Strength Of Tears

Category: Guest posts

  • An Exclusive Look At The Challenge An Unpaid Carer Faces

    An Exclusive Look At The Challenge An Unpaid Carer Faces

    An Exclusive Look At The Challenge An Unpaid Carer Faces

    A lavender and heart soap image with the title of the blog over it. An exclusive look at the challenge an unpaid carer faces.

    As part of this year’s Carers Rights Day on the 24th November, I have taken over my wife’s blog and am going to provide an exclusive look at life as an unpaid carer, how I manage the challenge of balancing demands on my time and energy, and what has changed as our relationship evolved to include caring for one of us with a chronic illness.

    When Laura became chronically ill in 2014, read about this here, and it eventually dawned on me that my role as Husband, Father, best friend and confidante would now be expanded to that of prime and unpaid Carer, life would become a little more complicated, especially as this would need to be balanced with being the main financial provider in the household.

    My role as unpaid Carer covers a wide variety of tasks and activities. I will try to distinguish these from the roles of Husband and best friend, though I have to be honest, this is often difficult to do!  

    As an unpaid Carer for Laura, I need to consider her needs at all times, ensuring that her physical needs are met and that I am aware of those needs at all times of the day and night.  At a very basic level I need to ensure that Laura has taken her medicines, eaten regularly, has access to clean water and is washed and clothed every day.  

    I need to ensure Laura can access essential services, such as getting to a toilet safely. I need to be there to help if she falls or passes out, getting her to safety or calling the emergency services if needed. It sounds very mechanical listing it out but this is how I can distinguish my role as unpaid Carer from that of husband. As the person I love the most and have chosen to spend my life with, she is much more than just this list of needs.

    In addition, as Laura’s condition impacts her cognitive function, I handle the more complex elements of her care and help her organise and attend medical appointments and understand the risks and potential benefits of procedures to help her make decisions right for her. 

    As well as helping Laura with the more complex elements of her care, I also help her in her role as equal partner running the household, making sure she can perform her role in key decisions around finances, household maintenance, childcare and the general running of a family. 

    I also help her to understand what is happening when, and what decisions need to be taken.  As an unpaid Carer, I need to be mindful of Laura’s needs, breaking complex information down into easily understood pieces so she can make decisions that affect her and the family.

    What A Normal Day Looks Like For Me

    After my alarm I ensure the youngest is on track for college, then I’ll have a quick shower, and while brushing my teeth will check my work emails and calendar for the day.  

    My first caring concern is making sure Laura has her breakfast ready to take her medicines, so will prepare her favourite toast and marmalade, a cool cup of tea (too hot could burn her, or worse still melt a medicine capsule and release some horrid flavours!) and take her breakfast upstairs, to where I often have to wake her. 

    I’ll turn on her light, place everything she needs within reach, making sure the handle of the tea cup is where she can’t knock it over. I will then ensure she has her medicines, checking that she takes them, and has enough water for the morning.  

    Only then will I move onto my needs, getting dressed and ready for my day. Once she puts on her lifeline device, and has taken her medicines, I know she’s safe to be left as her medicines mean she often sleeps most of the morning.

    We are really lucky and have a paid Carer who attends daily around lunchtime. Read about how Sam fits into our team here. On the days when she is on holiday, or at weekends, I will give Laura a cup of tea close to lunchtime, and put out her clothes for the day, and prepare her some lunch.

    On the (thankfully) rare occasions that her condition and pain levels flare up, I will need to help Laura to shower, wash her hair, help to dry and dress her, as well as help with her access to her variety of beauty and medicinal creams.

    Throughout the day I am on hand to pick things up that Laura may have dropped, handle some cat related incident, or answer any questions when Laura is struggling to understand something.  As her Carer I’m there to listen to her emotional needs, be patient when her pain affects her mood, offer a listening ear, and a giggle or a hug. These are essential parts of caring for Laura and their impact cannot be underestimated.

    Let’s not forget our sons.  Eldest is now at University but youngest may well need picking up from college early, or late, depending on his schedule. I’m also there if he needs my taxi service for any appointments or social engagements.

    Later I will prepare dinner, again something our paid Carer will have prepared or put in the slow cooker. and sort any washing, cleaning or household task that needs doing.  I normally give the youngest the job of delivering Laura her dinner, which saves a trip up the stairs.

    Once we are all tidied away after dinner, I like to enjoy an evening watching TV with Laura, where we will chat about our day, catch up on anything important and just enjoy each other’s company.  Before bed-time, I ensure Laura’s bed is re-made, she has her nightwear to change into, has taken all of her medicines for the day and has enough water to drink. I make sure she has a small packet of biscuits to combat nausea if it comes on in the night, and that she has her ‘ice hat’ which she normally falls asleep with, as it helps manage her pain.

    As Laura can at times be prone to passing out, I tend to sleep lightly, always being alert to when she uses the toilet or if she needs me in the night. Should anything happen, as her unpaid Carer I can help to get her to safety.

    Did I mention work?  I am very fortunate to be able to work from home, and have access to work communications on my mobile phone too.  As a Systems Director I manage a small team of data managers across Europe. It is complicated work, and draws upon my many years of experience.

    I have many virtual meetings with people around the world, periods of intense concentration, people to support and invariably problems to solve.  I tend to think of my working hours as 8am – 4pm but this flexes as needed around my caring responsibilities. I am always able to catch up in the evenings in that window between dinner and time with Laura.

    My main responsibilities as an unpaid Carer are that Laura’s needs are first known and understood. These change daily and it is so important to never assume I know what these needs are, but rather ask Laura to ensure her voice is heard and that her needs are shaping her care.  

    Then it is to ensure these needs are met, from medication, food, water, cleaning, clothing to medical appointments, setting up household systems and communication with the family and support network.  As Laura’s prime Carer, being with her and on hand to help 24 hours a day I take it as my responsibility to consider how I can help to meet these needs wherever she requires my help.

    How Caring For Laura Impacts My Well-being

    Having hopefully painted a picture of how my day-to-day life works, and my main caring responsibilities for Laura and our family, I also have to think about myself! The transition to accepting the role of unpaid Carer for my wife has not been an easy one. Realising that our family life would be changed forever affected me tremendously.

    I am quite a positive person, always looking for solutions and trying to find the best in every situation, but seeing the person I love the most in so much pain, and their life going from a busy Mum and teacher, to being bed-bound and struggling with the simplest of things really hit hard, especially as I felt so helpless.  

    Being Laura’s unpaid Carer has been hard emotionally, and my mental wellbeing has suffered. Adjusting to a new life, while grieving for a lifestyle lost, with all the freedoms and spontaneity being compromised by putting someone else’s needs first took me through a difficult emotional journey. 

    Finding my role as Carer, however, gave me a focus and activity that I could understand in helping to work with something I couldn’t find a solution for. Realising that being an unpaid Carer was my way of helping, coupled with being the Father/Husband/Earner helped me to reconcile with a problem that I couldn’t solve, and adjust slowly to our new life.

    I have always been able to find positive perspectives, and I am thankful that I still have my wife, that we are together and we’re able to support each other through this transition in roles, and most importantly provide strong role models for our sons.

    My physical well-being has suffered a little over the years, especially as my work is quite sedentary, being office based, and with the onset of years and being overweight I am definitely not as fit as I used to be. When your partner is mainly bed bound, inevitably time spent together is also a sedentary experience too. So a renewed focus on fitness and activity is my latest goal in trying to address my well-being needs, and make sure I am fit enough for me, and importantly for Laura too!

    How My Caring Role Affects My Work-life

    My work-life as an unpaid Carer has had to become ever more flexible.  As I say, I am very lucky in that I can work from home, and flex my time around work and caring responsibilities.

    The main thing though is that I have to be a strong and confident advocate for my needs. What I mean by that is that I am always clear and confident in communicating how I will be the best employee while also balancing the needs of those who rely on me.

    I am always open and honest about my role as an unpaid Carer and when I am available and not. My employers don’t suffer from compromising with the time I need to dedicate to my caring duties. In fact, my employers benefit from my perspective, approach to prioritising, time management and ability to focus wholly on any problem or solution I work on.

    Being aware of ‘reasonable adjustment’ rights in the workplace is also something that has served me well. When I became a Father I worked compressed hours to care for my sons one day a week, which was so valuable to us as a young family, with high childcare costs. It ensured we felt we had balanced time and it became a real cornerstone for what I wanted in my work life, especially as an unpaid Carer for Laura.

    In the past I have been able to represent the needs of parents and Carers in setting up and running an award-winning colleague network, something I will forever be immensely proud of, as well as being a role model for other leaders with caring responsibilities.

    What My Support Network Is Like As An Unpaid Carer

    My support network is small but strong. I have relied at times on my father-in-law for contingency taxi or childcare. My emotional support though is what gets me through the tough times, with close friends to lean on, and becoming close to Laura’s paid Carer. 

    I am also part of a band, and music is such an escape valve for the hurricane of emotions I balance in my life. The release it gives me to just have to think about the next note in a song, comfortable in the knowledge that Laura is happy and safe, means that the emotional elastic band gets a chance to flex and not snap.

    Most importantly though, is the network of support we have created as a family.  We focus on the positives of life, balancing against the challenges and we remain solution focused. It feels like we work well as a team, each supporting the other. As a whole our family life is happy and fulfilled, which nourishes us all as we each achieve our ambitions.

    If I Could Have One Wish Granted To Make Caring Easier…

    I would wish that all of my wife’s illnesses and conditions would be alleviated and we could go back to a time where chronic illness was not a part of our family life. This is not wholly true, though, as we have all learnt so much about who we are as individuals, what great teamwork looks and feels like, and how we all can work together to succeed in the face of adversity.

    Having the role of Carer is a badge of honour and pride for me.  I feel like I am helping my wife succeed in being the best version of herself, and that my role as her unpaid Carer also helps me be the most resilient, empathetic, understanding and above all most caring version of myself that I can be.

    A Powerful Perspective Of Life As My Unpaid Carer

    It’s been wonderful, challenging and entertaining to read my husband’s perspective about his role as my Carer, especially being one who isn’t paid at all. It’s eye-watering to read about the list of jobs he has to do in the morning before work, whilst I lay sleeping or waking casually to the smell of toast. I can honestly say I’ve never thought of it that way and this will hopefully help me to be more patient and show my gratitude even more than I do already. 

    My lack of awareness comes from both being in bed, isolated from the real world for the majority of the time, and due to my brain condition. My brain reacts to the extra pressure in my skull, the same way it would if I had a brain tumour so I can struggle to see things from others perspectives unless they tell me repeatedly how they feel. 

    I also think it’s partly down to the husband-wife relationship. Come on, you know we don’t always listen to what our spouse says! However, Joel hasn’t told me about a lot of what he’s written here about how he felt transitioning into the role of an unpaid Carer. 

    I was very unwell at the time and could not hold a conversation or retain any information. Thankfully my brain surgeries have allowed this aspect to right itself quite well so I can now take this on. I just wish I’d asked Joel how he felt more, I knew he was struggling of course, but I didn’t know how much. 

    I too am able to look at the positives of our situation now and know we’ve been able to teach our sons so much more about how to flex and grow to cope with challenging situations. As a team, we’re unstoppable and that includes my paid Carer Sam, who often acts as my proxy in the physical activities of running a household. I couldn’t be prouder of Joel and the boys for how they cope with ALL the challenges they face as unpaid Carers. 

    I would like to thank Joel for taking the time to write this piece, guided by my questions that came from this year’s Carers Rights Day campaign. Each year Carers Rights Day helps carers in the community know their rights and find out how to get the support they’re entitled to. The West Sussex Carers Support page says: 

    “This year our campaign will focus on the ways in which Caring Costs unpaid carers. From carers’ well-being and ability to access health services, to costs to their finances and employment options, to the current cost of living crisis which is being felt even more acutely by carers throughout the UK.”

    National Carer support organisations that help unpaid Carers know their rights are:

    Carers UK

    Carers Trust

    The UK government also have support materials for Carers

    There is also information on the new Carers Leave Bill that was passed in October 2022 here. We’ve found our local carers organisation very helpful, and highly recommend searching what is going on in your local area this Carers Rights Day. 

    Finally I want to publicly share how grateful I am to Joel for everything he does for me, everything he sacrifices and mostly everything he does to put a smile on my face, and my son’s face every single bloody day. He is an incredible human being and I love him even more after reading this article. In our 25 years together he has only ever shown me kindness and generosity and this seeps through the words on the page here. I am so honoured that you’ve shown another side of me to those who take time to read this blog. I appreciate you taking even more of your precious time to write about your perspective as my unpaid Carer

    A Powerful Perspective Of Life As My Unpaid CarerA Powerful Perspective Of Life As My Unpaid Carer

    An exclusive look at the challenge an unpaid carer facesAn exclusive look at the challenge an unpaid carer faces

    Having the role of Carer is a badge of honour and pride for me. I feel like I am helping my wife succeed in being the best version of herself.JPGHaving the role of Carer is a badge of honour and pride for me. I feel like I am helping my wife succeed in being the best version of herself.JPG

    An exclusive look at the challenge an unpaid carer facesAn exclusive look at the challenge an unpaid carer faces

    An exclusive look at the challenge an unpaid carer facesAn exclusive look at the challenge an unpaid carer faces

    A Powerful Perspective Of Life As My Unpaid Carer 1.JPGA Powerful Perspective Of Life As My Unpaid Carer 1.JPG

    A powerful perspective of life as my unpaid carerA powerful perspective of life as my unpaid carer

    A Powerful Perspective Of Life As My Unpaid CarerA Powerful Perspective Of Life As My Unpaid Carer

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    ✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆  Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

  • A Powerful Exclusive: A Carers Mental Health Exposed

    A Powerful Exclusive: A Carers Mental Health Exposed

    A Powerful Exclusive: A Carers Mental Health Exposed

    A Powerful Exclusive: A Carers Mental Health ExposedCarers Rights Day is a day for making Carers aware of their rights, where they can get help and support, as well as raising awareness of the impact caring has. The theme for Carers Rights Day 2020 …

    An Introduction To Lesley’s Interview

    Carers Rights Day 2020 is on Thursday 26 November. It’s an important way to ensure Carers are aware of their rights, where they can get help and support, as well as raising awareness of the impact caring has. The theme for Carers Rights Day 2020 is ‘Know Your Rights’. Read more about it by clicking here.

    This year I wanted to raise awareness of Carers mental health by talking directly to a Carer other than my husband. It’s important that I do this for myself to understand the impact caring has, so that I can bring a more objective viewpoint for my readers. 

    Lesley offered to be interviewed about the stress she experiences as a Carer. She’s always shown me kindness and empathy so I was interested to see how she coped with being a Carer, and share her viewpoint in this exclusive interview. 

    Lesley, who lives in Preston, is mum to Maddie (15) and Xander (11). She is a Carer to her husband Jerry, who is mainly affected by chronic osteoarthritis. After a work incident 2 years ago, Jerry had to stop work and their lives changed completely. 

    Lesley now runs her business, Digital Fixers, from home with her work-wife, Nic. They help small businesses grow using digital platforms, which is how we met. Read Lesley’s Blogs for Digital Fixers here, where she talks in more detail about how they support small businesses with Websites, SEO and Digital Growth.

    This blog will share: 

    • Information about Carers Rights Day

    • The Interview

    • Why It’s An Important Time To Spotlight Carers Mental Health

    • How You Can Help Raise Awareness And Donate To Support Carers


    DONATE TO CARERS UK NOW

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    About Carers Rights Day

    Carers Rights Day is a specific campaign that Carers UK runs annually to help make life better for Carers. They “believe that it’s important that you understand your rights and are able to access the support that is available to you as soon as you need it.” This is vital for a Carers mental health, even if they don’t feel they need it now. 

    When my husband Joel first started caring for me, it was on top of his full time job, being a dad, doing all of my jobs and dealing with all my medical appointments. I recognised this, although my brain condition was so bad I couldn’t see the full extent of the stress it put on him. 

    We had no idea of the support available for a Carer’s mental health but I spoke to my GP to see what help was available and we were lucky enough to get funding for a part time Carer. This relieved some of the stress Joel was under. Read more in this blog about my story and how caring affected Joel and my boys.

    In both mine and Lesley’s families, the Carers are providing care for their partner. A recent survey found that four out of five Carers care for a relative. This makes the campaign even more important so Carers know how to stand up for their rights if they’re not being met. 

    It’s been equally fascinating and devastating to read Lesley’s exclusive interview and find out about her background, the circumstances that led to her becoming a Carer, and how it’s changed the lives of her entire family. 

    An Interview with Lesley from Digital Fixers for Carers Rights Day 2020.jpg

    The Interview

    Tell me a little about you

    I was born in Edinburgh but moved around England after moving to Milton Keynes as an 11-year-old, before moving to Preston with Jerry at 31 years old. I spend a lot of time online, both for business and socialising and my guilty pleasure is true crime podcasts.  

    How did you meet your husband and how did you get married? 

    Jerry and I met when I was 30 and he was 31, so quite late really.  His ex was my workmate who tried to set us up, then we met at a work’s do. A week later we ran into each other in a pub in Shepherds Bush and moved in with each other the next day.   

    We were never going to get married, aiming to be the non-conformists who lived together forever.  When Maddie was 2, Jerry had a mad moment and proposed! I said yes but wasn’t sure I’d made the right decision – we were OK, why change it! But then we went to find his decree nisi and they couldn’t find it. 

    I suddenly realised how much I did want to marry him!  So, we waited a couple of hours while they searched, and they found it. It had been misfiled. We’d also set out a very fine timeline with 5 weeks until we had a weekend away booked, with Maddie staying with my in-laws for the weekend.  

    What are your husband’s illnesses? 

    Jerry’s first illness was a Hiatus Hernia that took 2 years to diagnose. By the time he had the operation he was so ill, physically and mentally, it took 6 months for him to recover to a point where he could work again. Xander was a baby so he hadn’t really had a great deal of quality time with his dad.  

    About 5 years ago he had to have a shoulder replacement due to chronic osteoarthritis. The surgeon had only done it on 1 younger person – a tennis pro! He doesn’t have much mobility in it anymore, and the other one is going too.  His back hips and ankles are also bad.  

    The final straw, which almost broke the camel’s back, came two years ago. While doing a part time job, in an effort to feel like he was still contributing, Jerry was involved in an accident. An alloy wheel was spinning in a CNC lathe and it flew out and hit him on the head and chest. 

    When did you become a Carer and what do you do in your role? 

    The last two years have been when the caring has kicked in. I was working full time, doing the school stuff, cooking, DIY, and generally holding everyone together. Doing everything got too much and although it meant a reduction in income, I quit.  

    As well as Jerry and his illness, one of the kids has Dyspraxia and Hypermobility and that means hospital appointments most months. We can’t go for walks anymore, and we had to get rid of all the motorbikes, this has been the hardest part for Jerry.

    What is an average day like for you? 

    I get the kids up and get them to school. When I’m back I try to cram an hour of work in before I wake Jerry with his tablets.  He used to take them himself, but started forgetting and if he doesn’t take them on time, he gets very groggy very quickly, but doesn’t realise why!  

    I try to spend some time each day chatting as I know he gets lonely but it’s hard as I’m busy. Some days he comes downstairs for lunch, so we can spend time together but he mostly stays upstairs as he can’t keep going up and downstairs. When the kids get in from school he’ll come down again, sometimes waiting until dinner time.  

    He wants to try and do things he used to, like car jobs and DIY. But he can’t, so finds it frustrating, and I can’t do a lot of them. We end up trying to do them together, which can cause hilarity, or arguments, in equal measure. Afterwards he has to sleep and is in pain for 2-3 days so it makes me wonder if it was worth it? 

    How has being a Carer changed you? 

    I’ve always been the caregiver. I hadn’t planned to have to take such a big role on so soon after finishing caring for babies, but it is what it is. I’d like to say it has made me more patient, but it hasn’t; I just bite my tongue more when he is trying to do something I could do quicker! 

    A Carer’s mental health can be affected by these changes, how are you? 

    I find it hard caring for the person I assumed would care for me equally. 

    Have you been given support in any way as a Carer and are you aware of your rights and how to get help? 

    I’m not sure I qualify for much in the way of financial support. We’re still fighting to get more than basic PIP (Personal Independence Payment). I’m lucky to have friends that I can talk to and support me, as that’s what I need the most.

    What things do you need to make your life easier and help with your Carer’s mental health? 

    It’s not even something I think about! What would help me most would be Jerry being in less pain but I’m not sure that’s something we can do. 

    “My caregiver mantra is to remember: The only control you have is over the changes you choose to make.”

    — Nancy L. Kriseman,

    I recently suggested discussing hip surgery with the doctor now that he’s a bit older, but he admitted that he fears the surgery. Unfortunately it took him a while to recover from his second surgery. As both major surgeries have had such a devastating effect, he really doesn’t want to have more. 

    What’s been the biggest change in your life since you became a Carer? 

    Everything has changed.  We ran a business for 15 years, but we lost it and then lost the house. We were very lucky to get a brand-new housing association house. But a depression set in over Jerry as he blames himself.  

    We used to go for walks daily, and often went to the Lake District for long weekends.  We also went to Motorsports events on a regular basis, but that involved camping, or at the very least a day of being on your feet. 

    It’s hard on the kids too. Xander can’t remember his dad being well and as the gaming computer is in our room, he can only game when Jerry’s up. Maddie sees a counsellor at school, which has really helped. She’s talking more to me about it, but I can’t change it. I can’t give them back the life we had, and that is the hardest thing.

    How does your business and your role as a Carer affect your working life? 

    I run Digital Fixers, with my great friend Nic, from home. We help small businesses who often have to change plans and ideas at the last minute, which I can totally sympathise with! To find out more about what Digital Fixers do, click here to check out their website.

    I don’t feel too much pressure to get things done now, so what works for me is doing a bit of work, caring for Jerry, or doing house stuff, more work, sorting the kids and dinner, then doing more work. Some days nothing tangible has been done work wise at the end of the day. I have to learn to live with that and hope the next day is better.

    Regarding Carers mental health, how do you cope with the stress?

    I just do, I don’t know how sometimes. I think you don’t know how strong you are until the shit shizz actually hits the fan, and then most people find they’re stronger than they ever thought they could be. I’m a problem solver, so I find it difficult when it’s a problem I can’t solve.

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    “You never know how strong you are until being strong is your only choice.”

    — Bob Marley

    Does being a Carer affect your relationships? 

    I believe a couple’s relationship changes throughout their life, and you have to grow and change to survive. We’ve switched roles back and forward over the years as to who is the stronger and who needs support.  This feels more permanent though. 

    My parents live in Spain but we can’t get out to see them very often. The last time I went I was on my own, just 2 weeks after Jerry’s head injury accident, so I worried a lot when I was away. The kids are great and help a lot but I feel bad that they have to do that.  

    Most friends are online these days, especially since the kids started high school. We talk daily in WhatsApp groups and I have a couple of friends I meet for actual coffee (before lockdown).  Sometimes I feel I do nothing but moan to some friends, but they moan to me about their problems. We all need someone we can vent to!

    How do you find other people react to you having a chronically ill husband? 

    Hmmm! I’m not sure this is even something I think about. My friends are supportive but if they weren’t they wouldn’t really be friends! I have people I call if I can’t get out and need something, others if I can’t do the school run. If I need help I ask, people feel good helping others. Once I learned that, I was more open to asking for help. 

    Is there anything that you wish you’d known when you first became a Carer and do you know your rights?

    I still don’t really know anything about these things. Jerry is the one who is ill so I focus on his rights. Maybe I need to investigate! I think I’m only starting to accept that now I am his Carer.

    If you had a superpower what would it be and why? 

    I have a superpower – it’s holding everything together single handed! The only other superpower I would like, would be the power to fix Jerry.  

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    What do you want to achieve in life that you think may be difficult now you’re a Carer?

    To travel. I really hadn’t finished that.

    Is there anything else you want to say about being a Carer? 

    It sneaked up on me. I didn’t realise. Even now, I just see everything I do as a part of being his wife, so am I his Carer or his wife? 

    An Important Time To Spotlight A Carers Mental Health.jpeg

    A Important Time To Spotlight A Carers Mental Health

    Lesley’s been kind enough to answer my questions about her role as a Carer. They got her thinking about some aspects of her role for the first time. After sending me her answers she went on the Carers UK website to start investigating what might be available for her. 

    Lesley has a great network of friends that make up her support system which is so important for a Carers mental health. The impact of caring for a partner within a family, can also affect the children’s mental health. Lesley’s comment about not being able to give her kids the life they had before, hit home for me. 

    However her teenage daughter is seeing a counsellor which helps her communicate her feelings, so important for her emotional well-being. Joel, myself and the boys had family therapy which gave us tools to communicate how we feel in a constructive way. To read more about emotional well-being for families, click here to read my blog.

    “Caring can place a big strain on families. Carers sometimes say that friends and family disappear once caring begins. This can lead to feelings of isolation and resentment.””

    — Carers UK

    We have to recognise the strain caring can put on a relationship. When we commit to one another we think we have all the time in the world, so when a partner’s health changes and they need care, the other is never ready to take on the role. Like Lesley’s travelling plans, both partners’ lives change, which may lead to feeling bitter.

    However, many couples are brought closer and Lesley’s love for Jerry shines through this interview. I totally agree that her superpower is holding everything together, in a way that works for her family. But we all differ and Carers juggle so much, they often don’t find time for themselves. This is why a Carers mental health is so important. 

    As we head towards the end of 2020, it is more important than ever that we shine a spotlight on the support available for Carers. A recent survey found that 78% reported “the needs of the person they care for have increased during the pandemic” with worries it would worsen with further Lockdowns and restrictions.

    My Recommended Reading List

    These books are my recommendations on this topic. These books are all about a Carer’s well-being which will help any Carers mental health. Mindfulness may sound a bit woo-woo but t’s just spending some time being present. For extra ideas refer to my emotional well-being blogs to get started. I hope these help you as a carer or you can pass these ideas on to your carer, to cope with the stress of being a carer.

    Mindfulness for Carers : How to Manage the Demands of Caregiving While Finding a Place for Yourself By Dr Cheryl Rezek Mindfulness for Carers : How to Manage the Demands of Caregiving While Finding a Place for Yourself By Dr Cheryl Rezek 

    The Carer's Handbook 2nd Edition : Essential Information and Support for All Those in a Caring Role By Jane MatthewsThe Carer's Handbook 2nd Edition : Essential Information and Support for All Those in a Caring Role By Jane Matthews

    The Carer's Bible By Amanda Waring The Carer's Bible By Amanda Waring 

    The Mindful Caregiver : Finding Ease in the Caregiving JourneyThe Mindful Caregiver : Finding Ease in the Caregiving Journey

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    How You Can Help Raise Awareness And Donate To Support Carers

    “This Carers Rights Day, we want to empower Carers with information and support, so they can feel confident asking for what they need.” This information to support Carers Mental Health and more, is for Carers in any setting. If you want to know more, click here to read the Carers UK guide to looking after someone.

    We would both love this blog to do even more than raise awareness so would both be very grateful if you could donate whatever you can to the charity Carers UK. To donate please click on this button and follow the instructions. Thank you so much. 


    DONATE TO CARERS UK TODAY

    Lesley has shared her story in the hope of raising awareness of the stress that being a Carer has on you. We would both be so grateful if you could share this blog on your social media using the links at the end of this post.  A note from the Carers UK website about how your donation can help them support Carers in the UK.

    Carers Rights Day.jpg

    Across the UK today 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill. That’s 1 in 8 adults who care, unpaid, for family and friends… Carers UK makes life better for carers. Caring will affect us all at some point in our lives. We’ll be here for you when that happens. With your help, we can be there for the 6,000 people who start looking after someone each day.

    How Carers UK supports carers:

    • We give expert advice, information and support.

    • We connect carers so no-one has to care alone.

    •  We campaign together for lasting change.

    • We innovate to find new ways to reach and support carers.

    To enable CARERS UK to do this please follow the instructions on their DONATE page by clicking here. 

    To help us raise awareness please share this blog on your social media with friends and use #CarersRightsDay. To help us raise money for Carers UK on Facebook please add the donate button and choose Carers UK when you share this post.

    Stay safe,

    Laura 💜

    P.S

    If you care for someone and find it hard to prioritise your own needs, I can help you create better well-being strategies using my free well-being plan. This will help prioritise your own needs, such as better sleep patterns, self care or doing the things you love. Or if you want to get on a waiting list for updates on my first ever well-being journal, please sign up to my Strong Mums mailing list here.

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    A Powerful Exclusive: A Carers Mental Health ExposedA Powerful Exclusive: A Carers Mental Health Exposed

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    A Important Time To Spotlight A Carers Mental HealthA Important Time To Spotlight A Carers Mental Health

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    A Important Time To Spotlight A Carers Mental HealthA Important Time To Spotlight A Carers Mental Health

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    A Powerful Exclusive: A Carers Mental Health Exposed - Carers Rights DayA Powerful Exclusive: A Carers Mental Health Exposed - Carers Rights Day

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    ✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with mental health and/or chronic invisible illnesses and those who care for them.⬇ Hit one of those sharing buttons or save the images to Pinterest and I will do a bed-bound happy dance – there’s an image for you.

  • A Lonely Challenge: IIH Headache And A Baby

    A Lonely Challenge: IIH Headache And A Baby

    A Lonely Challenge: IIH Headache And A Baby

    A Lonely Challenge: IIH Headache And A BabyFor IIH Awareness Month, Amy has written this amazing guest blog about her experience as a 24 year old, newly single mum of a one year baby boy, recently diagnosed with Idiopathic Intracranial Hypertension …

    An Introduction To Amy’s Guest Blog

    For IIH Awareness Month, I want to raise awareness about Idiopathic Intracranial Hypertension or IIH through blogs with a range of patient voices. I’ve asked mums from the IIH UK Facebook support group to raise money for IIH UK, a charity supporting IIH patients and raising awareness.

    Please use the button below if you would like to donate to IIH UK through their Justgiving page.


    Donate To IIH UK NOw

    Amy has written an amazing guest blog about her experience as a 24 year old mum of a one year baby boy. She’s just moved back to Scotland to be closer to her family after being diagnosed with IIH fairly recently. 

    If you would like to understand  the symptoms, diagnosis and treatment of IIH from the perspective of other patients for IIH awareness month, read this blog post.

    She experiences crippling pain, with each severe Idiopathic Intracranial Hypertension headache which led to her diagnosis. However IIH is so much more than just a headache so here is Amy’s story, in this open letter to IIH.

    A Lonely Challenge IIH headache and a baby.jpg

    An Open Letter For IIH Awareness Month

    To my IIH for finally teaching me how to let go. 

    You can’t hold on to anything when you’re awake every morning with an excruciating headache that can only be described as brain freeze mixed with a car crash.  

    With every day, the hypertension headaches grew stronger and longer. I wasn’t present in my life for weeks, I was zoned out on autopilot trying to protect myself from the pain. Nothing worked. I tried everything from pain killers to mindfulness to not eating this and that.

    Then came the whooshing (pulsatile tinnitus ) and blurry vision that fearfully shook me back into the present.  I wasn’t just in pain anymore. I was scared. Really really scared. I knew something was very wrong! I googled my symptoms in every free second I could and my results told me I was either  “faking it” or I had a brain tumour.

    When my phone rang, (sort of like the way my ears did when I got my first headache), my GP told me I had ‘Idiopathic Intracranial Hypertension’. Luckily I’d done my research, so at that point I knew what she knew. Find out what IIH is by reading this IIH UK leaflet.

    However I didn’t know that my boyfriend would end our relationship and move out of our family home leaving me alone with our 8 month old baby son and the lonely challenge of my new diagnosis and that Idiopathic Intracranial Hypertension headache. 

    No one knew I’d need a lumbar puncture in a hospital which had had many covid-19 related deaths or that the procedure would make me so ill I’d had to be driven 300 miles, to be admitted to hospital in Scotland near my family home. 

    The lumbar puncture hurt almost as much as when my partner left me, the pain was deep and repetitive. Read about lumbar punctures here. https://www.nhs.uk/conditions/lumbar-puncture/ It made me question what was wrong with me and why, like always, things could never be easy? 

    I screamed and howled that night as my high pressure hypertension headache was traded with a low pressure headache. My sister held my hair while I vomited almost in unison to my sons midnight cries. How I wished being a mother was the least of my problems.

    They Thought I’d Be Okay.

    They thought I’d be okay but if it had been possible, I’d have easily spent the rest of my life in bed hiding from the world, silently taking note of every little change in me. With every bout of nausea the panic set in and I often found myself reliving the pain of the Idiopathic Intracranial Hypertension headache I felt when I was first diagnosed. 

    They thought I’d be okay but with every visual disturbance I winced at the thought of losing my ability to care for my son, drive or even completely losing my sight. It’s very easy to see why depression is a symptom of IIH. I consider myself extremely lucky that I do have good days as I remember a time, not so long ago, when I didn’t.

    By the time I had to quit my job, I’d started to regain strength. I felt proud that I’d managed to keep myself and my son alive and that we had a wonderful week in Scotland. Looking back it was a parallel universe to what I’d been used to. 

    The days were bright, the family home was busy and the sound of my thoughts no longer rattled off of every surface. I became determined to prove to myself and everyone else that I could fight one of the hardest fights I’d ever faced. 

    I lost 10kg in weight in less than a month. Everyone congratulated me and acted as if, by magic, all my problems would be solved and I’d be okay. Stereotypicaly women are somehow (wrongly) convinced that the more weight they lose the more successful they’ll be. 

    Unfortunately when you’re overweight with an IIH diagnosis, you are even more convinced that losing weight will be a miracle cure. Read more about views on IIH and weight loss here.

    Everyone thought I’d be okay but bed time was the hardest. I recoiled at the sound of my son’s screeches which threatened an Idiopathic Intracranial Hypertension headache. Thankfully we gradually found a routine along with our ability to self soothe. 

    Here I was, a 23 year old newly single, unemployed mum with an 8 month old baby and 3 chronic health conditions; living three hundred miles away from my family and friends. So I’m grateful to the friends who were always a phone call away, even though no one truly knew what I was up against. 

    A New Perspective - My IIH Headache Taught Me To Be Strong 1.jpg

    A New Perspective – My IIH Headache Taught Me To Be Strong

    My Idiopathic Intracranial Hypertension headache and friends taught me to be strong. Not relying on the strength of others is the greatest gift I could have given myself. Fighting everyday just to survive is so, so tiring but I started to reap the rewards and found a new perspective. 

    Whilst becoming a single mother is the last thing anyone would wish upon themselves, over time, it has given me back the independence and self belief I’d lost during pregnancy. 

    Nothing is more rewarding than the bond I have with my son. We are inseparable. Things are different now that my son and I get out of the house whenever we can. I do this because I want to, not because I’d feel like a bad mother if I didn’t. However, I think I’ll always live with guilt and what if’s.

    I’ve realised that I am the best mother for my son and that as long as I don’t stop fighting, however much I want to, little else matters. Doing the dishes doesn’t matter, how I look when I step out the door doesn’t matter and thinking “I’ll be happy when…” doesn’t matter.

    Now I try to create as many meaningful memories as possible for us. Sometimes this will be as simple as going to the supermarket and engaging with as many people as possible. Sometimes it will be playing together and having cuddles on the sofa. 

    IIH has taken so much from me that I’m not sure I’ll get back. I’m troubled by confusion and concentration issues from brain fog and that pervasive Idiopathic Intracranial Hypertension headache. My love of knitting, baking, reading, colouring and watching TV & film is all just not possible for me right now. 

    Instead I found comfort in self care, something I did prior to my diagnosis but from my new perspective, I truly appreciate it. I love painting my nails, using face masks and taking long baths. 

    A New Perspective - My IIH Headache Taught Me To Be Strong “My IIH headache and friends taught me to be strong. Not relying on the strength of others is the greatest gift I could have given myself. Fighting everyday just to survive is so, so tiring …

    How I Feel Now It’s September

    We’ve just celebrated my son’s 1st birthday. It’s been six months since being diagnosed and it’s IIH awareness month. I don’t know how I feel about any of these things and that’s okay. 

    Still so many thoughts turn in my mind. How is my baby 1 year old already? Why have I spent half of his life fighting, almost literally, to keep my head above water? What’s the next challenge, now that my baby and I are here? 

    I do know that for every second I’ve fought, a second of my son’s love is earned. I do know that there are mums out there just like me, laying awake at night exhausted. I do know that we’ll both be praying tomorrow will be different, even though it rarely is.

    A part of me wants to roll up IIH awareness month into a very small ball and chuck it tremendously far away. A part of me wants to leave this challenge behind me and my son and not have to fight this anymore.

    However, I know that we should be taking this fight to the hills. We should be taking it to the roof tops and everywhere IIH has taken us. We must tell everyone we can about the fight we face every day, with IIH headache, the pressure, the pain and the vision problems we all face. 

    As diagnoses are rapidly increasing, we need everyone to know how living with this brain condition affects us. We need to raise awareness of how we’re up against losing our sight and how poor the quality of our lives is. 

    Sometimes it feels like the specialists don’t believe us when we describe how painful the pressure of an Idiopathic Intracranial Hypertension headache is. When doctors don’t understand how frightening this condition is, it can be frustrating. IIH is not immediately life threatening but it does threaten our way of life.

    Amy 💚💙

    A Final Note From Laura

    Thank you so much to Amy for sharing her story for me to share. If you’d like to read more of what Amy has to say, she’d love you to follow her on Instagram @amylrobbo


    Follow Amy ON Instagram

    I’d like to finish this insightful blog post by sharing some information about how to support IIH UK. If you’d like to read my personal story about IIH please click here. https://www.strengthoftears.com/mums-blog/my-chronic-pain-conditions

    IIH UK wishes “to preserve and protect the physical and mental health of sufferers” as well as carry out research and  educate both the public and “the medical community in particular on the subject of IIH.” To enable IIH UK to do this please follow the instructions below. 

    To help us raise awareness please share this blog on your social media with friends and use #IIHAwarenessMonth. We’d love to be able to raise money for IIH UK so..

    •  If you share this on Facebook please add the donate button and choose IIH UK

    • If you share this on Twitter or elsewhere please use this link to the justgiving page, asking your followers to donate https://www.justgiving.com/iihuk/donate/ 

    Or donate now by clicking the link below and making your one off donation!


    Donate to IIH UK NOW

    Stay safe,

    L 💜

    P.S

    If you have IIH or any other chronic illness or you’re suffering from depression or anxiety, I can help you create better wellbeing strategies using my free wellbeing plan. This will help prioritise your own needs, such as better sleep patterns, self care or doing the things you love. Or if you want to get on a waiting list for updates on my first ever well-being journal, please sign up to my Strong Mums mailing list here.

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    A Lonely Challenge: IIH Headache And A BabyA Lonely Challenge: IIH Headache And A Baby

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    A New Perspective - My IIH Headache Taught Me To Be StrongA New Perspective - My IIH Headache Taught Me To Be Strong

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    A Lonely Challenge: IIH Headache And A BabyA Lonely Challenge: IIH Headache And A Baby

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    A New Perspective - My IIH Headache Taught Me To Be StrongA New Perspective - My IIH Headache Taught Me To Be Strong

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    ✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with mental health and/or chronic invisible illnesses.⬇  Hit one of those sharing buttons or save the images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

  • 6 Amazing Mums Helpful Secrets For IIH Awareness Month

    6 Amazing Mums Helpful Secrets For IIH Awareness Month

    6 Amazing Mums Helpful Secrets For IIH Awareness Month

    When I was diagnosed with Idiopathic Intracranial Hypertension (IIH) in 2014, I worried about the impact on my boys’ lives. They were 10 and 11 and it was hard on them. I was lucky as my husband stood by me as we adapted our parenting.

    But every parent with this condition has a different experience, for September’s IIH Awareness Month, I asked 6 amazing mums from the IIH UK Facebook support group, about their secrets as a mum with Idiopathic Intracranial Hypertension to help other mums in a similar position. 

    We’ve done this in the hope that we can fundraise for IIH UK so we’re sharing how IIH affects us as and our children to raise awareness of this rare brain disease. We’d be very grateful if you could make a donation to IIH UK to fund research.


    Donate to IIH UK now

    This invisible illness affects our role as a parent but many of us push through the pain, hiding how we feel from friends and family. One mum I spoke to said that when she’s in so much pain she cries, she hides to avoid  her children seeing her like that. We’ve spoken up this IIH Awareness Month with the hope of sharing the secrets of being a mum with IIH life.

    What Is IIH And Who Gets It?

    IIH occurs when levels of cerebrospinal fluid (CSF), which plays an important role in cushioning the brain, gets too much and the skull can’t expand so the pressure increases. The meaning of the term Idiopathic Intracranial Hypertension is:

    • Idiopathic – unknown cause

    • Intracranial – in the skull

    • Hypertension – high pressure

    This condition is found more commonly in women but does affect about 10% of men. It’s common in teens and young women, but can affect children and adults of any age. IIH occurs in 1-3 people in every 100,000. This is higher in those who are obese.

    The ladies I’ve asked, Sophie, Keri, Leah, Alexandra and Claire and myself range from 21 up to two of us, including myself, being in our forties. Two ladies have been diagnosed in the last year, with many feeling we had symptoms before our diagnosis. 

    During IIH Awareness Month, I believe it’s important to use this platform as a voice for these mums to share their experiences and thoughts about parenting with IIH. By sharing what we live with each day we can show our similarities and differences.  

    How Is IIH Diagnosed And What Are The Symptoms?

    IIH Awareness Month is about raising awareness of this condition. To be diagnosed with IIH someone needs to have brain scans and a lumbar puncture (LP), also called a spinal tap. These 5 things to rule out other conditions and confirm IIH:

    1. Papilloedema (swelling of the optic (eye) nerves 

    2. Normal neurological examination (sixth nerve palsy causing double vision is allowed)

    3. Normal brain imaging. This is usually a CT or MRI scan

    4. Normal brain CSF analysis

    5. Elevated lumbar puncture with an opening pressure, usually above 25cm

    As diagnosis requires an LP or spinal tap, this can be quite distressing. Read this leaflet for more information about the procedure.

    Sophie was the only mum here to have had a negative experience with an LP. She said “the first one I ever had knocked me for six. I ended up in hospital for a week… due to too much pressure removed. It was very hard on my boy because he’d never been away from his mummy.”

    Papilloedema occurs when CSF pressure compresses the nerves supplying the eye. This affects vision and may lead to vision loss, meaning emergency treatment, such as shunt surgery, may be needed to save vision. Please read this leaflet from IIH UK about shunts.

    I asked the ladies about their 3 worst symptoms. This differed between each of us, with a few ladies saying their symptoms differ daily. Alexandra said “My symptoms differ from day to day, however I have a handful of symptoms that affect me most.”

    All six of us said that headaches or ‘migraine’ was one of our worst symptoms. Sophie described it as: “Migraines, where I physically can not open my eyes or move my head. [Migraine] has also caused me to have memory loss from the pain.”

    She goes on to say “I find that this condition comes with a problem. People stereotype it as headaches, and nothing else, [saying] ‘go take a paracetamol, you’ll be fine!’. I hate that, when my head is so bad, I can’t open my eyes.”

    However 6% of people with IIH never have papilloedema and headaches are more telling as to their diagnosis. This is called IIH Without Papilloedema (IIHWOP) and is harder to diagnose. I was given this diagnosis in 2014. You can read about my diagnosis story here.

    Another common symptom is brain fog, feeling like you’re spaced out, which is described well by Keri: “I drive my children nuts as I start a conversation and then just stop, as I can not remember what I was saying.” This and having difficulty understanding words is called aphasia. 

    For IIH Awareness Month I want to share the mostly common symptoms other than headache and Papilloedema, that the mums shared with me:

    • Vomiting and nausea

    • Memory loss or brain fog

    • Pulsatile Tinnitus – a whooshing or throbbing in the ears (in time with the heartbeat)

    • Dizziness and Vertigo

    • Black outs

    • Temporary Eyesight/Vision problems

    • Tunnel Vision

    • Hearing sensitivity

    • Neck pain

    • Eye pain, described as “stabbing pain behind the eye”

    • “loss of feeling in my legs and arms”

    Alexandra spoke about her worry about “The loss of feeling and vision [being] quite dangerous, especially being a mother. I don’t have any sign that the loss is coming on so things as simple as walking downstairs with my son can be potentially dangerous!”

    Watch this short video about the symptoms made by IIH UK

    As it’s IIH Awareness Month I’ve also included this descriptive piece written by one of a group of founding members of IIH UK, Rachel Turner.

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    Imagine your head poem written by Rachel Turner,,one of a group of founding members of IIH UK . This poem is written to raise awareness of the symptoms people with Idiopathic Intracranial Hypertension or IIH experience. This IIH awareness month we w…

    What Treatment Is Available?

    IIH is often treated with weight loss as, although not all people who are overweight develop IIH, there is a big link. Medical studies have shown an increased chance of developing IIH as weight increases. This leaflet from IIH UK explains more about this.

    Despite there being a strong link between weight gain and IIH, only one of our Mums spoke positively about weight loss, saying that it put her into remission for a long time. Another said that she didn’t “necessarily believe weight loss is the answer for this condition.“

    For more IIH Awareness Month detail I asked the mums about other treatment such as Topiramate, a common migraine treatment which most of the Mums are on and Diamox, which decreases CSF production but causes many side effects, which is why Sophie came off this medication.

    Surgery is also used to decrease CSF production, usually via shunts. I’ve had stent surgery but none of the others have had surgery, some due to other illnesses. Lumbar punctures can also be used to release excess CSF and 2 of these mums said they’ve had a countless LPs as they are unable to have surgery due to pre-existing conditions. 

    “
    The relief from a LP is typically short lived as CSF is secreted from the choroid plexus at a rate of 25 mL/hour and consequently the volume removed in a so-called therapeutic tap is rapidly replaced
    ”

    — Jensen RH

    All treatments for IIH impact your quality of life, with the many side effects of medication or if you’re recovering from LPs and/or surgeries. The mums I spoke to for IIH Awareness Month have shared how they’ve been affected but we’re all different so our treatment is personal to us. Read this article from the British Medical Journal for medical insight into managing

    What Is It Like To Be A Mum With IIH?

    Claire has 2 children and was diagnosed in 2018 but had symptoms in 2015 whilst pregnant. She says that the worst part of having IIH is “not being able to take my girls out as much as I can never plan anything, as I don’t want to disappoint my youngest who doesn’t understand if mummy has to cancel things.”

    Leah has 3 young children and was diagnosed in the last 3 months of when I wrote this IIH Awareness Month Blog. She feels that she’s not “the fun mum who used to dance and sing. When my kids ask ‘can you play’?…and there little faces just drop.” But her “children are so good and do understand that I’m more unwell than I am well”.

    Keri has 3 adult children and was diagnosed two years ago but thinks she’s been suffering for 20 years or so with what she was told was migraine. She said “IIH has changed me. I am not as confident as I used to be.” As a working mum Keri has reasonable adjustments in place and says “if I’m feeling tired or have headaches” I can have office based time but “by Friday I am ready to collapse and I spend the whole weekend recouping.”

    Sophie has 2 children and was pregnant at time of writing. She was diagnosed in 2013/14 and says “when my head is so bad, I can’t open my eyes.” But after an LP, her husband and son notice she has higher energy levels and is less grumpy. 

    Having a support network of some kind is something I feel I couldn’t do without and as part of IIH Awareness Month we want others around us to stand by us. Sophie says she’s “happy I do have the support of my family and friends, even with the lack of understanding.” 

    Leah said “I do have a lot of support from my mum, she’s my rock. I would be lost without her and my mother in law.” Claire said “My partner has taken up a lot of the cleaning as I struggle with bending up and down too much as it makes my head feel weird.”

    Alexandra was diagnosed with IIHWOP in 2019 and has a young son. He knows that mummy can be sick quite a lot. She talked about the impact on her mental health, which is important to raise this IIH Awareness Month. She said “some days I find myself shouting for no reason… It breaks my heart because my toddler obviously doesn’t understand.” 

    People with IIH are at risk of developing mental health problems or have preexisting conditions worsen or reacting with medication. Sophie said ‘it’s left me alone and unaided by the world because know one understands. The condition changes our quality of life considerably.

    IIH Awareness Month: Being A Parent Will Make You Fight

    Due to the symptoms of increased pressure, our behaviour changes with some long term and some short term effects. We all manage this differently but it’s definitely harder to mother with this condition.

    It has affected my role as a parent in many ways and the mums I’ve spoken to for IIH Awareness Month feel the same. Our children, at almost any age, understand that we’re sometimes too unwell to play or do activities together. 

    As my boys are now teenagers, they understand that I struggle to chat on bad days. They’ve understood what surgery I’ve had and they look out for and after me. The common theme from speaking to these mums is that it’s our kids that keep us going.

    Claire’s the main carer for her disabled daughter so “doesn’t have much choice but to carry on.” She can have all her “symptoms at the same time and they can last for weeks and they affect everything. They restrict what she can do with her daughter but she can still be there “laying down as it helps with the nausea and dizziness.”

    Leah, who’s husband works 8 weeks on and 3 weeks off, feels that IIH has changed her family a lot. “My children do understand but they miss their old mum. If I’m having a good day I try to sing and dance and boom the music just so they know I am still here.” Dancing makes her head hurt but she still does it because she is a mum first. 

    Keri has adult children so can say she needs time out, however, she is still fighting an invisible illness. She said “I try not to complain about being in pain with either my head or my eyes or the fact that I’m tired because otherwise I’d be complaining all the time and that’s not fair on my family.”

    Sophie, who has young children, said “I don’t get extra help with anything. I was a mother first and I will be a mother last.” Despite this she says “I have to lay down from pure fatigue and migraines and hide and cry a lot but I don’t let anyone see.” She’s had one experience when she couldn’t remember her son’s name for a day. 

    For myself, having older boys, I’ve always been as honest as possible, my husband has helped me explain the surgeries to them. We’ve learnt strategies to help them cope with the ups and downs and we’ve developed stronger relationships. 

    I know I wouldn’t have fought to be here writing this today if I wasn’t their Mum. I spend most days in bed and miss out on going out as a family. So I’ve learnt to be more present and limit distractions when they come and see me, so that even short chats are meaningful. 

    In my opinion, Mums with IIH think, speak and interact with their kids with more intention. I believe we make the most of the good or better days that we have and that most of us try to hold on to the hope that one day there may be a cure! Sharing these stories in IIH Awareness Month, shows what makes us strong.

    The Takeaway

    IIH is a brain condition that causes debilitating symptoms due to raised pressure in the skull. It causes severe headaches, vision problems, and even loss of sight as well as many other symptoms.

    As it’s mostly younger women who develop this condition, I focused this blog on mums for IIH Awareness Month as I wanted to share the impact IIH can have on the role of a mother. 10% of sufferers are men however.

    Some of us have a stressful time trying to get an actual diagnosis. Mums that I’ve spoken to have had symptoms for years before being diagnosed. Keri and I are both examples of being misdiagnosed with migraine. 

    Being a mum with IIH is different for each of us. For those with young children there’s additional mum guilt, although we all get it, because their children are active. Alexandra said it’s “very sad to me as he is just a toddler and I should be able to play and do fun things all of the time but I just can’t.”

    Having a support network of some kind is something I feel I couldn’t do without. Leah said “I do have a lot of support from my mum, she’s my rock. I would be lost without her and my mother in law.” Claire said “My partner has taken up a lot of the cleaning as I struggle with bending.”

    I’d like to thank everyone trying to raise the profile of IIH Awareness Month by contributing to this blog and sharing the difficulties we face. Many of us find balance over time. As Sophie said “this is a lifelong condition” that makes us feel that we’re not being ‘us’ anymore”.

    Alexandra said “There are days I cannot even get out of bed…I feel horrible because I can’t always play and be the fun mummy I would love to be.” Leah sums up “Most of us are constantly wondering what we did to deserve this, but that’s life, we get what’s thrown at us.”

    IIH changes us as women, mothers, partners and the relationships we have with our children and family. We want people to take notice that this is a condition we will live with for our whole life and many of us lose vision to some degree and can even become blind. It really is not just a headache! 

    Stay safe,

    Laura 💚💙

    Click here to find out more about me

    To help us raise awareness please share this blog on your social media with friends and use #IIHAwarenessMonth. We’d love to be able to raise money for IIH UK so please add the donate button if you share on Facebook or donate now by clicking the link below and making your one off donation.


    Donate Now Via Justgiving

    ✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬇ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!

    IIH Awareness Month: Being A Parent Will Make You FightIIH Awareness Month: Being A Parent Will Make You Fight

    6 Amazing Mums Helpful Secrets For IIH Awareness Month6 Amazing Mums Helpful Secrets For IIH Awareness Month

    Imagine your head poem written by Rachel Turner, one of a group of founding members of IIH UK Imagine your head poem written by Rachel Turner, one of a group of founding members of IIH UK

    IIH Awareness Month: Being A Parent Will Make You FightIIH Awareness Month: Being A Parent Will Make You Fight

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  • MS Awareness Week: Insider Advice For A Quality Life

    MS Awareness Week: Insider Advice For A Quality Life

    MS Awareness Week: Insider Advice For A Quality Life

    MS Awareness Week 2020 began on Monday 20th April and finishes on the 26th. This week is a chance to raise awareness of Multiple Sclerosis or MS, so I’m sharing information about what MS is, the symptoms and how it affects those living with this invisible chronic condition. 

    This is the first of my awareness blog posts that I’ll be sharing regularly with you. So why do I want to start with MS?  As a young adult one of my best friends cared for her mother who had advanced MS. I remember the last day I visited clearly as she passed away soon after. 

    Our friendship gradually drifted apart but I’ve had other friends who’ve had a parent with MS and I’ve seen first hand some of the amazing fundraising efforts. Now I have a few friends (some of the first friends I made as a chronic warrior) who are fighting their own battles with MS. 

    This one’s personal so I’d love it if you share this blog, visit the blogs I recommend or look out for #ThisIsMS or #MSWeek on social media. I want to do what I can to help spread the word and would be thrilled if you too pass this on? For more details click here to visit this MS Society Awareness Week page.

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    MS Awareness Week Insider advice for a quality life. This MS Awareness Week the MS Society wants to raise awareness of life with MS.

    This MS Awareness Week the MS Society wants to raise awareness of life with MS. They want to show how someone may be feeling on the inside, when from the outside they ‘don’t look ill’. For all of us living with chronic invisible illnesses, we may struggle with anxiety or stress so I’m giving away my free grounding exercises for anxiety at the end of this post.

    If you just can’t wait, grab my free grounding techniques guide now. You’ll get this and all my free resources to help you develop your own coping strategies for your family well-being/living with chronic invisible illness. Click the button to download this guide from my VIP Resources Library now.


    Download My Free How to Cope with Anxiety Guide

    An Overview of MS

    MS or Multiple Sclerosis is a disease affecting the central nervous system (the brain and spinal cord) and is a chronic or life long condition. Everyone affected by MS will experience it differently and will have varying degrees of symptoms across the three main types of MS.

    Approximately 130,000 people in the UK have MS, with nearly three times more women diagnosed with the condition than Men. Approximately 100 people are diagnosed each week, with most of these in their 20s and 30s, making it the most common Central Nervous System condition in young adults. 

    Our central nervous system consists of the brain and spinal cord and plays a vital role in the control of most bodily functions. Nerve cells exit the brainstem and spinal cord, processing information and sending messages to and from different areas of your body. 

    In MS patients, the central nervous system is attacked by mistake. The immune system attacks myelin, a membrane that insulates your nerves, causing lesions. These cause MS symptoms, due to the damage stopping messages from the brain travelling smoothly.

    When new MS lesions develop, you may experience a relapse. In the earlier stages, the body naturally repairs most of the damage and symptoms go away but eventually most people develop symptoms that worsen over time. 

    ““Most people will usually experience only a small number [of symptoms] around the time of diagnosis… Symptoms vary from person to person and from day to day. This can make…MS rather unpredictable.””

    — The MS Society

    What are the symptoms of MS?

    MS Awareness Week 2020 wants to raise awareness of more than the physical symptoms that are experienced during an MS relapse so this is a short list of symptoms. If you wish to know more about symptoms and relapses then visit this section on the MS Trust’s website.

    Common symptoms around the time of diagnosis:

    • Fatigue

    • Pins and needles or numbness

    • Pain

    • Problems with eyesight

    • Memory problems

    • Walking difficulties e.g. tripping, stumbling, weakness or a heavy legs

    • Dizziness and vertigo

    Other possible symptoms:

    • Muscle stiffness and spasms

    • Bladder and bowel problems

    • Difficulty swallowing

    • Sexual difficulties

    • Migraines

    • Seizures

    • Speech problems

    • Hearing loss

    • Mood changes

    Medical Disclaimer - I am not a medical professional therefore the content on this blog is for informational purposes only.

    MS Awareness Week 2020

    This MS Awareness Week, the MS society wants to focus on raising awareness of the hidden side of this invisible illness, by asking people to share their stories of living with MS. They’re asking you to share what MS means to you, how it impacts your life and makes you feel.

    If you’re struggling due to living with a chronic illness and need support to cope with anxiety then please grab a copy of this free guide to grounding exercises for anxiety. It helps you to explore 5 simple exercises and learn which you want to recall during an anxiety or panic attack. 

    If you want to join in head to Get Involved MS Awareness Week for more details on how to share your story. If you want to read these stories then use the hashtags #ThisIsMS and #MSWeek on Twitter, Facebook or Instagram this week. 

    To help raise awareness I’m sharing my favourite articles about living with this condition by my top 5 MS bloggers. MS has many symptoms but not everyone will experience all of them, so I’m sharing stories from bloggers who experience a range of symptoms.

    The main message of MS Awareness Week is to show what is going on beneath the surface. As I can’t explain this to you myself, I’m going to leave that up to these 5 MS advocates. I hope you get an increased understanding of the impact MS has. This is MS…

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    5 Experts Share A Behind The Scenes Hope - MS Awareness Week. raising awareness of Multiple Sclerosis. information about what MS is, the symptoms and how it affects those living with this invisible chronic condition.

    5 Experts Share A Behind The Scenes Hope – MS Awareness Week

    1. https://stumblinginflats.com – Barbara from Stumbling In Flats is an established writer, author and blogger. I first came across her as a fellow Teva Life Effects contributor. She lives with ‘The Teenager’ in Cardiff and has been diagnosed with MS for 9 years. Her book, Stumbling In Flats, was short-listed for the International Rubery Book Award 2015.

    ‘We’ll Do What We Do Best’ seems like the perfect blog post to share for MS Awareness Week. She writes about how the MS community has come together, at a time when MS patients are ‘shielding’. This post has definitely made me think.

    Her observation on ‘doling out advice to normally-healthy people stuck at home, climbing the walls’, is familiar as I feel like I’ve been training for lockdown. Everyone is getting a glimpse of our lifestyle but we wish the many resources, like theatre at home, were available for us all the time. 

    Click here to read her post

    2. http://trippingthroughtreacle.com – Jen’s award winning blog – Tripping Through Treacle is about her attempt at a healthy lifestyle, parenting, mental health and more. She’s had MS for over 25 years and tries to stay positive with support from her family and friends.

    I recommend Jenny’s post – ‘Bravery’ in Chronic Illness which talks about both points of view on being told you’re brave, amongst the chronic illness community. I feel that I’m just living the hand I was dealt but I do understand how some feel like people are pitying you when they tell you you’re brave. 

    Others take it as a compliment, feeling like it gives them strength, especially on those days when they feel anything but brave. Jen observes that there’s actually a spectrum of opinion on how being called brave makes people feel.

    Personally I don’t feel that people are pitying me, rather that they cannot see themselves in my position so cannot envisage how they would cope. I struggle more with being called ‘inspirational’, for similar reasons but that’s a post for another day. 

    Click here to read her post

    3. https://www.anempoweredspirit.com – An Empowered Spirit is an award winning blog written by Cathy, who’s been living with MS since 1986. She wants to empower, inspire, and educate her readers so they can live a healthy and informed life while living with MS.

    As this year’s MS Awareness Week is aiming to raise awareness of the invisible side of MS, I’ve chosen to highlight her blog about relationships and MS. She writes of how having a support network reduces anxiety and stress but sadly many people lose this, after a chronic illness diagnosis. 

     

    After my diagnosis, my husband and I took action and asked for support. Through this we found how, as a family, we needed to work as a team. It’s made us all more resilient and empathetic. 

    I agree with Cathy when she says that successful relationships require learning how to voice your feelings in a caring way. Having this skill is vital to how we cope as a couple and as a family, with the strains of chronic illness life.

    Click here to read her post

    4. https://www.lifeonaseesaw.co.uk – Kat from Life On A Seesaw is also a contributor to Teva Life Effects. I recently saw that she lived near me so I messaged her and discovered she lives in the same village we moved from, just before I was diagnosed.

    Kat lives with her husband and young son and was diagnosed with Multiple Sclerosis in 2016. She loves photography, writing and being in nature. Her message is that we are much more than our diagnosis and hopes to provide empowering articles.

    I recommend reading her Just Diagnosed? Tips For Patients post. She says that “When you are diagnosed with MS, so is everyone in your family.” Her post is intended to answer some of the questions Kat had when she was diagnosed. 

    Regardless of how you come to be diagnosed with MS, Kat say that it’s still a shock. She talks about you and your loved ones all needing time to digest your diagnosis. I feel this is a universally important tip for anyone diagnosed with a life changing condition.

    Click here to read her post

    5. https://fightmsdaily.com – Alyssa from Fight MS Daily is an award winning, inspirational chronic illness blogger. She has been diagnosed with MS for over 19 years but still pushes the barriers that MS puts in front of her. She says “In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times!”

    I recommend reading her post Fight the Battle & Win the War! She acknowledges that although life with a chronic illness with painful symptoms is not easy. However she has vowed not to let pain win the battle. 

    She comments on the things we can do to fight the pain we may feel, acknowledging that what works for her might not work for anyone else. For example, she finds that her pain lessens if she keeps moving, despite that not making much sense to her. 

    Click here to read her post

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    MS Awareness Week 20220

    MS FAQs

    I hope, as do the writers of the blogs above, that you’ve found this information useful. I also hope that by signposting these blogs for you that you get the answers you need and the support that we as bloggers, hope to provide you with. 

    I’ve added FAQs to the end of the blog for those of you looking for a quick answer to your questions. However if you want non-urgent medical advice, please visit these sites for support:

    https://www.mssociety.org.uk

    https://www.mstrust.org.uk

    https://www.nationalmssociety.org

    https://msfocus.org

    https://mymsaa.org

    Is there a cure for MS? 

    No there isn’t a cure for MS, but there are treatments for some of the physical symptoms and medications which reduce the amount and severity of relapses. 

    What causes MS? 

    It’s still unknown what causes Multiple Sclerosis but it’s being actively researched. There seems to be a number of different factors that when put together, trigger MS. Genes may make up around half the risk of getting MS.

    Can I treat myself by eating healthily?

    It is really important that you take any medication prescribed by your physician. There are complementary therapies that some people find helps reduce the severity of relapses.

    It’s also thought that a lack of sunshine or exposure to some viruses, smoking, obesity and long-term solvent exposure may be a factor. Being healthy is a good choice but it cannot replace your medical treatment plan.

    Can I have children?

    “MS rarely affects a woman’s ability to get pregnant, carry a child or give birth. A woman with MS is less likely to have a relapse during pregnancy, although the risk of relapse increases during the six months after the birth.”  It is important that you discuss this with your doctor because of the risk that some medications could have on a foetus.

    Is MS hereditary ?

    Some genes do make it more likely but this on it’s own is not enough to trigger the condition. The risk of another member of your family getting MS is small. The cause of MS is a vital area of research and it’s thought that a number of factors come together to trigger MS.

    Will I become disabled?

    MS may impact your ability to do certain things in the future and you’ll need to adapt with these changes. MS can cause disability, however, most people won’t need to use a wheelchair permanently.

    What is the prognosis?

    MS is a lifelong condition but it’s rarely fatal due to advances in treatments but as everyone has a different experience of symptoms,cno-one can predict how MS will affect you. Most people with MS have a long life, with an lifespan estimate of six years less than the general population. 

    Final Thoughts

    By writing this blog, I’ve learnt that you wouldn’t know someone was experiencing almost all the symptoms of MS. Therefore we must all remember that we never know what someone is going through underneath the surface, so please choose kindness. In light of this, if you feel that you aren’t coping well with anxiety or panic attacks, please head to my blog post – How To Develop Easy Strategies For Coping With Anxiety.

    Just a reminder that this MS Awareness Week, the MS Society wants to raise awareness of life with MS. They want to show how someone may be feeling on the inside, when from the outside they ‘don’t look ill’.  Help make sure that no one has to suffer MS alone by sharing your story on social media using the hashtag #ThisIsMS. Find out more detail by visiting the MS Society’s MS Week page.

    To help raise awareness for MS, please share this blog and look out for #ThisIsMS or #MSWeek on social media. If you’d like me to see it then please tag me in it (see my links below). I’d love to hear from you in the comments if you visited any of my 5 blog recommendations or if any of this spoke to you

    Thank you so much to the ladies who kindly let me share their blogs with you today. If you have MS and are shielding or in self isolation now, I send you my best wishes and positive energy to help get you through.

    Stay Safe,

    Laura 💜

    P.S Don’t forget to download my grounding exercises for coping with anxiety free guide from my Strong Mum’s Resource Area when you sign up to my mailing list. This guide will help you develop your own coping strategies for your own and your family’s well-being/living with chronic invisible illness. 


    Click here for access to my VIP resources library now

    ✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬇  Hit one of those sharing buttons or save the images to Pinterest and I will do a bed-bound happy dance – there’s an image for you! 

    View fullsize

    5 Experts Share A Behind The Scenes Hope - MS Awareness Week5 Experts Share A Behind The Scenes Hope - MS Awareness Week

    View fullsize

    MS Awareness Week: Insider Advice For A Quality LifeMS Awareness Week: Insider Advice For A Quality Life

    View fullsize

    5 Experts Share A Behind The Scenes Hope - MS Awareness Week5 Experts Share A Behind The Scenes Hope - MS Awareness Week

    View fullsize

    MS Awareness Week: Insider Advice For A Quality LifeMS Awareness Week: Insider Advice For A Quality Life

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