This subject is a bit ‘ta-poo’… 

OK, so I don’t really know how to start so I’m just going to take the plunge and dive right in with this one.

Nobody really wants to talk about bowel movements! (if you are somebody that finds it uncomfortable then I wouldn’t read any further.) It is something that has never bothered me though. I think it is because I used to be a support worker and had to help with personal care many times, to me it is ‘just one of those things’. In fact, at every work outing we had we always ended up talking about poo – even through dinner. I sometimes forget that it’s not a topic of conversation that is so readily accepted though, and I do admit that sometimes I probably should read the room a bit better at times. However, if somebody asks me how I am or what has been going on and I’m having particular bad digestive issues, I’m going to say so.

So recently, I’ve been having particularly bad digestive issues. It’s been hard. I’ve been sick, I’ve had diarrhoea and I’ve been constipated and it’s really frustrating. Not only is it completely inconvenient but I can’t seem to find any pattern to it. I am also suffering from really bad abdominal pain. It’s horrible. Truth be told, I was actually considering going to A&E earlier the pain was so bad.

Although I can’t find a pattern to try and see what is causing diarrhoea or sickness, one thing I have noticed is it seems to involve food. Not any specific food, just food in general. I feel like whenever I eat something, my body wants it to come out. Sometimes it wants it to come straight out! And, truthfully I don’t think it cares as to how it happens so long as it’s out. I have found that it is after I eat that I need the toilet, sometimes right after eating, sometimes a wee half hour after but I need to go. Sometimes after eating,I feel sick. Sometimes I am being physically sick. Again, often it is straight after food, sometimes I have some time. It’s a very strange sensation. There are times where it feels like food isn’t going down, as though I’m not swallowing it properly. It feels like it just goes to the back of my throat and sits there waiting for my body to make it exit.

So like any new or change to any symptom or my health I told my GP. I guess he has a few ideas of what it could be, or things he wanted ruled out. He said he wanted me back in a few days later for blood tests, a urine sample and a stool sample. I can’t even remember everything he was testing for – there was a list.

I found the whole experience a bit traumatic. I don’t like needles so getting blood taken is never an easy task for me. However, if I go in and look away I can usually deal with it. I tend to pick a point in the opposite wall and just stare at it. I hardly even talk to the nurse through it. I need to concentrate on that point that I’ve chosen. I have done urine samples before. I hate them. I swear I need to pee so often that it’s a running joke amongst my friends that I have a tiny bladder, we all say it’s “the size of a pea”. It is my experience though, that when I need to give a urine sample, my bladder gets stage fright. It always chooses those moments to be made of steel and I have to do the full drinking loads, and have all the taps on full to get even the tiniest trickle. The problem I had was the stool sample. I have never given a stool sample before and when I was in with the GP I was too busy trying to process everything he was saying to me to ask any of my questions. Actually, I didn’t even know I had questions until I got home and was telling my papa how my appointment went.

Just a sample of questions I had (and I feel they were important questions!):

1) How do you get your sample in the pot?

2) How ‘fresh’  does it have to be?

3) How much goes into the pot? Does it have to be full? If not, how much is enough?

4) What do I do if my bowel, like my bladder, gets stage fright as I had to fast for my blood test so it wasn’t like I could just go and eat foods to help you move? (Incidentally, it did decide it wasn’t going to go. It was a nightmare. I had diarrhoea and then it decided it was not going to go).

So like any question I have, I asked my nearest and dearest and then when that failed I asked Google. So just some of the answers I got…

I asked my papa how to do a sample. I figured, he is at the age where he has to give samples for bowel screening so I thought he could maybe help. His reply first of all was to “put it in the pot”. Once I explained to him that I knew that, I meant how did I get it in the pot he said “catch it”.

Google was more helpful. Google suggested using clingfilm over the toilet to catch it and then putting it in the sample pot. I actually fully recommend this method. It works a treat!

My sisters boyfriend told me I had to “fill that pot right to the top” because “they want all the poo”. Then him and my sister laughed for ages afterwards. I decided my silver lining was that at least they were amused.

Even though Google was great for the cling film technique, one bit of advice I didn’t like was it told me that the sample should be as “fresh” as possible and if I got the sample more than 24hours before I had to hand it in then I was to put it in the fridge. PUT IT IN THE FRIDGE!! That was 100% NOT happening. I don’t care what happened but no way was I putting a pot of poo in my fridge! No thank you! I would’ve wanted to incinerate the fridge afterwards. Plus all the food stuff in there?!? Nope! Just no! I decided my plan was just to hand in my urine sample and get my bloods done and hand the stool sample in at a different time if I had to. Anything was, and is, better than even the thought of putting it in the fridge.

So I found all this a bit traumatic but my family loved it. It has provided them with so much entertainment. It is perfect material for some of their senses of humour. And I love them for it! I am worried about what might be wrong with me, what might be found, will I need more tests? But I welcome the distraction from all the laughter that my family are providing from it.

I think it is important to talk about bowel movements sometimes, especially to medical professionals if something is wrong. It is one of those things that is a bit embarrassing so you’ll maybe not bring it up with someone but you totally should! It can be an indication that something is up. But also, those medical people are human too! They poop too!

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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.

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.

image

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/

Confidence and self belief

I am late in posting this because I was scared it was going to turn into a never-ending rant and I really didn’t want it to be one.

Confidence and self belief are needed throughout life. Confidence and/or self belief is needed for so many activities – presentations, exams, performances, meeting new people, asking a person out for a date, planning a journey, interviews. Really the list can go on and on. Anything that involves putting yourself out there requires some amount of confidence. If you are confident about doing something, you know that you can do it simply because you set your mind to it. You know that you can handle the thing. You know that you can say the right things, find the right answers, look the right way. You are assured that you possess the skills and abilities to get by. Although confidence and self belief are important in life, they are often lacking.

People who are confident are often better equipped to handle problems and challenges. They are more likely to take risks or put themselves out there. They have the mentality and self belief that they will succeed, nothing is going to go ‘wrong’.

“Once we believe in ourselves, we can risk curiosity, wonder, spontaneous delight, or any experience that reveals the human spirit.” E. E. Cummings

That being said, an incident happened this weekend that made me angry. Truth be told, “incident” really isn’t the right word. Saying incident is making me think of something that is quite a big deal, but I don’t know what else to call it for now. It certainly wasn’t, or at least should not have been a very big deal. Basically what happened is, a mistake was made somewhere involving a form. This is not what made me angry. What enraged me was people’s reaction to this small mistake and that my dad got the full blame for it. So today myself and my dad went together and managed to sort out the problem. It took about five whole minutes to sort the whole thing! It was certainly not worth the worry and upset that had been our whole weekend. Also, this big mistake that was all my dad’s fault? Was not my dad’s mistake!

My dad has very low self-esteem and has very little faith in himself. I have witnessed people belittle my dad and point out that he can’t do things, or can not do them properly. For years my dad has been told he is not good enough and now, as a result, severely doubts himself. My dad doesn’t like reading or writing or talking to people. He worries that he might make a mistake, say or write the wrong thing and be judged for it. He double checks spellings, and information that he knows just because he does not have the faith in himself that he is correct. He will ask for help, because he doesn’t want to do it himself in the full fear that he will get it wrong. For quite a while now I have been encouraging my dad to write cards, letters, forms etc himself to try and show him that he can do it. I feel like my dad has not had much encouragement through his life to be independent and do things for himself. Other people did it for him, or instead of him. I like to be there for him, to help support him, but let him take lead so that he can see that he can fill that form in, make that phone call, whatever it may be. I hope that in doing so he can see that I believe in him. I hope that it might make him believe in himself more.

The fact that my dad received the blame for this mistake is what has made me angry. There was nothing to say that it was his fault. Many factors could have contributed to this mistake but the blame somehow fell to him. You would think that the fact we now know it was not him who “messed things up” would make things right? It has not. For a whole weekend my dad got told it’s been his fault, and he has beaten himself up over it. The more my dad was spoken about, the more my anger boiled. People who know my dad know he is not the most confident of people. So for people who know my him to say things in such a negative manner about him, and to him is not right. A mistake was made, somebody was upset and that is ok. That is what happens. People say things when they are angry quite often that they don’t mean. An argument, shouting, swearing, whatever it is, goes on for a much shorter time than the thoughts and feelings that are going to continue. You tell a person, who does not believe in themselves, that they are an idiot. That person can take that comment and torture themselves with it for day, weeks, often longer.

My dad is human, and yes he can get things wrong… But do you know what? So can everybody! He is just trying to feel his way through life the same as me, the same as you, the same as everybody!

I have always struggled with self belief and confidence my whole life. Teachers at parents night would be telling my parents that I was smart but I had to “speak out more in class”. They said that it was important for me to contribute more to class discussions, or volunteer to read out or volunteer answers. I have always been an anxious person and an overthinker. I think this is where a lot of problems can arise. Speaking out in class was my idea of a nightmare! Speaking out in front of people is still my idea of a nightmare! The very thought of it makes me feel sick. If a person lacks confidence, they may be reluctant to put themselves out there, and that is due to fear and worry. All sort of thoughts and worries can attack you, all those “what if” thoughts. “What if I say the wrong thing?”, “What if I stutter?”, “What if I fall in front of everyone?”, “What if I mess up?”, “What if they laugh at me?”, “What is I spontaneously combust?”, “What if I bore people?”, “What if they throw things at me?”, “What if they try and kill me”… The “what if” questions can create huge obstacles for people. They can range from anything from fairly realistic and acceptable worries to “dramatic” and unrealistic.

Fear and worry largely contribute to stress. This can in turn lead to problems such as insomnia, achy muscles, stomach problems, appetite problems, headaches, lead to alcohol or other substance use. All of this is hard in itself. If you then consider that people can experience this on top of a condition or illness you can hopefully get an idea on how dangerous lacking in confidence and self esteem can be.

If you know a person has low self esteem and confidence issues, don’t make them feel worse about themselves. Don’t belittle them. Don’t give them more ammunition that they are going to go away and torture themselves with. Show a little empathy. It’s ok to get annoyed. Just make sure that person knows you were saying that in the moment. Don’t let them think that they can do nothing right. Don’t let them think that they are worthless.

If you don’t know the person, just try and be a kind person. Still try and be empathetic. You don’t know what demons that person is fighting. A small comment can shatter a person’s feelings of self worth. It can evaporate any drop of confidence they have which in turn can affect that person’s life in a huge way.

It would just be great if people could spend time building each other up instead of tearing each other down. Tell people that they can do things. Praise people for their efforts! Tell people that they are awesome, cause at some point they could believe it and you’ve increased a person’s self worth and belief in themselves. Nobody know’s the kind of positive impact this will have on a person’s life. It works! I often tell my cousin Donald that he is awesome. He tells me that I am awesome. Do you know what has happened? There are times now that I am more willing to try things. There are times now that I have managed to do something, all because Donald has told me that I am awesome and I know that he believes in me, which has made me consider that maybe I can do. For example, him believing in me made me think that I could blog. I could give myself a voice. I can do this. Small things can be so impactful upon life, and can do wonders for feelings of self worth and confidence.

You are all awesome! Try and be kind to other people. Help each other feel through life and grow and develop each other’s self worth and confidence.

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!