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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Crohn’s and Colitis Awareness Week 2017

Friday 1st – Thursday 7th of December is Crohn’s and Colitis Awareness Week.

Check out http://www.crohnsandcolitis.org.uk for more information, tools and resources. Crohn’s and Colitis UK is a charity organisation that has been working for 35 years to provide people with help and support as they learn to live with this invisible illness. 

Be nice to one another, you never know what other people are dealing with in their lives. As you are trying to feel your way through your life, other people are trying to do the same. 

Spread awareness and help give invisible illnesses some visibility. The more people who are aware, the more understanding people who really need it can get. Hopefully, one day, a cure will be found but until then start conversations, help end stigma, help people with invisible illnesses get some understanding from society.

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/

It’s been a while….

It has been quite a while since I last blogged. Very nearly a whole month to be exact. I have just not been able to do it. I have not been feeling very well lately, at all. If you know me, or have been reading my blog you will know that I find a lot of things difficult but I have been trying to be more positive about things. I have been trying working on my health (my physical health, mental health and emotional health) and my general wellbeing. Like everything else on my journey, I was succeeding in some aspects and not so much in others. That is until last month, when I feel like I just hit a wall.

At the end of September the pain nurse advised a change in medication as the one I was on did not seem to be doing anything for my pain, but just giving me a bunch of side effects. Some of which were very difficult for me to cope with. So I had to decrease those tablets (let’s call them Tab A) and then start taking and increasing another tablet (Tab B). I was then taken off of Tab B after a short time as I had a bad reaction to them. So I was to start again – decrease Tab B to then start and increase Tab C. However, I also had problems with Tab C as I was taken off of a tablet I have been on for over a year to go onto this new one. So while I was coming off of Tab B, and starting Tab C to then increase that dosage, I was having to decrease the pill I have been on with the aim of coming off that one. All medication has side effects so I’m sure you can imagine the effect that all these medication changes have been having on me. As well as this treatment plan I have been issued other tablets to try and help me sleep. I stopped taking them though as they made me feel worse. No lie, my bedroom shelf is starting to look like a pharmacy! My GP told me that I was going to “be in for a rough few weeks” with all these medication changes so I knew it was going to be challenging.

Even with the knowledge that the changeover of medications was going to be difficult, I still took it quite hard. I have been very cold, but then very hot, the pain has increased, the little motivation I had disappeared, my appetites changed, my skin has changed, I’ve been emotional. Most days I stay in the house, usually in my bed. I feel like I have no ability to leave it. I feel like it is too painful. I feel like I do not have the energy. It has been hurting me to colour in, which has been a go to activity for me for years. If I feel stressed or need to calm down I go to the colouring books, with my felt tips and take the time to colour in. It has been a ‘coping technique’ for me for a while now. I was starting to find it difficult as I feel my coordination has been lacking recently, but then it was still able to keep me distracted for a while. My problems now include it feeling like the pens are rubbing off my fingers and it hurts to hold the pens.

I have found it difficult to go to my yoga/pilates class and I haven’t even been going to walk through the pool. I think it is a mixture of feeling ill and having no motivation. At my last pain management physio appointment the nurse told me that she wasn’t going to be giving me another appointment at this time. She would like to give me time to try and get my medication sorted and settled before refocusing on attending my classes and doing the specific exercises that she gives me for “homework”. I’ve just to continue trying to move so that I do not stiffen up too much. Instead, I have to focus on keeping in contact with my friends and family and spend time with them when I can. She feels this will be more beneficial for me at this time. Once I am more settled then I have to phone her and make another appointment for us to set more physical goals. She also told me that I have to “stop being so hard on myself!” This is something that I have been told multiple times throughout my life. It is just very irritating feeling that you used to be able to do something, or should be able to do something and cannot now. I don’t know why but her telling me this seemed to really resonate with me. As I said, I have been told this a thousand times before. I don’t know what made that time any different? It got me thinking though. I think in some ways, on top of feeling rubbish, I am also punishing myself for not being able to do things. Which is not really fair to myself. I had been making an effort. I was having victories. I just need to take some time to feel a bit better, and hopefully get my medication and sleep sorted out and I’ll be back on track. This could be, or is, just a bump in the road on my journey. Just an obstacle to overcome.

I decided to get a flu vaccination this year too, which in hindsight was maybe not a good idea when I had so much going on in my body already. However, hopefully I will have protection from the flu! I will post more about my decision to get the flu jab another time, I think. On my last GP visit I told him that I was still feeling horrible and we spoke about some of the symptoms/side effects I have been experiencing and he checked me over. I have ‘flu like symptoms’ and he has given me anti-inflammatories to take as I have been having really bad earache and I also have tablets to take to protect my stomach lining with all these changes. My shelf is even more like a pharmacy unit! I am lucky though, throughout all this my GP has been really good and he is listening to me and he is having me in to keep uptodate, and to “keep an eye on things.” Especially while I am so run down. However, on a positive note, I had very good blood pressure! I feel this is a victory!

Things still feel very much up in the air for me. I still feel rubbish all the time but I also feel like I am being neglectful in not blogging. As well as feeling ill, I feel like the longer that I haven’t posted, the harder it is has been to get back into it. I was really hoping that once I started something would come, and it has! Another victory! I have been trying to be easier on myself, and I have been trying to do things that aren’t staying in bed all day. Try is all I can do though! Anastacia’s lyrics,

“Cause I’m sick and tired

Of always being sick and tired,”

keep going through my head. I know the song is not about being physically sick and tired but I feel the line is very apt for the way I am currently feeling! I am “sick and tired of always being sick and tired!” This post is my first step to try feeling my way through this hurdle, the first try at getting over that bump in my journey.

(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.

Filtered and Unfiltered Lives

This week I’ve been thinking about how people portray themselves to other people a lot. My thought process then going onto social media and how you can get a glimpse of a person’s life through it.

As a person with a condition that is largely invisible, I find it difficult to know how to act in situations. For example, do I ‘pretend that I am not is pain’ and then end up suffering for it later on or do I take things slow or do things in such a way that may be better for my pain and potentially be a ‘burden’ on my family, friends, colleagues, anybody really? It is made especially difficult with expectations of society’s. People look at me and see a young girl, so I must be fit and healthy. By looking at me, you wouldn’t necessarily think, at times, that there’s anything ‘wrong’ with me.

Through media sites such as Facebook and Instagram, this generation seems to be the ‘selfie’ generation. Like most people my age, my phone is full of selfies, most of which I do not post online. Another factor of selfies, or any picture posted, is that they are edited and so many filters are added to them. I think this can be such a good tool, but I also feel it can be damaging. I like to play with editing tools and filters as much as the next person. They are great! You can take a picture and make it black and white, make it look bright, make it look vintage – so many different options. I am all for the creativity that this can induce. You are taking something, and making it ‘better’. This is also encouraging self expression which is so important. Lines begin to be crossed however with the selfie. People can take this picture of themselves and through this medium of ‘self expression’ actually produce an edit of themselves that is the furthest thing from who they really are.

The thing with a selfie or photograph is they are mainly ‘staged’. I take pictures of everything. I take selfies to remember things, to make things a memory, because it is nice, to keep record of my symptoms, to keep record of my journey… everything. I like nothing better than an ‘action shot’, I feel it is more true to life. When picking what photograph to post online, you are choosing a part of your life that you want to show your friend list. This can be something that is true to your life, or can be constructed in such a way to make people think it is your life, or in a way you wish your life to be. All these options are fine. However, I think it is important to remember that everything you see, especially on social media, is not necessarily exactly what the situation is. Here is a picture of me, looking fairly good if I do say so myself.

 This is a picture that I would probably post online. I think it looks good. The thing is it is completely fake. I found an app that added filters to photos to try makeup styles and I was playing around with the different options. Then on top of that there is another filter. It has produced this nice photo though. This is the type of photo that it is ‘acceptable’ to post online. Looking at this photo, it looks like I have made an effort, it looks like I have a full face on and I am ready to face the day. Perhaps I could be going out to do something nice. The reality was so much different! Here is what was actually going on at the time.

 I was in a lot of pain. I could not move from my bed. I was so sore and frustrated with myself, and with my body, that I had cried. My hair hadn’t been washed in an unmentionable amount of time. The only thing different between the two photographs, other than the filters, was I managed to change position so that I could take a photo that I could use to play on the app with. This was a way for me to distract myself from the pain etc. The first picture would be a choice in what I want people to see. So this got me thinking why? Why is it more acceptable for me to post picture 1? It’s not true to the situation that I was in. It looks nothing like how I was actually looking at that moment in time. Social media, and how you make yourself up in the day, can be so deceiving. I have an invisible illness and here I am making it even more invisible. It is as though I am hiding it. Why? Surely on sites that is for self expression which, in my opinion, is exactly what sites like instagram is for, i should be able to post true pictures. I have fibromyalgia, it is part of me and is shaping/has shaped who I am. Why can I not post a picture showing my true situation?


I am not suddenly “cured” because I’ve posted a picture with makeup on, whether that is using a filter or not. Maybe I am trying to make myself feel better. Maybe I am trying to make an effort for my own self esteem and confidence. Maybe I am pushing myself a little to go through my day in a way that I would like that is not fully dictated my my body or my emotions. The amount of times I have heard, “but you don’t look ill” or  “you can’t tell there is anything wrong with you”. I feel like replying that’s good because “that’s the look I’m going for”. Likewise, not every day is going to be a day I can’t move from my bed. However, I just feel that it shouldn’t be an issue if I choose that as a photo to share. Whether it is my own head making that issue or not. It encourages stigma and discrimination


On the whole I can be quite open about my conditions and my struggles. Even through the pictures I post. However I am guilty for being more likely to post a photo that has a filter or posed in some way. Part of the reason I wanted to start blogging was to write about my experiences, my thoughts and my feelings to try and make sense of them myself,or to (hopefully) help another person in knowing that they are not a lone there are other people out there with similar struggles, or fighting their own demons. As a result, I think I have to be open about my own life, especially here… Otherwise, what is the point? I want my blog to be a  safe space to tell my story, and for others to share theirs if they choose to. I am just feeling my way through life, the same as everybody else. I do not want to be judged on how I am or how I look in photographs. Personally, I think it’s important to share more of the unfiltered life, especially when it comes to invisible illnesses and mental health awareness. It can help start a conversation, spread awareness and help with issues of discrimination and stigma. However, it is OK to post pictures with filters over them, it is OK to edit those selfies. Likewise, it is OK to keep that photo unedited and unfiltered. If it’s a selfie, it’s going to look good either way, because it is going to have your beautiful self in it. Just remember to be kind. People are, or are not, editing and filtering their photos for a reason. Be happy that a person is showing you part of who they are and their life, or how they want their life to be and be seen. You might only be getting a small glimpse, but somebody has specifically chosen that moment, to share.