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!
- Blogging – Feeling 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.