Fibromyalgia Awareness Day 2018

Today is fibromyalgia awareness day. I’m posting a lot later than what I wanted to do today but I have had a busy day. I went to see an amazing wee play called Invisible today with my dad. It is written by Charlie Marx. It pretty much hits the nail on the head on what life with fibromyalgia is like. I felt quite emotional after watching it, it was so relatable. This story is so close to my own. It was educational, inspiring and hopeful. It made me feel hope. A feeling that I have been lacking a lot recently. I left the hall feeling valid, I felt that I was not a lone. I felt that I although I do not know what my future holds, it is worth finding out what it holds. I was reminded of the joy that life can bring and felt hope for my future. That changes could happen… For the better!

Fibromyalgia is common, and yet it is surprising how many people have never heard of it. I knew very little about it before I was diagnosed. When I say I knew very little about it, what I really mean is I knew a person who had it and I knew it caused pain. That was it! That was all I knew.

As you can see, fibromyalgia is a lot more than just pain. This is something that causes me a lot of health related anxiety. There are so many symptoms and effects. My fear is that I could have something else wrong with me and a health professional could just attribute it to the fact that I have fibromyalgia and not receive, or be able to manage it properly. I think that I have finally found a GP who listens to me and takes my condition seriously, but even he sometimes listens to what I’m saying and relates it to me having fibromyalgia instantly. I try to keep track of any new symptom, or any changes of symptoms. If you have new symptoms, you should tell a medical profession and get it checked!

Fibromyalgia symptoms can be anything from a mere irritation to debilitating. The severity of symptoms can vary from person to person. They can vary from day to day, hour to hour.

I think it is particularly important to remember that fibromyalgia does not discriminate by age! I am only 25, I have been having symptoms for years. I was a teenager when I started showing symptoms. In fact, there are times in childhood, that I remember having multiple appointments due to having ‘unexplained’ pain. I often wonder if this was the start of my troubles.

Despite fibromyalgia awareness day now coming to a close, it is important to continue to spread awareness.

Be kind to yourself, and other people. You don’t know what struggles people are going through. People are all just trying to feel their way through life!

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(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.