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.
Hyperbole and a Half – Allie Brosh
The Truth Pixie – Matt Haig
Living With the Enemy – Ray Owen
The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
Miranda’s Daily Dose of Such Fun – Miranda Hart
Five Feet Apart
Brain on Fire
We Are Visible
This Is Not What I Ordered
Chronic But Ironic
Feminists Don’t Wear Pink (Scarlett Curtis)
Shagged, Married, Annoyed (Rosie and Chris Ramsay)
Amy’s Life/Amy Lee Fisher
Life With Stripes
Health Care Esstentials
Dry shampoo (Batiste or Colab Dry Shampoo)
Body Shop Almond Milk Body Yogurt
Au Lait | Scottish Fine Soaps – Body Butter
Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
Amie Petal Perfect – Cleansing Micellar Water
Snug as a Bug
Hot water bottle
A good pillow (I have a V pillow and a memory foam pillow)
Odds and Sods
Large medication box
A support system (friends, family, health care professionals, people who just get it)
Technology to keep connected to the outside world
A bag – fashionable but sensible. Mine is similar to this
Mobility aids (crutches, wheelchair, cane, walkers etc)
NB – If you aren’t familiar with the Spoonie Theory, click here
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
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!
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.
I 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.
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.
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.
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.
I recently wrote a post about how to support someone with depression. It made me realise that talking about how to support someone with chronic illnesses would be worth touching upon too. It can be really hard to grasp the reality of not ever getting better, unless you’ve actually gone through it. And very often, being hit with cliched platitudes can leave us feeling worse. It’s really important to note that illness and pain are not character defects or signs of weakness. People living with autoimmune or other chronic illnesses are proof that the human body is a fallible system. Life is imperfect and our bodies are too. So below are some tips on how to support people with chronic illnesses.
Believe them. So often, people with chronic illnesses, especially if they are invisible, are told that it’s all in their head and spend years fighting for validity and a diagnosis. A lot of the time, a person might look okay, but that doesn’t change the fact that they could be in a lot of pain and it definitely does not mean that they are suddenly cured. People frequently have to put on a brave face and that might include a full face of makeup and being up and dressed. Some chronic illnesses are rare, meaning that doctors don’t always have the specialist knowledge around conditions and patients become the experts. Unfortunately, instead of admitting that they aren’t always knowledgeable, doctors can become dismissive Patients are branded as being dramatic at best and hypochondriacs at worst. Symptoms are brushed aside as being psychosomatic and it isn’t uncommon to be silenced with anti-depressant medications.
Listen to what they’ve got to say and actually hear them. Asking how a person is can make such a huge difference because it shows acknowledge of their condition. They might not always answer honestly, often saying “I’m fine” is a lot easier than saying “I’m fed up, I’m in a lot of pain, being awake is painful and I just want to go back to bed and hide from reality” but in asking, you’re opening the door and allowing that conversation to take place. It’s really easy to not be an idiot and inconsiderate. Reaching out to someone is easy, but be genuine about it. Remember that you are not their therapist and don’t try to be one. Chronic and mental illnesses often do go hand in hand so don’t blur the boundaries between friendship and therapy. Constant and repetitive talking isn’t always needed, follow their guidance and know what is best for them.
Find out more about their illnesses. When I first became ill, it meant the world to me when a friend said “I’m going to research more about xyz” because it showed they cared. You’re not going to have all the answers and you don’t have to become an expert, but understanding that pain isn’t going go away and having an idea about what is faced in day to day life means that people feel less isolated and alone. Don’t pretend that the illness isn’t there: it is very prevalent is their lives and it isn’t going to go away if you ignore it.
Don’t give up on them or abandon them when times are tough. Constantly feeling unwell can turn people into a bit of a bitch. Think about having flu all the time combined with widespread pain, whilst trying to walk through treacle backwards. It can be a really shit situation. Losing friends is an inevitable part of dealing with a chronic illness but that doesn’t make it any easier. Knowing that you’re too complicated to deal with is hard to hear and guess what? People who are chronically ill do not choose that lifestyle. It’s a lot harder for the person unwell than it is for those around them. Pick up the phone, send a text, send a cute card in the post, offer to help in practical ways. Would they like it if you turned up with coffee? Or some snacks to share whilst watching a trashy film? Stamps for letter-writing? If you do bring a little something, make it nice. I think people tend to skimp on gifts for chronically sick people: they aren’t going to get better so it can become expensive over time. Remember, a gift does not have to cost money.
Ask how you can help. But understand that there might not be a simple answer to this. I know from experience that trying to juggle being ill and my life can be really hard and I don’t always have the brain capacity to think about how other people might be able to help me. Use your brain and think about what might be helpful. Would help with a food shop be useful? Think about specific things that might help.
Don’t belittle their experiences or their treatment plans. Different things work for different people. Some people will respond well to traditional medications, whereas other people will lean towards more holistic therapies. And that’s okay. Criticising treatments is pretty toxic and incredibly unhelpful. Everyone gets tired and everyone gets ill from time to time but that is not the same as having a lifelong, enduring, chronic illness. Don’t confuse the two.
When you’re in pain, it feels awful having to let your loved ones down but it feels unbearable to not be believed or to be criticised when you are trying your absolute best. Chronic illnesses form a huge part of people’s lives and it’s understandable that people will talk about them, a lot.
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.
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.
A few years ago, in 2016 to be exact, I wrote a blog post about 30 things I wanted to do before the age of 30. I am now two and a half years away from the big three-oh (OHMYGOD) so I decided to look back on those goals and do an update.
1) Complete a masters degree.
I have applied for a masters degree and if all goes to plan, I should have finished by the age of 31, so I’m counting that as in process.
2) Work in a role which supports young people with mental illnesses.
Done, since leaving university, all my jobs have been supporting young people with social and emotional needs in some capacity and it continues to be my plan for the future.
3) Travel the world.
This hasn’t been so successful. I have traveled in the past four years but nowhere near as much as I was hoping. As I became more unwell, my priorities changed and I realised that as much as I want to explore new places, I also like being near an English speaking hospital or somewhere with a good healthcare system. I’ve realised that owning my own house is also higher up on the list of priorities so when I’m able to save money, it goes towards that.
4) See the Northern Lights.
See above. Although I do plan on going to Iceland one day because I think it is a beautiful country. Maybe when Rona has stopped ruining everyone’s lives.
I am literally the most single person you could find. I am happily a cat lady and not sure how my cat would cope if I started sharing a bed with someone else. That said, I would like to marry and probably have children, just right now that’s not something I’m focusing on. If it happens, that’s great but equally, I’m not actively looking for Mr Right.
6) Have children (hopefully).
As above. I wrote a blog post recently, about frequently asked questioned that people with EDS get asked and I touched on the baby and child thing in that. In short, yes, I would like children, but I have to consider the risks to myself, but more importantly my child. EDS complicates things a bit. I’ve said more about the whole thing here.
7) Have my own house.
Twenty-three year old me was very naive about the cost of Adult Life. I’m in the process of saving and am considering selling a kidney to fund a deposit. Joking, joking. I like to torment myself by looking at Right Move and to admire all the houses that I can’t afford (aka so all the houses) but I really hope that by thirty, I will be in a better financial position to be able to afford my own little abode.
8) Be financially stable.
To be fair, I would say that I am fairly financially stable. I was on universal credit for two years and it really taught me about the importance of budgeting, although even before that, I was pretty good with money. I don’t take money for granted and I love the feeling of satisfaction when I’m able to buy something that I have saved a long time for. Right now, I’d much rather save money than spend it, however that doesn’t include buying books or anything from the Body Shop.
9) Sing on a West-End stage.
As if I’d ever really have the confidence!
10) Sky dive.
I plan on doing this, as soon as it is possible! As I’ve said in other posts, I spent over six months as a psychiatric day patient in 2019 and I really want to give back to the day hospital to say thank you. The building is old and the interiors are more than a little run down and I would love to be able to contribute to a more cosy atmosphere, making it feel even more like a safe place. Watch this space!
11) Bungee jump.
I think I was being a bit over-optimistic here. This would probably break me.
12) Complete a half marathon
Really, Laura?! I have no desire to do this.
13) Complete a triathlon.
I haven’t completely ruled this one out. I found out that there is a Superhero Triathlon which is specifically for people with disabilities and I think I’d to complete it.
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.
A slightly delayed monthly favourites blog post for April, if you’ve read my recent post about depression, you’ll know what’s been happening in my life and where I’ve been. Anyway, that aside, April has been and gone and it feels like 2019 is flying by, or is that just me?
Over to what I’ve loved in April.
My standout book from April has got to be Internment by Samira Ahmed. I’ve been telling anyone who will listen to me to read this book. Set in a near future United States of America, seventeen year old Layla is forced into an internment camp for Muslim-Americans along with her parents. Layla begins a journey to fight for freedom, leading a revolution against the internment camp’s Director and his guards. This book is chilling and powerful in equal measures, mostly because the plot could become a very real prospect if social divisions escalate. The real terror of Internment is how close it is to the present-day United States, with the narrative making it clear how few additional nudges are needed. In addition, there is a deep-running theme about complicity and about how not standing up to something can be the same as letting it happen. This is not only how non-Muslim people either allowed or actively voted for the laws and internment camp seen in the novel, but also how people can turn on those who rebel.
Another bookish favourite from April is My Sister, The Serial Killer by Oyinkan Braithwaite. The title makes the book pretty self-explanatory. Korede’s dinner is interrupted one night by a distress call from her sister, Ayoola, she knows what’s expected of her: bleach, rubber gloves, nerves of steel and a strong stomach. This’ll be the third boyfriend Ayoola’s dispatched in “self-defence” and the third mess that her lethal little sibling has left Korede to clear away. She should probably go to the police for the good of the menfolk of Nigeria, but she loves her sister and, as they say, family always comes first. This book was addictive, leaving the reader with the question of who is more dangerous? A femme fatale murderess or the quiet, plain woman who cleans up her messes? I never knew what was going to happen and I love that in a book. Highly recommend, although the Nigerian language intertwined throughout the book got a little confusing at times.
Me Mam. Me Dad. Me. by Malcolm Duffy is a humorous and heartbreaking debut novel with the fresh, funny, honest voice of a 14-year-old Geordie lad recounting the trials and tribulations of family life and finding first love. The literacy ward nominations alone for this book speak volumes: Waterstone’s Children’s Prize 2019 Shortlisted, Sheffield Award 2019 Shortlisted and Carnegie Medal 2019 Nominated to name a few. Danny’s mam has a new boyfriend. Initially, all is good – Callum seems nice enough, and Danny can’t deny he’s got a cool set up; big house, fast car, massive TV, and Mam seems to really like him. However, cracks begin to show in Danny and his man’s new life and they cannot be easily repaired. As Danny’s life spirals out of control, Danny does the one thing that he can think of and find his dad. Malcolm Duffy has done an amazing job with his book which will appeal to so many readers on so many different levels.
Having spent the majority of my time at home (in pyjamas) you would think that I have loads of film and TV recommendations. However, I am a creature of habit and will happily rewatch Happy Valley, Line of Duty and Silent Witness, to the point that I know the plots of by heart. That said, I finally finished watching Broadchurch, which I started watching last year but then never finished. Honestly, by the time I got half way through series three, I was a little bored but it still provided plenty twists and turns that I wasn’t able to predict.
I also sat down and finally watched The Hate U Give, based on the book by Angie Thomas, of the same name. I loved the book more than I can put into words, I very rarely cry at books or films, but both the book and film has me crying in sadness and anger at the unjustness of the situation being played out. Sixteen-year-old Starr lives in two worlds: the poor neighbourhood where she was born and raised and her posh high school in the suburbs. The uneasy balance between them is shattered when Starr is the only witness to the fatal shooting of her unarmed best friend, Khalil, by a police officer. Now what Starr says could destroy her community. It could also get her killed. Inspired by the Black Lives Matter movement, this is a powerful and gripping film about one girl’s struggle of justice and equality.
After a lot of deliberation, I watched The Disappearance of Madeleine McCann, after a number of people recommended it to me. I’m not sure how I feel after watching it, it certainly showed various things in a different light and it gave a balanced account of what happened. That said, it didn’t offer any new facts or insights. Unsurprisingly, The McCann family refused to take part in the series and asked those around them not to either, which leaves me feeling that the documentary itself wasn’t a necessity, more recapping of an awful situation that doesn’t have an end.
I’ve been really struggling with restless legs/arms/body and muscle spasms, due to some of the medication I’m currently taking. I was given a couple of suggestions of things to try, aside from the midnight baths and diazepam which I had been relying on (not an ideal combination…I don’t advise it!), including a weighted blanket and various prescribed medications. However the suggestion that came up the most was magnesium, specifically magnesium oil spray, which you spray on the soles of your feet. It hasn’t completely cured the spasms but it has made a difference.
What did you love over April, I love hearing your recommendations!
So it’s been one whole year since I was signed off work and started the sole destroying task of applying for Universal Credit. If you’re a long term reader, you might remember my Open Letter to Theresa May, I was really reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits and honestly, I felt a level of shame over applying. My usually proud front was shattered by admitting that I needed this financial help, but my health comes first. That was what I told myself.
And my God, was my front shattered. I had opened up about my health in a way that I never had before. I was begging strangers to take pity on me, in the hope that the application process might be made a little bit easier. Only, they didn’t take pity on me. Honestly, I felt a bit like a criminal. I was warned about sanctions if I couldn’t attend appointments if I was ill. Let’s remember at this point, that the whole reason that I was applying was because of how unwell I was and still am. I was asked when I was going to get better, because the government doesn’t seem to understand the concept of chronic or life long conditions.
I felt and still feel like a failure because I can’t work. I feel ashamed that I am ill, even though now, a year one, I am able to accept that life’s a bitch and doesn’t always go the way you want it to.
Anyway, after the initial stress of the first few months of the application, things calmed down a little. I had my work capability assessment and thankfully, the person leading the assessment had an ounce of common sense and agreed that I wasn’t fit to work. That was until. October, when my payments were stopped for no reason. I have real anxiety issues about going into the job centre because of the bad experiences that I’ve had there, but nonetheless, in I went to find out what had happened. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.
I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I required at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage your money when you’re not receiving the money in the first place.
This leads me to now. I think maybe that I had become a little bit complacent when it came to Universal Credit: nothing has happened to offend me in a few months and I thought that things would remain that way. I went into the job centre to hand in my latest fit note and was told that my payments had been stopped and that I was being sanctioned.
I cried. A lot. The past month has been awful, I’ve been really unwell (more than normal) and the last thing I needed was finding out that my financial security was at risk. The person I saw at the job centre wasn’t able to reinstate my payments and was only able to tell me that it looked like I’d missed a phone call. I rang the Performance Centre and was told that my payments had been stopped because I’d missed a review phone call. Yes, I had missed a phone call, but I had also notified them that I was in hospital at the time of the phone call and therefore unable to take the call, and please could it be rearranged.
I then had to wait a week for the actual review phone call. There was me thinking that it would be to ask me if there had been any changes to my health etc but no, they wanted to know if I was still single (as a pringle, for what it’s worth) and if I had any savings or investments. My favourite part was when they asked me if I was receiving a World War Two pension. Dude, I wasn’t even alive then…
Whilst none of this is especially dramatic, it really knocked me. There isn’t one single aspect of Universal Credit that is easy to understand or logical. It baffles me that they have such poor customer service skills, when they are dealing with some of the most vulnerable people in society. There have been so many occasions over the past year when the process of Universal Credit has made me more unwell than I was already. It really seems like the government will jump upon the smallest thing as a reason to stop payments.
Until that changes, people will still be failed. They will still be struggling to pay rent and afford food. They will still feel penalised for being unwell and genuinely unable to work and I’m ashamed to live in a country whereby the government think that is okay.