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.

Lady Gaga announced she has fibromyalgia…

Lady Gaga has a documentary coming out on Netflix this month which features her battle with chronic illness. This week she announced that she has fibromyalgia.

When I hear of anybody with fibromyalgia, I feel for them. As somebody who experiences the pain and hardships on a daily basis I can empathise how bad their battles may be. Fibromyalgia can affect everybody differently, and can affect your life differently from a day to day basis. This makes it hard to treat, hard to manage.

I am interested in watching the documentary being released later this month. I think it will be interesting to see how fibromyalgia is portrayed on the film. I recently watched a television programme that had fibromyalgia featured and I do not think it was featured well. It started off well but did not show the multiple battles, or different treatment types that may work. It made treatment seem like a “one size fits all” idea, and that is definitely not the case. It would be great if there was a treatment out there that would definitely work for everybody however that is not the case.

Lady Gaga works hard for her performances. She does a lot of singing and dancing. I worry that people will see that she has fibromyalgia and still performs so could potentially alienate people who suffer from it. I know for a fact that there is no way that I could put on a show like Lady Gaga! I can’t even go shopping for twenty minutes without crying. I can’t even shower without having a lie down afterwards. Already, I get told things like ‘[insert name here] has fibromyalgia and they can [insert activity here].’ I can already hear Lady Gaga being used as a potential example – “Lady Gaga has fibromyalgia and she can still work/perform.” It can be hard for people to see how debilitating fibromyalgia can be, especially when it is an invisible illness. Also, Lady Gaga will have access to different, and potentially more, treatments to try.

That being said, a famous person speaking out about fibromyalgia will definitely spread awareness. Her announcement has started so many conversations and that is very important. It has put fibromyalgia in the spotlight and shared information about it to people who may not have heard of it. For some people, it has brought about hope. It is a reminder that they are not alone in their battles.

Fibromyalgia does not discriminate, it affects people from all walks of life.

(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!