Lung Cancer Awareness Month 2017

 

LCAM-Poster-Image-for-Web
A poster from the Lung Cancer Awareness Month website.

 

November is Lung Cancer Awareness month. Lung cancer is the leading cause of death from cancer in both men and women.

Cancer is a horrible disease! I know so many people that have been affected by it, whether that be having cancer themselves or watching loved ones go through their battles. Even with Cancer being so widely known it is something that is not always spoken about. The very word Cancer brings about a lot of fear. In a lot of ways, it is like Voldemort in the Harry Potter series! The very name brings fear and uncertainty. Which is why the wizarding community started referring to Voldemort as “He Who Must Not Be Named” or “You Know Who”. Like Voldemort, Cancer is often avoided in talks and has been shortened to “The Big C”. I think it should be spoken about. Cancer is isolating, and avoiding talking about it only makes it more isolating. I understand that people don’t know what to say to a person who has a diagnosis. It is a lot for people to process. My advice is just to be there. Let the person know that you are there when they want to, and if they need to talk and just be there. Treat the person with dignity and respect and don’t make them feel that they are alone. It really is that simple.

Cancer begins in cells in our body. Cells in our bodies are what makes up the organs and tissue in them. Our bodies heal, grow and repairs itself by cells dividing and new ones being created. Sometimes these can become abnormal and they keep on dividing and creating more abnormal cells that can come together and for a lump, or a tumour. A tumour is not always cancerous though.

The most common symptoms of lung cancer are:

  • A cough for 3 or more weeks or a change in a cough that you’ve had for a while
  • A chest infection that doesn’t get better, or repeated chest infections
  • Feeling breathless and wheezy for no reason
  • Chest or shoulder pain that does not get better
  • A hoarse voice for 3 or more weeks
  • Coughing up blood
  • Losing weight for no obvious reason
  • Fatigue
  • The end of your fingers have changed shape (larger or rounder – clubbing)

If you or someone you know have any of these symptoms, it is best to talk to a doctor and get it checked out.

There are two main types of lung cancer – non-small cell lung cancer and small cell lung cancer. Treatment depends on the type of lung cancer you have. Small cell lung cancer is so named due to the way that the cells look under the microscope. It is fast-growing cancer and spreads quickly.

My nana was primarily diagnosed with small cell lung cancer. When she was diagnosed it had already spread to her adrenal gland. It is thought that it may have spread to her head but she was too ill at the time for the tests to know, but she was showing symptoms that it had.

There are so many different charities and organisations that provide care and support to people and their families through the diagnosis. A quick google search and you will find a lot. Below are links that are full of information, resources and further links to look at.

Check out the Lung Cancer Awareness Month website to find real stories about lung cancer from lung cancer patients, survivors, caregivers and family and friends, http://lcam.org/stories-of-hope/.

The Beatson website has a huge list of different sites for support and information about all different types of Cancer, http://www.beatson.scot.nhs.uk/content/default.asp?page=s17, as does the IASLC (the International Association for the Study of Lung Cancer) https://www.iaslc.org/patient-resources/advocacy-partners. The list on the IASLC website may be more beneficial for people outside of the UK.

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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

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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/

Lest We Forget

Today is Remembrance Sunday.

Remembrance Sunday is a day to come together and offers an opportunity to reflect and show respect for the sacrifices made by the armed forces in past, and current, conflicts. Especially those who lost their lives.

In recent times there has been ‘controversy’ about wearing a poppy. I don’t understand this, personally. The significance of the poppy is like feminism – has lost its meaning somewhere along the line. People argue that the poppy is now a political symbol. It is used to glorify war, a symbol to support war. That is not the case. The poppy is associated with remembrance as it is a flower that grows naturally in conditions where the earth has been disturbed, which is the case for war and battles. It is said that poppies grew in fields after the Napoleonic wars, and then again was the only flower to grow in otherwise barren fields after the First World War. The poppy appeal was started by the Royal British Legion to raise funds for veterans and their families after the effects of war. I believe the poppy is a symbol, not only of remembrance but of hope! Hope for those veterans, and those serving in the armed forces, that aid and services will be available to them and their families. The Poppy is traditionally worn on the left-hand side of a jacket as it is meant to represent those that we are remembering are close to our hearts.

“Dulce et decorum est” by Wilfred Owen paints a horrendous picture of what life was like for a soldier during World War One. I think poems such as this one, is particularly powerful since it shows just how different this war was to others before it. You can see the atrocities that these men, many of them just young boys, faced. The poem end,

“My friend, you would not tell with such high zest

To children ardent for some desperate glory,

The old Lie: Dulce et decorum est

Pro patria mori.”

The Latin “Dulce et decorum est pro patria mori” translates to “It is sweet and fitting to die for one’s country.”

This weekend I have been listening to “Greater love hath no man” by John Ireland. When I was younger I used to sing in a church choir. ‘Greater love hath no man’ was sung at Remembrance Sunday Evensong. It has always stuck with me. I remember singing it fighting back the tears in the cloisters during the service. I don’t know if it’s the words or the music that touches me so much, but I think it is a beautiful piece of music. “Greater love hath no man than to lay down his life for his friend.” This is exactly what every armed forces member is effectively doing. They are ‘fighting for their country’, they are fighting to ‘benefit’ those back at home – their families and friends. If you have never heard it, I recommend looking it up and having a listen.

The effects of the two World Wars and other conflicts have impacted people in countries all over the world. My great papa Peter was in the merchant navy and later a royal marine. He used to tell us a lot about the time, that he was 14/15 and was nearly arrested during the Spanish civil war in 1936. He was also one of the crews stationed on the HMS Belfast during the Battle of North Cape. My nan and my great Auntie have stories about experiences through the blitz. I cannot even begin to imagine the horrors that people have witnessed. Remembrance day and remembrance Sunday are days for people to gather together and remember. It is important to remember! Men and women sacrifice so much in the armed forces. It is important to reflect and remember the lives lost through war! Especially in today’s world! You turn on the news, and there is some horrifying story about conflict and war. The way the world’s politics are going, we very well could be approaching another world war. I hope that is not the case. Days like today are important for this. People need to remember the destruction and the unnecessary loss of life in war. My papa survived the war but so many people did not. The picture above is of wooden crosses with poppies on them that are available that can be put at graves for remembrance. We have written my papa’s name on one, the other one is for my uncle. We have placed the crosses on the respective graves. It is important to remember, to reflect, to learn. It is important to honour and respect those who have died for us, and who put their lives in danger for us. It is important to acknowledge the great sacrifices that our armed forces make for us.

Here is a link if you would like to read Dulce est decorum est in its entirety, https://www.poetryfoundation.org/poems/46560/dulce-et-decorum-est

 

 

(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.

Celebrations

So far this month there has been quite a few celebratory events occurring in my life. Just like everybody else I look forward to events worth celebrating. There is nothing better than gathering with loved ones to celebrate milestones, achievements, birthdays, anniversaries, anything really. Celebrating creates memories, which more often than not become life’s most precious moments. Although I look forward to celebrations there is a part of me that dreads them. I worry about how my body will react at occasions. Will my pain levels stay at a level that I can cope with? What are people going to think/say about me if I have to leave early, if I cry, if I get overly anxious? The stress from this alone can bring about some not very nice symptoms. It’s a difficult cycle of stress. Even with this feeling of dread, spending the time celebrating with my family and friends create precious memories to be treasured throughout life.

My Birthday

This year I wasn’t in a celebrating mood. It was my first birthday without my nana here, I am in the middle of a flare up and I was in constant pain. I am not one to usually freak out about age but I felt so exhausted and my pain was really bad that I felt old, add that to the phrase “turning a quarter of a century” I really was not in a celebrating mood.

My best friend, Claire, told me that I had to do something for my birthday. She said I deserved to celebrate. I’m so glad she insisted I do something to mark my birthday, as I ended up having a really nice few days. Yes, days! Plural!

On the night of my birthday Claire, my sister Kaitlyn and her boyfriend Connall and myself went out for dinner. Afterwards we came back home where Kaitlyn surprised me with a birthday cake. We all had a good laugh as she started singing ‘Happy Birthday’ and she accidentally blew the candles out. She just stopped, turned around and went and lit the candles again and started over while pretending that this was not a second attempt. Kaitlyn’s reaction is what made the moment so funny. Afterwards we all watched Moana and had a laugh and cry together. I was very sore and had to move about a lot whilst trying to get myself into a position that I had the least amount of pain. My movements were not helping in the slightest, however I was in the house and I was with my loved ones so it was ok not to be fully ok!

The next day I was treated out to lunch by my big cousin. I was only out a short time but I had a lovely time catching up. She seemed to know when I could not take much more and took me home. I had to go and lie down, as I was exhausted and in quite a bit of pain, for a while but I was glad that yet again, I had such a nice time with a loved one.

The day after that myself, Claire and my good friends Hazel and Cat met up and had dinner together. It was so good spending some quality time with them. It is not very often that we all get together. That day was difficult, after the last two days I was very tired. It felt like lightning bolts were being shot down my back. The girls were amazing, they understood that I was sore and they also took into consideration that I hadn’t been wanting to celebrate my birthday. The plan was dinner and cinema but the plans were flexible. They told me that the plan was all depending on how I was feeling. If I was too sore to go and sit through the cinema then we were not going to go to the cinema. It meant so much to me! Especially when earlier on that day I was messaging them that I couldn’t make it. I’m glad I went. I’m glad the girls were flexible and went with the flow, just feeling our way through the occasion with no set in stone plans.

The next night I went a walk with my other big cousin. He gave me my birthday gift and we had a good time walking and talking. He let me set the pace for the walk and nearing the end of the walk I was struggling and he linked arms with me and supported me right to my door.

All the gifts I got for my birthday were perfect. They were all about self care and activities that I enjoy, that I find calming. I really am lucky that I have the most considerate people in my life. They walk at my pace (no matter how slow that they find it), they seem to understand that I maybe cannot spend very long out with them before I have to leave, they understand that I may need some extra help while out or I may get emotional and still they stick by me!

Kaitlyn’s Graduation

This year has not been the easiest year for Kaitlyn. It was her honours year at uni so she already knew it was going to be quite tough. During this time, life seemed to just throw so much at her – hardships at work, getting a new job, going through a breakup, starting a new relationship, helping care for my nana, helping to care for me, the death of my nana. All of that is difficult in themselves without adding in being a fourth year student. However, she has managed to overcome everything and passed her course. This week she graduated. I could not have been any more proud of her. She looked absolutely beautiful! She picked an off the shoulder shirt and a classic straight skirt which was a fabulous combination. During the run up to her graduation day, she asked me if I was going to be ok at the graduation, she did not want me getting too sore. How amazing is my sister? I replied to her that I did not care how much pain I was in, I was going to be at her graduation no matter what. The graduation ceremony took place in a church. To get into the church there is a lot of stairs, and the pews are not exactly comfy. I was also rather ‘foggy’ that day. I accused my dad of moving my booklet with the graduation order when it was in fact me who had placed it where it was just minutes before. I was one very proud big sister hearing Kaitlyn’s name being called and watching her cross the platform to be capped and to get her hood and degree. A tear may have been shed…. Any pain I experienced that day was worth it! No way was my conditions taking away such an important event for my sister away!

After the graduation ceremony and reception we came home and all of us changed straight out of our formal clothes and into comfy clothes. Formal clothing was not designed for people in chronic pain. It’s heavy, and thick and it was such a relief to get it off (I was wearing a tailored dress). We all then went out to dinner together in comfort and then Kaitlyn and Connall went off as they had their own plans.

A work mate’s birthday

A girl I work with will be turning 21 in a few days. For the past month or so there has been a lot of secret chats discussing ideas of gifts and a night out was planned. I knew that the way my condition is at the moment that I would not survive a whole night, and I did not want to put a damper on any of the celebrations. So I said from the offset that I would only attend the dinner and not the ‘few drinks’ that would follow. The plan was that she would know that she was going out for dinner with a few people. Everybody else, myself included, had told her that we were unable to join her on a night out for one reason or another. Then when she came into the restaurant there would be a big bunch of us sitting there to surprise her. Somehow, the secret was kept and she was indeed surprised when she arrived at the restaurant. I was so glad to be part of celebrations for her birthday.

My tummy had not been very good that day. It had been making a lot of dangerous noises and doing flips all day. I was exhausted, showering took so much energy from me that I had to lie down a large chunk of the day until I really had to get ready. Despite this and the pain that I was in, I managed to get my hair to a fairly presentable state, put on a dress and I even managed to put my make-up on. I felt somewhat presentable when I left the house. I did not look so presentable when I came home. After the dinner I managed to walk, with some support from my team leader, from the restaurant to the first pub in their plan for the evening where Kaitlyn came to pick me up to take me home. When I got home I took a wee selfie, as you do, and it is shocking the amount I changed in not even being out the house for two whole hours. My make-up was a mess and smudged, I had massive bags under my eyes from being so fatigued (clearly not helped by the smudged eyeliner and mascara!). I thought I looked like I had been out all night drinking… All I did was go out for dinner! It was enough to take it out of me!

Fibromyalgia sucks! People see a young person, and they do not see anything “wrong” with me. People think you are being dramatic if you say you’re tired, or sore at my age. They don’t see the chronic pain and don’t understand the fatigue.

All this celebrating has taken its toll on me. I am so exhausted, I am walking funny, the pain I am has increased and I have had to spend a lot of time resting. However, through these celebrations, even if I was only able to go out and join in for a short while, I have had such a laugh and felt so much warmth from the people that I spent time with. Yes, it all made me anxious. Yes, it all gave me a lot of pain. Yes, it sucked a lot of energy from me and took a lot of effort. Yes, I was nearly cut short when needing the toilet. Yes, I had to leave celebrations early. Yes, I have had to spend a lot more time resting and I have had to spend time not being able to move. But do you know what? It has been worth it! I managed to help celebrate with my friends and family and that has been great!

If you have a ‘condition’ any kind of condition, visible or not, when occasions arise that should be celebrated, if you are able to get out to join in, GO! Attend that dinner, attend that pub, go and join in. Even if you can only go for a short while and have to leave early. Even if it looks like you will just be there fidgeting, when really you’re trying to find a position that your body is not screaming at you. Go and make those precious memories. However, if you cannot go, try and be kind to yourself! Do not beat yourself up about it. Send that message or make that call letting that loved one know that you love them but unfortunately can’t make it out but you hope that they enjoy their time. Hopefully they will understand, it is ok, not to be ok! After all, there is always time to celebrate some other way, some other time. Plus, you never know, the celebration might just end up spreading itself out over time just like my birthday did over various days!

 

Friendship and Fibromyalgia

ftlfriendFriendship. As social beings, friendship is important to us. It’s the relationship you have with another person. It is likely that you have things in common with this person, or you have genuine affection for them. It is a thing that can bring joy and love, help you through things. Real friendship is such a beautiful thing. The picture above is a birthday present I received from my best friend. The third definition listed, probably won’t make much sense to people but it means so much to me. I guess it is a small insight into the relationship we have. It is all those small things, the memories made and that are treasured, that makes friendship so beautiful.

Friendship is important, it is such a valuable experience. However, if you have fibromyalgia it is so easy to lose friendships. Now don’t get me wrong I know sometimes friendships just fade naturally over time. Fibromyalgia tends to just speed up this process. Every time you get invited to something but you have to cancel, usually last minute, because your anxiety is so high that you can’t seem to get yourself over the threshold and out the house. Every single scenario running through your head of trouble looming, accidents happening, your outfit not being right, you’re too fat, the fear that people won’t like you, the fear that the place will be busy, having to talk to strangers. The list goes on and on. Having to cancel as your belly has just started doing flips and you know you are going to have to spend the night on the toilet instead. Having to cancel as you’re in so much pain that it feels like your limbs are being ripped off your body, it feels like a knife is stuck in your back or you legs have turned to lead and you can’t get one foot in front of another. Having to cancel as you are so exhausted that your eyes are stinging from being open. Or your head feels too heavy, your arms and legs are tingling. All of these ‘excuses’ can wedge itself between friends. Chronic pain can be so isolating, and sometimes sharing it with friends can be worse than keeping it to yourself. Fibromyalgia is difficult to understand, and with it being an invisible illness, you “don’t look sick” or you “look normal” and it is easy for a person to think you are “just putting it on/ faking it/ being dramatic” (really you can insert so many negative comments here, I have heard quite a few). It tends to be that when you cancel one outing, meet up, event then it is generally accepted. Having to cancel multiple times (which can happen) then the invites tend to stop coming, text messages/ emails/ phone calls decrease and the space and silence grows. It is so frustrating! I sometimes wish that my life could be recorded, that people could see the effort put into going out. That people can see how much I try to get out. How much I want to spend time with that/those people. How upset I am when I have to message or call to cancel. How disheartening it is that you cannot get out and do that thing that you wanted to do, and how debilitating symptoms can be. How can you explain that everyday life for me can feel like the flu – I am achy all over, I have no energy, I am so tired, my balance is all over the place. I don’t say this to people for them to feel sorry for me, I tell people in hope that they might understand. Sometimes people do try and understand, sometimes people just do not believe you.

I do not have very many friends, however those that I do have are golden. I am so blessed to say that I have important people in my life. I have those people who have a listening ear to hear my troubles, frustrations, hopes, fears, or thoughts (no matter how ridiculous some of them seem to be). They are there for me to vent at (and I rant alot) and sometimes they just listen, other times they offer advice depending on the situation. They offer a shoulder to cry on – both figuratively and often physically (again, this is something I tend to do a lot). They are there when I need a hug, when I am vulnerable, to celebrate and gentle hugs for bad pain days. They are there with words of encouragement and believe in you. In fact, I often call my best friend my personal cheerleader. She believes in me so much, and can pick me up when I’m down. She defends me (like by pushing drunk men who have fallen on me off of me at gigs, or telling random drunk men to get lost with a capital F and a capital O when they put their arms around me and sing in my face. When ex’s text the most horrible things and make you cry and she takes the phone off you and wipes away your tears and lets you enjoy the rest of your day instead of being bombarded with very negative messages), even if the person she is defending me against is myself (she says I am too hard on myself, she’s probably right). I am lucky that I have a friend who believes, and tells me that I deserve the world. I deserve good things and I deserve to be happy. I just hope that she knows that I hope and believe the same for her!

It is important to find people who support you and can understand you. They maybe do not completely “get it”, but they care and want to help. You want people that you don’t need to pretend to be “fine” with. When I went on holiday with my friend, she knew that I was going to find some parts challenging and be in pain. She also knew that I can be stubborn sometimes, and tend to try and keep going until I just can’t any longer. She asked me to let her know when I was in pain or anxious. She told me that if I tell her it means we can do something to try and help, such as go to a less busy part of the city, find a place to sit and rest, we can go find some painkillers. One of the days I forgot to bring painkillers with me in my bag and we had to go find a pharmacy which felt a bit like trying to work our way through a treasure hunt in places. She wanted me to enjoy my holiday too and not over exert myself to the point I stop enjoying myself or physically can’t do anything the rest of our time away. This is friendship! It meant so much to me that took so much time and consideration to make the holiday a great experience for both of us.

The people who you know you can share a rant, celebrate with, share some sort of ‘milestone’ or you can call or message at any time day or night are the people you want in your life. The people who will take the good and the bad together. The people who see you for who you are and not just your condition. In saying that, it means so much to me that I have the type of friends who say things like “I found this site and it said …. about fibromyalgia”, “I read that this might help, have you tried/ thought about it?” Although it saddens me that I have lost friends along the way, I am so glad that I have the friends that I have. If friendship and love was a currency, then I can honestly say I am very rich. I am so glad that I have people who are willing to try and feel through life with me.