Hi Everyone – this week I thought we would have a bit of fun, so a few weeks ago I asked people on my social media to name a song or song title which reflected their life with chronic illness.
I had some great answers which I have shared below with some of my own. We have a combination of light-hearted picks alongside ones with more meaning. Some ballads, some upbeat and some a little of something in-between.
Remember some of the picks have been influenced by the title of the song, others the meaning behind the song itself.
Annie Lennox – A Thousand Beautiful Things
Chumbawamba – I get knocked down, but I get up again (Tubthumping)
Daniel Bedingfield – Gotta Get Thru This
D:ream – Things Can Only Get Better
Elton John – I’m Still Standing
Faithless – Insomnia
Foreigner – Cold as Ice
Goo Goo Dolls – Best of Me
Imagine Dragons – Believer
Journey – Don’t Stop Believin’
Katy Perry – Roar
Labi Siffre – Something Inside So Strong
Lady Gaga – Million Reasons
Pink Floyd – Comfortably Numb
Queen – I Want to Break Free
Rachel Platten – Fight Song
Red Hot Chili Peppers – Can’t Stop (dedicated to my Tourette tics)
Taylor Swift – Out of the Woods
The Beatles – I’m So Tired
The Cranberries – Zombie
Did you enjoy the picks? Are there any you would add to the list? If so, leave a comment and I will add them to the list.
I’ve been toing and froing for a while now about writing this particular blog post, but after last week’s article about losing my blogging mojo (which you can find here) I feel it is important to speak about one of the issues surrounding why this was the case.
As I explained before I lost my blogging motivation for a while due to a number of things coming at me all at once (I am glad to say at this moment in time I have started to get it back!), but one of those triggers for me was the land of social media.
From one chronically ill person to another – you do realise being chronically ill doesn’t make your exempt from being kind right?This is a snapshot of a tweet I posted back in August after having someone on social media be nasty about a piece I had written for something outside of my blog. A piece I wrote a few years ago before my blog started, that had been re-shared by somewhere else, whereby I spoke about my very personal chronic illness journey. Normally something like this wouldn’t bother me, we all have opinions right and we are all entitled to them, but on this particular day I had been to hospital and received a health update which I was trying to digest, jumping on to social media for some gentle relief. It was here I stumbled upon to the words of someone who didn’t like the article I had written, and the comment they left was horrible to say the least. No feedback or opinion of how they saw a situation differently, just pure nastiness. What made this worst was it was from somebody who has chronic illness.
Having someone living with chronic illness be the perpetrator as stupid as this sounds was more hurtful than it coming from an abled bodied person. Why? Because whilst an abled bodied/non-chronically ill person has no idea how it feels to be chronically ill – a chronically ill person does. We don’t live like for like lives even with identical conditions, nevertheless we can sympathise with the rocky roads we all face. It was at this point, I wondered why I was bothering, what was the point? My mental health was worth more, so I took a step back.
It would be easy to sit here and say, oh maybe that person was having a rough day and they were venting at the wrong person, but I had just had a rough day which was made worse by this random person. Because in the same way I don’t know what that person was going through, they didn’t know what I was either and that is the very point. When we choose to engage with posts on social media and want to vent or be short-tempered, we are only thinking about our own bodies and more importantly our own minds completely dismissing the person on the receiving end, and what their minds do as a result.
Being chronically ill doesn’t give us a free pass to be rude, nasty or aggressive to others – and it especially doesn’t give us the right to do it to others in the same boat.
I know a lot of people may read this and think, well don’t write things if you don’t want it criticised, or that I should develop a tougher skin. How about we all be kind instead, it’s not hard.
Social media can be such a positive outlet in the chronic illness community, but it can also be incredibly lonely. When people choose to blog or write articles or share their personal stories, they are giving a bit of themselves to show others in the community they are not alone in their thoughts and feelings which is a very brave thing to do. What people need to also remember is most people who do this use their time and precious energy to help others normally at no cost simply because they care. Do you have to agree with what someone has said? Absolutely not. Can you have a different idea or share something that works for you? Of course. Is there a way of doing this? Yes, it’s called being respectful.
Criticising people when they give tips that haven’t worked personally for you, or discrediting how someone describes how their illness makes them feel, even arguing with how someone has used the wrong terminology is something we should all be mindful of, because we are all different. We as chronically ill people need to understand that most of our experiences are not going to be carbon copies of each other – we are all living with different symptoms at different severities, with different living arrangements, with different families and different priorities.
I can only talk about my own personal experiences. Doesn’t make me right, but it doesn’t make me wrong either – it makes it mine, my body, my story and I am going to discuss it my way. I am not an expert on any of my conditions, nobody is, but I am an expert on myself.
If you don’t like what I or somebody else writes that is absolutely fine, but give us feedback and support, not hate. The point of the chronic illness community is to bring people up, not put them down, and we all have a role to play in making that happen.
Oh, and to the person who felt the need to be so nasty – I hope it went in some way to making you feel better about yourself, because after this post I sure do!
Now that my rant is out the way (phew!), my next blog post we are going back to something a bit more fun. On my social media (the dreaded social media) I asked people to name a song title that represents their life with chronic illness. I plan on sharing these next time with a few of my own – but if you would like to take part feel free to message me on Twitter or on the email in the contact tab.
It’s been a few weeks now since I sat down at the computer and opened up my blog. Not because I have been particularly busy or because anything major has been going on, the reality is I just haven’t wanted to. Sounds a bit to the point I know, but I have always wanted this blog to be about honesty so here is mine.
Maybe I should be a bit more specific I haven’t wanted to, not because I am bored with the blog or anything like that. I have just felt like I physically and mentally couldn’t face creating a post. That my motivation had disappeared.
I think this was a result of a combination of things that seemed to come together at once therefore maybe hitting me harder than if each one had occurred separately and I lost myself for a while. Lost my focus, my vision and what was making me happy.
Firstly, as my last blog explained I went to hospital for my first face-to-face appointment in 18 months give or take – more than that it was my first proper trip out of my home for 18 months too. Of course this had an impact on my body in the days that followed (although thinking back I wonder if this impacted me for longer than I even realised). Secondly, I received another two diagnoses and whilst this hasn’t affected me emotionally, I think there was this internal mental battle of ‘when is this going to end’ to contend with. Thirdly, I had an extreme flare-up of one of my conditions that drained my whole being, physically, mentally, emotionally and in all ways possible. Finally, my writing bits received a barrage of rejections, let’s say ‘inputs’, people taking advantage, all wrapped up in a lot of me giving and not getting anything back, all of which couldn’t have come at a worse time. Reading this back it sounds a little cryptic, but I’m planning on writing a post on this specifically next time.
Having all these things hit me practically at once, I think I got inside my own head and the physical and mental exhaustion I would normally feel anyway extended into emotional exhaustion too. I found myself getting into the mindset of what is the point, why am I bothering? What is any of this really achieving? I had/have all these blogging ideas and things I want to share and write about, but my mind couldn’t find the words, my body couldn’t find the strength to sit and get on with it. It was in this moment I thought that maybe I had lost my ability to express myself, my ability to blog and maybe this was it.
We are a few weeks down the line and the fog in my brain has started to lift and I have started to see more clearly what the real issues are. The issue isn’t blogging because I love this blog and I love the content I have created for it. The issue is me not practising what I preach and not giving myself a break when the inevitable flare-up occurs. I forget how much living with five (plus two more) chronic conditions takes it out of me and even when I am in a flare I battle to carry on, no matter how much my body is saying no. As a result there is only one way I am heading – for an almighty crash!
Now more than ever before this is something I need to work on – especially as we have now entered the period of the year that is always the most difficult for me – Autumn. The change in light has an horrific impact on my health in general including my energy levels and ability to function. Therefore I know flares are coming and I need to learn to balance things sooner rather than later.
But maybe more than anything the issue is me putting myself at the end of the queue when it comes to care. Helping others, endless to-do lists, people’s opinions, not letting people who show no interest in my life down, this blog – all come before me and my health.
So what am I going to do about it?
Take the time to prep for the Autumn/Winter months by revisiting my own blog post here – and take my own advice!
Purchase a new SAD lamp/light to get that much needed light which will help me through the darker/colder months and ultimately my motivation
Cut the crap from my life and all the things that don’t make me truly happy
Get back blogging no matter how small – Blogging is such an important creative outlet for me and the benefits it brings to my mental health and my ability to accept my conditions are immense. They say to beat writers block and motivational setbacks, you just need to write, sounds silly right? But doing this blog post today in this manner has really helped.
Give myself adequate time away from my blog and everything related to it – To truly put myself first, I need to have days/weeks where I completely disengage from my blog and social media. I am actually somebody who is rarely on social media, but even so I try to pop on it at some point everyday – this is really not helpful! Taking a step away on a regular basis will allow me to focus on what really matters.
Go with the flow – A few months ago I talked about having a structure with my blog which consisted of having a week off to focus on other writing bits and pieces. Up until a few weeks ago this was working perfectly, and I would love to say I am going to go back to that, and maybe I will. However at this moment in time whilst I am still trying to get my mojo back I don’t want to put any pressure on myself, instead I want to blog when it feels right for me, however often that may or may not be.
Whilst this blog post may seem a little jumbled, (it is a reflection of my jumbled mind), I hope it has shown the honest side of blogging with chronic illness. There are times when you are so motivated all you want to do is write, write, write, like there isn’t enough space to get your thoughts down. Other times external factors – predominately health related – make you stop and re-evaluate everything you were striving for. It doesn’t mean it’s over, it means you just need to stop and take a breather from time to time.
A few weeks ago I mentioned in my I Am Me: Positive Affirmations and Happiness Tips blog post (here), that I was preparing to go to hospital and today seemed a good time to share with you my experience of visiting a hospital for the first time since the pandemic started.
I wanted to share this blog post not only because I wanted to share my health journey, but because I wanted to help others like myself who may find their face to face appointments have started up again, and who are therefore scared at the prospect of attending, in the hope it can can give you some peace of mind with what is to come.
Firstly let me point out this is my experience at a hospital – this doesn’t mean you will have the same experience as me, and therefore you should contact your place of appointment with any concerns you may have.
The Last 16 Months
Like many people for the last 16 months or so, my consultations with my specialists have altered dramatically. In the early days of the pandemic the hospitals requested I had telephone appointments as opposed to my normal face to face ones, which provided major relief knowing I didn’t have to attend in person. During this time one of my newer conditions developed rather rapidly and I was placed on medication with more regular contact with the consultants, turning my review from every 6 months to 3. It was then they said they wanted to see me face to face.
Face to face appointments quite frankly filled me with absolute dread, I have hardly been out of my home for the past 16 months so the thought of going to hospital where there would be sick people was not something I was volunteering for. So, I kept putting it off and getting around it by changing them to phone appointments (which I managed to do for a while) until I had no choice but to go.
My Hospital Trip
The first obstacle for me in my hospital trip was getting to the hospital itself. I do not drive and neither do those close to me. To make matters worst I do not go to a hospital in my local area due to my requirements. So, it was organised that I would go in a community car – essentially like a taxi – which is run by volunteers and that you pay for, but who sit and wait for you in the car. My driver wore a mask which was reassuring on the long drive, as did I, then I got to the hospital.
It was rather strange turning up at a hospital and seeing so many people for the first time in over a year. I won’t lie, I was a little startled especially as some people were maskless on the walking up to the front doors, and instantly taking their masks off on their way out – no thought of the people coming towards them. Nevertheless, once inside the hospital there was a sanitiser station and masks you could take if you didn’t have one (maybe that was why there were people without them), and markings on the floor for a one way system.
Of course, my clinic couldn’t be on the first floor so I had to go in the lift (which luckily was empty), but nonetheless had markings on the floor to give you space and to face away from others if needed. Once inside my clinic there was another sanitiser station and the seating was for a max of 8 spaced out. Thus giving reasonable amounts of space away from other patients. The staff were all wearing masks as were the other patients, and people respected other peoples’ space without complaint.
I had felt really nervous going into the hospital, especially as I knew I would have to remove my mask in the appointment due to one of my symptoms, but I was surprised by how comfortable I was in the end due to the kindness of the staff and the patience of those around me. Probably my most uncomfortable part of the experience was going into the hospital and walking through the corridors (as there always has to be one or two who cannot follow simple instructions of a one way system!), but overall my stress levels subsided as the trip went on.
What I found helpful is my particular hospital (I am not sure if this is the case everywhere), had a video you could access online beforehand which showed you what to expect at the hospital – from the layout of the floor markings to the sanitiser points – which helped in showing me things were in place. If you have this facility, I would recommend using it just for peace of mind. I would also recommend taking your own sanitiser, face masks etc. because if you are like me it is nice to have your own things as a way of feeling prepared.
FYI – Make sure to check your face mask is the right type of mask to have in a hospital environment, so you don’t have to change when you get there.
So, while we are talking all things hospital, my appointment went well. Well as well as a chronic illness appointment where there is no cure can go. I have received another two diagnoses (woo hoo – I am collecting diagnoses like some people collect stamps!), and I am being sent for a scan and more bloods. Oh and a whole lot of monitoring!
At this moment in time I am not ready to discuss these new diagnoses. I think for now I would like to let this sink in for myself, because as much as social media and blogging may make you believe – you really don’t have to share everything.
Aside from some missing blood results and a lost letter to my GP (cannot wait to have to sort this out!), for me this was a good appointment. Not because I want these things to be the case, but because my suspicions were confirmed and therefore I am not losing my mind. But more than that my consultant listened and was kind and those things count for a lot. It really is something when you get to a point in your health where feeling listened to is all you want and need – it really makes the difference – now if only I could get my GP to do the same….
The reason for this post today was to help anyone feeling anxious about any upcoming hospital visits to feel more positive and relaxed. I hope I could do that and show it is not half as scary as you might have first thought, but to recap..
See if there is any info online before you go such as videos to give you an idea of what to expect
Take your own bits and pieces such as hospital approved masks and sanitisers
Follow any guidelines
Practice those positive affirmations – see start of this post
Focus on what you are doing not everyone else! I didn’t mention this earlier, but I really think you need to remember the only person you can control is yourself. Don’t worry about what others are doing, just focus on what you need to do and that is more than enough!
I also wanted to take this moment to thank anyone who wished me well before my appointment – your kind words mean the world 🌍❤ !
It’s another week and another blog post, and today we are continuing with our single life series and part 2 of the challenges of dating. For anyone who missed part 1 you can find it here.
Last time we covered the challenges of how to find a date and when to tell someone about your illness, this time we are looking at the challenge of how to handle a date and how to manage symptoms when on a date.
Challenge 3 – Handling a date
So you have secured a date (well done you), and you may or may not have made them aware of your condition/s, but now you have the tricky task of getting through the date, symptoms and all. The problem with a first date is it can be stressful whether you realise it or not, and the problem with chronic illness is the fact it loves to feed off stress. You may be thinking well what is the point then, but you really shouldn’t allow this to put you off.
Probably the most stressful part of a date is the fear of the unknown, the loss of control in knowing what is to come, so why not take back some of the control and take the lead in the actual date planning yourself. By taking the lead in planning your date you can be prepared for any potential issues that may arise and try to work around them before they happen. Going forward once you are more comfortable with your date and vice versa you can let them take more of the reins as hopefully the stress will subside, and they will understand your needs better.
By planning the date yourself you can look at factors which are more inline with what your chronic illness requirements are. Do you find your energy dips as the day goes on? Then opt for a daytime date. Are your pain levels high? Then choose an activity where you are sitting down. Feeling lethargic? Then sitting in a warm indoor environment probably won’t help, so why not suggest going for a gentle walk? Is eating a problem? Why not plan around that incorporating or leaving out food depending on your needs? Personally for me I have digestion issues so eating whilst stressed is not a great idea when I get mega bloating, but equally I have several times a day where I have to take medication with food, so maybe a snack rather than a four course meal would be a good middle ground.
I want to also point out that with current Covid times it is not possible for everyone to just go out on a date. I would class myself as one of those people, yet this doesn’t mean you or I need to miss out. As I mentioned in my last post there are many interactive things you can do online, or simply having a virtual date over video chat is more than enough. You can even set the scene to how you would like it – all from the comfort of your own home. Alternatively if you want to meet in person (and it is safe to) opt for outdoor settings still basing it on your needs.
Another key element to handling a date is to set yourself a time limit. Now you can choose to tell the other person this or just keep it to yourself to give yourself a target. Give yourself a realistic timescale based on how much energy you think you will use and try to bring it to a close before it gets too much. But most importantly stick to it! It can be difficult when you are getting on with someone to want to leave, but if you know your body needs it there is no harm in making sure it finishes when you planned it to. Plus, if you like each other that won’t matter in the long run as all you need to do is arrange to speak again.
Of course, as with all things it is personal choice – our bodies are all different and we all tolerate things at different levels. You may feel the payback is worth it or equally you may want to end the date even sooner than you planned due to any aggravating symptoms – there is no right or wrong.
Challenge 4 – Managing symptoms on a date
Let’s be honest for a minute – you can plan, plan, plan and still be symptom overloaded. So, what if this happens? My suggestions are as follows:
Do a bit more planning (ahhh! This is never-ending!), and try to rest up the day before, and prior to the date
Take any aids you need with you on the date e.g. medications
Research menus if in a scenario where you will be eating
Take time out on your own – Just because you are on a date doesn’t mean you have to be glued to them, you can take some time to regroup if you need time on your own. Make excuses to go to the bathroom, or take a phone call, or if online move away from the screen and have a breather
Practice relaxation techniques – This is hugely dependent on the symptom bothering you, but you may find practicing mindfulness and meditation helpful
Alternate between standing and sitting – Mixing up the activities on your date may help with symptoms such as tiredness and pain
Keep snacks and drinks to hand – This can be helpful with nausea, dizziness and blood pressure issues
Cut the date short – If symptoms are too much there is no shame in cutting it short. Let’s be honest this is probably way better than carrying on and leaving an impression you are not interested because you are too distracted
Be honest – This is probably the thing that will benefit you the most in a dating scenario. Because let’s face it, it is obvious when someone isn’t enjoying themselves and unless you are a A-list actor you will probably have it written all over your face, and if you like them you really don’t want them thinking it is because of them. Being honest also allows your date to really understand not only you as a person, but your illnesses too. As cliched as this sounds you will know if they are the right one for you because they will be the one who accepts all of you – chronic illness and all – and they will be the one who sticks around long after a symptom filled date!
Here we have it my final challenges of dating with chronic illness. I hope you found this posts helpful and that they resonate with those of you who are single pringles like myself. This isn’t the end of the single life series as I would like to share further posts of my own experiences of the single life with chronic illnesses, and more posts surrounding dating, relationships, body changes and sex – so stay tuned. If there are any topics you would like me to cover in this series, as always just let me know.
Today’s blog post is a little different from what I had originally planned. This is because the last week or so for me has been filled with many days of illness and symptom flare-ups, and therefore today I wanted to do a post that was simple yet positive.
In addition next week is my first face to face appointment at the hospital since the pandemic and I need this week to be as relaxing as possible. These things combined have inspired my topic for this week: Positive Affirmations.
Positive Affirmations are statements that have meaning. People use them for a number of different reasons including to motivate, to encourage, to inspire, to be happy, to heal and to change the way they think and feel. Positive affirmations are also believed to rewire the brain as they work to challenge any negative thought processes we may be harbouring.
Traditionally affirmations are said repeatedly aloud or inside your head. They are often short, used in the present tense, include the word ‘I’ and are of course of a positive nature! Examples include:
I am happy
I am confident
I am strong
Needless to say you don’t need to stick with tradition, you can say them to yourself whilst looking in the mirror, you could write them down, you can use them in longer sentences – in any way that makes them meaningful to you. The only suggestion I would make is you keep them positive and that you make them in the present tense because after all it is about feeling good in the moment – not in a months time. Examples could include:
Today is going to be a great day
I stand up for what I believe in
I can become anything I put my mind to
In line with the fact I have hospital next week I thought I would share some of my own positive affirmations to prepare me for what is to come.
I am calm
I am worthy of good health
I am important and therefore will be listened to
I love my body
In addition to affirmations I am going to spend the week finding little pockets of happiness to pick me up from the week I have just had, and to keep my mind productive knowing what’s to come. It sounds strange, but sometimes I think how do you make yourself happy? What constitutes as happiness? Here are some ideas:
Write a gratitude list – For more on gratitude lists read my previous blog post here
Get outside – Even if this is just sitting at your door or window.
Laugh – It’s difficult to just roll around laughing, but even watching some funny videos or programmes can help to realise some feel good hormones.
Practise kindness – Do something nice for someone else if you struggle being nice to yourself.
Embrace the small things
Exercise – Highly debatable with certain chronic illnesses!
Do something you love – This doesn’t have to be major, something as small as having a cup of tea or a bath is more than enough.
Here we have it my list of happiness inducing ideas and positive affirmations. If you have any affirmations you would like to share I would love to hear them.
Another social media notification of yet another university friend getting married – woo hoo! I think this now makes me one of the only remaining singletons of the people I grew up with. Of course there is nothing wrong with being single, singledom definitely has it’s perks, and there are many an individual who have no desire whatsoever to be in a relationship, but what if you have?
In this modern world of dating there are many formats when it comes to being in a relationship. There is also a strong sense of not needing to be in a relationship to be happy. That is all great and I fly the single flag for all the singletons out there, but that doesn’t mean I don’t want to experience one myself.
I am in my early thirties and I can count on one hand the amount of ‘relationships’ I have had in my life. Quality always tops quantity, but the problem is I haven’t had quality either. Part of this was because when I was younger I thought I would have all the time in the world to meet someone, and then I became ill. Being in your mid-twenties and feeling so terrible, quite quickly puts a stopper on all things social and as a result meeting anybody new. I guess as well as dealing with my symptoms, I was waiting for that day when I would suddenly feel better, which of course never came. Before I knew it a lack of dating went from months to years and as I now know I will never get better, it leads to the question how and when am I going to meet someone.
Putting aside the recent times of Covid, dating is difficult, even for non-chronically ill people, but being ill adds that extra level of pressure. From experiencing symptoms on a date, to knowing when and how you tell your date about your chronic illness life – there are many a challenge to have to contend with…
Challenge 1 – Where to find a date
As we have established being chronically ill equals not being particularly social (or in my case, not social ever!) so one of the most popular options for modern day dating is the internet. Internet dating is a very hit and miss scenario – I know people who have met their husbands/wives on dating sites and equally I know people who have only met idiots. My experience has been filled with not so great people, I even had one guy change his dating profile after speaking to me so it read that he was ‘looking for someone healthy.’ What a gent! Even without mentioning my illnesses though I found trawling through profiles incredibly draining and would find myself exhausted. But like I said it does work for some! If internet dating does appeal to you, but the type of sites you are using are not working then how about trying disabled dating sites instead. Disabled dating allegedly cater for both disabled and non-disabled people, but the beauty of sites like this is people are more likely to be accepting of your situation and that awkward conversation hopefully becomes less so.
Another option would to be to a date through others. This can be difficult if you don’t have many pals, but if you are lucky enough to have matchmaking friends this could save you the stress of trying to find a date yourself. Hopefully your friend would know you well enough to know the right type of person for you too!
Option three would be meeting someone through an activity you enjoy to establish a joint interest from the get go. Now I for one know how difficult this is with not only chronic illness, but also Covid and as someone who hasn’t be out their home for anything other than medical appointments and short walks for the last 16 months – this isn’t easy. One way of doing this would be to find interactive events online (hopefully such things will be accessible after restrictions ease) and to engage with these. Obviously these won’t be designed for dating, but it will help in building your confidence with talking to others in an environment in which you will be comfortable. Keep an eye out for upcoming posts in which I talk about different interactive hobby ideas.
Staying on the interactive theme for dating I have recently discovered such a thing as online speed dating. This could be a great way in ciphering through the rubbish without having to trawl through tedious profiles, all whilst staying in the comfort of your own home. Of course this could be extremely fatigue inducing, but it is a worthwhile option nevertheless and definitely something I will be considering going forward.
Challenge 2 – When to tell someone about your illness
This is a very personal and individual choice that only you can decide. Do you get it out in the open from the get go, or do you wait until you feel comfortable enough with someone in the hope they will understand better? Of course depending on our specific chronic conditions ‘hiding’ it to begin with may not be an option based on our symptoms and condition management.
I have had experiences where I have leapt in and revealed my situation early on and was then ridiculed for it, and equally kept it to myself and was looked upon as not being honest.
I think sometimes it is a case of sussing somebody’s personality and what their values are in life. It is also important to know what they want from life too and whether that aligns with what you want. If someone is looking for a party buddy who wants to go out every night of the week, it’s probably a no go – I’ll be too busy sleeping! That said I think initial chatting (online or other) can be a great way to find out if this is somebody you feel comfortable with and moving forward divulge more details about your chronic illness.
Some people may not be comfortable with this, but the problem about chronic illness is the fact it is just that – chronic. It isn’t going anywhere, or at least not anytime soon, therefore it is part of our lives whether we like it or not. This only signifies the importance of finding someone understanding and accepting even more so.
Like with most things in a chronic illness life there are downsides to dating and sometimes this can rear it’s ugly head in the form of telling someone about your condition/s. As I mentioned earlier I have had people drop me quite quickly after hearing about my health (enter the knob who changed his profile) and I have been judged with all the usual flattering comments – ‘But, you don’t look ill,’ ‘Are you better yet?’ – That is always a fav, like I am going to awake one morning and it will be like nothing ever happened. The sad thing about dating, chronically ill or not, is that not everyone can like everyone and therefore people can and will judge. Sometimes you can bare your soul and sometimes the response you get may not be the one you want.
Saying that it is also about giving people a chance, not everyone you meet will be a grade A ****head. People can surprise you. Sometimes it is about taking a risk and putting yourself out there. It’s also about being honest about your illness and how it affects your life, but pointing out it is not your life. Sometimes when we are ill, it can be hard to see anything else in life, but we are more than an illness and sometimes it is about reminding ourselves of that not just potential partners.
So, our first two dating challenges are down – more to come in the part 2 instalment. FYI – The part 2 instalment is now available here. I don’t know about you, but I struggle with reading (and writing) big blog posts, so I thought on this occasion I would split this into two sections. Next time we shall focus on the challenges of handling a date and managing symptoms on a date. Make sure to follow the blog or my social media to look out for the next part and if there are any particular challenges you would like me to feature – make sure you let me know!
An Introvert – A shy, reticent person. A person who is often described as quiet, reserved, passive, rigid, silent.
I am happy to say that at the age of 33 I am finally able to come to terms with the fact I am an introvert. Come to terms sounds a little odd when it is only just a word, but the connotations we put on being a shy person in society means that ironically, we often shy away at the notion of being one. Being an introvert implies a level of embarrassment often put upon us by extrovert people who are ‘so out there’ and confident that nothing you do can quite compare to their lavish lifestyle and personalities.
Whilst I now accept my introvert self there has been many moments in life where this has been difficult, fundamentally in regards to my health and interactions with others.
Anxiety vs Introversion
It is no secret if you have been following my blog or have read any of my previous mental health posts, you will know I have suffered with anxiety for the majority of my life. Anxiety in the form of generalised anxiety and OCD, but predominately social anxiety.
Having anxiety has meant I have always been someone who has avoided social situations, kept out of the limelight and tried to be invisible in group scenarios. When I was younger these situations would give me physical symptoms of nausea, shaking, uncontrollable butterflies and notable fear. So much so it stopped me participating in the same way with things as my peers would and interfered with my day to day life.
When I got a bit older I improved and tried to force myself into more social situations. Sometimes this worked and sometimes it didn’t. Sometimes I found myself experiencing the overwhelming symptoms of my social anxiety and sometimes I found I just didn’t enjoy being in these situations.
Yet I would push and push myself because that is what everyone around me wanted me to do. Being so quiet wasn’t healthy, being so painfully shy was not going to get me anywhere in life. Not wanting to engage with people was clearly a huge mental health issue waiting to happen. So, I would continue to force myself to please those around me even though I knew it wasn’t want I wanted.
It was only during a workshop I attended for anxiety and depression that this mentality changed, as the facilitator said something that changed my life. He said there was a big difference between wanting to be social and having anxiety hold you back, and just not enjoying being overly social. It was in this moment it hit me, yes in group scenarios with lots of people I didn’t know (or in some cases lots of people I did know) I experienced social anxiety, but in other situations whereby there was only one or two others I was avoiding this situations not because I was anxious, but because I just didn’t want to go – being around others was just not something I overly craved. My personality quite simply didn’t warrant being around others all the time.
My social anxiety was indeed a mental health disorder, but my introverted personality was just that an aspect of my personality. It wasn’t necessarily something to be worried about, it was part of who I am. Realising there was a difference between my introversion and my anxiety was incredibly refreshing and as a result helped me come to terms with who I am and not what others want me to be.
I except my introversion why can’t others?
The problem with having social anxiety alongside an introverted personality is the fact people assume the whole of my behaviour is associated with my mental health. Me not wanting to meet up with someone automatically equates to me being too ‘mentally unwell.’ Not that I may just not want to.
Of course being an introvert also impacts on how people deal with my chronic illnesses in general, and how it affects people’s perception on my not only my mental health, but physical health too. Maybe because I am so quiet or passive I must not know my own mind, and if I don’t know my own mind maybe I don’t know my own body or my own health.
Being in my 30’s causes more problems with people’s perception on my introversion because being in your 30’s you are expected to have your shit together and to be an overtly confident individual. That I should be able to take charge of my life and have my life set on this particular path – what people don’t understand is it is my chronic illness that has slammed the breaks on that, not my personality traits.
But that’s just it I am confident in who I am, I just don’t display that in a extrovert way. I don’t feel the need to hold attention in a room, or be the main attraction instead I prefer to listen than talk, I prefer to express myself through the written word, I am comfortable in my own company and I enjoy solitude.
Being in my 30’s and having anxiety is a slightly different ballgame. It holds me back from big social gatherings (although these days it is definitely not a loss), and if I were in a position to work it would definitely change the type of environment I would thrive in. But saying that taking my anxiety away wouldn’t change the person I am. I would still be an introvert.
The positives of being an introvert
It’s funny how much the words often used to describe an introvert are that of a person who is almost dialling it down in life. Someone who is taking a back seat, someone who is often overlooked. I feel it is on the contrary, it is just someone who is living life in a different way.
An introvert, A thoughtful, creative person. A person who I would describe as curious, loving, observant, committed, focused. Something and someone to be proud of.
I feel a slight fraud writing about summer heat when the rain has been pouring down for the last few days. Even so we are now approaching the summer months and whilst many people up and down the country welcome the hot weather, for many with chronic illnesses the heat can be a nightmare.
For some people the summer heat can bring on flare-ups and introduce many unwanted symptoms. You may find the heat actually improves some conditions, but of course this will vary from person to person. However, for those of us who find heat a problem this can manifest in a number of ways including:
Sensitivities to sunlight
Overheating of body
Finding it harder to breathe
Increase in Hay fever/Allergens
Irritation of skin
Struggling to sleep
So, how can we prepare ourselves for the summer heat?
As we know by now chronic illness symptoms are often out of our control, even in the best of times, but this doesn’t mean we shouldn’t do all we can to minimise these effects and try to help ourselves along the way. Remember you don’t need to be sunning yourself on a beach to have heat affect you – even sitting indoors at home when the hot weather hits can be a challenge!
My top tips for staying a cool cat in the hot heat are:
Stay hydrated – This is probably a no-brainer, but for someone like me with gastro issues it can be really difficult to keep drinking. Nevertheless, staying hydrated in hot weather is so important when you are sweating more to stop you becoming dehydrated. Dehydration can increase dizziness, headaches and other nasty symptoms, so remember to carry a bottle with you even around the house so you can keep having a sip.
Pick your outfits accordingly – When the weather is hot we want to be paying attention to our fabric choices to minimise excess heat. Fabrics such as cotton or linen are ideal in warmer weather as they are lightweight and breathable. For people who are sun sensitive remember to wear long sleeved garments and coverings to protect your skin from the sun.
Go indoors – Being a chronically ill person you are probably used to staying indoors and when it comes to the summer heat this isn’t necessarily a bad thing. As a general rule you should aim to stay inside during the hottest points of the day when the sun/heat can do the most damage.
Stay protected – If you have no choice to be out in the sun – always remember to wear sunscreen with a high factor, protect your eyes with UV protection sunglasses and protect your self from brightness by wearing a wide rimmed hat or putting up an umbrella.
Eat well – As well as drinking lots, eating is important too to help with our blood sugars. Heat can make our appetites decrease, so make sure in the times you do eat your eating nutritional food that is easy to digest and has high fluid content (to help with hydration).
Invest in cooling products – Take advantage of any deals you find on products that will help with keeping you cool. For example portable and/or room fans, cooling pillows, cooling packs, neck fans, sunshades for windows, water bottles, facial sprays, cooling towels, neck wraps etc. For those on a budget there are many DIY things you can make yourself to keep the heat at bay. Even wetting a towel may be helpful!
Listen to your body and know when enough is enough – The summer months always put a smile on people’s faces, and because of this happiness it can be hard to listen to a body that is screaming for you to stop. But, unfortunately summer doesn’t mean you can ignore what your body needs. Don’t take your lead from others, listen to your own requirements to keep as well as can be, and weigh up the pros and cons to any situation you are in. Rest is so important in the summer, so don’t forget to factor this into your day as much as everything else.
Here we are everyone, my top tips to staying cool in the summer heat. Like I said before, specific conditions are extremely problematic in hot weather and there is not a great deal that will change about that, but hopefully having some preparation will make it more manageable.
We are in that week of the month where we focus on a chronic illness theme and I have decided that this month I am going to focus on a hobby: Tattoos. Technically tattoos may not be considered a hobby, but designing them and researching them very much can be.
Disclaimer – You should always check with your doctor before getting a tattoo to ensure it is appropriate for you and your conditions – remember everyone is different, so you shouldn’t assume because someone with your condition has had one and was fine, that you will be the same.
It’s important to note at this stage, that not all people are able to get tattoos, or want them even, and in some cases certain conditions may not tolerate tattoos full stop. If you are one of these people don’t be disheartened, tattoos can still give you inspiration in terms of pictures to create, or cute symbols to wear in the form of jewellery and clothing, and even crafting ideas.
If you are someone who can have a tattoo remember to always do your research first, check with your doctor to see if you are able to get one, think about size in order to minimalize pain etc. (tiny tattoos are very in style these days and are great if you want them covered up easily), and always make sure you visit an artist with an excellent reputation and with all the relevant hygiene procedures in place. This is extremely important as tattoos can cause infections if not performed in hygienic environments with professional tattooists.
I personally have two tattoos – the first before I became ill and the second a few years into my illnesses. Both represent things important to me with the second being representative of my chronic illness life. You wouldn’t know it to look at it, but I know it which makes it that much more special. Several years down the line and a few more chronic condition onto the list, I would one day like to get another one to represent where I am with it all now, (although I would need to check first if it is advisable with my newer conditions), and so the list of my favourite chronic illness symbols was formed…
1. The Sun – The sun is something that always puts a smile on people’s faces. It also represents coming out of the dark into the light, and seeing the light at the end of the tunnel.
2. A Wave – This sounded a bit strange to me at first, but a wave is a symbol of the ocean which automatically represents a level of tranquillity for me and happier memories. The ocean also conjures images of movement and therefore life moving on no matter what.
3. An Anchor – Sticking with the water theme, anchor tattoos can be extremely dainty and cute, yet have a powerful message behind them. They can symbolise stability and strength, a great reminder of those things that keep us anchored in our lives.
4. Quotes – As a lover of the written word, I can often find words bring more meaning to me than pictures, and I am a big fan of a cliché positive statement or quote. Quotes can be generic chronic illness phrases that represent hope or strength, or they can be something completely personal to you from within your own family – it doesn’t matter as long as it is relevant to you and your journey.
5. A Compass – A compass spoke to my mental health struggles as it symbolises going in the right direction and something to aid me in never feeling lost. It also represents travel and journeys which let’s face it with chronic illness and/or mental health is definitely an eventful one.
6. Awareness Related – For those of us who want to wear our conditions with pride specific awareness tattoos are a must. These can be used in a variety of formats from the spelling of your condition, to awareness ribbons in the colour of your specific illness, to condition related symbols e.g. butterflies/zebras
7. Butterflies/Wings – So speaking of butterflies.. I actually think butterflies in general are a lovely idea regardless of whether they represent your specific chronic illness or not. Butterflies can represent freedom and transformation, whereas wings can indicate a need to release yourself from whatever holds you back and be free.
8. An Arrow – For me an arrow represents moving forward, and can be a great tattoo to have independently or as part of another design. Chronic illness may be a regular companion in our lives, but it is so important to look to the future regardless and have hope for what is to come.
9. A Lion – There are so many animal tattoos you can get to acknowledge strength, but for me nothing says it more than a lion. Not only does it indicate strength but courage too. Courage to keep going day after day regardless of what we face.
10. An Ampersand – The ampersand is the ‘and’ symbol on your keyboard. To begin with this may seem strange, but to me the meaning is so fitting. When we use an ampersand in writing we are saying ‘it isn’t the end’ and that ‘there is more’ – chronic illness is not the end and there is a hell of a lot more to me than illnesses and it is about time people realised that!
Here we have it my top tattoo (or creative pictures/symbol for clothing/jewellery/crafting) ideas. Which would you pick to represent your life with chronic illness? What designs do you have?