Vivid Foliage

Recently I have been trying to be more creative in my quest to self manage my health.

I took part in a group called Threadlines set up by the Paisley Townscape Heritage and Conservation Regeneration Scheme. Threadlines is a group of artists who take part in activities that explore my home town’s printed textile industry.

Check out what the amazing ladies do on instagram at @threadlines_

Through attending the group, I met a group of amazing ladies. The group became more than exploring creativity and the towns heritage. It was about building self esteem and self belief. It was about being social, being able to talk to other people.

In the group we drew inspiration from local nature and foliage and print from old weaver journals. This weekend, as part of the Scottish Mental Health Arts Festival, the pieces of work that was produced was exhibited and there was a DIY printing station set up, along with the launch of the collaborative newspaper that we put together.

Remember to treat each other kindly because you don’t know the struggle that they may be facing. People are all just trying to feel their way through life.

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Invisible illness is…

For me, my physical health and my mental health is so closely linked, it is difficult for me to know which is which. I have had physical pain and anxiety/depression for years now. I actually do not know which came first. It’s a bit like that question of “what came first? The chicken or the egg?” Do I have problems with my physical health because I have problems with my mental health or vice versa? In any case, it is all part of my everyday life. Like many fibro warriors, I have a few related health conditions often associated with it (as well as anxiety and depression) such as IBS (irritable bowel syndrome) and TMJ (temporomandibular joint). So for this, I am going to use “invisible illness” instead of using a specific label. Below are just some of the effects that living with an invisible illness can have on my everyday life.

Invisible illness means feeling so much stiffness that it feels like my body is rigid and will never move again. For me, I imagine this must be how the Tin Man felt it The Wizard of Oz when he was rusted, before Dorothy gave him the oil to loosen him up. I have this every morning and quite often through the day.

Invisible illness for me means leaving the doctors surgery and breaking down in tears.

Invisible illness for me means having to lie down for a rest after a shower! I have so little energy that the effort of going through with a shower completely exhausts me. It means products like dry shampoo becomes a best friend.

Invisible illness for me means not being able to see my friends when I want. It means not being able to do activities with my friends. It means cancelling plans with friends.

Invisible illness is worrying about being a burden on loved ones. It is worrying about being too needy. Are they going to stop talking to you? Are you too much to deal with? Do you moan to much at them? Are they going to leave you? And then inadvertently pushing them away.

Invisible illness is needing to know that there are toilets near you. It is making sure that you know where it/they are located just encase.

Invisible illness can mean having an ‘escape plan’ in place. Knowing where exits are, knowing the fastest routes out.

Invisible illness not being able to do everything you want to do. It is about pacing yourself.

Invisible illness means having aids in place to help you keep as much independence as possible. Chairs, sticks, bars, wheelchairs, jar openers, dolcet boxes – anything that can make life easier. For me it is about having to accept that I may need aids in my life.

I have to point out, that it is not all doom and gloom! Like everybody else, I have good days and bad days. It is just a sad fact that people tend not to understand invisible illnesses. If everybody was kind to one another then society would be better. After all, everybody is just trying to feel their way through life.

Fibromyalgia Awareness Day 2018

Today is fibromyalgia awareness day. I’m posting a lot later than what I wanted to do today but I have had a busy day. I went to see an amazing wee play called Invisible today with my dad. It is written by Charlie Marx. It pretty much hits the nail on the head on what life with fibromyalgia is like. I felt quite emotional after watching it, it was so relatable. This story is so close to my own. It was educational, inspiring and hopeful. It made me feel hope. A feeling that I have been lacking a lot recently. I left the hall feeling valid, I felt that I was not a lone. I felt that I although I do not know what my future holds, it is worth finding out what it holds. I was reminded of the joy that life can bring and felt hope for my future. That changes could happen… For the better!

Fibromyalgia is common, and yet it is surprising how many people have never heard of it. I knew very little about it before I was diagnosed. When I say I knew very little about it, what I really mean is I knew a person who had it and I knew it caused pain. That was it! That was all I knew.

As you can see, fibromyalgia is a lot more than just pain. This is something that causes me a lot of health related anxiety. There are so many symptoms and effects. My fear is that I could have something else wrong with me and a health professional could just attribute it to the fact that I have fibromyalgia and not receive, or be able to manage it properly. I think that I have finally found a GP who listens to me and takes my condition seriously, but even he sometimes listens to what I’m saying and relates it to me having fibromyalgia instantly. I try to keep track of any new symptom, or any changes of symptoms. If you have new symptoms, you should tell a medical profession and get it checked!

Fibromyalgia symptoms can be anything from a mere irritation to debilitating. The severity of symptoms can vary from person to person. They can vary from day to day, hour to hour.

I think it is particularly important to remember that fibromyalgia does not discriminate by age! I am only 25, I have been having symptoms for years. I was a teenager when I started showing symptoms. In fact, there are times in childhood, that I remember having multiple appointments due to having ‘unexplained’ pain. I often wonder if this was the start of my troubles.

Despite fibromyalgia awareness day now coming to a close, it is important to continue to spread awareness.

Be kind to yourself, and other people. You don’t know what struggles people are going through. People are all just trying to feel their way through life!

Meds changing again…

Recently my doctor has suggested changing the medication that I take again. On the one hand I am so very fed up going through all the side effects of different medications and then the effects of changing it. I am fed up reading the leaflets that come along with the medication, or listening to the advice from the doctors and/or pharmacists about the possible side effects that these drugs can instill. I am so fed up having to take medication. I am so fed up feeling like there is so much more ‘wrong’ with me. However, on the other hand, I am very grateful that I am lucky enough to have a doctor that is listening to me and seems to be actively wanting to find something that may help me. That might just make living with fibromyalgia and anxiety and everything that entails just a bit more bearable.

Anyway, the drug that I was on was Duloxetine, or Cymbalta as it is widely known. I was taking 120 mg a day, which I believe is quite a high dosage. Now, in order to start a new medication I had to cut down the Duloxetine, before coming off of it and then starting the new medication. Since visiting the pain clinic, my GP had a list of drugs to try to treat my fibromyalgia. I have tried the different drugs and different doses of them with no avail. So far I have been through Amitriptyline, Gabapentin, Pregabalin and Duloxetine. I was also on Sertraline during this time. The move, from Sertraline to Duloxetine was particularly difficult. I knew coming off of Duloxetine was not going to be easy, especially when my doctor warned me that I was going to have “a rough couple of weeks”. He was not wrong! I have just started taking the new medication.

I could feel the effect as soon as I cut down the dosage of Duloxetine.

Then when it came to the period of time I was without medication, it was horrible! For years I have been having nightmares, these seemed to become more vivid. I was sweating. A lot! Not only that, I was having cold and hot flushes. I was feeling sick, all of the time. The pain I felt! It has been intense! On top of that my eyes have been funny. It was like I could hear them. I know how ridiculous this sounds as I type it but they were making lightsabre like sounds when I moved my eyes. Apparently these are brain zaps, and are common when coming off of Duloxetine. They are not nice! The headaches and feelings that accompany them is awful. I was getting random sharp pains in my head. I quite often get headaches and these sharp pains in my head but they seemed to come more often. I ended up holding my head, telling my papa that it felt like my head was going to explode more than one occasion.

It was just the other day I started this new one. So far I still feel rough and I still have a lot of horrible symptoms/side effects. However, it is still early days. I am clinging onto hope that perhaps this tablet will be the one to help me. I know nothing is going to take all my symptoms away from me, but anything that makes them that wee bit more bearable is a plus.

Remember to be kind to people. You don’t know their struggles. To look at me, I look “normal”. I do not have any obvious physical signs of being ill. Everybody will have their own burden, their own issues, and is just trying to work their way through life.

Sister, Sister

Earlier today I read an article entitled “Sibling Relationships Are Cradle To Grave” and it got me thinking about the relationship that I have with my own sister.

People who know me either personally know my sister or at least know of her. She is a huge part of my life. She is a lot more than a sister to me.

Kaitlyn and I have been close from a young age. Due to problems within the family setting, we stuck together young. It was, and still is, my wish to shield and protect Kaitlyn from everything that was being said and done around us. I remember just looking at what was going on between the adults and thinking that through it all I was going to be making sure that she was as safe as possible. That she knew she was not alone and had someone to help her, she had someone to talk to and could trust in all the crazy going on around us. This feeling has never left me. I would do anything for this little one!

As a result, if I was going out with friends, I would often bring Kaitlyn with me. Even in school, each of us could talk to the others friends at break time/lunch. I never thought this was strange. However, what I did find strange, was when people asked me about how I could spend so much time with my sister when all they did with their siblings was fight. I am glad to say that we have never had a period of time when all we have done was argue. We are human, and we can annoy the other but we have never had any proper arguments with negative outcomes or anything. I am very glad of this, I know that I am not the easiest of people to live with, especially on bad days.

Today, my friends are Kaitlyn’s friends too. If I am invited somewhere, there is an automatic invitation to Kaitlyn too. Which I love!

Kaitlyn is my sister. She is my protector. She is the person I go to in tears. She is the person I go to because I am happy. She is my friend, my best friend. My primary caregiver at times. She’s my rock. She has kept me going. She has been my carer… quite literally. She has helped me dress when I’ve been unable to myself. She has reached out to people and got me help and support that I needed. She has come with me to appointments, made sure I’ve taken my medication. She has been by my side through love, loss, heartache, good times, bad times.

Kaitlyn is one of the key people in my life, a key player in this journey. I am lucky to have such an amazing relationship with my sister, I cannot imagine it any other way. I hope and pray that we continue to be as close throughout life. I hope she knows just how much she means to me. There are no words strong enough to describe just how much love, respect and trust I have for her. I am so proud of her and the person that she is. She is so caring and resilient. She amazes me.

Relationships are tricky things, especially amongst family at times. I am blessed that to have such a good relationship with my sister. I know that not everybody is as lucky to have such an amazing relationship with a sibling. Treat each other with kindness and remember that everybody is just feeling their way through life.

It’s been a while…… ( and that’s ok)

My last blog post feels like it was a hundred years ago! Slight exaggeration… but it was quite a while ago.

I have said before, in a previous post, that I have been finding things difficult. That still stands!

In January this year, I began to attend counselling again. This was only a 6 session intervention. Around the same time I attended appointments (the initial assessment ended up being 3 appointments!) with a pain psychologist (which has led to further appointments). In these appointments I have been looking at my own behaviour, my past, trying relaxation and breathing exercises and been trying to find triggers for my anxiety as well as my pain amongst other things. At the moment, things feel muddled and my mood and pain levels are not good! I have been having more panic attacks and I felt like I have lost any form of being able to cope that I had managed to grasp onto. So I stopped blogging, I didn’t know what to write. I did not think that I had anything of meaning to share. I slipped into believing I was worthless, and could contribute nothing. Truthfully I stopped pretty much everything I was doing. I had no motivation. No energy. No interest in doing anything really.

That being said, I have continued to go to my appointments and I still am working on finding something that works for me. Finding a remedy to manage, or at least help manage, my condition.

I began to blog to try and work my way through my own journey with my mental health, through my fibromyalgia and through life struggles. I want my own story, my own experiences to be out there in the hope that it could potentially help somebody else. Even just to remind a person struggling that they are not alone. That they do not need to suffer alone. To know that it is ok to not be ok. It is ok to feel lost and not know what everything with themselves makes sense. To be a reminder that it is ok to reach out and ask for help. I really needed to remind myself of all this. I had to remind myself this multiple times and it has taken until now for me to put words down.

I needed these few months to try and focus on myself. To work through issues and try and practice some self care. The ironic thing is, me making this step to create a post again, is also a bit of self care. I think it is clear that I may need to take time out from blogging from time to time just to continue my journey and try and grow. As of now though, I am back! Back to put my experiences into the mix of what life with a chronic condition is like. Back to say that it is ok to take some ‘me’ time. It is ok to take time out when needed to recharge. I am going to continue to remind myself that I am enough. I have something to contribute, something of meaning. I am not worthless.

Be kind to people. You don’t know what struggles other people are going through. They will be just trying to feel their way through life the same as you are!

1st March: Self Injury Awareness Day

*The following could potentially be triggering*

Today is Self Injury Awareness Day.

Raising awareness about self harm is important. More awareness leads to better understanding, empathy and it helps stop judgement and fears therefore reducing stigma.

There are multiple assumptions about self harming which leads to stereotyping. Many of these assumptions are myths, today I hope to debunk a few of these.

Self Harming Myth: “People who self harm are attention seeking”

A lot of people think that people who self harm are doing it for attention. This is not quite the case. In a lot of cases people have feelings of shame after self harming. Self injuring is a personal thing and people tend to try and hide it, make sure it is covered up.

Self Harming Myth: “Only young people/ teenagers self injure”

This is not true. Self injury is an issue across every generation. It is important for people to know that people self harm at any age! Not just when young. It is important for people at any age to reach out for help if they need it. It is important to know that is even an option, they are not ‘weird’ or acting ‘inappropriate for their age’.

Self Harming Myth: “Self harming means cutting”

Self harming is always assumed to be cutting. However, it is not the only way that people injure themselves. Self harming is a physical response to emotional distress. Anything from biting, scratching, starving yourself, burning, purposely depriving yourself of sleep, overdosing these are all examples of self harming, and there are many more.

Self Harming Myth: “People who self injure are trying to kill themselves”

It is often perceived that people who self harm are trying to kill themselves. This is not the case. It can be true that people are self injuring with the intention to end their lives. However, self injury is more complex. A lot of people who self harm are injuring themselves in order to make their lives manageable – it is a coping method. They want to switch off feelings, or sometimes it is the opposite, want to feel something. It is a way to release an overload of emotions and feelings that they don’t know how to let out, or convey in another way.

Self Harming Myth: “It is only girls who self harm”

It is true that statistics show it is more females who self harm than men but there is not a true representation of data. Males are less likely to reach out for help.

Self Harming Myth: “Self injuring is just a phase”

It is quite a common misconception, especially concerning young people that self harming is just a phase that a person is going through which they will overcome or ‘grow out of’. This can be damaging to an individual. It demeans their feelings and experiences and create a feeling of loneliness for that person. If a person has approached you and told you that they self harm or have self harming thoughts, it is important to let them know that they are being taken seriously, you are listening and that they are not alone.

Self Harming Myth: “Self Harming is about trying to look/ be cool (especially online)” or “It is only emos/goths who self harm”

When I was in school, this was a very common point of view. If you were a goth or emo then it was automatically assumed that you were a self harmer. If you listened to certain music, or dressed a certain way, or even had certain friends then you were a self harmer. The bit that I never understood, and still don’t to this day, is that if you were part of these social groups and it was assumed that you were a self harmer then you were still bullied. Surely, if you thought somebody was self injuring you would want to try and help them? Not bully them?

There are websites online that can be damaging, especially to young and vulnerable people. Self harming is romanticised on them and portray self harming as ‘trendy’.

There is a cycle of self harming. It starts with a build up of emotions and suffering, which will lead to the act of self harming which provides an instant, short-term relief. However, this is usually followed by feelings of shame which then leads to emotional suffering. It is a vicious circle, and it is a circle that is difficult to break. Learning methods and techniques to break the circle is important is a person’s journey of growth and recovery. A person stuck in this cycle needs help and understanding in order to get the strength to break out the cycle.

Spreading awareness about self harm will hopefully remind people that they are not alone, and there are places to turn in their times of need. Self injury does not discriminate. It affects people of any age, gender, race, sexuality, rich, poor. It affects people of all walks of life. If a person tells you that they self harm, let them know that you are there for them, without judgement. Encourage them to be safe and to speak to a medical professional. Remind them that they are not alone. Some Tender Loving Care can go a long way! Be kind to people, you don’t know what struggles they face on a daily basis. Everybody is just trying to feel their way through life.

Below  I have linked some useful sites for information and contacts

Childline: 08001111

Samaritans: 116123

Breathing Space: 0800838587 (open 6pm – 2am Monday – Thursday, 6pm Friday – 6am Monday)

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

http://www.lifesigns.org.uk/

https://www.selfharm.co.uk/

https://www.mentalhealth.org.uk/publications/truth-about-self-harm