(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.

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Petals of Remembrance

 

Today I attended a beautiful remembrance service arranged by Accord Hospice. Accord Hospice is a hospice in my home town, Paisley. Accord’s purpose is to provide compassionate, palliative and end of life care to people. They strive to then continue to comfort loved ones through the bereavement process and remembrance. They “…seek to optimise all that brings meaning, comfort and hope, ensuring that we value and celebrate life in all its diversity” (part of the Accord mission).

Every year the hospice puts on a service of remembering in honour of the people who have passed away and their families. Each year is a different theme. Today the theme was petals. The hospice had sent a petal shape out to my papa and the idea was to write the name or a memory or a message of remembrance for the loved one you have lost. Petals were provided at the back of the hall for anybody who wanted to write their own message. If you look at the picture below, all the different colours on the stage are all the ‘petals’ with all the messages of remembrance. It felt like such an intimate moment when people went to lay their petal.The service was a chance for people to come together to remember loved ones through song, music, poems, prayers, memories and love.

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At one point of the service petals fell over us all. Realistically, this was people up the stairs, walking along throwing petals over everybody but it was a beautiful moment. It was like receiving your own message, or sign, from your loved one.

The theme of nature is particularly important to me. There is a tree near the family plot in the cemetery. It is a beautiful tree, full of blossoms.On the day that we buried my nana’s ashes, as my papa and my uncle lowered the casket, I got tapped on the head by a branch from the tree and petals fell off. I took this to be a comforting pat on the head off my nana. Another important part of the service was when “On Eagles Wings” was sung. This was a hymn that we picked for my nana’s funeral.

On the 20th of May my papa, my aunt and uncle, my sister and I stayed overnight at the hospice to be with my nana. The staff at the hospice were fantastic! Not only did the provide the best care to my nana but they also looked after all of us. At 7am of the 21st (of May) we were altogether with my nana as she passed away. This service was very important. It was a chance for me to think about my nana, to think about time spent together, to think about her. Around 5am on the morning my nana passed away I was in the room with her, holding her hand and “Con te partiro” came on. At the time, I was so emotional that I started to cry even heavier. I was so annoyed by it. Calming music was being played to try and block out the sound of the nebuliser, and to help keep the atmosphere calm to help us and my nana. “Con te partiro” is translated to “Time to say Goodbye.” Now, in hindsight, I think it was an important time to have. Many different pieces of music was played that night and I cannot remember any of them other than ‘Time to say Goodbye.’ This is such a poignant memory for me, and it is one that is going to stay with me for life. I thought about how cheeky my nana was. She was so funny, and the faces she pulled. I thought about all the outings we had, the arguments we had, the cries we had, the laughs we had.My nana passing away was one of the most difficult time of my life and having a time and space to reflect upon everything, i feel, has been beneficial for me.

I have written about my nana before. She was such an inspiration. She made such an impact on people when meeting her. Everybody comments on the loss that they feel without her here. She was loving, strong, determined, loyal, stubborn and she fought a brave battle. If I can become half as charismatic, present and loving person as my nana was, I will have succeeded in life.

Check out more about Accord Hospice here: http://www.accordhospice.org.uk/

 

On a completely different note, today marks the start of Fibromyalgia Awareness week. Later on during the week I think I may add another blog, about fibromyalgia. If anybody has any questions about life with fibromyalgia, please feel free to ask. I may not have all the answers but I am happy to speak about my own experiences.

For more information check out http://www.fmauk.org/

“I’ve become so numb…”

Hearing reports on Thursday 20th about Chester Bennington’s death by suicide at the age of 41 shocked and upset me.

The date of his death looks to be significant as it is the date that his friend Chris Cornell’s (who died by suicide himself 2 months ago) birthday. Birthdays, anniversaries, holidays can be very difficult for people. That date can magnify that your loved one is no longer with here, and their loss can be really felt. Losing a loved one can be a trigger for mental health issues. The overwhelming variety of emotions that attack you, the grief and realisation that loved one is not with us anymore are all hard to deal with. This can lead to feelings of self harm or suicidal thoughts/ attempts.

It is a tragedy when any loss of life is due to suicide. There seems to be something more terrifying about it when it is somebody you admire, you look up to. It is especially sad when that person and their art helps you through dark times and feelings in your own life.

Death by suicide always raises a lot of questions, with people wondering how he could do it and think about how he “had it all”, they think “what about his … [children, wife, family, friends, band, fans]?”, “why did this happen?” The hard thing is, there will be no answers for the ones searching for them. Even if their is a note or some kind of message nobody is going to really have any answers.

Linkin Park, and their music are often said to have ‘saved lives’. Their powerful music and lyrics have impacted many people’s lives.The music reminded people that they are not alone in their battles with their demons. It provides a safe outlet to scream out frustrations, emotions, repressed feelings. Lyrics of songs and music can be so important. Lyrics can give feelings and experiences words, especially when you cannot put words to these yourself. Pain and hope were often themes through Linkin Park’s music. That’s important to people. There are Linkin Park songs that resonate with me. Linkin Park music is part of my own journey and I, like all fans, can feel this loss of a man whose words and emotions through music impacted on life. The title I’ve picked is from “Numb” which is a song that has helped me through some times. The phrases “…all I want to do // is be more like me and be less like you” and “every step that I take is another mistake to you” felt like they were describing me. I remember listening to “Numb” and thinking that this song was exactly like me and my life. It had a huge impact on me. I just don’t have the right words to describe just how much they did.

Tributes can be found all over for Chester Bennington. I really hope that his family can take some comfort from the fact that he has helped so many people through their own mental health journeys and that his music and songs will continue to be there through tough times. I hope Chester is at peace now, I hope he knows the impact he has had on so many lives. I am sorry that he didn’t have help at a time that he was so vulnerable.

For everybody grieving the passing of Chester Bennington. For everybody grieving the passing of a loved one (whether it was suicide or not). For everybody suffering from depression, anxiety or any other mental health condition, chronic illness, disability (invisible and visible). For everybody with thoughts of self harm or suicide. There are a few things I want to say to you:

  • It is ok to feel. It is ok to have many different emotions going on. It is ok to not know how you feel, you can’t give it a ‘label’ you just feel..
  • You are not alone. Other people may not know exactly how you feel, or what you are experiencing, but people can relate.
  • There are people out there who can help. There are people out there who want to help you! It is ok to reach out for help. It is not being weak asking for help. It is easy to feel that the whole world is against you, but it’s not. There will be help available somewhere.
  • Be kind to one another. You don’t know the battles that some people are facing. It is not always apparent that somebody is struggling.
  • Above all know that you matter! Your life, your story, your journey… You!! It all matters. YOU matter!!

If you, or anybody you know, are requiring help and support then there are multiple companies you can call, or get in contact with.

You can call the Samaritans any time, for free from the UK on 116 123.

For any readers not from the UK, the To Write Love on her Arms website has quite a useful list under their “Find Help” Section. Do check it out, quite a lot of places are covered. https://twloha.com/find-help/local-resources/

Grief from the passing of a loved one…

Download Quote About Death Of A Loved One | Homean Quotes Death Of A Loved One Quote

(*disclaimer: I do not know who to give credit to for this image, I found it on Google images)

 

A loved one passing away is always a difficult time. In fact, the death of a loved one of the higher scoring life events in the social readjustment rating scale (commonly known as the Holmes and Rahe stressor scale) scoring 63.

On the morning of 21st of May a very important and special person in my life passed away – my nana. My nana was a major part of my life. She was always there for me and stuck up for me when it felt like the rest of the world was against me. She helped raise me. Actually, at times she was my primary care giver. I can honestly say I am the person I am today thanks to her. I am still here thanks to her.

Many different emotions can occur from a bereavement – shock, anger, guilt, sadness, emptiness, even relief. It is important to remember that this is natural. Even when you know that a person is dying, their death is still a shock. My nana had cancer. It was in her lungs, adrenal glands and they thought that it may have spread to her brain. She went into a hospice as her kidneys were shutting down and thanks to the hard work from all the staff they managed to get them to normal function again. As a result we got an extra month to spend with her. We were told that they could not give us a length of time at that point, but we knew that we did not have long. Still, when that change happened and it became clear that my nana was dying it was a huge shock. It still knocks you over. No matter how much time you have “to prepare” nothing actually takes away that gut-wrenching, devastating shock that takes over your whole body when your loved one is dying/dies.

People tend to find that the first few months after losing a loved one is spent doing practical things – getting affairs sorted, arranging the funeral, sorting out the will. It can be a while afterwards when your loss finally hits you properly.

While grief is universal it differs from person to person. It is solely unique to each person, and the relationship that you lost. That being said there is a basic model of stages of grief that is used. In 1969, Kübler-Ross introduced a model with several stages of grief. Typically this is known as the seven stages of grief or the five stages of grief. These stages are shock and disbelief, denial, anger, bargaining, guilt, depression and acceptance and hope. People talk about the five stages of grief which is shock and denial being blocked together and bargaining and guilt put together.

The Seven Stages of Grief:

  • Shock and disbelief
  • Denial
  • Anger
  • Bargaining
  • Guilt
  • Depression
  • Acceptance and Hope

The Five Stages of Grief:

  • Denial/ Shock/ Disbelief
  • Anger
  • Bargaining/Guilt
  • Depression
  • Acceptance

Although this model is accepted, not everybody who grieves experiences every stage and there is no “correct” order to go through. This is a psychological framework to better understand grief and to hopefully help support people who are grieving.

No matter how your grief manifests, and you get hit with that wave of strong emotion remember there is no “correct” way, allow yourself the time to feel, to process and talk about your feelings. Talking about your feelings can help. Ask for help and support. Whether that be from loved ones, your doctor, a counsellor, some kind of bereavement service, if you need help ask for it! Asking for help is not a sign of weakness, it is the opposite, it can make you stronger. It can strengthen bonds, makes things easier for you, help you cope. Keep in mind their is no instant fix. You need to experience grief your way and do what you have to do to begin to heal.

As a side note, if you want more information about the Holmes and Rahe Scale or the Stages of Grieving. Look them up, there is loads of information out there!

Also if you are struggling, please do reach out for help. It really can make a difference.