Walk in Water

A big part of having fibromyalgia is self care and self management. One thing I do to try and manage my symptoms is go walking through the swimming pool.

I had a limp when I walked for months. Somebody suggested to me that I should go swimming as it’s good for the joints. The problem is, I cannot swim. It’s something I always wanted to do but I have never been able to accomplish (it’s a work in progress). When I was younger I was nearly swimming but I got pulled under the water as a joke and I’ve pretty much had a fear about being in the pool since. It was then suggested to me that I should go to the pool but just go walking through it.

Now, due to the aforementioned fear, even the very thought of going to the swimming pool induced a lot of anxiety. One day I decided to go down and I walked through the pool. My biggest surprise that day was that I survived it. I could not walk very long through the pool. The fatigue hit me fast but I could get myself to the pool and out again without drowning! Since that day, I have continued going to the swimming pool at least once a week.

The water in the pool takes stress off of joints and makes it easier to walk. As well as this, the water also provides some resistance which helps make your muscles work. Water exercises are classed as low impact exercise. The movements you do in the pool does not have the same impact on the body as there would be doing it on land.

Some benefits of walking through the water include:

  • Muscle strength being improved.
  • Improved posture and balance
  • Greater movement and flexibility of joints
  • Improving general fitness levels
  • Eases stiff joints and sore muscles
  • Enhanced sense of wellbeing, better moods and hopefully better sleep.
  • Reduced pain and tiredness.

My progress is slow, very slow, but I am working on it. Like I have already mentioned, I believe it is walking through the pool that has improved my walking, however slight it may be. I have also been very lucky that I have had friends accompany me and walk through the pool with me, being my own personal cheerleaders and motivators. I still have a lot of anxiety regarding going to the pool but I am trying my best and that is all somebody can really do.

Walking through the pool is just one of the many things I have tried to self manage my fibromyalgia symptoms, just one of the activities that I am attempting in my journey of feeling through life.

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“What are your hobbies? What do you enjoy doing?”

“What are your hobbies? What do you enjoy to do?” These are questions that I have been asked a lot recently. Usually by a medical professional, scribbling down some notes or filling in some sort of medical assessment. I find it a really difficult question to answer. The answer is I don’t know. I really don’t remember. From experience, I can tell you people tend to look at you strangely if you give this answer, to what they deem simple questions.

For years now I have felt like I don’t know myself anymore. Truthfully, I don’t know if I have ever properly known myself. I guess as a twenty-something year old, it is now that I begin to know myself better. There are things that I used to like doing. There are things that I used to do. I just don’t really remember, or know, what they are. It is not just my diagnosis that has made me forget what I like doing, or hobbies. I don’t remember having hobbies for a long time now. I had exams at school then I went straight to university. While I attended university I worked. After I graduated I worked extra hours, or cared for my nana or had some appointment trying to find out my diagnosis. Then when I got injured, I found myself in so much pain, and so much less mobility I now cannot do activities and tasks at all.

I am now faced with a lot of spare time, as I am currently unfit for work. I don’t know what to do with my time. The most difficult version I was asked these questions, was when I was trying to set goals with the pain management physiotherapist. This was more difficult as the questions had an extra element to them. The physio wanted to know what I liked to do that we can set goals to build up to. I do not know what I want to build up to. I don’t know what I liked to do, I did not really have ‘me time’ to do things. Now I have too much time and I don’t know what I like doing, as well as not knowing what my body will do without screaming at me.

One thing I do know I like is spending time with friends! So this weekend, Hazel and I went to Comic Con. To be able to go, I made sure I had painkillers with me and I wore heat pads to try and dull down some of the pain. I have never attended Comic Con before. I have a bit of a fear of people dressed up. Well, if I can see the person’s face I am OK…. Unless that face is painted as a clown! Then I am ALWAYS afraid! I had a lot of worries when Hazel asked me if I wanted to go with her. However, I had a great time. There was so much things to see, that I didn’t know what to look at first.

Now, I am not saying that going to Comic Con is a ‘hobby’ I have. I did enjoy myself that day though, and it is something that I would attend again! Trying new things can be a great time. Exploring new activities means that you might find something you enjoy doing, or find new hobbies. Even if you know how you like to spend your time, finding new activities contribute to your growth and development.

Right now, I am telling myself that it is ok that I do not know what I like to do. It means that I can, hopefully, have fun as I explore options and find out, while getting to know myself. I am still fairly young, it is ok not to know myself completely. Everybody is just trying to feel their way through life anyway – I am no different.

(The End of) Fibromyalgia Awareness Week 2017

Today marks the ends of Fibromyalgia Awareness Week 2017. It’s been a fairly difficult week symptom wise for me but I like to think that I may have spread some awareness, even if it was just the guy from the local shop across the road since I spoke to him a wee bit more coherently than some of the conversations I have had. I like to think, even if the brain fog was bad people were able to see the effects that it can have on daily life. Even though it is the end of Fibromyalgia Awareness Week that does not mean that spreading awareness should just stop. Keep that conversation going! 

Continuing on from last post, here is the points from the 7th – the 10th….

Something that helps you manage fibromyalgia

Truthfully I have not found anything that fully helps me manage my fibromyalgia. There are a few different things that I do to try and help myself. I am still in my first year of being officially diagnosed. I am just newly on my journey. There are many products and ideas out there for me to try… The thing with fibromyalgia is what works for one person may not work for another… and the only way that you are going to know if something works for you is giving it a go!

  • Yoga/Pilates class – This class was suggested to me as it is gentle and the teacher gives you options and can adapt moves for you. This is a weekly class and my cousin Emma, comes with me to it. Part of the class is relaxation. I am just doing what I can do, which is not a lot at this moment in time. In fact, quite a lot of it is me just lying down listening to the music, just breathing.
  • Walking through the swimming pool – I can not swim, and going to the pool increases my anxiety. However, I do believe that walking through the pool has been helping me. I got injured in work in February and since then I have had a bad limp. Since I have started walking through the pool, the limp comes and goes… I know this does not seem like much but I was constantly limping for three whole months! Now I just limp most of the time. I am taking victories where I can and this is definitely one! I can only walk through the pool for 10-15 minutes before the fatigue becomes too much, and I need to leave the pool so that I have some energy for the showers, getting dressed and getting home but I am trying. The pain physio nurse has also given me some exercises to do in the pool too. The exercises themselves are quite gentle and simple but they make me so very tired… and I can not do many of the movements. But I am working on it!
  • BloggingFeeling Through Life. I started this blog to sort some of my thoughts, to share my experiences and to hopefully spread some awareness. There is something therapeutic in writing this, so thank you to anybody reading this. Plus in typing everything out here I tend to moan less at my family, which can only be a good thing!
  • Colouring in – adult colouring in books are a bit of a trend at the moment and has been for the last wee while. I have always loved colouring in, I even coloured in before the adult colouring in books became a ‘thing’. I find that it calms me down and keeps me busy. The only problem now is quite often I get a bit ‘wobbly’ (I shake) and I tend to go out the lines sometimes which I really hate but it has not put me off colouring in. I think it is good for creativity, it is good for seeing details, good for distracting!
  • Reading or watching movies, TV shows etc – watching movies or TV programmes or reading is a good way to get lost in a different world. It is great escaping from this reality into a different world, a different time or different situations.
  • Heat – I use hot water bottles and heat pads a lot! It’s a bit of a hard one really though, sometimes heat helps and other times I feel hot water bottles and heat pads are too warm and feel like they are burning me. I like cosy socks and blankets. I like to wrap a duvvet around me. I like to cocoon and form that protective layer around me. Maybe I am living in the hope that one day I will metamorphosize in my cocoon and emerge a beautiful butterfly?
  • Write things down and tell my sister – I write a lot of information down in the hope that it will sink in and I will remember it. I have notes everywhere. I tend to type them down in my phone too. A problem I have from time to time is I forget what the note means, which is not ideal. This is why I tend to tell Kaitlyn, in the hope that she might remember.
  • Listening to my body – I try and listen to what my body is telling me. Not going to lie about it, I am not very good at it sometimes. I have a tendency to push myself too much and suffer for it. It is a thing I am hoping, that as my journey progresses, I may become better at. I think this may be key to managing my fibromyalgia.

These are just a few examples of the things that I do to manage my fibromyalgia. This is by no means the only things that I try and there will be many different things out there for me to try and manage my fibromyalgia but the above is just a few that I have seen helping me manage symptoms at the moment. If anybody has any suggestions then please do send them my way.

I also have medication prescribed to me from the doctor to try and help me manage my fibromyalgia. I am still going through the process of seeing what medication works for me.

Something that you know now that you wish you had known at diagnosis

At diagnosis I wish I knew that there was different options of treatment and it was a trial and error method in finding what works for you. When I was diagnosed, I felt I was given a diagnosis, got a wee booklet about fibromyalgia and sent away to deal with it. I hardly knew a thing about it. It is a condition that needs a lot more research. Everything is quite vague, guidelines have phrases like, “In some cases, exercise is found to improve fibromyalgia symptoms…. Some find that exercise exacerbates symptoms.”

I also wish that I knew that fibromyalgia is more common than I thought.

Most of all, and I guess this feeling started before diagnosis, I wish I knew how much this diagnosis affects life. It affects every aspect of life.

Something that you are proud of

I am quite proud of this blog. I have had some messages and comments about it that give me a warm, fuzzy kind of feeling. They make me feel like I am still able to do something. I am able to complete a task. On a daily basis, there are so many tasks that I cannot do or cannot complete. This blog is keeping my mind going. It is keeping me thinking. It has me setting myself deadlines and goals and achieving them. My goal is to post every Sunday, there has only been one Sunday I did not post but I posted on the Monday instead. This week, I have even posted twice! Achievement!

Something you are grateful for

I am grateful for my friends and family! I am so lucky to have such good people in my life and be surrounded by such love. They inspire me to try and become a better person. They remind me that I am not alone, I am loved and I am wanted. They encourage me to keep on trying – through my health journey but also through life in general. I am so blessed that I have people who believe in me and love me.

Fibromyalgia Awareness Week 2017

Fibromyalgia Action UK (FMA UK) has set this ‘photo challenge’ for Fibromyalgia Awareness Week 2017. I am really bad for seeing a social media challenge and adding my own spin to it. I think deep down I think I’m a rebel! So in this fashion, I have decided to do a blog post instead of photos. What I have decided to do is take each day as a topic. Today, I will cover the points from the 3rd – 6th and on Sunday (my normal posting day) I will cover the points from the 7th – 10th.

Your diagnosis

I was formally diagnosed after a long time, after a very long time, on 23rd December 2016. I remember this date very well because I was in a bad mood having to go to the hospital so close to Christmas. My cousin, Donald, came with me to the appointment and waited for me in the waiting room. I was so nervous. I hate going to the hospital. I was so worried about what was going to be said, what was going to happen. My GP had said that he thought I had fibromyalgia so was going to refer me to a rheumatologist. So the consultant officially diagnosed me with fibromyalgia. I had very mixed feelings that day about my diagnosis. Truthfully, I continue to have very mixed feelings about my diagnosis. I was relieved that I finally had a ‘label’ for what was going on with me. It felt like I had been going to the GP to no avail for a million years. It took a lot of visits to the GP, a lot of blood tests, a lot of getting told “it was just stress”/ “it’s just anxiety”/ “it’s all in your head” (Disclaimer: No GP told me “it was all in my head”, it just felt that way), a bunch of increasing tablets, some counselling, a lot of tears, a lot of moaning and a change of GP to even feel that I was being taken seriously. I was worried about what this diagnosis meant for me and means for my life. I know there is no cure. I know it’s about “treating the symptoms” but what does that mean for my quality of life? Am I going to have a good working life? Am I going to be able to keep working? Is this going to continue to affect family and friendships? Am I going to have a social life? All important questions! All I really know is, I am on a journey, and I may not find all the answers out, but I just have to keep trying and keep going forward.

 

What it’s like to have an invisible illness

What’s it like to have an invisible illness? It’s a pain! No pun intended. You have so many changes and feelings, both emotionally and physically, going on within your body and nobody seems to acknowledge it. You get so tired that you can’t even shower without having to have a lie down and you just get labelled lazy. You have so much pain, that sometimes you can’t move. Sometimes you are physically sick with the amount of pain you are in or you burst into tears. Of course this goes on behind closed doors and people think you are being a “drama queen” and exaggerating. Since people can’t look at you and physically see something wrong with you, it is just assumed that you are “fine”.

 

What you’d like people to be more aware of

I would like people to be more aware of invisible illnesses in general, not just of fibromyalgia. It would be a lot easier if people just kept in mind that they do not know what is going on in a person’s life. That person may be struggling and just need some support, a little bit of kindness shown to them.

Also, I would like people to be aware that fibromyalgia affects everybody differently. It affects me totally different than how it affects ‘Julie’s sister’s boyfriend’s mum’s colleague!’ Seriously! The amount of times I have heard something like that is ridiculous. Asking something like “[insert name here] can do a, b and c…why can’t you?” is soul destroying. That person is only going to replay this question over and over again and beat themselves up over it! However, what can be helpful is saying what works for another person and suggesting it as something to potentially try or consider.

 

Your support network

I am lucky when it comes to my support network. I have lost friendships as a result of this condition and I may not be as close to some family members as I would like to but those I do have close to me are amazing!

Kaitlyn (my sister) for example, can do everything for me some days. I’m talking making sure I’m washed, dressed and have had my medication and something to eat. Not just saying “Sarah, get dressed”, but actually physically helping me put clothes on. She tries to arrange shifts at her work so that she is available to take me to appointments. She is my organiser, she reminds me of phone calls I need to make, things I have to do, appointments needing made, when to take my pills. Everything really. I am also particularly close to Donald and his fiance Laura. Donald lives around the corner from me and the amount of times I have just appeared at his door in tears is too many to count! He is very good at comforting me, while letting me get it all out. He makes a cup of tea, gives me a hug and listens to my worries, my pains, my feelings and reminds me that I’m going to be ok. Laura, always reminds me that I am not alone and that she is only a call, text, message away. In that respect I am very lucky. My friends, too, are always reminding me that I am not alone and are only a message away. My friends are amazing, they arrange things in such a way that I can participate in it. That might be them taking their car, and insist to pick me up and take me to the event and bring me back home. They stand at the back of gigs or find seats so that I can sit or at least have something to lean on. They have left gigs early with me. In fact, Hazel has left many gigs early with me because I have not been able to cope. Claire has stopped exploring Berlin with me when we were on holiday so that we could search for a pharmacy instead because I needed painkillers. My friends are there for my tears and they listen.

I am very lucky to have such an amazing support network. I really hope that they all know just how much I appreciate them and the things they do for me. I really hope they know that I love them and I am sorry that I share so much details with them, too much details in a lot of cases, but by doing so they have helped settle me in one form or another.

Ambivist and We Band of Others Behind The Scene Photo Shoot and Band Practice

So I’ve been wanting to write about both We Band of Others and Ambivist for some time… Then something exciting happened and I got invited to a local recording studio where the Ambivist guys played and modelled We Band of Others clothing. It was a great day!

 

We Band of Others

We Band of Others is an independent clothing brand that is based in Glasgow. They get inspiration for their designs from music. They have “..created this brand for the “Oddballs of Society”, for anyone who feels like they don’t fit in or feel cast out from society for not following the norms and daring to be different.” They strive to empower people to be themselves, embrace their differences, believe in themselves and reach for their dreams.

I cannot stress enough how important something like this is! People are ‘cast out’ of society for the slightest difference all the time. Bullying occurs in schools as people’s differences are pointed out. Labels are often given to people for being different – geek, freak, weirdo and there are loads more. In a world full of peer pressure and ‘following’ people, somehow standing out has became a bad thing. Empowering people, saying it is ok to be yourself, saying that you matter – these are all important values. Monday is ‘Motivation Monday.’ Who doesn’t need a bit of motivation, especially on a Monday? On top of that, they are reminding people that they are not alone and have created a wee community. Scrolling through their instagram feed you come across many pictures of people showing off their purchases, saying why it’s important to them, saying “yes I am an Oddball of Society, and I am proud to be one!” In fact, if you scroll through their instagram you come across the picture above of me doing just that!

When I went onto the We Band of Others’ website I fell in love with their tee shirts, and I could not decide which one to buy, so I purchased two. I wear these tees a lot! They are soft and so comfortable. I mean, a comfy tee with an inspiring or empowering message, can you go wrong wearing that? I think not! Also, you get free badges and stickers with every order! How fun is that? Plus, they’re free. Everybody loves a wee freebie! Details on how to check out this amazing brand are below! You never know, you could make a purchase and take your own selfie standing proud to be an Oddball of Society and be featured on their site.

Website: https://www.webandofothers.com/

Facebook: https://www.facebook.com/webandofothers/

Instagram: https://www.instagram.com/webandofothers/

Ambivist

Ambivist are a progressive rock band from the Ayrshire in Scotland. The band consists of four band members – Sean (guitarist/vocalist), Michael (drums), Paul (bass) and Ross (guitarist).

I managed to get myself to a gig one night that I knew Ambivist were playing despite being in a lot of pain, and boy was I glad I managed to catch them! Unfortunately I was not able to stay the whole gig that night but I saw the whole Ambivist set. They were brilliant! The four guys sync to produce the most wonderful sound. Sean, has a great voice. It has a really nice tone, which is quite deep and has a touch of that fantastic quality that I like to call a ‘gravelly voice’. On top of that he produces sounds that are smooth, and can evoke emotions. I felt their performance! The music, the lyrics, their performance just spoke to me. It made me feel, a lot. It made a girl who had been crying about the amount of pain she was in and was finding moving at all very difficult forget the pain for a short while and just feel the power of the music. That kind of experience is priceless.

I have included the social media details of this amazing band below so that you can check them out!

Facebook: https://www.facebook.com/Ambivist/ 

Instagram: https://www.instagram.com/ambivistband/

Twitter: https://twitter.com/ambivistband

 

The Photo Shoot and Band Practice

So as I said at the start, something very exciting happened, I was invited to shadow the team at We Band of Others and attended a band practice of Ambivist, turn photography shoot. The whole experience was great!

We Band of Others attended a gig in their local area that Ambivist were performing at. We Band of Others enjoyed the band and their performance and took to their Instagram account and shared a picture of the band performing. This started a dialogue between the musicians and the clothing brand.

Speaking to the photographer, I found out that the vision behind the shoot was to have the band model the tees, including their new summer merchandise which included a snap back hat, while the guys performed/practice. The photographer explained that she felt that if she asked the band members to pose with their instruments then the pictures would develop looking forced. The very essence of We Band of Others is for people to embrace their differences and their quirks and believe in themselves and just to be yourself. The idea was that if the band were just doing their thing, doing what they love, just being themselves then the pictures would look natural.

We all met at a local recording studio and I got to meet all the band members. After some chat everybody went to set up. The photographer set up her camera and the band set up the equipment, plugging everything in and doing sound checks. I also got a pedal board explained to me. I am not going to even pretend I know what each setting did but Sean explained some of the pedals to us. Listening to him talk and do wee demonstrations to show what he meant was fascinating. I have always loved music. I have even performed music, many times when I was younger. I have never before had an insight to a pedal board and what each pedal did. This has given me a new appreciation for musicians. They get up on that stage, in front of however many people, they have those burning lights on them, they might even have effects such as dry ice about, they have lots of wires surrounding them and still manage to perform. Even while having songs needing certain switches set to on or off. It is just astounding.

Another insight I got to see was the photographer setting up her camera. Again, like the pedal board I am not going to even attempt knowing anything that she was doing. My photography skills go as far as turning the camera on, trying to get my body to hold still, press the capture button and hope for the best. Never have I changed brightness levels and focuses and all sorts of different settings. It was interesting to see and it is a skill that I wish I possessed, however it is not my forte.

I was made to feel very welcome in that room, I felt like I was just one of the gang. The band and the clothing brand team gave me permission to take photos too, which was exciting. It was so cool seeing the band all wearing We Band of Others tees and have buttons and stickers on their guitars, guitar straps and even on the drummer’s cymbal!

The band asked the photographer what she would like them to do, she told them that they could play and she would take pictures through it. This was such a funny moment, that will stick with me for a long time. The photographer said “play whatever you want” and the Ross started playing Mary Had A Little Lamb. After that everything went really smoothly. The band did their job and the photographer did hers. What was really great, was you could tell that each person in that room loved doing what they were doing. The band were having a “jam session” and rehearsed songs, parts of songs or just had a bit of fun. This was a great experience, it was an intimate insight to a rehearsal. I ended up treating it a bit like a private performance though.The photographer snapped all of this. She had sent me a few photos as a sneak peaks and they look great. I have no doubt that the rest of the pictures will look just as great. Some pictures are now live and featured on the We Band of Others website.

In all of the goodness, of course I had my struggles. I was meeting people I didn’t really know which is something that causes my anxiety to rise. The flashing of the camera and the loudness of the playing through the amps and microphones, and the drum set did send me into a sort of sensory overload daze for a bit. Symptoms of Fibromyalgia and anxiety can be triggered or made worse by situations and the environment that you are in. That being said, I really enjoyed the experience and for some amount of time, I was able to stay in control of my body. I was able to feel the buzz of being honoured in being present at a band practice and wee photo shoot. I have so much admiration and respect for everybody who was in that room and they were all super talented individuals.

 

All photos included were taken by myself and as I said, it’s not my forte, I just love taking pictures. This sure was an awesome experience and I would like to thank We Band of Others, and the guys of Ambivist for inviting me to come along!

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.