Time To Talk

It has been a while since I have posted. I have been struggling over the last few weeks. Although today (a Thursday) is not the usual day I post (a Sunday) I felt it would be a good day to upload something as it is Time to talk day. Time to talk day is part of the time to change initiative aiming to end stigma that surrounds mental health.

Talking about mental health is important. Starting a conversation with a person can have a huge impact. Starting a conversation with a person can be a step towards spreading awareness or ending stigma. More importantly, it benefits the person you are listening to. There is some truth in the old saying, “a problem shared is a problem halved.” Starting a conversation can change a person’s whole world. That might sound like an exaggeration, but the smallest thing can make the biggest changes. Talking to a person about mental health can remind them that they are not alone, it can give them a new perspective, it could potentially give them reasons to live.

I used to hold in my feelings, bottle them up. I didn’t like talking to people about my ‘problems’. I have people in my family that encourage not telling people personal business. I’m sure the saying is something like, “you don’t want to air dirty underwear”, that has been passed around. Not only that, but the advice tends to be “just get on with it.”

 

I have learned that bottling up my feelings is not good for me. Pressure builds and as an outcome, I break. I think this is why I am fairly open about what is going on in my life now.

Don’t get me wrong, there is a lot that has happened in my life that is too painful to talk about at times. There are things that I do not want to talk about or don’t feel ready to talk about. All that being said, mental health is a thing that I fully believe should be spoken about. I know it’s hard. I know it’s hard to open up. I know the physical pain that can be felt from talking about things that you’ve pushed down deep. I know the confusion of trying to put feelings into words. I know the shame that can be felt from thoughts you have, reactions you have or the physical signs of what is going on.

However, I know I have people in my life who I can talk to. I know the people I can contact and talk to about anything, with no judgement only love and support. They might not fully understand what I am going through or what I am feeling, but they remind me I am not alone. They remind me of the good in the world and they provide me with hope. Hope that things can change. Hope that this feeling is not going to last forever. Hope for the future.

Find more information about the time to change campaign at https://www.time-to-change.org.uk/

Advertisements

Tips For Appointments 

If you have a chronic health condition or are being tested for one chances are you have umpteen different appointments. Sometimes you have so many that it’s difficult to know who you are seeing, when and what for. Below are a few tips that that could hopefully help.
Make a note of the time, date and location somewhere that you regularly look

If you are attending different appointments and having various tests and/or check ups then it is important to try and keep on top of them. It is important as it means that you are up to date and have some kind of idea of what is happening with your body. Having any sort of idea of what is happening with your body can feel rare when you have a chronic condition, especially if there is little known about it. Also, often if you miss an appointment you can get removed from waiting lists which means you need to go through the stress of getting referred again to go back on the waiting list.

If you have multiple appointments or even if you can be a bit forgetful or get things confused it is good to have your appointment written out somewhere as a reminder. I recommend having a reminder somewhere that you see a lot. I have my appointments on the calendar and saved in my phone calendar. I check my phone calendar on a daily basis. I find writing it on the calendar helpful as the whole household know about my appointment so someone is likely to mention it too.
Have a plan on how to get there

I struggle a lot with making plans for journeys. I have no real perception of time of distances. I have help with my appointments. My sister accompanies me to a lot of appointments. If she can not come with me she drops me off. Other family members and my best friend have done the same for me. If I have to go myself, I always ask for help on deciding when I should leave the house, letting them estimate distances and journey times. I do that no matter how I am travelling to the appointment. It doesn’t matter if I am going to be walking, driving, getting a train or getting a bus, I am asking somebody else to help me make some kind of arrangement to get to the appointment.
Have somebody with you

If it is possible it can be useful having a person with you to support you at your appointment. It means that somebody is there to witness what is being said which is useful if you are likely to forget or if you have fear surrounding that appointment. Some places will help try and arrange someone to come in with you if you have to go yourself eg. If you tell my doctors surgery when you book in that you need somebody in your appointment to support you they will arrange for a staff member to come in to your appointment with you.

As I have already said above I have been accompanied to appointments by a few different family and friends.
Make a list

It is my experience that when you attend an appointment so much is spoken about that it is easy to not say everything you wanted to say. An easy way to fix this is to write a list and then you have a physical reminder with you of topics you want to bring up. When I have a doctors appointment my sister sits with me and will write out a list with me with everything I want to tell the doctor. This list will have everything from symptoms, reactions to medication, when appointments with consultants are scheduled for listed. In fact, she has titled a list “Sarah’s Issues” that she wrote out for me to take to a doctors appointment. I have found myself at appointments and just handing over the list for the medical professional to read through straight away. It gives me more peace of mind knowing that I am telling the doctor everything I wanted to tell him.
Have important information written down 

If you are in an appointment yourself it can be useful to get the person to write down important information or instructions that you should remember down. It especially helps when you are attending an appointment that you are given a lot of information.
Tell people about it or write it down

It is useful to write down a short summary of what happened at your appointment. I’m not saying write a fully essay on it or anything! Just a short summary, even if it’s just a short sentence. It makes it easier when discussing treatments with other medical teams or if you are applying for benefits.

Likewise, I also do not mean to tell everybody about your medical business. Tell your partner, friend, anybody of your choosing how you got on. It is good for the person who cares about you to know how you are doing. Also it is nice knowing that you are not alone through it all.

For me, I have a tendency to overshare. However, it is usually with people that I trust and I want to know how my health is and how it is affecting me (I only use the word ‘usually’ here as I do make this blog quite personal so could possibly overshare). Having loved ones know about my health makes me feel less alone and it makes me feel like somebody cares (which is important, especially with an invisible condition). Also, I know that if something serious was to happen to me or I had to be hospitalised somebody would be able to give a rough account of what has been happening health wise in my life. This is something I worry about a lot and it might not be the cheeriest thought but it puts my mind at ease knowing that somebody else knows.

This short list is just a few things that I find helpful regarding appointments, and I’m sure there’s many more tips out there. Feel free to leave a comment or any tips that you might have.

No New Year New Me

It’s the start of January 2018. January is a month that people tend to start things – diets, plans, projects. A lot of the time its “New Year, New Me” that you hear being called out, everywhere.


Now I’m not saying I’m perfect, or don’t need to make changes in my life or lifestyle. That is the furthest thing from the truth. I just don’t buy into the “New Year New Me” ideology.


I understand it’s a new year. I understand that there’s already a mark of something new. I understand that the year ending and a new one beginning tends to make people reflect upon themselves, their year and their life. I just don’t think that the ‘old’ you disappears and you become this ‘new’ self. I think that you learn something new, try something new or make a change and then work through the potential challenges. I also think these changes become part of you rather than a full makeover.


The usual kind of resolutions are:

  • Go to the gym more/ Do more exercise

  • Eat less sugar/fatty food

  • Procrastinate less

  • Find a partner

  • To have our life sorted out

This is only a very small example of the usual kind of resolutions that people make. By the end of January new year resolutions have usually ‘failed’ or been forgotten about, usually until the year is ending and they are recycled again for the following year. It’s stressful.


I’ve said before that I am sure that everybody is just trying to feel their way through life and I still stand by that. I think these changes can be made at any time and not just new year and these changes and experience become part of you or play a part in making you who you are, and not magically turn you into a new person. I think that these changes are part of your growth and self development as a person. That being said I understand why, to a degree, that the phrase “New Year, New Me” is used. If people don’t like something about themselves or want to change something about themselves then they want it to disappear or instantly become different.


If I had to have a new year’s resolution, I guess it this:

I would like to continue on my journey of self development and growth. I would like to have a year full of love and laughter with my nearest and dearest and maintain my current relationships. I want to keep trying. I want to keep trying to see the good and positive aspects in situations, in people and in life.


The idea of completely changing myself is appealing in some ways but realistically I know that it’s not going to happen. All I can do is keep on. Keep on trying and keep on feeling my way through life.


*picture credit: I found the image on Google

The Force Is With Us…

On Thursday I went to the cinema to see Star Wars: The Last Jedi with two of my closest friends. It was such a lovely night, I had not seen my friends in a wee while so it was good spending some quality time together, having dinner, having a catch-up and going to the cinema to see the new Star Wars movie! * I do not think I am going to give any spoilers away but there could potentially be some ahead.* What I can say about it, is that the three of us enjoyed it, a lot! It had us talking about it long after the film had ended. It also had me thinking about it for quite a while.

While watching it, I could feel myself relating to feelings and events portrayed in the film. I found myself thinking a lot about some of the messages from the film, and they are important. Surprisingly, I felt I could relate to some of the messages as a person who has a chronic condition.

First, there is The Force. I like the idea that the force is an energy that keeps the balance. In my head, probably wrongly, I relate it a lot to “The Circle of Life” from the Lion King. I tend to think of it as a bit of a moral compass of sorts. The force has two divisions – The Light and The Dark Side. I think of these with how we interact with others and the world around us. The light and dark side are basically like “Good” (light) and “Bad” (dark side). There are characters throughout the Star Wars Saga that are portrayed as having “conflict” going on in them. The character has light and dark seen in them. I think that this is true to life. Everybody has good and bad in them, it is the choices that we make, the interactions that we have which effectively put us into the “good” and “bad” categories. Everybody has temptations. Every Star Wars movie has times that it looks like even the characters that are so dark and evil can have moments of redemption. Likewise, the characters that are good can make mistakes and do wrong.

One lesson in this movie that particularly spoke to me was that it is ok to fail. You may make a mistake or things may not go as you would like it to, but that is ok. Failure is part of your journey through life. That failure is a lesson and it is what is learned from it that is important. Plus it is how you are going to become wise!

As a person that struggles with anxiety there was a line that resonated, “There’s a thing inside me that has always been there but now it’s awake and I need help.” I think this quote could resonate with anybody struggling with mental health or chronic health condition. Sometimes it is not clear what is going on, but you know there is something. It is that feeling that you know something is wrong but you just cannot put your finger on what it is. For a while, before I got my diagnosis of fibromyalgia I knew that something was not right, but it took a long time to get that diagnosis. With a long time of people doubting that there was anything wrong at all. The important part is “…and I need help.” It can be hard to ask for help when you are struggling with a health condition, particularly if it is related to your mental health due to the stigma that is still attached, even today, to mental health conditions. Everybody needs help sometimes, and it is ok to ask for it. Asking for help shows strength and courage. Recognising that you need help is a strength. Furthermore, there is a moment in the film where the phrase “Just breathe” is used. The phrase works well in the film, it is a reminder to stay grounded in the moment. Take a moment to breathe and to see and feel what is going on around you.

Another line that I could relate to is when Rey says, “I need someone to show me my place in all this.” (Not a spoiler in any way as it is in the official trailer). Anybody can be lost at any point in their lives. These days I tend to speak about life as a journey. It would be great if somebody could just sit us down and tell us exactly what is going to happen, who we are going to be and what to expect from life. But it doesn’t work that way! You need to go through things. You need to make the mistakes, meet the different people, try different things! You need to find what works for you and what doesn’t. It is all part of your own personal development and growth and there is, unfortunately, no shortcut for that. Ironically, there are times when you are the most lost and feel you need the most help and it is actually you who teach the best lesson, who shows other people the way, help them learn something about themselves.

Love and friendship are themes that run throughout the galaxy of star wars. It seemed to be much stronger in this film. It is not the quantity of friends that you have, it is the quality. Love and friendship are so important in life. Treat people with respect, help other people, make sacrifices for love. Let people know that you need them, that you love them. Love and friendship are what gets us through the hard times, the dark times. Love and friendship are what saves people.

Self care awareness week

This past week, the 13th – 19th of October, it has been self-care awareness week. In some ways, it feels a bit redundant posting about it on its last day. However, I think it is important to raise awareness, even on the last day of national awareness raising weeks!

Self-care is about looking after yourself. It is about eating a healthy balanced diet, exercising and looking after your mental health and well being. It is about learning when, and how, you can take care of yourself, when a pharmacist could help and when to get advice from a healthcare professional. Self-care is important when you have a chronic condition, it helps to understand your condition and learn how to live with it. Being able to self-care offers empowerment and allows people to play an active part in their own health and well-being care. Self-care is not an idea that is around just for a week annually! Self-care is for every day! Self-care is for life!

The self-care forum is a good place to get support and resources to help give you ideas on how to self-care. It is particularly good as it offers material on physical health and mental health.

Self-care is easy to do, but it is easy to forget about it. I know, sounds like such a crazy statement but it is true! In today’s world it is easy to be overworked, be distracted by all the technology out there and it is so easy to grab fast food, easy to binge eat, binge drink. As well as all of that, it is so easy to isolate yourself from people, to push people you care about away, not see your friends and family. If you have a chronic condition it is easy to give in to it. My papa calls it “lying down to it”. I know the difficulties, it is all struggles I have myself. It is easy to lose yourself in all of this, to lose feeling good about yourself, to know your own worth. Small things like making sure you eat a balanced diet, drinking water throughout the day, doing activities can all help. Thirty minutes of activity a day is enough to help keep a person healthy.

Incidentally, Monday of this week (13th November) was national kindness day. Being kind is another important factor in life that should not be kept for one day a year! Kindness should be shared every day. If every person showed a little bit of kindness a day the world would be a much better place. All you need to do is look at news coverage (whatever way you do that – social media, watching the news, reading the newspapers, listening to the radio) and you can instantly see that the world would not go wrong with some kindness shared! I cannot fathom how some people think it is ok to treat people the way that so many of us are treated. On Monday I witnessed a person a bumping my car! Luckily nobody was harmed and there is little damage done, but it is stressful when things like that happen. We did everything as we should – swap details etc and we sorted everything out. The woman has thanked me for being nice about the situation. On the one hand, I fully appreciate that the woman has thanked me for being nice to her, and I do understand that situations like this are stressful and difficult but it makes me sad that she felt she needed to thank me for it. I did not react the way I did because it was national kindness day, I just treated the woman like a fellow human being! Me overacting would not have changed anything. The woman was upset and embarrassed enough that she hit my car, she did not need me making her feel any worse. Being kind increases good, positive feelings in yourself and other people.

So this past week I have increased my water intake and I have tried to be active for at least 30 minutes a day. I have tried going for walks to keep physical but also to get me out the house for a while. I like going outside and taking pictures of things I like or find interesting. They often look awful, I am definitely no photographer, but I like doing it. I got new duvvet set and my bed was changed. That feeling of getting into a fresh, clean bed is unbeatable. Another activity I have been up to this week, is I have been giving knitting a go again. I took the small amount I had kind of managed out and I started again. It is not neat but I am doing it myself and I think I know what it is I am doing now. It is just putting it into practice! I am going to keep at it this time.

After all, “practice makes perfect.” This has been difficult for me. My nana was amazing at knitting and it is something I have always wanted to do but have never been able to pick up. The last time I started this project my nana was still alive and she was just mystified at my progress.

Things were happening that I had no idea how they happened – holes were appearing, I was adding stitches, I somehow managed to take all the stitches off the needles. We laughed so hard at my attempts we cried at times. I feel like it is important for me to master knitting now though, I think it will be beneficial for my grieving process. I feel quite proud that I have been able to start again and I think I am actually getting it now. I also had a great night last night. I met my best friend and we went a walk around my local town looking at the Christmas lights. Claire went my speed, and let me use her to hold onto for support the whole time. We stopped walking whenever I had to – either because I had to, or I saw something I wanted to take a photograph of. Then we went out for dinner and bought a lot of good food. Good, warm, comfort food. We got some sides that we could share and we just chatted the whole time. We spoke about everything and it was nice. I smiled, a lot! Actually, I smiled more yesterday than I have done for a long, long time. I felt ‘normal’, which is something I haven’t felt in a while. It was a Saturday night and I

null

was spending time with my best friend. I really needed it. Truthfully, I did not actually know how much I needed it until we were out.

I have included some websites at the bottom if anybody needs any random kindness ideas or self-care tips. If anything can be taken away from this post, I would say, that on your journey of feeling through this life remember:

  • Self-care is important, look after yourself – physically, mentally, emotionally and spiritually. You are awesome! You are important.
  • Take some “me time” – do something you enjoy, relax, feel good.
  • Be kind! Be kind to each other, be kind to yourself! As cliche as it sounds “share the love”.

http://kindnessuk.com/

https://www.kindness.org/

http://www.selfcareforum.org/

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.

(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.