Spoonie Essentials

I Am a Spoonie

I’ve been thinking for a while about collating a list of “Spoonie Essentials” or things that make life as a spoonie a little bit easier. Different things work for different people and there isn’t a one size fits all when it comes to chronic illnesses, but these are the things have have helped me, given me comfort or made my life a little bit easier.

Books

  1. Hyperbole and a Half – Allie Brosh
  2. The Truth Pixie – Matt Haig
  3. Living With the Enemy – Ray Owen
  4. The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
  5. Miranda’s Daily Dose of Such Fun – Miranda Hart

TV/Film

  1. Five Feet Apart
  2. Brain on Fire
  3. Atypical
  4. Groundhog Day
  5. We Are Visible

Podcasts

  1. Sickboy
  2. This Is Not What I Ordered
  3. Chronic But Ironic
  4. Feminists Don’t Wear Pink (Scarlett Curtis)
  5. Shagged, Married, Annoyed (Rosie and Chris Ramsay)

YouTube

  1. Amy’s Life/Amy Lee Fisher
  2. Life With Stripes
  3. Georgina’s Journey
  4. Chronically Jenni
  5. Jessica Kellgren-Fozard

Health Care Esstentials

  1. Dry shampoo (Batiste or Colab Dry Shampoo)
  2. Body Shop Almond Milk Body Yogurt
  3. Au Lait | Scottish Fine Soaps – Body Butter
  4. Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
  5. Amie Petal Perfect – Cleansing Micellar Water

Snug as a Bug

  1. Weighted blanket
  2. Hot water bottle
  3. Heated blanket
  4. Wheat Pack
  5. good pillow (I have a V pillow and a memory foam pillow)

Odds and Sods

  1. Large medication box
  2. A support system (friends, family, health care professionals, people who just get it)
  3. Technology to keep connected to the outside world
  4. A bag – fashionable but sensible. Mine is similar to this
  5. Mobility aids (crutches, wheelchair, cane, walkers etc)
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Spoonie Authors Network

NB – If you aren’t familiar with the Spoonie Theory, click here

June Favourites – Lockdown Edition

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Books

Instead of talking about books that I have read over the past month, I want to highlight books by Black and Asian authors, in the wake of the BLM protests and George Floyd.

  • Queenie – Candice Carty-Williams
  • Such a Fun Age – Kiley Reid
  • Why I Am No Longer Talking to White People About Race – Reni Eddo-Lodge
  • It’s Not About the Burqa – Mariam Khan
  • Does My Head Look Big in This? –  Randa Abdel-Fattah
  • I Am Thunder – Muhammad Khan
  • The Hate U Give – Angie Thomas
  • Clap When You Land – Elizabeth Acevedo
  • The Color Purple – Alice Walker
  • Noughts and Crosses – Malorie Blackman
  • The Girl Who Smiled Beads – Clementine Wamariya

 

Film/TV

I’ve been continuing to take advantage of lockdown by watching more things on Netflix. I loved Dead to Me, a comedy focusing on a widow who is searching for the person responsible for killing her husband in a hit and run. Unbeknown to her, the driver befriends her at a bereavement support group. In a weird way, it explores the funny sides of grief, loss and forgiveness and I can’t wait for series three.

Based on the book by Celeste Ng Little Fires Everywhere, is a recent adaptation for Amazon prime. I was slightly underwhelmed by the book, but I loved the series.

Glow Up has become a little bit of a guilty pleasure over recent weeks. It reminds me of when I was at university and my Tuesday evenings were made with another BBC Three creation, Hair, which followed hairstylists bringing to life crazy and unique hair designs, to be crowned the best hair dresser. Glow Up follows a similar theme but with makeup artists undertaking various tasks and elimination rounds. I didn’t want to like this, but I’ll hold my hands up, I love it!

 

Spoonie Favourites

I recently discovered B12 super energy patches. I decided to try these as my B12 levels aren’t great and I struggle with absorbing tablets due to my gastroparesis (and I take so many on the daily). It’s hard to tell whether or not they have made a difference, or if it’s just been a placebo effect, but I seem to have more energy and less fatigue so it’s a winner for me.

Odds and Sods

Okay so it’s not really a secret that I love the Body Shop, so whenever they realise a new range, I’m normally pretty happy with it. Their latest range of cooling cucumber and zesty lemon has not disappointed. The cucumber body yogurt is brilliant if you are a little bit sunburnt and the lemon is a lovely scent without being over powering.

I recently decided to have a moment of extravagance and purchased the most expensive skin care item that I have ever bought. Said item is Charlotte Tilbury’s Magic Eye Rescue. At £42 for a 15ml pot, it is a lot of money and whilst I really love it, I don’t know if I would buy it again because I cannot justify the price. My eyes seem slightly less puffy and the skin feels smoother but my black bags haven’t magically disappeared which was what I was hoping for!

My final favourite for this month is a bit of a weird one. As many of you will know, May is Ehlers-Danlos Syndrome awareness month and out of coincidence, Matalan have been selling a cute little zebra cushion. Zebras are the EDS mascot so it was meant to be! At the time of writing, it is out of stock, but they do have other zebra-ish stuff, so it’s worth a look.

 

 

 

How I Survived Lockdown

c5912582950c0186a1fc30b74387836cI found out yesterday that I will be returning to work on Monday (15th June), after 13 weeks of isolationa/shielding. I started shielding a week before I was medically told that I needed to and I was incredibly lucky that my employers were understanding – I think being honest about my health from the start helped. But they didn’t complain or make me feel bad, in fact they went out of their way to reassure me that things would be okay and that it wasn’t causing huge issues. Despite that, I felt incredibly guilty for leaving them in the lurch. I was also bloody angry that yet again, my health was dictating what I could and could not do.

Rewind to this time two years ago, I wasn’t working, due to my worsening health. I was very isolated and rarely left the house, unless it was for medical appointments. I can’t deny that part of my anger stemmed from the fact that I had spend over two years effectively in isolation due to being so poorly that I couldn’t properly partake in society, and now I was facing months of yet again being stuck at home, unable to work, unable to see friends and family and losing my independence that I had worked so hard to regain. 

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That said, I have coped remarkably well with isolation. I think that living with chronic and mental illnesses kind of prepare you for not being part of society for long periods of time. When you have a chronic illnesses, the chances are that you spend weeks/months/years at home, often unable to leave your bed. The world carries on, outside your windows, but you aren’t part of it. Whilst I had moments of feeling a bit penned in, lockdown didn’t really bother me that much because it was a lifestyle that I was used to. Having mental illnesses also prepared me, in part, for the madness that is covid-19. I have anxiety and can easily catastrophise about the world ending and going through endless what ifs. On so many occasions, I have convinced myself that the absolute worst was going to happen, so when the world imploded and shut down, it wasn’t actually as bad as I had built it up to be in my mind. Every day I panic about the people I love dying, and suddenly that became a very real threat. But that threat felt normal for me, so whilst other people were panicking about loved ones getting ill and dying, I basically sat back and thought “this is my normal, this is okay.” Having an excuse to be anxious and not being viewed like I was being dramatic or overreacting was quite a nice break. I felt like saying “welcome to my daily life. Exhausting right?” I wasn’t having to constantly explain my irrational thoughts, because suddenly they weren’t irrational. 

That said, I did make a conscious effort to try and look after myself during lockdown. Mentally, things were a bit wobbly towards the beginning (nothing to do with covid) and I quickly realised that it was unlikely that I would get any additional support because, put simply, it wasn’t there any more, as everything had shut down. It was a bit of a sink or swim moment, and I had spent so much time sinking, that I figured that trying to swim was worth a try. 

So how did I survive lockdown without relapsing and becoming very unwell?

Sticking to a routining has been really important. I’m not going to pretend that I was up and dressed by 8am every single morning, like I would if I was at work. That would be a lie. But I have tried to wake up by 10ish (unless I felt ill) and then get up. I could happily live in pyjamas but I made sure that I could dressed every day because I will admit, I mentally feel better if I have made the effort to look presentable. I tend to put aside some time every day to exercise in some form, do some of the endless medical and adult admin that seems to have accumulated over the past few months and I have done a lot of reading. I kept meaning to write down all the books that I have read during lockdown because it’s a pretty impressive selection. Even though I haven’t been able to go out-out, I have spent time in the garden and actually developed a bit of a tan. I know, mad. 

On the days when the weather hasn’t been so good, or when my body has been rebelling, Netflix has been fantastic, as has Amazon Prime. I have had the time to discover so many new series over the past few months, including Dead to Me, The Good Fight, Alex Rider, Chernobyl and Little Fires Everywhere. 

Weirdly, during lockdown, I have felt more connected than I have done in ages. I am so grateful to my friends who have been at the end of a video call a couple of times every week. Even though no one has been doing anything particularly exciting, just spending time in their company has been really nice and it’s left me feeling a lot closer to them. I also have send more letters and happy post to friends, because receiving something other than a bill or medical letter makes a change from the norm.

Being kind to myself has been really important. We are living in unprecedented times so doing little things to try and keep myself happy, sane and healthy has been a priority. This ranges from using a hair mask once a week to try and save my hair when I can’t see my hairdresser, to making a conscious effort to try and eat well. I’ve tried to exercise most days and have also been doing sudoko and other brain training games. I don’t for one moment that it will improve my brain skills or intelligence, but I want to keep mentally active, as well as physically active.

As life slowly begins to return back to normal, spare a thought for those people whose life won’t be drastically changing and will instead be remaining at home and isolated from their friends, family and society. Millions and millions or people are silently missing, please don’t forget them.

Life as a Young Carer

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This month’s guest post is written by Alice. This week is carers awareness week, so it seemed only right to hand over to Alice. Alice is ten years old and lives with her mum Chantelle. She has been a young carer since the age of six, as Chantelle lives with ME/CFS, joint hypermobility and pernicious anaemia. You can find Chantelle on instagram.

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Chantelle and Alice (photo belonging to Chantelle)

 

A young carer is someone who helps someone else in their family, unpaid, when someone has any type of physical or mental illness, physical and/or mental disability or misuses substances such as alcohol or drugs. This could be a parent or a sibling. A young carer could help with household chores, help the family member with getting dressed or help lift or carry items. They can help out around the house but also help out when out, for example helping with shopping. I help by mum out by helping around the house by doing things like the washing up and vacuuming. I also help my mum out by making drinks or helping to get her medication.

The best part of being a young carer is knowing that I’m helping my mum out and that I’m making her life a bit easier. I am also part of a young carers group in Gloucester so I have made new friends. As well as this, I also go to a group where I am able to play games and do crafts. It’s nice to be around others who understand what it’s like being a young carers and having a relative who isn’t very well.

The worst part about being a young carer is when other people don’t understand what a young carers is when they don’t understand my mum’s illnesses. People don’t always understand when we can’t go out or do the same things as my friends.

Lockdown as a young carer has been up and down. I’ve got to spend more time with my mum and have enjoyed home schooling but we haven’t always been able to go out as my mum hasn’t been well enough and she can’t drive very far without getting very tired. We have enjoyed doing things at home though, like arts and crafts, puzzles and playing in the garden. When Mum has a rest I like to play with my Lego or teddies or draw pictures of monsters! I know how important it is to let mum rest so this is part of our afternoon routine.

My mum and I are a team and life as a young carer is just normal to us.

If you are a young carer, or know someone who is, and are in need of support, you can find information from Young Minds and The Carers Trust.

Dating and Chronic Illness

I am single. Happily single most of the time, however that’s not to say that I don’t date and I haven’t been in relationships. I do date and I have been in relationships, just right now, I am single, a cat lady and I love to starfish in my bed.

If you had asked me as a teenager, I should be married by now and well on the way to the 2.4 children that is the average. Life had different ideas for me and I feel mixed about that. It’s not that I don’t want a relationship: I have profiles on two online dating apps and I have been speed dating (that was an experience in itself!) but I am aware that I come with additional baggage and that can be a lot for someone else to take on. There are days when it feels like I haven’t come to terms with having long term illnesses, so how can I expect someone else to take that on as well?

Honestly, my experiences of dating with a chronic illness have been mixed. Trying to decide when to tell someone about the various chronic illnesses that I have is hard. Telling them too soon and they are likely to freak out, tell them too late and they are likely to be annoyed that you didn’t say something sooner.

I had a pretty bad experience with someone I met through an online dating app, I made the decision not to say anything about my health but I constantly felt like I was deceiving him. Things were going really well, but it got to the point that I had to tell him that I wasn’t well. I had just been offered my dream job but had to turn it down due to worsening health issues and obviously he asked questions about why I wasn’t in work. I explained that I had long term health conditions and because of that, I was in hospital a lot and not able to currently work. In an instant, it was clear that he had lost interest but also very clear that he didn’t really understand when he said “but you look fine?” Date night came to a rapid end and I never heard from him again. I’m not going to pretend that I was heartbroken, I wasn’t, but I was hurt, mainly because I expected better than that reaction. I had hoped that given he had got to know the “real” me, he wouldn’t be completely freaked out by what I said. How wrong I was. It hurt because it made me feel unloveable, a feeling that I have now experienced one too many times.

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Learning from that experience, I decided to be honest earlier on in getting to know someone. And that didn’t go well either. I tend to start with the caveat similar to “this is a lot to take on, so I’m telling you now so that you have the choice to leave before we get to know each other better.” I don’t know if it’s the right thing to say, but it’s kind of giving them permission to run away and not feel like a dick about it. I get hurt, but hey, at least I’ve spared their feelings! On one occasion, I was asked numerous questions and felt like I was being interrogated. Then there was the radio silence, never to be heard from again. On another occasion I was told that it wasn’t going to work because he didn’t want to be with someone who would break during sex. For clarity, I do not “break” during sex. Another time, they had the decency to carry on talking to me for about ten minutes before disappearing into the abyss, never to be heard from again.

And I get it. It is a lot to take on. Quite often people can’t see beyond the illness or understand that if you take away all the health conditions, I am still a normal woman in her twenties, eventually wanting to settle down and think about having a family. Whilst I might joke and say that they weren’t the one, that doesn’t take away the hurt. It doesn’t take away from the fact that I feel undeserving of love because it’s too much for someone else to take on. It doesn’t take away from the fact that being loved for how I am is too much for the majority of people to take on. So yet again, I am left with having to pick myself up. I leave it for a while before dipping my toe back into dating, telling myself that this time, it will be different. I’m yet to have an experience that is different. I’m yet to meet someone who is fine with the fact that I’m a bit wonky and my body does weird things, but is prepared to love me for that. As well as feeling unloveable, I feel faulty. Like, can I return to sender and get a working body please? One that doesn’t freak people out.

Who knows, maybe in a year from now, I’ll look back at this blog post and smile because I am happy and in a relationship. Or I might still be psyching myself up to dip my toe back into the dating pond.

I don’t think there is a clear cut answer on how to address chronic illnesses when it comes to dating. I’m sure there are good people out there who understand, I’m just yet to find them.

Dear 18 Year Old Self

Dear Laura,

You are eighteen and it should be the most exciting time of your life. Unfortunately, right now, you are finding life hard. You are in chronic pain and you don’t know why and you’re spending a lot of time in and out of hospital. But you’re going to get through it and it will make you even stronger (we love a cliche). You think that your A Levels are going to destroy you. Spoiler: they don’t. You won’t enjoy them, you might even cry during them but you’re going to get through them and you’re going to go to university and start the best three years of your life.

Don’t take life for granted and don’t waste time on the wrong people. You will meet the wrong people and part of life is learning lessons from the bad times. Don’t hold on to anger, resentment or jealousy because it will take over. Try not to put your self last, even though doing the opposite seems completely unnatural to you. The things that bother you now will not bother you in the future, trust me on that one!

Hold your good friends tight. The friends you value now won’t necessarily be in your life in the future, but know your self worth and know that it is okay to move on. Laugh and cry with your friends, stay up late and drink bottles of wine. Don’t pressure yourself into going clubbing because it really isn’t as great as people make out.

Believe in yourself! Know your own worth and what you can offer. Don’t be silenced by people who are louder and more confident than you. Try not to compared yourself to other people, everyone is walking their own path and there’s no point comparing your step one to their step five. You’ll get there, in your own way.

Learn how to be independent. Don’t rely on other people for your survival, be happy on your own and be happy with other people.

Dating the wrong people is not a mistake, but staying with them, because you feel that you have to, is. Be your own person and don’t change because a man wants you to. You will make mistakes, in relationships, in life, with decisions but you will learn from those mistakes. Mistakes are okay. Self talk, problem solve and don’t regret what went wrong. It went wrong for a reason.

Asking for help is okay. There will always be people there who are willing to help you. This is your time to learn, but that doesn’t have to be done alone. There isn’t an age limit on success, now is the time to explore, live your life, make decisions (good and bad) and don’t beat yourself up if it goes wrong.

Make memories. Take photos.

Stand up for yourself.

Risk it.

Find and enjoy whatever it is that makes you happy.

Respect yourself and respect others.

Save money and don’t spend all your student loan in one go when you get to university. You’ll be thankful for this when you’re not poor and hungry.

Your mum is [nearly always] right. She will tell you things that you don’t want to hear and she will nag you until the point that you want to explode but she does it because she loves you and cares for you. Never forget that and try and listen to what she says, she is the person that loves you the most and will not turn her back on you.

Also, always drink some water before bed after a night out. You’ll thank yourself in the morning.

You’ve got this,

Laura x

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Emily McDowell

 

 

Volunteers’ Week 2020

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The first week of June marks Volunteers’ Week across the UK, a week to say thank you to volunteers for giving up their time and celebrating work which is done by volunteers. I have been volunteering off and since since I was 15 and I personally think that it is one of the most rewarding things that you can do. You’re able to contribute time and skills to help people, often who are vulnerable, as well as gaining new experiences and opportunities, whilst making a huge difference. Not only that, but at some of the toughest times in my life, I have been able to hold on to the fact that I volunteer: it has given me a purpose and something to focus on when everything seemed impossible hard and has also forced me to think about something other than my wonky body or spiralling mental health. Put simply, I genuinely think that volunteering has saved my life.

As a teenager, I volunteered with Barnardo’s, a children’s charity, before being offered a paid position as a play and support worker. It gave me an escape from the reality of exams, applying to university and instead gave me confidence, new friendships and an escape. It was really tough at times, I was working with disabled children and young people, frequently people who were the same age as me and I was having to do intimate personal care, amongst other things. I very quickly learnt the importance of dignity and putting aside disability and treating service users like “normal” people. Most of my friends worked in retail, but I knew that retail wasn’t the job that I wanted to do. I would go to work and be having to restrain children for their own safety, if they became violent, I would have handfuls of my hair pulled out, I was urinated on and had sperm wiped in my hair (I wish I was joking) and I was dealing with medications and tube feeding and complex health conditions like it was nothing. I wasn’t really sure what I wanted to do with my life, other than being really interested in working with people and this job was my first paddling into the world of supporting young people with additional needs and I loved it.

I stayed in this, now paid, role for six years, working around university and living 200 miles away and gave as many hours as was possible in holidays. It’s only now that I look back, ten years on, do I realise how vital this volunteering position was. When I started, I was deep in the grief process, after losing a friend to suicide. I was struggling with my own health and being bumped around different hospital departments to try and figure out what was happening and I was unhappy at school due to the pressure of exams. My confidence was low but I was welcomed with open arms by a fantastic team of people: little did I know that my initial enquiry about volunteering would see the dark clouds above me start to fade away and bring new light into my life. Not only had I made a difference to people’s lives, I had also made lots of new friends and built my own confidence as well.

Fast forward to September 2018 and I started volunteering with Girl Guiding. In January 2018 I had been offered my dream job, working in children’s social care, but my declining physical health meant that I had to turn it down and instead forge a life on universal credit because I was too ill to work. I sent an enquiry to Girl Guiding to see if there was any volunteering that I could do. Initially this was purely because I was thinking about my CV and was forward planning for when I would be returning to work. The atmosphere in Girl Guiding has made it one of the best places I’ve worked. Everyone is awesome, and I don’t say that lightly.  Everybody goes into Girl Guiding with their own story and reasons for volunteering but one thing is certain, you cannot beat the passion and positivity from everyone you meet. The two hours when I was helping to run a Rainbow group (five to seven year old girls) quickly became the highlight of my week. It gave me my smile back when I felt very lost and without a purpose.

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Girl Guiding Killamarsh

My health deteriorated further over 2019 and I had a few months away from volunteering when I was in hospital. I remember being so anxious about returning and potentially having to face difficult questions. But yet again, I was welcomed with open arms and unwavering support. I didn’t face any stigma or discrimination, maybe because the other leaders had their own stuff to contend with too, I don’t know. It makes such a difference working with people who have a shared understanding, there was a mutual respect that we all had stuff going on in our private lives and sometimes we talked about it whilst always focusing on making the sessions as fun as possible for the girls. The diversity of the role means that even if you’re having a bad week, there is still a role for you. You can be sat dealing with the admin side of running a group or be actively playing with the girls and having fun with them.

Without a doubt, choosing to start volunteering as a teenager was one of the best decisions that I could have made. Continuing to volunteer throughout my twenties proved to me such a strong protective factor in my life that I now can’t imagine my life without volunteering in some respect. So whilst volunteers’ week is about saying thank you to volunteers, it seems only right to say “thank you” to all the people who saw the potential in me and allowed me to volunteer in the first place. You’ve made my life better because of it.

Ehlers Danlos Awareness Month – FAQ

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May is Ehlers-Danlos Syndrome Awareness Month, and so far, I have been pretty quiet about it. However, now seems like a good time to answer some questions about EDS, that I am frequently asked.

What is EDS?

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue in the body. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones and make up over 20% of our bodies. There are 13 different types of EDS, caused by faults in certain genes that make connective tissue weaker. Depending on the type of EDS, the faulty gene may have been inherited from one parent, or both parents, or in some cases, the faulty gene isn’t inherited and can occur in a person for the first time. The most common type of EDS is Hypermobile EDS (hEDS, formally known as type 3) . Rarer types include classical EDS, vascular EDS and kyphoscoliotic EDS.

Does it hurt?

The simple answer to this is yes, it does hurt. I am on painkillers daily. These reduce some of the pain and symptoms that I experience but they don’t get rid of them. In some ways, I’ve got used to being in pain, so a lot of the time, I’m able to block it out and I’ve learnt to live my life around pain. I’ve got a fairly high pain threshold (never cried after breaking a bone kind of high). When I have an EDS flare, things can become more difficult because my pain levels become harder to manage. In these situations, I often have to increase the medication that I take and I’m usually found attached to a heat pack or hot water bottle. Increasing medication comes with its own issues, such as more side effects, so taking more medication isn’t something that I like to do.

Have you tried…?

Probably, yes. I have tried so many things to try and alleviate symptoms, with varying levels of success. Kale hasn’t cured me, nor has a clean eating diet. Similarly, eating quinoa hasn’t cured me. Different things work for different people, EDS affects every single person differently, so whilst a hot bath with epsom salts works for me, it might not work for one of my friends. Aside from medication and heat therapy, I have regular physiotherapy appointments, where my joints/tendons are put back into place or I have ultra-sound therapy, which is a non-invasive way of reducing inflammation in the body.

How did you catch it?

I didn’t. I was born this way baby. Ehlers-Danlos Syndromes are genetic conditions, so I have had EDS all of my life, I just didn’t know. As far as I know, no one else in my family has EDS, meaning that despite being symptomatic since the age of nine or ten, I wasn’t diagnosed until the age of twenty two, as no one was looking for it, or suspected it. EDS is also classed as a rare disease, which makes the diagnostic process longer and more complicated. On average, it takes ten years for a person to be diagnosed with EDS, from the first onset of symptoms. EDS UK ran an awareness campaign highlighting the length of time it takes to receive a diagnosis of EDS. You can watch the video here.

Can you have children?

I have no idea, mainly because I’m not in a position whereby I am trying to have children. However, the diagnosis of EDS in itself does not stop you from having children, but it can lead to a higher risk of complications for the mother and baby. I am very mixed about wanting to have children. In an ideal world, I would love to have children and I would love to be able to conceive naturally, but I am mindful of the fact that EDS if genetic, so there is a 50% chance that I could pass it on. I wouldn’t wish this condition on anyone and that includes any future children. EDS is an unpredictable beast: some days I am absolutely fine, with minimal restrictions, other days I can’t move from my bed and require care from another person for basic daily tasks. Having worked with children and young people who are young carers, that has to be something I will need to consider. Hopefully in time, I will be in a better position to properly decide what is best, because right now, I don’t have the answer.

When will you get better?

I won’t and I find it so difficult when people ask this question or say that they hope I get well soon, because I am not going to get better, in the conventional sense. I have periods of time when things are more manageable, and I lead a fairly normal life but the downside to that is the inevitable payback. And payback is a bit. In the five years since being diagnosed, my health has declined hugely, although that isn’t completely down to EDS, but also co-morbidities, such as gastroparesis and POTS. A future with EDS is sometimes quite scary to think about because I don’t know from one day to the next how functioning my body will be, but I have to remain hopeful that treatment options will improve with time and research.

Will you die from it?

This is probably the worst question that I have been asked, in relation to EDS and it’s such an important one to answer because of that. To make this question hit even harder, it was asked by a paramedic, whilst I was being rushed into hospital by ambulance. I reminded him that this job is to try and prevent me from dying. I know that he was asking out of curiosity because he hadn’t treated a patient with EDS before, but there’s a time and place. As I said above. there are 13 different types of EDS and vascular EDS can be life limiting due to the possibility of organ and vessel rupture. Life expectancy is not usually shortened with other forms of EDS. That said, conditions that are co-morbid with EDS can impact on life expectancy. If you have gastroparesis for instance and have intestinal failure as a result, the sad fact is that death from a lack of nutrition can and does happen. EDS can, in many cases, cause progressive deterioration and degeneration of connective tissue in joints, spine, eye, gums, teeth, internal organs, and central nervous system. No one with EDS knowns what the future holds and emotionally, that is a big thing to deal with.

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How to Talk to Someone With Depression

Depression can really change how a person thinks and perceives information. It can cause friction between friends and family members and often lead to a person feeling even more isolated. Depression is a mental illness that can affect anyone. It is not something that you can simply snap out of or a sign of weakness.

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Mental Health Foundation

Below are some ideas around talking to someone with depression and questions that might be helpful.

Ask if they have had anything to eat or drink. If not, suggest having a glass of water and have something to eat if they can manage it. Talk about healthy and quick options, to avoid carb-loading which is likely to only give a quick burst of energy. Foods that are rich in protein are good. The thought of cooking for yourself when you are deep in depression can be too much to even consider, so offer support in buying healthy and nutritious ready meals that can be shoved in the freezer and cooked easily.

At the risk of sounding like someone from a crisis team, asking someone if they have had a bath or shower when they are feeling awful is sometimes an idea, providing the person is able to keep themselves safe in doing so. Self care is terminology which is thrown around by crisis teams very readily, but there’s no denying the fact that feeling clean is going to make you feel slightly better about yourself than being unclean. I get it, I really do, the energy and effort involved in having a bath or washing my hair means that it’s the last thing I want to do when I am depressed, but I try to remind myself that I deserve to be clean and I deserve to look after myself.

Again, at the risk of sounding like I am regurgitating snippets from the crisis team, encouraging someone to stretch their legs and move from their bed or the sofa is a way of showing that you care. I am not for one moment suggesting that you need to be walking miles in the picturesque countryside or be running a half marathon, but a quick walk around your immediate local area is enough to get those endorphins zipping around. Gentle exercise in the home is an option if you can’t face leaving the house, you can find lots of simple home exercise routines on Youtube, if you can’t face watching a highly positive and energetic fitness blogger and the NHS has home workout videos which are easy to access and follow.

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A big part of depression is shutting yourself away from people and not engaging with friends and family. This is definitely something that I do and I am fortunate to have a really support group of people around me, to check in with me and talk rubbish to distract me from the mess inside my head. Encouraging people to talk can be with friends or it could be with a medical professional. Ask if they have had any medical input and find out when the next planned contact will be. You can work out if you should be encouraging them to make contact with a professional sooner, or, if it can wait, suggest writing things down, to share next time there is contact. Don’t be afraid to offer physical contact, like hugs, but know that this doesn’t suit everyone. Whilst I love a good hug or cuddle, I know that for some people, this is their idea of hell, so knowing what works for the individual person is important. Pets are also a value source of companionship and support.

Ask if they have had any changes in medication and if they are taking their medication are prescribed. New medication can really mess with your head, especially in the early days when withdrawal is a risk and side effects of new drugs are more prevalent. Make sure that they are safe, as some medications increase suicidal thoughts and ideation and then wait it out with them. If things don’t improve after a few weeks, suggest contacting their GP.

If you don’t know what to say, just say that: tell your friend that you are there for them. As a humans, we want to immediately have the answers and be able to solve every single problem that we are faced with but sometimes, that isn’t possible. Let them know that you’ll be there, don’t accuse, threaten, blame, or make light or joke about how they might be feeling. Reminding a person that you care is one of the most important things that you can do. Knowing that you’ve got someone holding you up and fighting the beast alongside you is less isolating and is a reminder that you matter.

It’s worth remembering that what works for one person might not work for another. Asking how you can help and if there is anything in particular that would be useful is another way of showing that you care. Not everyone is open to the offer of help, not everyone knows what help they need and what you think is helpful and what they think is helpful could be two very different things.

Even if you can’t relate to a person’s problems or they seem insignificant, don’t belittle how they are feeling. Try to resist solutions that might seem simple to you. Most importantly, don’t make judgements on how they are feeling. Everyone’s feelings are valid and we all react in differing ways to situations. That doesn’t make us wrong, weak or defective, it makes us human.

Lockdown and Mental Health

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Staying indoors has become the norm in the UK, with the country adapting to life in lockdown due to the coronavirus outbreak. The government imposed the lockdown on the evening of Monday 23th March, meaning that we couldn’t leave our houses, except for permitted times such as one outing for daily exercise and essential travel, like going to work if you’re a key worker and going to medical appointments. The way of life in the UK changed very quickly, we couldn’t (and still can’t, at the time of writing this) visit the houses of friends or family, use leisure facilities, visit attractions, gather in large groups spend time outdoors, unless it was for exercise.

Whilst lockdown in the UK hasn’t been as strict as in other countries, it has been completely different to life as we usually know it. As someone who thrives on routine and structure, suddenly not being able to work despite being a key worker, see my friends and extended family or use a leisure centre was incredibly difficult and I know that I’m not alone in feeling like that. I started isolating before it was enforced, due to underlying health conditions and I am now on week ten of isolation/lockdown and whilst it was hard towards the beginning, I am getting used to this being my normal. Sometimes it feels like a bit of a slap in the face, after spending over two years out of work and effectively very isolated because of my health, to now being forced into isolation again, when my physical health is pretty good and I was back in a working environment.

We are now at a point where lockdown restrictions are easing but it is going to take a long time before we are back to normal. Social distancing is set to last months and restrictions could be put back in place if cases start to peak again.

So how am I staying sane?

I didn’t cause COVID-19 and I can’t take it away. As much as I joke about my frustration about it being caused by someone eating an undercooked bat, there is so much more to it being a global pandemic than that and it’s can’t be simplified. I like to be able to control every single aspect of my life and going through lockdown has taught me that sometimes, I can’t be in control and that I need to just go with the flow. I don’t know when I’ll be able to go back to work, I don’t know when medical appointments will resume and return to normality, I don’t know when I will next be able to hug my friends, but everyone is in the same position. I could make myself unwell, stressing over things that I can’t change, or I can accept it and deal with things as they come along. No one can easily fix the situation we are in, sure people can stay home, wash their hands, social distance, use common sense and not go round licking lamp posts but that isn’t going to change things over night. Life will be very different for everyone as a result of COVID-19 and we will need to adjust to that new normal.

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My support system changed rapidly as infection rates spiked. I still have therapy but it’s over Skype and I still speak to my GP but it’s on the phone. As lonely as isolation can be, I know that the support is still there, just in a different format. I’m not having any physio which is hard and I’m not seeing my support worker, as the service she is attached to has temporarily closed. I’m not going to lie, some days are hell: I get angry and I’m probably not a very nice person to be around. Some times I am an anxious mess. Other times, I plod along, doing what I can to make the days easier and taking little steps to keep my brain occupied. Asking for help is not selfish, it is normal to be finding life hard to deal with right now, so we need to show ourselves a little kindness and compassion. And if someone is in a bad mood and is more snappy than usual, or cries over something stupid, don’t take it personally. Give them a virtual hug and remind them that they’re not alone.

One of the biggest things that I’ve come to realise is that I need to be realistic. Like I said above, some days I feel like I can take on the world, other days, I would happily stay in bed and tell everyone (but mainly BoJo) to fuck off. Reading has been the one thing that I’ve been able to fall back on during lockdown, I can happily spend day after day reading, but I accept that shutting myself away in a fictional world isn’t always what is best for me. Or my eyes. That said, I do have days when I’m not in the mood to read and I’ll be honest, initially, I would beat myself up for that, as though reading a book in a day was the marker of success. Trying to stick to some form of routine has been hard, but as much as possible, I make sure I’m up at the same time every day, I do some exercise, read, talk to friends, do some of the endless adult or medical admin and go to bed at a sensible time. I keep my room as just somewhere to sleep and make sure I spend daytimes in other rooms of the house, or the garden, to try and vary my environment as much as possible.

I’m not saying for one moment that I have completely got this whole lockdown thing sorted. Ask me tomorrow and I’ll probably be fed up because I want to go swimming and because I can’t see my friends, but actually, I’m doing okay. This isn’t forever.