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Q&A With My Partner: What It's Like Being My Carer

When do you think your role as my carer really began?
I think it was around the time I noticed you were struggling with pain and mobility a few years ago as it was becoming clear that you needed a hand with certain things, even if these were small things that I could do that would make a big difference to you. 

How do you feel like you manage your workload working a full-time job and looking after me too?
I think generally I have got quite good at doing both of them successfully. I'm able to work effectively in my job and help and care for you around this and when I'm home. For the times when I'm in work, I will plan ahead to anticipate what you might need during the day to prepare this for you, such as making sure your meds are available and anything you need is easily accessible for you. 

What does looking after me involve from your perspective?
Sometimes it's hard to separate what would come under 'carer' activities and what is just the things anyone would do for their partner. Some of the things are small things like I've already mentioned such as making sure your meds/food/drinks are prepared, along with ensuring you remember to take your meds at the correct times. I also need to give you a hand or be available when you get a shower/bath due to the risk of you fainting being a lot higher. The other main activity I would say comes under a carer is helping you get around when we go out somewhere, whether this is supporting you when needed if you are walking or pushing you if you need to go in your wheelchair.

Is there anything you've learned from being a carer?
Being a carer will be different for each person doing it and the person that they are caring for and some of the things that you help them with are often not a huge task. Many of the things are a straightforward and easy task for someone such as myself who is not disabled, but they can make a huge difference for those receiving your care. These small things that you do can have a real impact on the persons quality of life and help ensure they are able to do things that they would not necessarily have been able to otherwise.

Has it changed our relationship since you've been my carer as well as my partner?
I think because were have always been very close and enjoyed spending time with each other, along with always being very good friends from the get-go, I don't feel like things have changed drastically. As your conditions have developed over time it has been more a case of adapting as we go rather than things changing overnight. We are still able to do the things we enjoy, some of these have just been adapted. I would say that we have become a lot stronger over the years as a result of me being your carer and you going through a lot.

Do you wish you were able to pay for someone else to come in and be my carer?
In one way it would be great if you were able to have more care if you needed it and able to be taken out if you needed to. But on the other hand, we seem to have a good way of managing it and organising things at the moment but obviously, things may change in the future when there may be more of a need to have someone else come in and help you.

What are the negatives of being a carer?
I think sometimes people see me as your carer first rather than your partner and just immediately think that I must only be your carer and that's it. I have noticed that you sometimes see people judging the situation without knowing anything about it. 

Do you think carers are acknowledged enough by the government?
I think it's hard that a lot of carers are not recognised and given any financial support by the government that would make helping and caring some someone a bit easier and could help to provide things that would improve the quality of life for the person they are caring for, such as certain adaptions.

Do you regret not having a more private relationship between us, since there is absolutely no privacy between us now?
As we've always been open with each other about everything I don't feel like it has changed that much and it really doesn't bother me. I know that I help you with certain things now and know a lot of information about your medical conditions, but I'd rather have it this way as it means I can support you more effectively. I'd also there be less privacy and be able to help you with anything you might need rather than keep certain things private and then you have to struggle on your own. 

What is frustrating for you being a carer?
It's annoying how difficult it can sometimes be for me to get carer access to places when we visit. We've had to purchase a few different cards to 'prove' that you are disabled and that I'm a carer in order to allow me to get into a venue as your carer. Some venues, such as concert venues, don't make it easy if you need accessible tickets. I remember when trying to get tickets for a concert, I just had to ring up the general booking line even though there were only specific seating that we were able to get tickets for. Other venues have their own dedicated accessible booking lines which are much better so I know it can work - I just feel not all venues are considerate enough for those who have additional needs.

From experiences pre-covid, when going on days out, what have you witnessed that has shocked you?
One of the things I have noticed is the number of people that stare at your when you need to use a mobility aid, especially when you are in your wheelchair. I understand that younger children may stare as they are not used to seeing people in wheelchairs so they may just be curious, however, for anyone else, there is no excuse to stare. I understand you may glance over but people I have seen look at your for a considerable amount of time.

What is it like having to speak for me sometimes?
I don't mind ever having to talk for you as I know it can be difficult for you sometimes. I've seen it a number of times when you have been trying to explain something for yourself and people don't take you seriously and I'm more than happy to speak up and advocate for you to reinforce what you are saying, such as needing considerations for something we are doing.

Do you feel like you've become a disability advocate yourself?
Definitely. I have noticed that I became much more aware of things and feel I will take more things into account realising how it could affect disabled people. I think that my mindset has changed and I will always try and look at things considering how they could impact disabled people. This could include access to places, adaptions needed or even whether the red emergency cord in a disabled toilet it correctly all the way to the floor.

What is one thing you wish people would know about disabilities and chronic illnesses?
Each person's experience and situation with having a disability or chronic illness is different and their needs will vary. Just because one person with the same or similar condition(s) is able to do something does not mean that someone else will be able to so you should never assume anything about someone who is disabled or chronically ill.

Have you ever witnessed medical gaslighting with me in my appointments?
Unfortunately yes, and on more than one occasion. When you weren't able to see your regular GP, you had one appointment where the other GP downplayed the symptoms you were explaining to them. They even turned to me and started responding to me even though you were the one who was speaking with them. I know for some of your conditions that you experienced gaslighting on more than one occasion and it took multiple appointments for you to be taken seriously, which meant you weren't able to access the help you needed to control things such as your pain you were experiencing. 

What are some misconceptions about caring for a partner that you'd like to address?
One of the things about caring for a partner isn't about doing things for them all day every day. Sometimes, just helping them with simple things can be really helpful for them, such as taking their medication or helping them get to the loo if they are physically struggling one day. Something else is that it's not a burden to help care for you. Everyone needs help sometimes, so helping someone you love and care for should not be seen as a negative thing.

Are there any misconceptions that you yourself have learned about that you once thought were true?
I didn't previously realise the realities of ambulatory wheelchair users. I knew that just because someone used a wheelchair, this didn't mean that they couldn't walk at all, however, I'm now much more aware of the reasons people use a wheelchair and this can vary day to day and even within the same day. People may be able to walk for so long and reach a point where they then need to use a wheelchair. I also thought that accessing support for help and financial support was much easier than it is, and now realise that getting access to things such as a blue badge, never mind financial support is a lot harder than it should be. 

What advice would you give people in the same situation as us, with one partner caring part/full-time for the other partner?
Obviously, things will be different for every couple depending on your own situation, but there are some things I think would be applicable to a lot of people. Taking the time to plan ahead and prepare can really help. This could be for if you are going away on holiday, or even for the next day when you will be out at work. Things such as the Sociability app are useful to download as they collate a whole host of accessibility information in one place. I'd also reassure you that it's worth sticking to your guns when it comes to things and don't be afraid to speak up for your partner. Be firm but kind and don't let anyone gaslight or downplay your partners needs as you and your partner know best. 

What are your hopes for the future regarding my care and our situation?
I'd prefer to be able to work from home in the future in whatever work I'm doing as it would make it easier to help out when I was on a break from work or on the off chance you took a turn for the worst I'd be able to help straight away. I know it's something we are currently working towards, but I hope we are able to get a blue badge to make it more accessible and safer when parking. It would be a help if you were able to get some financial support, even a small amount to help cover the additional costs you experience such as medications and access aids. I know we have also talked about our house situation in the future, and I think if we could either move or extend our house at some point to make it easier for you to get around if we could have a more open-plan space. I know we don't have the funds to do this any time soon but I hope in the future we'd be able to.

AD | Getting Better Sleep with Tempur

Sleep is an important part of our daily lives. We all have our different routines, schedules and practices when it comes to sleep, but getting good quality sleep is something that's important for all of us. Many of us probably don't get as much or as good quality sleep as we would like. Reasons for poor sleep vary for different people and can be due to a temporary situation or more long-term issues. Over the past 18 months, we've all been put through, and are continuing to go through, the pandemic that has affected our lives in ways that we may never have seen before or may never see again. Unsurprisingly, a lot of people have had disturbed sleep during this time. I know for myself the worries of trying to avoid getting ill in itself was enough to have further impacts on my own sleep. Even though we all have different implications from poor sleep, one of the common effects felt by many is an impact on memory. I can say for sure I've experienced problems with my memory, and have had countless poor nights of sleep that has just made things a lot worse. I've been working with Tempur to look at the impacts of poor sleep and how this can have detrimental effects on memory.

Tempur is known for its mattress material which is designed simply to help you to 'sleep better, longer and deeper'. Having a good mattress is important, but you can't underestimate the importance of a good pillow, which is why the memory foam is also used in their pillows to help evenly distribute your pressure and weight to contribute to a more comfortable nights sleep. It has proven pressure relief that helps with minimising how much you will toss and turn, which is something I often struggle with. Tempur was first created by NASA in the 1970's to help the comfort of astronauts during lift-off into space - not something many products could boast. The Tempur Material is the original memory foam that is its own unique type like no other which is why their products offer supreme comfort.

Unfortunately, I'm one of those people who really struggle with their sleep and have done since I was younger. In more recent years I have developed a number of chronic illnesses which have an impact on my sleep for different reasons, however, my biggest hurdle to getting a good nights sleep is my pillow. When I say I've tried a lot of pillows over the past few years I really mean a lot. I have to take medication each day, and when I've not been well-rested the night before I find it much harder to remember when I need to take my tablets or that I need to take them at all. I'll sometimes also forget to go and get myself food and can miss mealtimes altogether. I'll speak to my partner in the afternoon once he's finished work and only then when we are talking about dinner I will realise I didn't have any lunch. When it comes to drinking enough, I normally had some bottled drinks next to me, but even then I will still forget to pick them up and drink during the day and can end up dehydrated because of this. I'll also really struggle to remember things I had planned to do that day, even if it had been planned to do on that day for a while. 

Having impacts on my memory can get really frustrating if I forget to do the things I needed to do, or even what I was saying. I can be in the middle of a sentence and forget what I was going to say and really struggle to recall what it was, sometimes not being able to remember at all. It can actually be quite upsetting, especially when it happens on multiple days when I have had a run of poor nights sleep. Some nights I have insomnia and just cannot get settled for hours on end however hard I try. Even if I'm getting to sleep at a normal time and wake up at a normal time, I often don't end up feeling that rested in the morning as my body hasn't been that comfortable during the night in order to rejuvenate and mend from the day before. Other times I will wake up much earlier than I was due to get up and cannot get comfortable again to allow me to drop back to sleep.

I've swapped out my current pillow with the Tempur Comfort Pillow Original that I was sent to test out and have already noticed the benefits. It's really comfortable and I find that even if I turn on my side during my sleep I won't wake up, which normally wakes me because not all pillows are suited to sleeping in different positions. I can also lie on my front and 'cuddle' the pillow and which is often a comfortable position to sleep with, especially at the start of the night. The pillow can also be shaped to the contours of your body to tailor it to what you need. Another benefit is that the soft fabric cover can easily be removed to wash at 60 degrees so you can ensure it's always fresh. I often end up waking up with neck and back pain from not having a good enough pillow to properly support me during the night. It can get into a negative cycle where I have a poor nights sleep resulting in aches and pains the next day, which then makes it harder to sleep the next day. I've had a run of bad nights sleep for a couple of weeks at a time where the knock-on impacts have become worse and worse. The pain from this alone is enough to affect my concentration so when you add in a 'sleep deficit' as my Dad calls it, it makes recall so much worse.

I'm really looking forward to using this Tempur pillow on a longer-term basis as I've already started to notice a difference with comfort improvements which is allowing me to get better quality sleep. It's really nice to feel more refreshed in the mornings and I'm hoping I can catch up with my sleep and be able to have a more consistent and good quality sleep routine. If you also struggle with your own sleep, it will definitely be worth checking out what Tempur have to offer. Don't underestimate the positive change that having good quality and properly designed products can do for your sleep. This will in turn give you other benefits, whether this is mentally such as improvements in memory, or physically such as a feeling rested and refreshed in the mornings.

This is a sponsored post in conjunction with Tempur and contains press samples but all thoughts are my own

Things I've Learned In My 20's

I learned to love my curly hair
It was always brushed out as a kid and it was only when I was 12 and started doing my hair myself that I realised how curly my hair actually was. Prior to this I hated my hair and complained about how frizzy it was. When I saw for my own eyes how curly my hair was I was upset at how the curls were brushed out and plaited away like they didn't exist. I had my hair curly for a year or so before as a teen I felt the pressure to straighten or curl my hair with tongs. I then fried it for years including bleaching it and it kinda ruined it. Now that I'm in my late twenties I'm really trying to fix my hair and appreciate it. I'm trying to buy the best products for it and buy from black-owned businesses as they make the best products hands down. 

It's good to self-reflect 
As a teen, I was often on the defensive and I had a lot of hurt and anger inside of me. I said to myself whilst I was in University that I had to be true to myself, be an honest person and be kind. Now that does not mean I am perfect in any way. I try to reflect back on conversations and see what I'd change 
about them if they happened in the future. I make sure I apologise to people and explain why I think I've hurt them. I have done a lot of reading and I make sure that I protect myself by sticking with my boundaries but I'm also living the most honest life that is true to myself. I think it's a great thing to be able to critique yourself and try to be a better person.

I'm not responsible for other people's feelings
I am an empath and I often try to help people out. With that comes other people's emotions and I often carry them when I shouldn't. I have worried a lot about how other people feel when I should put myself first. I can live my life the way I want to and I am not responsible for how other people feel about it and I shouldn't carry the weight of their emotions.

Setting boundaries is key
It's important that everyone has boundaries in different kinds of settings; work, school, relationships, family, friends etc. Boundaries are invisible barriers that we put up to protect ourselves and you can decide how strong a boundary is depending on the situation and whether people respect you and your boundaries or not. These boundaries help protect your mental health and can reduce the stress in your life. They can be rigid or flexible depending on the situation. I think it's one of the most important things you can do in life. One example for me is I've set a boundary in place with friends and family that I won't say yes to going out somewhere or doing something if I don't think my body (with chronic illnesses) can handle it, and they mustn't try to convince me things will be fine because I know my body best. One thing I've learned is that you should be consistent with your boundaries as it reinforces the original statement so it's clear what it is. Learning how to say no is great too. I have enjoyed reading this article about how to set up boundaries and this one about preserving boundaries.

You don't have to drink alcohol 
I thought when I was a teen that alcohol would be a really big thing in my life, but once I'd stopped partying during University I realised that I don't actually like it that much. I stopped going on nights out and only had the odd glass of wine or a cider in the pub or at Christmas. As time has gone on I've completely cut alcohol out of my life. It really urked me when people have joked about using drinks like wine as a coping mechanism or people making fun of those who don't drink as if they are 'boring'. I think a lot of Millenials like myself have come to similar conclusions. I don't have alcohol as part of my personality, I don't need it and in fact, it really messes up my medications too. You don't need alcohol to have fun. Don't give into peer pressure, and if your friends will only see you if you drink, you need to find some new friends. 

Actions speak louder than words, but words can tell you who a person really is 
I have learned over time that having people promise to do things doesn't always mean they will do it. I prefer people doing things then I can see it for myself. I prefer someone being a better person than promising to be a better person. But aside from actions, words can really show you who a person actually is. How someone treats a waiter or service staff is a prime example of what they're really like. If I had ever gone on a first date with someone I would go for a meal just for this reason. If they treat someone in retail really bad it shows you what they're like. If they volunteer to help someone in need it shows you what they're like. You can learn a lot about someone just from observing them. 

Listen to your body
You know if your body isn't feeling right, and advocating for yourself is really important. For me, getting diagnosed with multiple chronic illnesses took me speaking to myself and telling myself that I know my own body and if I don't fight for answers then I'll never get them. For some people, it's taken decades to get a diagnosis of Ehlers-Danlos Syndrome and I had to fight to get answers for myself. I've seen five medical professionals before I got my diagnosis. If you know that something with your body isn't right, I urge you to listen to it and try to get seen again if things still aren't right. 

Respect is earned, not given 
I really have never liked the saying 'respect your elders' as if anyone older than you can do no wrong and that you must never speak out against them. It's such a toxic thing, even if the original statement was never meant to be conceived that way. Respect for everyone must be earned, and if it isn't then you don't have to speak to them or even keep them in your life. If people do apologise for things they've done wrong, you can choose whether to accept it or not, but don't think that just because someone may apologise that you have to reconcile with them. This comes with respecting yourself and this is where setting boundaries comes into play. When someone shows you their true colours, believe them.

You can stop supporting people who upset you
You may think that this is just on a personal level, but it applies to anyone. A prime example of this is Sia, the singer. She made a movie about an autistic child and instead of hiring an autistic actor, she chose a creative person she is close to who she has chosen to do pretty much every project she's made since she met her. Included in the movie was a ton of autistic tropes, dangerous ways to manage meltdowns and much more. Instead of apologising, she set her fans onto autistic people on Twitter. She made a lot of comments about a mystery autistic actor she 'originally hired' was 'too hard to work with' and for help with her movie, she used an organisation that regularly really hurts autistic people. She doubled down, no, she tripled down. She refused to back down and upset a lot of people. Now I originally supported her as I liked her music, and when I found out that she had Ehlers-Danlos Syndrome I thought it was great that she was speaking about it to the public. Now I refused to listen to her music as it gives her royalties and don't recommend her to anyone. Also, the movie flopped.

I've learned a lot about the meat and dairy industry
Two years ago I went vegetarian, for a multitude of reasons. Now, I would like to go vegan, but medically it isn't possible for me right now. I have been told what I need to consume to keep my body as healthy as it can be and with a lot of intolerances there are some things I simply cannot swap out. When I can limit my animal by-products such as honey, milk, cheese etc I do so. Anyway, I have learned a lot about the meat and dairy industries that I find absolutely appalling. I went to watch Supersize Me 2 as when the first one came out I thought it was interesting, but I was not expecting to find out what I saw about baby chicks. I have learned about what farmers do with little calves and it hurts me to my core. When I was younger I was forced to eat things like turkey and lamb, and I'd try and get rid of it in any possible way as I hated it. I think I've always wanted to go vegetarian, I just had to wait until the time was right. I would urge anyone to consider reducing their meat and dairy intake even by just a little to help save animals and reduce the effect of climate change on our planet.

I've discovered who I am
A while ago I did one of those Myers-Briggs personality tests to see what it said about me as a person. Surprise surprise I am what they called a Mediator. It said I was empathetic, open-minded, creative and passionate, but I'm also emotionally vulnerable, desperate to please and self-critical. Once seeing this for myself, I'm learning to balance these strengths and weaknesses out. I'm not trying to please people and I'm living my life for me, and I'm trying not to think just from the heart either. I've also had a bit of self-discovery when it comes to religion. I was christened and I wish I wasn't because although people say 'you can choose when you're older' I don't believe that originally christening them is giving them 100% of that choice. Anyway, I'm not a Christian or anything from that denomination and this has come from getting chronically ill. I really don't like the idea that prayer will make me get better. Why would a God give me an incurable set of illnesses? What did I do to deserve that? I just am done with religion. I've realised I am a Humanist which means I go with what science says and I go with ethics and empathy. I base my life choices on what I believe is good for me, what medically I should do and how my actions affect others.

Self-care is a must
To reduce stress, love yourself and stay balanced, practising self-care is a must. This could be taking time out of your day to sit and listen to music, eat nutritious food or alternatively indulge in a treat. It could be to take a walk with a friend or to go to bed early. Importantly, this includes setting boundaries as I mentioned earlier. This also includes reducing the amount of negativity in your life. Unfollow negative people from social media, don't hang out with people who bring you down, turn down social events if people there hurt you. The more positivity you put into your life, hopefully, the more positive and happy you'll be.

A healthy relationship with your partner is key
I had a toxic relationship as a teen, with both parties going through the stress of family life, school and more. We were both toxic to each other. As an adult, I have learned from those mistakes and communicate openly with my partner. We take time to listen to each other, we help each other out and we make compromises. You need to find a partner with who you can have a healthy relationship with in order for it to blossom and last long.
Consider who you share things with
I can be way too trusting and it has come back to bite me before. I wouldn't trust every person you have close to you that they will keep a secret or personal information to themselves. I try not to tell too many people what is going on in my personal life, whether that's medical problems, interactions with family or friends, any disagreements etc. I keep things closer to my chest now and I'm less trusting. Things can be misconstrued and I've had people discussing my disability behind my back and it finding its way to me and I just don't need that negativity in my life.

Express yourself the way you truly want to
For years I have been dressing really boring so that I'm not too 'expressive' as it tends to get comments from people. I've had comments about dying my hair in different colours, but in reality, I was just having fun and expressing the creative part of my personality. My partner encouraged me to get my nostril and septum pierced because I'd wanted to for ages but I was concerned that people would make comments. What was surprising to me was that my Nan really liked them and said I suited them. I've been into tattoos and piercing ever since my Emo days from 2006 onwards. I'm now dressing how I want to and living my life that is true to who I am inside.

Live on your own timeline
Just because there is a societal expectation to be married before 30 and start having kids doesn't mean you need to live by that timeline. You don't need to have found your dream job by 30, you don't need to have gotten married or thought about kids yet. Live by your own rules and take your time. Don't rush into things because other people say you should. I'm not working and I'm unsure about having kids and I've made my peace with that. Me and Andy only decided to get engaged because we were ready to, not because others expected us to.

You don't have to agree with people's beliefs
Often I find that there are two main camps when it comes to beliefs. You have politics where there is the main party on the left and the main on the right. There is eating meat and not eating meat. There is being religious and not being religious. Often these topics have more than 2 opinions but there are often 2 main sides. I've learned that you don't have to agree with people's beliefs and you shouldn't try to convert people either. I am a strong left-leaner on politics who is vegetarian and non-religious. I don't try to convince people to leave what they believe in and believe in what I do. I expect the same from others too, but my main point is that you don't have to agree whether what they believe in is right or wrong. If a belief is too toxic to be around, say like someone believes in Eugenics, then it is perfectly reasonable for you to not be around the people who believe in it. You should be able to have conversations with people without these topics coming up...

Don't let people's mistakes dictate your own life
I have been told before not to do things because someone older than me did that thing and they regretted it and it was a mistake. It can be perfectly reasonable things like going for a type of job, getting engaged, buying a car etc. Don't let other people's life choices dictate your own life. Just because you regretted getting married does not mean I will either. Every big decision you make is a chapter in your life story and everything you do you can learn from whether it's positive or negative.

Life is better when you don't care about what others think
This is possibly the hardest thing I have had to learn but boy is it the most gratifying thing once you've understood it. Life is so less stressful when you stop considering what people think of your choices whether it's outfits, holidays, where you live or what car you drive. I think this also comes with confidence too and I've had to learn that too. Obviously, there are some exceptions, like for say in a wedding. You should wear an outfit that matches the dress code and not wear white or whatever colour the bride may have forbidden. Honestly, don't ever wear white to a wedding, that is a huge exception to this rule. Aside from exceptions, make choices how you want to and stop considering how other people may perceive them. Live your authentic life.

Follow your gut instinct
I truly believe that your gut can keep you safe. Like if you meet someone and get a weird vibe from them and go away from the situation then later learn that they are dangerous. Or you take a different road home and get a weird feeling in your stomach and turn round then later find out it was flooded. I think red flags can give us strange feelings and I don't know how to explain it but I now trust in my gut. I don't try to explain away something or ignore things that don't sit right with me. 

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