. How upset I am when I have to message or call to cancel. How disheartening it is that you cannot get out and do that thing that you wanted to do, and how debilitating symptoms can be. How can you explain that everyday life for me can feel like the flu – I am achy all over, I have no energy, I am so tired, my balance is all over the place. I don’t say this to people for them to feel sorry for me, I tell people in hope that they might understand. Sometimes people do try and understand, sometimes people just do not believe you.

I do not have very many friends, however those that I do have are golden. I am so blessed to say that I have important people in my life. I have those people who have a listening ear to hear my troubles, frustrations, hopes, fears, or thoughts (no matter how ridiculous some of them seem to be). They are there for me to vent at (and I rant alot) and sometimes they just listen, other times they offer advice depending on the situation. They offer a shoulder to cry on – both figuratively and often physically (again, this is something I tend to do a lot). They are there when I need a hug, when I am vulnerable, to celebrate and gentle hugs for bad pain days. They are there with words of encouragement and believe in you. In fact, I often call my best friend my personal cheerleader. She believes in me so much, and can pick me up when I’m down. She defends me (like by pushing drunk men who have fallen on me off of me at gigs, or telling random drunk men to get lost with a capital F and a capital O when they put their arms around me and sing in my face. When ex’s text the most horrible things and make you cry and she takes the phone off you and wipes away your tears and lets you enjoy the rest of your day instead of being bombarded with very negative messages), even if the person she is defending me against is myself (she says I am too hard on myself, she’s probably right). I am lucky that I have a friend who believes, and tells me that I deserve the world. I deserve good things and I deserve to be happy. I just hope that she knows that I hope and believe the same for her!

It is important to find people who support you and can understand you. They maybe do not completely “get it”, but they care and want to help. You want people that you don’t need to pretend to be “fine” with. When I went on holiday with my friend, she knew that I was going to find some parts challenging and be in pain. She also knew that I can be stubborn sometimes, and tend to try and keep going until I just can’t any longer. She asked me to let her know when I was in pain or anxious. She told me that if I tell her it means we can do something to try and help, such as go to a less busy part of the city, find a place to sit and rest, we can go find some painkillers. One of the days I forgot to bring painkillers with me in my bag and we had to go find a pharmacy which felt a bit like trying to work our way through a treasure hunt in places. She wanted me to enjoy my holiday too and not over exert myself to the point I stop enjoying myself or physically can’t do anything the rest of our time away. This is friendship! It meant so much to me that took so much time and consideration to make the holiday a great experience for both of us.

The people who you know you can share a rant, celebrate with, share some sort of ‘milestone’ or you can call or message at any time day or night are the people you want in your life. The people who will take the good and the bad together. The people who see you for who you are and not just your condition. In saying that, it means so much to me that I have the type of friends who say things like “I found this site and it said …. about fibromyalgia”, “I read that this might help, have you tried/ thought about it?” Although it saddens me that I have lost friends along the way, I am so glad that I have the friends that I have. If friendship and love was a currency, then I can honestly say I am very rich. I am so glad that I have people who are willing to try and feel through life with me.